tag:blogger.com,1999:blog-66360981264191693382024-03-14T08:46:47.924+00:00Stephen Cobb's Personal BlogStephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.comBlogger664125tag:blogger.com,1999:blog-6636098126419169338.post-15597139721095394402023-09-06T14:00:00.005+00:002024-01-14T15:23:57.566+00:00WELCOME<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw_ObdGSemqgH8pCsdED5_a-iSZvmZMDFxtkV6li94pjwuUmWez9wstUj35lU9kz0zkZZH2LO2vYBOt4MZifrfHZV8k3h6tyUuUB2KbNgoyS2XVJ6Lg_T4VFaAjX6kzT2gTEzFwJqZxers/s763/lola-and-me.png" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="556" data-original-width="763" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw_ObdGSemqgH8pCsdED5_a-iSZvmZMDFxtkV6li94pjwuUmWez9wstUj35lU9kz0zkZZH2LO2vYBOt4MZifrfHZV8k3h6tyUuUB2KbNgoyS2XVJ6Lg_T4VFaAjX6kzT2gTEzFwJqZxers/w414-h300/lola-and-me.png" width="414" /></a></div>I am Stephen Cobb and this is my personal blog. <div><br /></div><div>This blog was set up in 2005 but I didn't start regular blogging here until 2006. That's because I had another blog, also started in 2005, where I covered my main interest back then: <a href="https://scobbs.blogspot.com/">information security</a>.</div><div><br /></div><div>Over time, this here blog became my place to talk about things other than security. These include my dealings with several medical conditions; like my <a href="https://www.cobbsblog.com/2013/06/cobb-got-conn-probably-but-i-go-through.html">primary aldosteronism</a> and <a href="https://www.cobbsblog.com/p/bcc.html">basal cell carcinoma</a>, also my partner's <a href="https://www.cobbsblog.com/2008/11/what-am-i-thankful-for-diagnosis-of.html">hemochromatosis</a> and <a href="https://www.cobbsblog.com/2023/09/giant-cell-arteritis-and-menopause.html">Giant Cell Arteritis</a> (UK readers can just add an 'a' after the 'e' in the hemo words).</div><div><br /></div><div><h3 style="text-align: left;">Brief notes on 70+ years of life</h3><div>I was born in a house in the medieval city of <a href="https://en.wikipedia.org/wiki/Coventry" target="_blank">Coventry</a>, in the middle of England, in the middle of the last century, to parents who survived heavy aerial bombardment in the global conflict known as World War Two, which ended seven years before my life began. </div><div><br /></div><div>After going to university—first in Leeds and then in Canada — I travelled the world for several decades before moving back to the city of my birth with my partner and our adopted cat, Lola (seen above, the one not wearing glasses).<div><div><br /></div><div>My partner of 38 years, the phenomenal Chey Cobb, is a US citizen, legally resident in the UK. I am a citizen of both the UK and the US. We have both spent, and continue to spend, a lot of time researching how humans create and confront technology risks and health challenges. I write about my research for a variety of websites and publications, like:</div><div><ul style="text-align: left;"><li><a href="http://scobbs.blogspot.com/">Cobbs on Security</a>: cybersecurity articles, some written with Chey</li><li><a href="https://medium.com/@scobb" rel="noopener noreferrer" target="_blank">Medium</a>: articles on technology, policy, cannabis, and more </li><li><a href="https://www.linkedin.com/in/stephencobb/" target="_blank">LinkedIn</a>: check my "Featured" articles</li><li><a href="https://www.researchgate.net/profile/Stephen_Cobb3" rel="noopener noreferrer" target="_blank">ResearchGate</a>: curated publications</li><li><a href="https://www.youtube.com/channel/UCr0-fyGdKLoAoShnCeW5f3Q" target="_blank">YouTube</a>: narrated articles, personal views</li><li><a href="https://technologyandsociety.org/smarter-homes-for-the-elderly-a-reality-check/" target="_blank">IEEE Technology & Society</a>: perspective on technology</li></ul><div>This blog is where I write about more personal stuff, like: the fact that I'm retired, although I'm still open to interesting projects; my plans to publish another book, but I'm not sure when; my attempts to raise awareness of the medical problems which disabled my partner; the role of registered carers and how it can be supported; my hopes for the demise of the patriarchal medical establishment that continues to fail women so badly. </div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZY4SVWy5FU4I1CqNOc6QSW1l2SGUAwafGWqtQrVpV6P2QKJDkWc3poBAKGiIKiYMbSBF9L_11lmPMcPZGHXFvHFvQFfdImeAhMR5iw85MDyUx87SKw3XjXhtqDPtcTe8ZBmwnKlArm09K/s1440/classic-GLASS-1440-1020.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Photo of a Minolta lens on my Olympus camera" border="0" data-original-height="1020" data-original-width="1440" height="283" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZY4SVWy5FU4I1CqNOc6QSW1l2SGUAwafGWqtQrVpV6P2QKJDkWc3poBAKGiIKiYMbSBF9L_11lmPMcPZGHXFvHFvQFfdImeAhMR5iw85MDyUx87SKw3XjXhtqDPtcTe8ZBmwnKlArm09K/w399-h283/classic-GLASS-1440-1020.jpg" width="399" /></a></div><br />On a lighter note, Chey thinks I should have a hobby to take my mind off things, so I'm been trying "classic glass" photography: using lenses from old 35mm film cameras to take pictures with modern digital cameras (for example, the Minolta lens on my Olympus camera shown here). </div><div><br /></div><div>On a more serious note, I feel the need to use some of my "free" time to contribute to society. So in addition to sharing my knowledge about thwarting digital criminals, I serve on the board of a charity, <a href="https://www.carerstrusthofe.org.uk/" target="_blank">Carers Trust Heart of England</a>. </div><div><br /></div><div>I also do driving jobs for our local hospital as one of the hundreds of <a href="https://www.uhcw.nhs.uk/where-careers-grow/volunteers/" target="_blank">UHCW Volunteers</a>. As I travel around Warwickshire collecting and delivering patients I engage in another hobby: sampling independent coffee shops and their menus.</div><div><br /></div><div>Fortunately, I still find some time to continue my research at the nexus of ethics and technology. I am currently exploring the harm caused by abuse of technology, which I have <a href="https://zcobb.medium.com/do-online-access-imperatives-violate-duty-of-care-19ac155e8857">written about here</a>. and <a href="https://youtu.be/8rsy4t8iWBs?si=oPFBnPhugD2q9gVx" target="_blank">talked about here</a>, on YouTube.</div><div><br /></div><div>If you want to contact me, you can use the form on this page or find me on <a href="https://www.facebook.com/stcobb" target="_blank">Facebook</a> or <a href="https://www.linkedin.com/in/stephencobb/" target="_blank">LinkedIn</a>. </div></div><div><br /></div><div><b>Note:</b> I am aware of some formatting issues and missing images in the older articles on this site—a side-effect of moving this blog from WordPress to Blogger—I'm fixing them as and when I can.<br /></div></div></div></div>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.comtag:blogger.com,1999:blog-6636098126419169338.post-83214736828259807482023-09-05T18:30:00.135+00:002023-09-18T11:55:50.600+00:00Giant Cell Arteritis: Watch out for this nasty disease if you're female and over 40<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIrwD3LOX_U8k9jLyTYopYpFwti2PhHSMk88inSaaOL1JD_wMAxt22p5QOYECkDranTKbrlu0UtJZ1hiS0D3KtKdPBzXXYS1IGi3SxeYWJAN7xo13933VzQG4Q5rUPjgUohfEeIlIhbQ79z5qiBJsPhK-6z1DLuB1HVYW-NODsmv881dzHv3OloXPjvWGt/s2214/anger-pain-woman.png" style="margin-left: 1em; margin-right: 1em;"><img alt="Photo of woman in distress by Camila Quintero Franco. Thank you for making this extraordinary photo available on @unsplash" border="0" data-original-height="1410" data-original-width="2214" height="373" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIrwD3LOX_U8k9jLyTYopYpFwti2PhHSMk88inSaaOL1JD_wMAxt22p5QOYECkDranTKbrlu0UtJZ1hiS0D3KtKdPBzXXYS1IGi3SxeYWJAN7xo13933VzQG4Q5rUPjgUohfEeIlIhbQ79z5qiBJsPhK-6z1DLuB1HVYW-NODsmv881dzHv3OloXPjvWGt/w583-h373/anger-pain-woman.png" width="583" /></a></div><br />Women in their 40s or older need to be aware of a condition called giant cell arteritis or GCA. This article explains why. I'm not exaggerating when I say that knowing about GCA could save someone's sight, or even their life.<p></p><p>GCA is also known as temporal arteritis because, when you have it, "the arteries, particularly those at the side of the head (the temples), become inflamed." As <a href="https://www.nhs.uk/conditions/temporal-arteritis/" target="_blank">NHS England</a> states, GCA is "serious and needs urgent treatment."</p><p>What does GCA do? It causes multiple problems, including: "persistent, throbbing headaches, tenderness of the temples and scalp, jaw pain, fever, joint pain, and vision problems." That's according to the <a href="https://www.vasculitisfoundation.org/about/" target="_blank">Vasculitis Foundation</a>, which echoes the NHS when it warns: "Early treatment is vital to prevent serious complications such as blindness or stroke."</p><p>But wait, there's more: GCA often causes <b><i>drenching night sweats</i></b>, a symptom that can also be caused by menopause. And that's why women over 40 need to know about GCA. Sadly, far too many doctors tend to dismiss any symptoms suffered by women over 40 as "just menopause." And some doctors will say that to women in their 50s, 60s, and even 70s (for menopause neophytes, <i>the menopause</i> as the Brits refer to it, is over by 50 for most women).*</p><p>To be clear, most cases of GCA occur in people over 50, and the "peak group" is those between the ages of 60 and 80 years. That's according to <a href="https://pmrgca.org.uk/information-and-advice/what-is-gca/#:~:text=About%20giant%20cell%20arteritis%20(GCA)&text=GCA%20exclusively%20afflicts%20people%20over,is%20most%20common%20in%20Scandinavians." target="_blank">PMRGCAuk</a>, the leading GCA support organization in the UK.</p><h2 style="text-align: left;">It's not always menopause</h2><p></p><div class="separator" style="clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaitY9ntFVKmD8ka6NEC8CbdQcwIyiE07t7JYRT5qj607aQviuAnFpOLYOfifclG79LYq67BxMfY_7X_tdDlKdVjQ7y81rZRqqufQuI_QY5l3ODKydkckcLRHrd0SO8W9jQkOpmgJsB37N5Af1fVAtJyXqFH0A5M0aISLg0emvPUleWZCFE1rqE5N-wB-9/s1352/a-group-of-women.png" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Image by @Ageing_Better from their age-positive image library" border="0" data-original-height="845" data-original-width="1352" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaitY9ntFVKmD8ka6NEC8CbdQcwIyiE07t7JYRT5qj607aQviuAnFpOLYOfifclG79LYq67BxMfY_7X_tdDlKdVjQ7y81rZRqqufQuI_QY5l3ODKydkckcLRHrd0SO8W9jQkOpmgJsB37N5Af1fVAtJyXqFH0A5M0aISLg0emvPUleWZCFE1rqE5N-wB-9/w385-h240/a-group-of-women.png" width="385" /></a><span style="text-align: left;">If you know many women who are nearing or have turned 50, you may already know that this demographic often gets a particularly raw deal when it comes to healthcare. This is a result of two factors. First, there is a massively patriarchal bias throughout the medical world. Second, multiple diseases produce symptoms similar to those of menopause. </span></div><p></p><p>I found this to be true, and truly problematic, when I started researching something called hereditary hemochromatosis about 15 years ago. This genetic condition can cause menopause-like symptoms in women who have gone through menopause; but many doctors have been taught—erroneously—that hemochromatosis is a young man's disease, even though older women can suffer and die from it. The result? Hemochromatosis in older women is often missed until it has caused them serious damage. (See <a href="https://www.hemopause.org/" target="_blank">the "hemopause" website</a> for more details). </p><div style="text-align: left;">When it comes to GCA, consider the main early symptoms, as described by <a href="https://pmrgca.org.uk/" target="_blank">PMRGCAuk</a>: "headache, feeling generally unwell, weight loss, drenching night sweats and loss of appetite." You can well imagine a woman going to her doctor with those symptoms and being told one of the following:</div><p></p><ul style="text-align: left;"><li>It's just menopause</li><li>It's just perimenopause</li><li>You're just post-menopausal</li><li>You're just rundown/overworked/stressed</li></ul><p></p><p>What the doctor should do is ask the patient if they have any:</p><p></p><ul style="text-align: left;"><li>Pain over the temples</li><li>Double vision, loss of vision, or pain behind your eyes</li><li>Difficulty opening your mouth, or pain when eating</li><li>Scalp pain or tenderness</li></ul><p></p><p>Those are four indicators which, when taken with the initial symptoms, suggest that the patient may have GCA. (<a href="https://medicinetoday.com.au/mt/2021/august/feature-article/scalp-pain-and-tenderness-early-features-temporal-arteritis#:~:text=In%20patients%20with%20TA%2C%20scalp,which%20are%20often%20exquisitely%20tender." target="_blank">Medicine Today</a>) This suggestion needs to be taken very seriously, given that untreated GCA can cause blindness and stroke if not treated swiftly. Heavens knows how many women with those symptoms have been fobbed off with: "it's just the change."</p><h2 style="text-align: left;">Further GCA Information</h2><p><b>How serious is GCA? T</b>his article written about 10 years ago for doctors in New Zealand is quite clear on how seriously GCA needs to be treated: "Giant cell arteritis, also referred to as temporal arteritis, is a form of vasculitis which predominantly affects older people. It must be treated urgently, as it is associated with a significant risk of permanent visual loss, stroke, aneurysm and possible death." (<a href="https://bpac.org.nz/bpj/2013/june/arteritis.aspx" target="_blank">Best Practice Advocacy Centre New Zealand</a>) </p><p><b>Who diagnoses GCA? </b>If you have a good GP (UK) or primary care doctor (US) they may recognize the early signs of GCA and refer you to a rheumatologist. If you are seeing an eye doctor because of pain in one or both eyes, or a sudden and significant reduction in vision, and they can't find a cause for these symptoms within your eyes, they may suspect GCA and refer you to a rheumatologist.</p><p><b>A more scientific description</b>: "Giant cell arteritis (GCA), also called temporal arteritis, is an inflammatory autoimmune disease of large blood vessels. Symptoms may include headache, pain over the temples, flu-like symptoms, double vision, and difficulty opening the mouth. Complications can include blockage of the artery to the eye with resulting blindness, as well as aortic dissection, and aortic aneurysm. GCA is frequently associated with polymyalgia rheumatica. (<a href="https://en.wikipedia.org/wiki/Giant_cell_arteritis" target="_blank">Wikipedia</a>)</p><p><b>Illustrated medical deep dive</b>: Highly technical article, <a href="https://link.springer.com/article/10.1007/s11916-022-01075-1" target="_blank">Giant Cell Arteritis: A Case-Based Narrative Review of the Literature</a>. </p><p><b>GCA is a form of vasculitis:</b> "Vasculitis is a family of nearly 20 rare diseases characterized by inflammation of the blood vessels, which can restrict blood flow and damage vital organs and tissues." <a href="https://www.vasculitisfoundation.org/education/forms/giant-cell-arteritis/" target="_blank">Vasculitis Foundation</a></p><p><b>Who gets GCA and why? "</b>GCA is the most common form of vasculitis in older adults, affecting people over 50 years of age, with an average onset of 74 years of age. Women are more than twice as likely to get GCA than men. The condition is mostly seen in people of Northern European ancestry and is rare in other ethnic groups such as Asians and African Americans. GCA prevalence is estimated at 278 per 100,000 people in the United States over the age of 50.</p><p><b>Beware of rare:</b> The word <i>rare</i> can be tricky. For example, both GCA and hemochromatosis are said to be "rare in people who are not of Northern European ancestry." But people who self-identify as Asian and African American may still get GCA. Also, GCA is also said to be rare before 50, but there are younger people who have it. Remember this, just because textbooks say X is rare, doesn't mean you don't have it or shouldn't be tested for it.</p><p><b>Facebook support group</b>: <a href="https://www.facebook.com/groups/giantcellarteritissupportgroup/">https://www.facebook.com/groups/giantcellarteritissupportgroup/</a></p><p><b>UK support group</b>: <a href="https://pmrgca.org.uk/">https://pmrgca.org.uk/</a></p><p><b>More about symptoms</b>: "The main early symptoms of GCA are headache, feeling generally unwell, weight loss, drenching night sweats and loss of appetite. Over time, the blood vessels on the side of the head can be visibly swollen with tenderness on touch. Things like brushing your hair may become painful. In more advanced cases, people may find difficulty in chewing. Typically, it is chewy foods like a piece of chicken or a hard piece of toast that cause problems. The chewing becomes progressively painful rather than being painful from the first bite. If ignored, the condition can affect either part or whole of an individual’s eyesight. Very rarely, individuals may not notice any early symptoms and develop sudden painless loss of vision." <a href="https://pmrgca.org.uk/">https://pmrgca.org.uk/</a></p><p><b>*</b> I realize that the "timing" of menopause varies greatly, but I sometimes think that statements like "menopause can last into your sixties of seventies" arise from doctors attributing symptoms to protracted menopause rather than digging a bit deeper into the diagnostic toolkit. My partner first presented to her doctor with GCA-like symptoms when she was 45. She was finally diagnosed with GCA at 70.</p><p><b>Disclaimer: </b>This page contains general information about medical conditions and treatments. This information is not medical advice, and should not be treated as such. I, Stephen Cobb, am solely responsible for the content of this website, and I am not a doctor. I'm just this bloke in love with a woman who has, like far too many women, suffered greatly, and in many cases needlessly, from the patriarchal, male-dominated, man-centered nature of medicine.</p><p>Please bear in. mind that you must not rely on the information on this page as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. If you think you may be suffering from any medical condition you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this page.</p>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-77593142214347196392022-06-26T12:14:00.010+00:002022-06-26T12:28:34.634+00:00Time to revisit high blood pressure and primary aldosteronism<p>If you or someone you love is taking tablets for high blood pressure, now would be a good time to learn more about <b>primary aldosteronism</b>, a condition that has recently been declared: "the most common specifically treatable and potentially curable form of hypertension" (<a href="https://bestpractice.bmj.com/topics/en-gb/253" target="_blank">BMJ, 2021</a>). </p><div>Indeed, if you were to ask your doctor about primary aldosteronism tomorrow, you might be told that it's rare, but that is not true. Recent advances in medical science have confirmed that PA is the most common cause of high blood pressure. If you are academically-inclined, here is one of the landmark studies of PA prevalence: <a href="https://pubmed.ncbi.nlm.nih.gov/32449886/" target="_blank">The Unrecognized Prevalence of Primary Aldosteronism: A Cross-sectional Study</a>.</div><div><br /></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkgFHsIS80-O8b3oZ_W16ISEmeghxBVcf4_-qCqVFdrBFaoH0r8tzNI75kXOd2SlNf5D1AeDy7dCvARElr3dY_I2sjOuW2Y2Me-aqRgJ7i9boJf35Jfz7S5MikLQ0IJDiRxaEXsxrGigV1U-R5r-_Di78P4I0OCVEWpHYoeUak7lOX92rmMa-Gs0NCAQ/s1200/salt-banana.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="805" data-original-width="1200" height="215" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkgFHsIS80-O8b3oZ_W16ISEmeghxBVcf4_-qCqVFdrBFaoH0r8tzNI75kXOd2SlNf5D1AeDy7dCvARElr3dY_I2sjOuW2Y2Me-aqRgJ7i9boJf35Jfz7S5MikLQ0IJDiRxaEXsxrGigV1U-R5r-_Di78P4I0OCVEWpHYoeUak7lOX92rmMa-Gs0NCAQ/s320/salt-banana.jpeg" width="320" /></a></div>Primary aldosteronism—also known as Conn's syndrome, not Cobb's syndrome—is a condition in which your adrenal glands produce too much aldosterone and this causes your body to retain sodium and lose potassium. Here are some clues that you might have PA:</div><div><ul style="text-align: left;"><li>your blood pressure is high despite taking BP medication</li><li>your sodium level is on the high side despite cutting back on salt in your diet</li><li>your potassium level is on the low side despite taking prescription potassium supplements and eating lots of bananas</li></ul></div><div>As I learned from my experience as a heart patient, untreated primary aldosteronism leads to elevated blood pressure and can increase your risk of stroke, heart disease, and atrial fibrillation. I spent several decades being treated for high blood pressure by doctors who kept telling me to eat more bananas and less salt, even as excess aldosterone was damaging my heart. (Hint: you will never eat enough bananas to defeat PA.)</div><div><br /></div><div>These days, there is a whole lot of information on this widely undiagnosed condition at the <a href="https://www.primaryaldosteronism.org/" target="_blank">Primary Aldosteronism Foundation</a> website.You can read about my experience with PA, which eventually led to my high blood pressure being cured through adrenal gland surgery, on my <a href="https://www.cobbsblog.com/p/primary-aldosteronism.html">Primary Aldosteronism</a> page, and in my previous blog posts about my adrenalectomy:</div><ul style="background-color: white; line-height: 1.4; list-style-image: initial; list-style-position: initial; margin: 0.5em 0px; padding: 0px 2.5em;"><li style="border: none; margin: 0px 0px 0.25em; padding: 0.25em 0px;"><span style="font-family: inherit;">June 4, 2013: The adrenalectomy story begins...<a href="https://www.cobbsblog.com/2013/06/sorry-i-been-out-of-touch-my-adrenal.html" rel="bookmark" style="color: #3227f4; text-decoration-line: none;" title="Sorry I’ve been out of touch (my adrenal adenoma is to blame)">Sorry I’ve been out of touch (my adrenal adenoma is to blame)</a></span></li><li style="border: none; margin: 0px 0px 0.25em; padding: 0.25em 0px;"><span style="font-family: inherit;">June 5, 2013: The Conn is on...<a href="https://www.cobbsblog.com/2013/06/cobb-got-conn-probably-but-i-go-through.html" rel="bookmark" style="color: #3227f4; text-decoration-line: none;" title="Cobb’s got Conn’s? Probably, but I go through Adrenal Vein Sampling (AVS) to be sure">Cobb’s got Conn’s? Probably, but I go through Adrenal Vein Sampling (AVS) to be sure</a></span></li><li style="border: none; margin: 0px 0px 0.25em; padding: 0.25em 0px;"><span style="font-family: inherit;">July 13, 2013: A geek worried about a robot? <a href="https://www.cobbsblog.com/2013/07/robot-or-not-robotic-surgery-and-risk.html" rel="bookmark" style="color: #3227f4; text-decoration-line: none;" title="Robot or not? Robotic surgery and risk, part one">Robot or not? Robotic surgery and risk, part one</a></span></li><li style="border: none; margin: 0px 0px 0.25em; padding: 0.25em 0px;"><span style="font-family: inherit;">August 25, 2013: Success is in sight! <a href="https://www.cobbsblog.com/2013/08/adrenalectomy-from-pain-to-promising.html" rel="bookmark" style="color: #3227f4; text-decoration-line: none;" title="Permanent link to Adrenalectomy, from pain to promising signs of progress">Adrenalectomy, from pain to promising signs of progress</a></span></li><li style="border: none; margin: 0px 0px 0.25em; padding: 0.25em 0px;">January 13, 2019: Primary aldosteronism update: <a href="https://www.cobbsblog.com/2019/01/high-blood-pressure-cure-for-some-this.html" target="_blank">High blood pressure cure? For some, this treatment is not a conn</a></li></ul><div><b><br /></b></div>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-30075742112880907492021-11-27T15:41:00.224+00:002022-03-07T14:09:04.573+00:00Prostate biopsy result: a tiny amount of non-aggressive cancer, now under Active Surveillance<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLkOSSpNP7SEYk1_Wf9-pGR1LtYV5Df6mHTeTYFQqJZVQTVhRaX5uTn5uNxUVV5tl0Rtc6WCYEYnx8pjMMfn5Qfywwtaojmf-ZD_drg8o2kd4RuZlsmOmqVnw-ORQcbvSiLEMX21T8NM5-/s2963/pathologist-image-2.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Scientist using a microscope, with thanks to the National Cancer Institute for making this photo available freely on Unsplash" border="0" data-original-height="2275" data-original-width="2963" height="272" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLkOSSpNP7SEYk1_Wf9-pGR1LtYV5Df6mHTeTYFQqJZVQTVhRaX5uTn5uNxUVV5tl0Rtc6WCYEYnx8pjMMfn5Qfywwtaojmf-ZD_drg8o2kd4RuZlsmOmqVnw-ORQcbvSiLEMX21T8NM5-/w354-h272/pathologist-image-2.jpg" width="354" /></a></div>"A tiny amount of non-aggressive cancer" is probably the best biopsy result you can get, short of "no sign of any cancer at all." <p></p><p>And that is why I was so happy to hear those words last week when a urologist gave me the results of the prostate biopsy that I <a href="https://www.cobbsblog.com/2021/09/transperineal-prostate-biopsy.html">described in some detail here</a>. </p><p>He delivered this wonderful news as I sat in his office, along with a specialist nurse and an audio recording system. I will come back to the audio recording system in a moment; the make purpose of this blog post is to make the point that not every prostate biopsy brings very bad news. </p><p>Even if you are at elevated risk of prostate cancer—based on family history and/or PSA score—that doesn't mean you're predestined to have a serious case of it. Many men live with a low level of prostate cancer that never produces serious symptoms. So, when a urologist says you should have a prostate biopsy, you probably should, even though a biopsy can be an unpleasant experience. </p><p>(To be honest, the urologist had to talk me into getting the biopsy. I was arguing that "just an MRI" would be enough, and they did do an MRI before the biopsy; but that was mainly to get the lay of the and look for signs that the prostate cancer, if there was any, had spread beyond the prostate itself—in my case, it had not.)</p><p>Obviously, what happens after the biopsy will depend on how much cancer is found. If there is no sign of cancer? Great! If there is some cancer? You and your doctors have a sound basis for determining the best course of action. <span></span></p><a name='more'></a><p></p><p>In my case, I count myself extremely fortunate to have reached the age of 69 with just a tiny amount of cancer, an amount so small it may never need treatment, although it will be monitored closely (a strategy with a rather cool name: Active Surveillance). </p><p>So, for those readers who've been wondering about the much delayed results of the biopsy that I had in August, there you have it: Stephen Cobb has a tiny amount of non-aggressive cancer. The rest of this article provides more details and context, provided in the hope that it will be helpful for anyone going through the prostate cancer diagnosis process.</p><p><span></span></p><h3 style="text-align: left;">More details and context</h3><p>As readers of <a href="https://www.cobbsblog.com/2021/09/transperineal-prostate-biopsy.html" target="_blank">my prostate biopsy article</a> may recall, the procedure grabbed 24 tissue samples from my prostate. The urologist said that only one of those samples showed any sign of cancer. Furthermore, that one sample was less than one millimeter in size. </p><p>He went on to say that this finding was consistent with my PSA score, which is not very high, and the results of my MRI, which he described as normal (I will go over those results in a moment). All of that added up to this conclusion: </p><p></p><blockquote>"We don’t think this needs treatment at this point [and] it’s very likely you will never need treatment for it." </blockquote><p></p><p>This was hugely welcome news for someone who had spent the previous 48 hours reading up on "treatments for prostate cancer," which can include life-limiting surgery, chemicals, radiation, and more. My brain was working on "to do" list of things like make a will, set up a power of attorney, and find someone to help my partner look after me if I had to undergo one or more of the higher impact treatments.</p><p>As I sat in the urology consulting room and let my relatively good news wash away that list and the scary thoughts that went with it, the specialist nurse handed me a small book about prostate cancer. It was opened to the part about how prostate cancer is graded. She had even marked the grade that applied to me; it reads as follows:</p><p><i><b>Grade Group 1 (Gleason score 6) is the lowest grade and not likely to spread. </b></i></p><p>This was a wonderful gift, not least because I immediately realized that I could use the book to reassure my mother, who has already had to live through one of her two children getting treatment for a much higher grade of prostate cancer. </p><p>Although I find this <i>grade group score </i>stuff somewhat confusing, the book had just the right words for my mum: <i>lowest grade</i> and <i>not likely to spread</i>. Which brings me back to the audio recording system, something that has been in use for some years at UHCW (University Hospitals Coventry and Warwickshire). It started with a study by UHCW that found patients receiving a cancer diagnosis had a lot fewer questions afterwards <b><i>if</i></b> they were given an audio recorder of the diagnosis delivery meeting. </p><p>So, by the end of my diagnosis delivery meeting I had in my hand a CD of what was said. But that recording and the book were not the only gifts I received. I got a package of prostate cancer coping information plus the contact details and direct line for the designated specialist nurse. I was also registered as a cancer patient and enrolled in Active Surveillance. That means a PSA test every three months, possibly additional MRIs and biopsies further down the road.</p><h3 style="text-align: left;">PSA, MRI, and statistics </h3><p>Which brings me back to my MRI results. Apparently these did not indicate any signs of cancer. This was supposed to have been conveyed to me back when I had my biopsy. To be honest, I may have been told, but at the time I was very distracted by the messy after-effects of the biopsy. </p><p>What those MRI results indicated to the urologist, in combination with the finding of less than one millimeter of cancer and a series of relatively low PSA numbers, was a low risk of spread. </p><p>You might be wondering what constitutes a relatively low PSA number. That is not an easy question to answer, which is a pity because the process of detecting prostate cancer often starts with a <i>PSA test</i> to measure the level of Prostate-Specific Antigen in your blood. This level is "<a href="https://www.cancer.gov/types/prostate/psa-fact-sheet" target="_blank">often elevated in men with prostate cancer</a>" and it makes a lot of sense to check this level if you find out that a close relative has prostate cancer. Here is a chart of the Baseline Age-Adjusted "Normal" PSA Levels (ng/mL).</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi2Eq4PaPrCqAb3Gl8S1-bX4c9BoKh2xWX4m29Wm_mtJzx__Mcx3p8NU6-wd0tgsMqIUL-R7ZZmvllwj6WaZGwjb5OOGdNBzf0uDnwvDdyKmH0o7sp23fai4NkigdbeTZFpHzn7c6STcs9/s739/psa-chart-lines.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="583" data-original-width="739" height="316" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi2Eq4PaPrCqAb3Gl8S1-bX4c9BoKh2xWX4m29Wm_mtJzx__Mcx3p8NU6-wd0tgsMqIUL-R7ZZmvllwj6WaZGwjb5OOGdNBzf0uDnwvDdyKmH0o7sp23fai4NkigdbeTZFpHzn7c6STcs9/w402-h316/psa-chart-lines.jpg" width="402" /></a></div>Studies have shown that if you have a brother who has prostate cancer your chances of getting it are twice as high as someone who doesn't. My brother has prostate cancer and, not long after my biopsy was scheduled, we learned our cousin has it too. Those were decisive factors in the urologist's push to perform a biopsy on me.<div><div><br /></div><div>When I got my first PSA test at the start of 2021, my level was 5.3. The standard way of presenting the normal PSA range for different age groups goes in bands from 40 to over 70. This is typically presented in the form of a table like so:</div><div><span style="font-family: arial; font-size: x-small;"><br /></span></div><div><span style="font-family: arial;"> Age Level </span></div><div><div><span style="font-family: arial;"> 40 to 49 0 to 2.5</span></div><div><span style="font-family: arial;"> 50 to 59 0 to 3.5</span></div><div><span style="font-family: arial;"> <b> 60 to 69 0 to 4.5</b></span></div><div><span style="font-family: arial;"> 70+ 0 to 6.5</span></div><div><br /></div><div>So, my score of 5.3 at age 68 is above the norm of 4.5 for my age group and thus technically "deranged" as in too high. But this year I turned 69, and I had to ask myself if it really made sense to say that's out of range given that, after my next birthday, a PSA level of 5.3 would suddenly be within the normal range. Clearly there is a steady increase in "normal" over time and that is what I tried to show in the chart above.</div><div><br /></div><div>As it turned out, I had two more PSA tests before my biopsy and registered 4.2 and 4.3. When I put all this to the urologist as an argument against having a biopsy, his response was very sensible. Although my PSA levels were not badly deranged, and I might have been considered be a borderline candidate for a biopsy based on PSA alone, my family history made doing the biopsy the best course of action. </div><div> </div><div>I should note that there is disagreement about the value of PSA testing because it is not a foolproof indicator of whether or not someone has prostate cancer, or if they do, how much. For this reason countries like the UK and US <a href="https://www.washingtonpost.com/news/to-your-health/wp/2017/04/11/the-federal-panel-that-opposed-prostate-cancer-screening-just-changed-its-mind/" target="_blank">don't have universal screening programs for prostate cancer</a>, leaving it to individuals and their doctors to decide whether or not to get tested. </div><div><p></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4Y-SvHLbwCmRwyU4oJMLYDgkoNEyvhYCtCJp-tFVkcLINdW-POgMBoVjVRC0mVOzCD1VdLKDslnd6HQ9Zcno_DTji5PoadpRwUYbmOjet987S_tdqhKfCZoVcw0mrW_3-7V0YfUvj-DIP/s1308/prostate-cancer-data.png" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1082" data-original-width="1308" height="331" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4Y-SvHLbwCmRwyU4oJMLYDgkoNEyvhYCtCJp-tFVkcLINdW-POgMBoVjVRC0mVOzCD1VdLKDslnd6HQ9Zcno_DTji5PoadpRwUYbmOjet987S_tdqhKfCZoVcw0mrW_3-7V0YfUvj-DIP/w400-h331/prostate-cancer-data.png" width="400" /></a></div>Personally, I am very glad that I got my PSA tested. Bear in mind that 1 in 8 men do eventually get some level of prostate cancer. Despite that number, and the ones shown on the right, neither my primary care doctor in America, nor my GP in England, recommended that I get a PSA test. </div><div><br /></div><div>What happened in my case was this: early in 2020, as my brother's prostate cancer treatment progressed, I began to think about asking for a PSA test. Then Covid happened. I got distracted and medical services got severely disrupted. It was January of 2021 before I requested a test. The result of that test, a PSA level of 5.3, triggered a visit to a urologist in February; but he declared my prostate "normal" based on a Digital Rectal Exam (DRE). However, the experience prompted me to get a follow-up PSA test. I have to admit that I was hoping this second test would show a much lower level and prove the first one a fluke. The level was 4.2 and I was pleased, even hopeful that a biopsy could be avoided. But now, even with <a href="https://www.cobbsblog.com/2021/09/transperineal-prostate-biopsy.html">the complications that my biopsy produced</a>, I am glad that I took the advice to get the biopsy done and obtain a clear picture of my prostate cancer status, which currently stands at: a tiny amount of non-aggressive cancer, now under Active Surveillance.</div></div></div><div><br /></div><div>At this point, I count myself very lucky; but if that luck changes, and I have to face a more serious situation, I know that I have a brother and a cousin to whom I can turn for advice, and whose bravery in facing far bigger challenges than me, will be a source of inspiration.</div>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-84664296716622883592021-09-30T15:05:00.114+00:002021-11-29T12:26:41.728+00:00Transperineal prostate biopsy: a patient's perspective<p></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglja4oeMxkZQD9VPSH-b5M07Gi1x-jMHqIsHQLDI-M5w9PvKUmcI_DOK78ooEXxPFBB3Artm2z5kHwPtIqtX3YJ014T_lfkdrgbyp5dVX7eUs5gWpS9lNDv76eh7aPteMWJkOV-ltRMtkR/s1754/shocked-mawg-need.png" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Man saying "You want to stick needles where?" Thanks to krakenimages for making the photo in this image available freely on @unsplash." border="0" data-original-height="1297" data-original-width="1754" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglja4oeMxkZQD9VPSH-b5M07Gi1x-jMHqIsHQLDI-M5w9PvKUmcI_DOK78ooEXxPFBB3Artm2z5kHwPtIqtX3YJ014T_lfkdrgbyp5dVX7eUs5gWpS9lNDv76eh7aPteMWJkOV-ltRMtkR/w401-h297/shocked-mawg-need.png" width="401" /></a></div><p>If you happen to be wondering what a prostate biopsy is like, this article should prove helpful. </p>In August, I underwent something called a transperineal prostate biopsy and I thought sharing my experience might be helpful to other people who are facing this procedure. <div><br /></div><div>(Update, November 27, 2021: <a href="https://www.cobbsblog.com/2021/11/prostate-biopsy-results.html" target="_blank">My prostate biopsy results</a>.) <br /><p></p><p>Like most prostate biopsies, mine was performed to evaluate whether or not the patient has prostate cancer. That means biopsies can be an emotionally challenging experience as well as a physically daunting prospect: a scary procedure at a scary time. </p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAz35BYxly80Y2bM1M2Usy_B7-7RqFX5yKH5RmP0RVMpBmlmDo_-gsp5hS8VkLUJpqhUS0jzar2yzcUHQOUi5jS_tKcibvM28Ee5In3-IENE2VFuoSnqaqdpKM5dQ7zhtKKqZ-_Gs7zK6D/s618/transperineal-definition.png" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="237" data-original-width="618" height="219" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAz35BYxly80Y2bM1M2Usy_B7-7RqFX5yKH5RmP0RVMpBmlmDo_-gsp5hS8VkLUJpqhUS0jzar2yzcUHQOUi5jS_tKcibvM28Ee5In3-IENE2VFuoSnqaqdpKM5dQ7zhtKKqZ-_Gs7zK6D/w570-h219/transperineal-definition.png" width="570" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;">NCI's Dictionary of Cancer Terms</span></td></tr></tbody></table><p></p><p>However, while I find the thought of needles piercing sensitive parts of my body unappealing, I found that this procedure can be relatively quick and painless. I say that based on my experience and the feedback of several other guys whom I chatted with over tea and biscuits in the recovery room. This should be positive news, given that a biopsy is an essential weapon in the fight to find and treat prostate cancer. </p><p><span></span></p><a name='more'></a><p></p><h2>What is a transperineal prostate biopsy?</h2><p></p>To be specific, the procedure I had was a transperineal prostate biopsy, and even more specifically, an LATP or Local Anesthetic Transperineal Prostate Biopsy. This terminology is explained—from a doctor's perspective—and graphically visualized in the video below. Note that the video contains some drawings of male genitalia:<p></p>
<div style="text-align: center;"><iframe frameborder="0" height="270" src="https://youtube.com/embed/JUIpUXSSOs0" width="480"></iframe></div><div style="text-align: center;"><span style="text-align: left;"><span style="font-size: x-small;">© 2021 Mechanisms in Medicine Inc.</span></span></div><p>While that video is very informative, I thought it would still be helpful to write about my LATP from a patient's perspective (bear in mind that I am not a doctor and this article is not medical advice). Of course, the web has lots of professional articles and videos about the technical aspects of this procedure, so I have put links to some of them at the end of the article. </p><p>Just to be clear, a transperineal prostate biopsy is when a medical professional removes multiple tissue samples from your prostate using a special needle inserted in the area between your rectum and your scrotum, aided by an ultrasound probe inserted in your back passage to visualize the process. </p><p>This is usually performed with a local anaesthetic rather than knocking you out (to reduce time taken, resources consumed, and risk exposure). Here's a diagram, taken from the video above:</p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0kf3He3Vq5YS9mpDdsu-w4HJVlt6yMVNVGrihTpKC0iqxg9kewUo25EuEmlAPxMiRZJw1jPWDzwXXvl_WSub0USuiludNCDLpnAR8A10f3HVJIuEQ2yuPwmfHX357Ck1wqEpzmtpIHIj5/s1501/trans-perineal-biopsy.png" style="margin-left: auto; margin-right: auto;"><img alt="diagram of a transperineal prostate biopsy" border="0" data-original-height="543" data-original-width="1501" height="205" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0kf3He3Vq5YS9mpDdsu-w4HJVlt6yMVNVGrihTpKC0iqxg9kewUo25EuEmlAPxMiRZJw1jPWDzwXXvl_WSub0USuiludNCDLpnAR8A10f3HVJIuEQ2yuPwmfHX357Ck1wqEpzmtpIHIj5/w567-h205/trans-perineal-biopsy.png" title="© 2021 Mechanisms in Medicine Inc." width="567" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;">© 2021 Mechanisms in Medicine Inc.</span><br /></td></tr></tbody></table>The green rectangular thing on the right of the illustration is the sampling device. The special sampling needle protrudes from the device and enters the body through the orange cannula. Multiple samples can be taken through one cannula. For example, if your urologist has said a dozen samples will be taken, only two cannulas may be needed, one for each side of the prostate, with six samples taken via each one (I had 24 samples taken via two cannulas).<div><br /></div><div>The long grey piece of equipment inserted through the anus into the rectum is the ultrasound transducer. This uses sound waves to enable visualization of your insides on a screen that the doctor uses to guide the sampling needle. Technically speaking this is not a "camera up the butt," it's a microphone.<br /><p>If you've googled "prostate biopsy" or watched the video above, you've probably noted that the <i>transperineal</i> prostate biopsy is a relatively new approach compared to the <i>traditional</i> method known as TRUS or <i>transrectal</i> ultrasound guided biopsy. As you can see from the diagram below, TRUS involves inserting both the ultrasound transducer and the sampling needle through the anus, then piercing the wall of the rectum to get the samples.</p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZPepIsBZt2Kw_q-gfiK-XsNB5FJ6Kz089w7sNvGVE20Uj5AyjkRKa3T6KWShIZq9vZfYBADLhRUMvPcbihYqPOAjAKNot-F2lz0L2Ud1uOTKJ95zv5VwDAt5slumnKJjd7E_DBL4Kac2j/s1501/trans-rectal-biopsy.png" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="506" data-original-width="1501" height="192" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZPepIsBZt2Kw_q-gfiK-XsNB5FJ6Kz089w7sNvGVE20Uj5AyjkRKa3T6KWShIZq9vZfYBADLhRUMvPcbihYqPOAjAKNot-F2lz0L2Ud1uOTKJ95zv5VwDAt5slumnKJjd7E_DBL4Kac2j/w569-h192/trans-rectal-biopsy.png" width="569" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;">© 2021 Mechanisms in Medicine Inc.</span></td></tr></tbody></table><p>The TRUS procedure carries greater risk of causing infection because it pokes holes in area used to store fecal matter. TRUS also has a narrower range of access to the prostate, as noted in the video at the top of this article. In other words, as a patient, if you have a choice, I'd say go transperineal: LATP rather than TRUS.</p><p>By the way, if all of this sounds pretty gross/scary/painful to you, be assured that you are not alone. Just the term "transperineal prostate biopsy" is enough to make a grown man squirm; each of the three words is discomfiting on its own, particularly if you are having problems with your prostate. And of course, the mother of all prostate problems is prostate cancer.</p><p>Typically, the goal of a prostate biopsy is to find out if you have prostate cancer. The tissue samples acquired by the biopsy procedure are analyzed by a pathologist who reports them to the urologist who requested the procedure. (I am writing this before receiving the results of my own biopsy because these have been delayed due to a shortage of pathologists.)</p><h2 style="text-align: left;">Legs up, lie back, and go to your happy place</h2><p>When your biopsy is scheduled you will likely get specific guidance from the clinic-facility-urologist that is performing the procedure. General information on how to prepare for an LATP are provided in the pages to which I have linked below.</p><p>Two things you should discuss with the doctor before the procedure are a) the possible side effects, and b) the handling of any anticoagulants—like aspirin, warfarin, apixaban, and so on—that you may be taking. (More on that later.)</p><p>One tip I can offer is to ask about eating and drinking before the biopsy. I was told this was okay. However, two of the guys I met on the morning of the procedure had decided to skip breakfast, apparently worried about bowel movements relative to having something inserted into their butt. One of these chaps got dizzy and faint during the procedure, possibly due to not eating breakfast, and the fact that it was past 11AM when he went in. I went in about noon, having eaten breakfast at 7:30. I felt fine but was very happy to sample the biscuit selection as soon as I came out. </p><p>My biopsy was performed at a hospital but as an outpatient procedure, in other words, no overnight stay. After checking in and having my vitals checked, I changed into a hospital gown and my slippers (the hospital has a "bring your own slippers" policy). Then I sat in the staging area with several other blokes awaiting the same procedure. This led to some interesting conversations, like comparing PSA scores, sharing feelings of trepidation about the procedure, and generally asurring each other everything would be fine.</p><p>When it was my turn, a nurse walked me into the procedure room where I was directed to sit on the special table, with my butt right on the edge. I then laid back and the nurses helped me put my legs in stirrups to hold them up and apart. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1-ZUMFsHcMFFcdOn5USyEoFrhq2B-Gf9iqY4pnBZvTJs5QOxb8iwnrf7TQM3mUHpa9hn74YKFSSK9CqJG_kbO64NqCrdjWqIL2KbRoZA0utvr2BhW_fLXN1liDN0caJmNzT-BjJcKdDT-/s1508/legs-up.png" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="646" data-original-width="1508" height="137" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1-ZUMFsHcMFFcdOn5USyEoFrhq2B-Gf9iqY4pnBZvTJs5QOxb8iwnrf7TQM3mUHpa9hn74YKFSSK9CqJG_kbO64NqCrdjWqIL2KbRoZA0utvr2BhW_fLXN1liDN0caJmNzT-BjJcKdDT-/s320/legs-up.png" width="320" /></a></div><p></p><p>This arrangement is likely more familiar to women than men, but the words "undignified" and "vulnerable" probably come to mind for anyone who finds themself in this position in a room full of strangers (okay, the room wasn't full but there were four or five people there besides me—thankfully all of them were friendly, sympathetic, and reassuring).</p><p>As soon as I was positioned correctly, I was asked to hoist my testicles and penis up and away from the perineal area. A nurse them taped them in place with a protective barrier. This is not particularly uncomfortable and is done for two very good reasons: keep your junk clear of the action,and avoid it getting hit with icing spray. </p><p>The icing spray was the next step, used to numb the perineal area ahead of the injection of a local anaesthetic. While the icing burns a bit, it does reduce the sting of the injection. Fortunately, you don't have much time to think about that because the doctor is now using a gloved and lubricated finger to probe your anus and insert the ultrasound device. </p><p>Which brings me to what, for many guys, is the big question: what's it like getting that thing pushed up your back passage? To me it felt like having a suppository inserted. It did not feel, to me, like a drainpipe, which is how one friend had described it. </p><p>Admittedly, I did some relaxation breathing before the thing went in and that probably helped, but remember, there is local anaesthetic and lubrication to reduce the discomfort. You really don't need to worry, even if your butt has never experienced a foreign object like a finger, suppository, butt plug, etc. (Tip: practicing with one or more of those things ahead of the procedure may help.)</p><p>To me, the more disconcerting sensation was the sample taking. This started as soon as the doctor was happy with his view on the ultrasound monitor. The sample "shots" really didn't hurt but neither did they feel good. I'd say they were uncomfortable, partly because the sound each one made was like a nail gun or heavy duty stapler. </p><p>I tried to count down the sounds while focusing on my breathing, knowing there were supposed to be 24 samples; however, that didn't distract my mind enough, so I switched to talking. (For me, talking can take my mind off other things—I've often thought that dental work would be less distressing if we could talk all the way through it.) </p><p>But what to talk about? I started by thanking everyone for being so cheerful despite having to work in masks and less than ideal conditions. Because this was happening in an NHS hospital in England I said that I thought everyone should get a big raise and large bonus. This was well-received, not least because I'm sure they could tell I meant it. </p><p>Eventually the "shooting" stopped. I had forgotten to set a timer but I reckon the sampling itself took no more than 15 minutes. I don't think there was a round of applause but the team seemed very pleased and gently helped me down from the table. (It turns out I was the last patient of the morning.) </p><p>I thought I heard the doctor say he had taken more than 24 samples but I might be mistaken as I was busy thanking everyone and adjusting my gown for the walk back to the waiting/recovery room. Walking and sitting down were not painful at that point and the nurse assistant brought me a coffee not longer after I sat down. And biscuits. </p><p>The final step before leaving is to make sure you can urinate. After sitting drinking coffee for a while I was able to pee just fine, and without any pain, but of course there was some blood. This is "normal" because your prostate has just had a bunch of holes punched in it and urine passes through a tunnel in the prostate to get from bladder to penis. However, I have to say that seeing blood in your pee is not normal and I found it took some effort to get used to this.</p><p>Because I was the last patient of the morning there were no other guys with whom to chat or compare notes. Earlier conversations had revealed a split between those who had a very negative reaction to the procedure ("I felt violated"), and those who found it reasonably tolerable. I was with the latter group. As it happens, I had experienced a wisdom tooth removal a few months ago and for me the biopsy was no worse than that. One bloke tried to make a joke about it being easier to deal with if you were gay, but I think he sensed the rest of us were not amused. I don't happen to be gay but I doubt that my response to the procedure would have been any different if I was.</p><h2 style="text-align: left;">Prostate biopsy: the aftermath</h2><p>The nurse who discharged me made a point of telling me to take it easy for the next 10 days. She emphasized 10 and sort of winked when she said it, probably because that is quite a few more days than some of the recovery advice I'd seen on websites and in hospital literature (3-4 days). </p><p>In hindsight, I wish I had worked at taking it easier for longer, but frankly I felt pretty good almost right away. I drove myself home, and although sitting in some chairs felt a bit sore after the anesthetic wore off, there was no serious pain. There was blood in my urine, but no pain when peeing, and the amount of blood seemed to reduce over the next few days. </p><p>Something I found helpful during those early post-biopsy days was to wear a pair of incontinence underpants (Depend). These prevented blood stains on my regular underwear. The following table from Oxford University Hospitals shows what you may need to deal with after your procedure:</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMppjJnXw2nG-CoLSFn4NT5saba662fibafEn1rctkaJwDss9-MlyMl-6KmFqR6a2okopKmwWMu33V6Ji3VbAqrp_6whZfmhz-va8dQXP3-7V7fNGpw6LRaGPYLOHWVmobFbfGGOuBd3i-/s1454/latp-risks.png" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1454" data-original-width="1214" height="441" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMppjJnXw2nG-CoLSFn4NT5saba662fibafEn1rctkaJwDss9-MlyMl-6KmFqR6a2okopKmwWMu33V6Ji3VbAqrp_6whZfmhz-va8dQXP3-7V7fNGpw6LRaGPYLOHWVmobFbfGGOuBd3i-/w368-h441/latp-risks.png" width="368" /></a></div>The first time I read this table I found myself discounting the odds, basically assuming that I was unlikely to be one of the "1 in X" men. And for the first seven days after the biopsy I only experienced first few items on the list, nothing else.</div><div><br /></div><div>However, on day eight, things changed. I started passing large blood clots when I peed and within a few hours this became "Blood in your urine, preventing you from passing urine (clot retention)." In other words, I was the 1 in 50 men.</div><div><br /></div><div>Unfortunately, I reached that point on a Saturday evening, one week and one day after the biopsy. My wife, who has a fair amount of medical training, decided this was an emergency. She drove me to A&E, the hospital's emergency entrance. I had become the 1 in 100 who experienced: "Blood in your urine, requiring emergency admission for treatment."</div><div><br /></div><div><div>That treatment kept me in the hospital for three and a half days. It consisted of clearing blot clots from my bladder with a three-way catheter while consuming pain meds and speical pills to stop my bladder spasming. I will not describe the gory details of those days in this article, other than to say was released when I was able to pass—without a catheter—light pink urine rather than deep red. I drank a lot of liquids and thanked my lucky stars that the hospital staff were so patient, kind, and caring.</div><div><br /></div><div>I was released with a course of antibiotics and pills to help ease and sooth urination. My wife drove me home and I spent the next week or so moving very carefully. With each passing day the pain of passing of urine went from sharp burn sharply to momentary soreness. Traces of blood and dried clots gradually disappeared from my pee. By the end of the third week after discharge, four weeks after the biopsy, there was no more discomfort.</div><h2 style="text-align: left;">What went wrong?</h2><div>I'm pretty sure that what went wrong was something to do with the blood-thinning medication that I take because I have a condition known as long-standing persistent atrial fibrillation. So, if you are not on a blood-thinner the message is clear: my post-biopsy experience was not the norm and I urge you: </div><div><b><i><br /></i></b></div><div><b><i>Do not avoid or postpone your prostate biopsy</i></b> because of the slim chance it will get messy. </div><div><br /></div><div>The blood-thinner that I was taking—sold as Eliquis, generic name apixaban—has a good track record of preventing the kind of blood clots that can lead to strokes in patients with atrial fibrillation. Ironically, it can also lead to excess bleeding after surgery. I think that's what happened to me and a lot of blood pooled in my bladder and formed clots. </div><div><br /></div><div>Of course, I stopped taking my apixaban before the biopsy, as instructed. I re-started taking it four days after the procedure, again per doctors' instructions. However, I have since read several discussions in medical journals concerning "applicable protocols and periprocedural anticoagulation guidelines." One said: “more research urgently needed.” That is not so unusual in academic papers, but I also read: “complications should be expected.”</div><div><div><br /></div><div>Apixaban belongs to a class of drugs known as NOAC or DOAC. These acronyms stand for Novel Oral Anti-Coagulants and Direct Oral Anti-Coagulants. In my reading I got the distinct impression that many cardiologists had gone all in on NOACs without giving adequate thought to the complications they create for doctors—like urologists—who need to operate on NOAC-taking patients. Here is one quote that stood out: </div><div><blockquote>“New oral anticoagulation drugs (NOACs) are increasingly used. However, the management of such treatments is feared and not yet well known to urologists. A protocol for prostate biopsy management of NOACs seems mandatory.” (Coscarella et al., <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6295786/" target="_blank">Ther Adv Urol, 2018</a>, Vol. 10(12) 437–443.)</blockquote></div></div><div>After my hospitalization I have refrained from taking apixaban. To put this in context, I only started taking apixaban this year, at the urging of a cardiologist. Prior to the apixaban I had been taking low dose aspirin for several years, prescribed by a different cardiologist. So, I am now back on low dose aspirin until I can get my urologist and cardiologist to have a quick chat.</div><div><br /></div><div>Unfortunately, the Covid-19 pandemic is still in progress, impairing prompt access to medical care. For example, it is now five weeks since my biopsy and the results are not yet available. (I realize this may be a localized problem: in the UK there was already a severe shortage of histopathologists—doctors skilled in analyzing biopsy samples—<a href="https://www.rcpath.org/discover-pathology/news/college-report-finds-severe-staff-shortages-across-services-vital-to-cancer-diagnosis.html" target="_blank">back in 2018</a>. The government was not adequately addressing that problem before the pandemic and now the easing of the pandemic has a created a surge in demand as people finally get long-delayed biopsies.)</div><div><br /></div><div>I will update this article when I get my prostate biopsy results. If you need this procedure, please don't delay getting it, but do try to dedicate a full 10 days to recovery if you can. The chances are things will go well for you, without the complications I experienced. My advice if you are on blood-thinners is to push your doctor to be honest about the risks and show that you are aware of the problem. </div><div><br /></div><h3 style="text-align: left;">Notes</h3><p>This is a good leaflet about LATP that includes the risk chart shown above: <br /><a href="https://www.ouh.nhs.uk/patient-guide/leaflets/files/59654Ptransperineal.pdf">https://www.ouh.nhs.uk/patient-guide/leaflets/files/59654Ptransperineal.pdf</a></p><p>Good web page with diagram of LATP<br /><a href="https://www.cancerresearchuk.org/about-cancer/prostate-cancer/getting-diagnosed/tests/transperineal-biopsy">https://www.cancerresearchuk.org/about-cancer/prostate-cancer/getting-diagnosed/tests/transperineal-biopsy</a></p><p>More extensive discussion of transperineal versus transrectal prostate biopsy:<br /><a href="https://www.mayoclinic.org/medical-professionals/urology/news/ultrasound-guided-transperineal-prostate-biopsy/mac-20473283">https://www.mayoclinic.org/medical-professionals/urology/news/ultrasound-guided-transperineal-prostate-biopsy/mac-20473283</a> </p><p><b>Personal note</b>: One reason I created a "personal blog" was to have a place where I could share information that might seem inappropriate or out-of-place on a professional blog, such as the "<a href="https://scobbs.blogspot.com/" target="_blank">Cobbs on Security</a>" site. That is why, in the archives of <i>this</i> site, you can find articles about <a href="https://www.cobbsblog.com/2013/08/adrenalectomy-from-pain-to-promising.html" target="_blank">my adrenalectomy</a> and <a href="https://www.cobbsblog.com/2013/06/cobb-got-conn-probably-but-i-go-through.html" target="_blank">primary aldosteronism</a>, a condition that can cause high blood pressure and heart damage. In fact, my long standing persistent atrial fibrillation was probably caused by late diagnosis and treatment of primary aldosteronism. That late diagnosis was partially attributable to doctors not doing enough talking to each other.</p><p><br /></p></div></div>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-75655213051155288262021-08-26T15:14:00.020+00:002021-08-28T12:36:35.405+00:00Big fun with old UK maps? The National Library of Scotland delivers<p>This is just a quick blog post to share some fun I've been having lately by combining old maps of England with current satellite photography. To be clear, I'm not the one doing the combining; that work is being done by the National Library on an amazing website that yields views like this:<a href="https://maps.nls.uk/geo/explore/#zoom=17&lat=52.41214&lon=-1.53872&layers=6&b=1" style="clear: left; display: inline; margin-bottom: 1em; margin-right: 1em; text-align: center;" target="_blank"><img border="0" data-original-height="601" data-original-width="954" height="405" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb1ilsepgej8de7XYthUXJC0zlvupMnXUbqUfOS-pzDgSrx1f-3DKPz9lf9bGDaPAMKt0c3KvCvF9wV-unJ-QnwBDS8Ks1NVimwbzjGYc0laZ1h5lP11JfCrMCeKzG_lkwQe7JfVUzZ2Z2/w640-h405/nls-example-sherbourne.jpg" width="640" /></a></p><p>What you are looking at is a map that shows the River Sherbourne in Coventry in the late 1800s, drawn over current satellite photos of the same slice of England's green and pleasant land. You can go to this interactive map view <a href="https://maps.nls.uk/geo/explore/#zoom=17&lat=52.41214&lon=-1.53872&layers=6&b=1" target="_blank">by clicking here</a>. </p><p>And that's the fun I've been having, because when I was young I played on that land and explored it with my friends. We were all born on the streets you see at the top of the image. (This was in the 1950s so our parents always worried that we would either drown in the river or catch polio from the river, neither of which happened, mainly thanks to common sense, good fortune, and a great vaccine.)</p><p>In the two images below I have rotated the view slightly and marked where I was born on both of them. In other words, the house in which I was born sits in what was a field until these streets were constructed (1934-36). </p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVEzsTDI1cEKXgWSJiIs9apwZLkhFUDJ1c9pSVD6cex6LL1jWizEyh6jUmVFL4l9rUBLMdfl218I7YHtnv_-Mg5g6JgLmeX-XWAhyphenhyphenXffQ3uMudhWuOpIsDeAPp-qdS-rXyQolmOCGKrPgo/s1247/susex-statelitte-x2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1247" data-original-width="940" height="849" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVEzsTDI1cEKXgWSJiIs9apwZLkhFUDJ1c9pSVD6cex6LL1jWizEyh6jUmVFL4l9rUBLMdfl218I7YHtnv_-Mg5g6JgLmeX-XWAhyphenhyphenXffQ3uMudhWuOpIsDeAPp-qdS-rXyQolmOCGKrPgo/w640-h849/susex-statelitte-x2.jpg" width="640" /></a></div></div><p>What you can also see is that the course of the river has changed over time. This is part of the long and complicated story of the River Sherbourne, one that I am exploring these days on foot and, thanks to the <a href="https://www.nls.uk/" target="_blank">National Library of Scotland</a>, online. </p><p>I have already determined that the river was straightened out after the time I spent playing there in the 1950s and early 1960s. Time permitting, I will post photos of what is today called Lake View Park, even though there is no lake (another long story).</p><p><br /></p>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-69637237991056917492021-08-15T14:49:00.004+00:002021-08-16T10:22:55.173+00:00Cannabis-based medicine: a personal (UK) perspective<div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEZ_ul-kePu4KTc1HJpRblV6pDfGoiGAtx1nQlk1YZhpZL4pnQgamUUIlYHP4vCCO2bJFdk5jfxYHbOHA4s0y_-eVzLPLvq3Shcx7kAZ508pxUUOKB4-Aq_cgSzzpAoaCoEO4RIYDxXTc0/s1400/thc-cbd-square.png" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1360" data-original-width="1400" height="311" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEZ_ul-kePu4KTc1HJpRblV6pDfGoiGAtx1nQlk1YZhpZL4pnQgamUUIlYHP4vCCO2bJFdk5jfxYHbOHA4s0y_-eVzLPLvq3Shcx7kAZ508pxUUOKB4-Aq_cgSzzpAoaCoEO4RIYDxXTc0/s320/thc-cbd-square.png" width="320" /></a></div>On July 17, 2021, something very wonderful and special arrived at our address in England: cannabis-based medicine prescribed by an English doctor. </div><div><br /></div><div>I published an article about what this delivery meant to us, over on Medium: <a href="https://zcobb.medium.com/prescription-cannabis-and-quality-of-life-a-case-study-from-the-uk-d210c3cc1034" target="_blank">Prescription cannabis and quality of life: a case study from the UK</a>. </div><div><br /></div><div>Based on Medium's statistics, this could be the most widely-read article that I have written since I retired in 2019. Here's a quote:</div><div><br /></div><div><i>"after four days of taking the capsules my wife was better in nine out of 14 ways, meaning there were improvements in, or reduction of, nine of the 14 symptoms...after seven days of cannabis-based medication, Chey is now enjoying improvement in 13 out of 14 areas."</i></div><h2>What's so special about this UK cannabis? </h2><div>Friends and family will know that our household is no stranger to medical cannabis; Chey began exploring its potential to ease her pain and suffering even before we moved to California in 2011 and she received her medical marijuana card.</div><div><br /></div><div>After considerable trial and error with different cannabis formulations—some of which she made herself—Chey found what worked for her: capsules containing a mix of the two main cannabis compounds, THC and CBD.</div><div><br /></div><div>And when I say "worked for her," I mean: did such a great job of addressing her chronic musko-skeletal pain that she went from taking 140mg of morphine a day to zero, nought, none. She used cannabis to end years of heavy opioid use. Cannabis also put an end to years of nasty and unpleasant opioid side effects, not to mention recurrent medical harassment by doctors who accused her of being a drug addict.</div><div><br /></div><div style="text-align: left;">When we decided to move from California to England in 2019 to be near my mum, who is now in her nineties, we knew that the Conservative government had changed the legal status of cannabis medications in 2018 to make them more accessible. What we didn't know until we got here is that the government's actions were in reality far less helpful than they sounded (a hallmark of Britain's Conservative governments for the last decade or so).</div><div><br /></div><div>Three years on, this is still the case, with only a handful of Brits actually getting cannabis prescribed by the National Health Service. The result is that an estimated 1.4 million people in the UK are still using cannabis illegally for medical reasons. </div><div><br /></div><div>At the same time, a few thousand people in the UK have managed to navigate "the private option" in which you pay a special doctor at a special clinic to examine your case and legally write you a prescription. (I have described the process in this Medium article: <a href="https://zcobb.medium.com/getting-prescription-cannabis-meds-in-the-uk-legally-a-beginners-guide-8800f292c99f" target="_blank">Getting prescription cannabis meds in the UK legally: a beginner’s guide</a>.)</div><div><br /></div><div>When Chey's supply of California-sourced cannabis meds ran out, and her health got worse and worse, we decided to try the UK's pricey private option. This required many phone calls and emails, took many stressful weeks, and of course involved paying consultation fees and product costs. Not ideal for someone who is suffering multiple symptoms that are seriously eroding their quality of life.</div><div><br /></div><div>Eventually, and very thankfully, we achieved the transformative delivery that happened in July. Since then Chey has been able to get her dose adjusted and her prescription renewed. Yet this is bad news as well as good news; it's good news for Chey, but bad news for millions of Brits who cannot afford to get cannabis through this process. This is clearly wrong.</div><div><br /></div><div>Frankly, I fail to see how the UK's convoluted and deeply unethical three-tier approach to cannabis medication can continue in the face of mounting protests and outrage. Most Brits are repulsed by the current a situation in which "the rich get high quality cannabis meds, the poor do not, unless they take their chances breaking their law."</div><div><br /></div><div>Fortunately, there are plenty of groups working to change this. I have included some here, along with some relevant articles:</div><div><ul style="text-align: left;"><li><a href="https://thecannabisscientist.com/business-profession/towards-a-united-kingdom-of-cannabis" target="_blank">Towards a United Kingdom of Cannabis</a>: One of the best articles I've found about the UK cannabis situation.</li><li><a href="https://www.pleacommunity.org.uk" target="_blank">Patient-Led Engagement for Access: PLEA</a>: a volunteer-led non-profit community interest company, established to challenge the inequalities in access to cannabis-based medicinal products in the UK.</li><li><a href="https://medcansupport.co.uk/" target="_blank">MedCan Support</a>: MedCan Support provides free resources and educational material on medical cannabis, with a focus on paediatrics and lobbying for NHS access.</li><li><a href="https://www.thecmcuk.org/what-we-do" target="_blank">The Centre for Medicinal Cannabis</a>: a membership association for organisations operating at the forefront of the UK medicinal cannabinoid industry. </li><li><a href="https://www.ukmccs.org/" target="_blank">The Medical Cannabis Clinicians Society</a> (MCCS): an independent community of medical cannabis pioneers, "the first prescribers of this treatment in the UK".</li><li><a href="https://linktr.ee/cannpass" target="_blank">Cannabis Patient Advocacy & Support Services</a>: a collaboration of patients, medical teams, institutions, NGO's & industry.</li><a href="https://thecannabisscientist.com/research-development/cannabis-on-the-nhs-in-2021" target="_blank">Cannabis on the NHS in 2021? It’s long past time for the NHS to embrace medical cannabis as a credible treatment</a>: another good article on tghe UK situation.<li><a href="https://www.drugscience.org.uk/project-twenty-21/" target="_blank">Project Twenty21</a>: working toward affordable medical cannabis treatment, aims to create the UK’s largest body of evidence for the effectiveness and tolerability of medical cannabis. </li><li><a href="http://ukleap.org" target="_blank">Law Enforcement Action Partnership UK</a>: a global network of law enforcement figures which seeks an alternative to our failing, punitive drug laws.</li></ul></div><div style="text-align: left;">Clearly, the absurdity of the current status of cannabis-based medicine in the UK is well understood in some circles. What is needed now is to spread that understanding and ensure that it reaches all corners of power and governance in the country. An enlightened approach to cannabis, led from the top, would enable huge improvements in quality of life for millions of people as well as generate jobs and wealth. Consider the manifold benefits of a blended model in which:</div><div style="text-align: left;"><br /></div><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><div style="text-align: left;">a. recreational use of cannabis becomes a revenue stream for UK companies (growers processors, dispensaries), employees of those companies, and of course the UK treasury, much akin to the alcoholic beverage industry today, and</div></blockquote><div style="text-align: left;"><br /></div><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><div style="text-align: left;">b. the national health system provides affordable medicinal cannabis prescriptions to people in the UK who need them and thereby: reduces use of addictive opioids, treats conditions such as depression, anxiety, ME/CFS and Long Covid; potentially eliminates some conditions, such as childhood epilepsy; and generally improves quality of life for millions. </div></blockquote><p>There are no legitimate barriers to the UK adopting this model and becoming a world leader in responsible cannabis production, research, and medicine. I would certainly vote for this, and I have no interest in consuming cannabis myself. </p><p>[Disclaimer: future changes to my health may create a personal interest in taking cannabis for medical purposes, but in the past I tried recreational use of cannabis and did not enjoy it.]</p><h2 style="text-align: left;">Finally...</h2><div>If you are writing about cannabis-based medicines, I have a request and a free offer. The request is that you use the more accurate terms "cannabis-based medicine" or "medicinal cannabis," and avoid using "medical marijuana." The latter is now widely considered to be inaccurate, confusing, and potentially inflammatory or prejudicial.</div><div><br /></div><div>The free offer is a high resolution version of the public domain image below, created by me for anyone who is illustrating articles, brochures, blog posts, etc. about cannabis-based medicine. This image makes a welcome change from overused and grossly misleading graphics using smoke-shrouded foliage. Free to download from UnSplash using this URL: <a href="https://unsplash.com/photos/qzD_H7-Jcj4">https://unsplash.com/photos/qzD_H7-Jcj4</a>.</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnzqt-s3n4S1lsPeYgdfkdkWSmfUNlo7GgwTsxtsBoLzsE3B1r1sD0oDFWGqCDEgseFzpgMSlBdGjKkasx3gHGm4yEr9C3lgW28Mtj_Qfcb4enyzgHaRJ5TzLrCGJP_dyZGtB_BLV0kB0r/s1644/cannabis-based-medicine-capsules.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="990" data-original-width="1644" height="386" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnzqt-s3n4S1lsPeYgdfkdkWSmfUNlo7GgwTsxtsBoLzsE3B1r1sD0oDFWGqCDEgseFzpgMSlBdGjKkasx3gHGm4yEr9C3lgW28Mtj_Qfcb4enyzgHaRJ5TzLrCGJP_dyZGtB_BLV0kB0r/w640-h386/cannabis-based-medicine-capsules.png" width="640" /></a></div><div><br /></div>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-65022061758670236072021-05-29T15:54:00.001+00:002021-05-29T15:54:45.268+00:00Missing links and images<p>Like their creators, websites age over time, and sometimes they forget things, like where a particular image or document is located. This page is an attempt to provided some of the things that have gone missing on the various Cobb websites, starting with a link to my master's dissertation:.</p><p><b>*Getting to know CISOs</b>: Challenging assumptions about closing the cybersecurity skills gap, <a href="https://stephencobb.netlify.app/content/cobb-stephen-msc-dissertation-2016.pdf" target="_blank">a Security and Risk Management master's degree dissertation (pdf)</a>.</p><p>*<b>The Rock Throwing GIF</b>: I made this to make a point and you are free to use it as well.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglbokaFegu0iRWDDf2NYlCD9uZPg8sXjIzjzMB9aGW0_iOYJQAxT6jgY30dqR2Jy2WZ4WtaxsU4q-Uc_P5M5dDQHUeWPaj7k2_YyYRyH7a-CImkhJMyzVd_enagf2O9vFR5u4QEr6b0BVw/s602/stoner-602.gif" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="232" data-original-width="602" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglbokaFegu0iRWDDf2NYlCD9uZPg8sXjIzjzMB9aGW0_iOYJQAxT6jgY30dqR2Jy2WZ4WtaxsU4q-Uc_P5M5dDQHUeWPaj7k2_YyYRyH7a-CImkhJMyzVd_enagf2O9vFR5u4QEr6b0BVw/s16000/stoner-602.gif" /></a></div><p></p><p>With many thanks to readers who have taken the time to use <a href="https://www.cobbsblog.com/p/contact-stephen-cobb.html">my Contact page</a> to let me know of missing links and pages.</p>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-32139660195543410202021-03-15T22:42:00.043+00:002021-04-05T22:25:08.120+00:00Classic Glass Photography: pursuing a hobby during lockdownI'm into classic glass photography. That's using lenses from old 35mm film cameras to take pictures with modern digital cameras (for example, the Minolta lens on my Olympus camera shown here). <div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBqy9xA8KONJckW_XXIThMyrxVBCfTPfv1s5s_GnpBlB1OLIgNjvlMsWPTdCyBL4H05GPBJtReSodDUR4Ko2vK89Jff9Aa9jisF0A-7RRHVg6cbqKAKzo1-cjGBG5nACEapSo0w7XFZlQO/s1440/classic-GLASS-1440-1080.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1080" data-original-width="1440" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBqy9xA8KONJckW_XXIThMyrxVBCfTPfv1s5s_GnpBlB1OLIgNjvlMsWPTdCyBL4H05GPBJtReSodDUR4Ko2vK89Jff9Aa9jisF0A-7RRHVg6cbqKAKzo1-cjGBG5nACEapSo0w7XFZlQO/w357-h268/classic-GLASS-1440-1080.jpg" width="357" /></a></div><p></p><p>I will write more about my hobby here on this blog. Here are some articles on classic glass:</p><div><ul style="text-align: left;"><li><a href="http://darkerview.com/wordpress/?p=15977" target="_blank">Vintage glass</a></li><li><a href="https://www.outdoorphotographer.com/photography-gear/lenses/classic-glass/">Classic Glass - Outdoor Photographer</a></li><li><a href="https://www.videomaker.com/how-to/shooting/10-vintage-lenses-to-add-to-your-kit-an-in-depth-investigation/" target="_blank">10 vintage lenses to add to your kit: an in-depth investigation</a></li></ul><div>BTW, if you have old 35mm SLR camera lenses around you might want to use them like this, or sell them on eBay. I get the impression that some old lenses are now fetching decent prices if they are in good condition.</div><div> </div><div>(Just FYI, this blog post is being used as a test. I want to see if the image of my camera—shown above—appears automatically when I tweet the page.)</div></div><p></p></div>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-43342666154635473872020-10-29T16:02:00.531+00:002021-07-02T08:25:49.442+00:00Can you tell us a bit about how you grew up? The power of your story, in a time of change<p>This month I took part in a slightly unusual interview. The interviewer was from a publication called <a href="https://medium.com/authority-magazine" target="_blank">Authority</a> and the interview was carried out entirely via email, but that's not the unusual bit. The title of this interview was: <i>5 Things You Need To Know To Optimize Your Company’s Approach to Data Privacy and Cybersecurity</i>. Again, nothing unusual there—I have spent several decades studying how companies approach data privacy and cybersecurity. But consider the very first question of the interview: <b>Can you tell us a bit about how you grew up?</b></p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCqyDtbkS3M4MykC4yW3ewRNybctzF6iCtXvcQrpxtWxTFKnEUqI94P4Up2KiDI03ZeHQ2qYrYtXzRcvDNJX_aHqDWahAF3WZAugJNncYwfsIR5oFyO5IgUErZzCl6e-fKwA1uIS-XP2JP/s800/cyril-and-stephen-cobb-1959.jpg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="800" data-original-width="800" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCqyDtbkS3M4MykC4yW3ewRNybctzF6iCtXvcQrpxtWxTFKnEUqI94P4Up2KiDI03ZeHQ2qYrYtXzRcvDNJX_aHqDWahAF3WZAugJNncYwfsIR5oFyO5IgUErZzCl6e-fKwA1uIS-XP2JP/s320/cyril-and-stephen-cobb-1959.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Six year-old me, with my father,<br />an engineer, in Canada, 1959<br /></td></tr></tbody></table><p></p><p>That may not be an unusual question if you were being profiled by a lifestyle magazine, but as a prelude to professional opinions on cybersecurity? To me, that was unusual.</p><p>However, as I thought about my response—words that would truthfully answer the question while remaining relevant to the context—I not only enjoyed the process, I realized that this was a question I'd been discussing with myself for decades. </p><p>Furthermore, across those decades, the answer has changed, many times. Indeed, the answer to "how I grew up" was often a story of both origins and change, a way to make sense of how my life started out and then turned out. And of course I have told that story many times, in job applications and interviews, at business dinners and networking events, and on the Internet via websites and social media profiles. </p><p>I don't know how you feel about <i>making sense of your life</i>, but I have found that having a coherent personal narrative of my life has helped me to cope with some of the tough times that I've had to live through, mercifully few though those have been. (I am well aware that I have enjoyed exceptional good fortune in life and, as a white male, a massive amount of privilege; however, I have had to face grief and loss, prejudice and enmity, and I know from personal experience what it is like to be unemployed and homeless.) </p><h3 style="text-align: left;">Your story of change</h3><p>Speaking of tougher times, 2020 seems to be determined to bring more of these to more people in more places than any other year since the 1940s. During the ongoing Covid-19 upheaval I have found myself advising several people whose lives and careers are now—for a variety of reasons—in a period of <i>involuntary transition</i>.</p><p>However, because I am not a professional career counsellor or life coach, I felt obliged to bolster my own advice with that of experts. Fortunately, I found this very relevant perspective:</p><blockquote><p>When you’re in the midst of a major career change, telling stories about your professional self can inspire others’ belief in your character and in your capacity to take a leap and land on your feet. </p></blockquote><p>This appears in an article titled <i><a href="https://hbr.org/2005/01/whats-your-story" target="_blank">What’s Your Story?</a></i> by Herminia Ibarra and Kent Lineback that was originally published in the Harvard Business Review magazine. While the article was written over 15 years ago, it remains 100% relevant to 2020. Both authors are considered experts in their field with books to prove it. </p><p>According to Lineback's profile on Amazon: "he helps companies and executives tell their stories, so others can learn from their experiences." Ibarra is an organisational behaviour professor at London Business School and offers lots of organizational and personal development <a href="https://herminiaibarra.com/" target="_blank">resources on her website</a>; she is also active on Twitter as <a href="https://twitter.com/herminiaibarra" target="_blank">@HerminiaIbarra</a>. </p><p>The authors begin their discussion of "Why You Need a Story" with this observation:</p><blockquote><p>"All of us tell stories about ourselves. Stories define us. To know someone well is to know her story..."</p></blockquote><p>However, and to the point of this blog post, they continue: </p><blockquote><p>"Seldom is a good story so needed, though, as when a major change of professional direction is under way...In a time of such unsettling transition, telling a compelling story to coworkers, bosses, friends, or family—or strangers in a conference room—inspires belief in our motives, character, and capacity to reach the goals we’ve set."</p></blockquote><p>If you are dealing with an unsettling transition right now, I strongly urge you to read <i>What's Your Story</i>. And if you are hesitant about the idea of "telling stories," the authors make it clear that: </p><p></p><blockquote>"In urging the use of effective narrative, we’re not opening the door to tall tales. By "story" we don’t mean "something made up to make a bad situation look good." We’re talking about accounts that are deeply true and so engaging that listeners feel they have a stake in our success."</blockquote><p></p><p>Personally, I have been very fortunate to have a lot of time to think about my life this year, and I now see that in the past my career benefited greatly from discussing—with myself and others—factual accounts of my life that are both "deeply true" and "engaging." </p><p>In <a href="https://youtu.be/CIjI3TmEzrs" target="_blank">a 2018 TEDx talk</a>, Ibarra refers to her work as teaching and researching people who come to those points in life that she calls: "what got you here won't get you there moments." I think most of us have experienced moments like that, even before 2020. I hope her article, and the other resources that I have pointed to in this blog post, prove helpful to you in getting through such moments now and in the future.</p><h3 style="text-align: left;">My story of change</h3><div><p>Allow me to close with my version of "a bit about how you grew up" that appeared in Authority, the online publication which uses this tag line: <i>Top Lessons. Top Authorities</i>. Authority is published on the <a href="https://medium.com/" target="_blank">Medium platform</a>, which I have used a few times myself—like this story about lack of <a href="https://medium.com/@zcobb/not-even-10-of-us-trust-tech-firms-to-protect-our-personal-information-17965af86db7" target="_blank">trust in tech companies</a>—but Authority uses Medium at scale. I think at least a dozen other people were interviewed with the same set of questions. You can <a href="https://medium.com/authority-magazine/author-stephen-cobb-5-things-you-need-to-know-to-optimize-your-companys-approach-to-data-privacy-fa0555b67dfa" target="_blank">read the full interview here</a>, but the following is the bit about how I grew up:</p><p><i>I have spent much of my adult life in the US but was born and raised in Coventry, England, a city synonymous with innovations in industrial technology, like the pedal chain bicycle and the turbojet engine, and manufacturers like Jaguar, Land Rover, and Triumph. My father was an engineer, as were my grandfathers. As a teenager in the 60s I aspired to be a celebrated poet and songwriter, but the oil crisis of 1973 crushed funding for the arts and I pivoted into petroleum accounting, tax auditing, and from there to computing; that’s how I became enthralled by the clash of technology and ethics that is at the heart of cybersecurity.</i></p><p>I hope that gives you a sense of who I am, how I got to be who I am, and some of the changes I went through to make a career of studying how humans create and confront technology risks.</p></div>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-15292629947976952962020-09-22T08:31:00.144+00:002020-12-14T16:01:45.174+00:00Just time for a quick update<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoqCpVCD1e4Zzuxri5DVWBldFNRT1P8dYwTaOkl5Lh2d_3M9AtyQmPvIiwqqleO9kP9gwWx-eNUi8m3xJ1gny3viycV7Bb0duASo-QcMb8WCGLJs103TcsMLcwg1xR6quwiWB1HOHuD9r3/s1220/brookstray-wide.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="574" data-original-width="1220" height="270" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoqCpVCD1e4Zzuxri5DVWBldFNRT1P8dYwTaOkl5Lh2d_3M9AtyQmPvIiwqqleO9kP9gwWx-eNUi8m3xJ1gny3viycV7Bb0duASo-QcMb8WCGLJs103TcsMLcwg1xR6quwiWB1HOHuD9r3/w572-h270/brookstray-wide.png" width="572" /></a></div><br />You may recognize the phrase "Just time for a quick update" from <a href="https://en.wikipedia.org/wiki/John_Oliver" target="_blank">John Oliver</a>'s show "Last Week Tonight With John Oliver." Like me, John is a dual national (UK/US) who was born in the UK, in the part that is called The Midlands.<p></p><p>John was born in the city of Birmingham. I was born in the city of Coventry. These two cities are close together but have remained separated by about seven miles of protected green space thanks to some sensible planning here in the Midlands. (Note, it is not called the Midlands because it is in the middle of the UK, it's not, it's in the middle of England, which is one of the four "regions" that make up the United Kingdom—it's complicated.)</p><p>A year ago today, I arrived here in the Midlands from America, with my partner, Chey, to explore a possible future in which we could be closer to my mum—who turned 90 in 2019—and my brother and his wife. Mum was born and raised and still lives in the Midlands. My brother and his wife now live in Spain. </p><p>Less than six months into this experiment, the parameters changed: Coronavirus created a whole new set of variables, including restrictions on our ability to go to Spain or back to America or pretty much anywhere. </p><p>Obviously, no "quick update" can capture the many and varied implications of all this, but fortunately I can point you to some of the things I have been doing during this time, namely research and writing on <a href="https://scobbs.blogspot.com/2020/07/quick-update-malware-cybercrime.html" target="_blank">malware, cybercrime, cybersecurity, and a worrying lack of trust in tech firms</a>. </p><p>I will try to share some of the details of our ongoing experiment as time permits, mainly in the hope of helping others who may been dealing with some of the same challenges we have faced, but also some of the joys we have encountered, like the view at the top of this post. That's what the way to my mum's house looks like on a sunny day in late summer, early autumn.</p><p><br /></p>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-14987007476425612462020-01-30T11:45:00.003+00:002021-01-03T19:29:49.460+00:00Brexit: 11 p.m. GMT on 31 January 2020<p>[UPDATE: 00.01 on 1 January, 2021 — The UK completed it's departure from the EU. A bad idea has now become a bad reality, IMHO.]</p>
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb-2HBuxQEOGw-CvVif0NOvUVXTeu4rpKf_sbG6rtlQCOfRHGCzQZ4-Sq3I0U7OAe75EuJeZe0Li_29Vd18B3YVRQwYhmVziDcKYmXtdobEoyjYAAKyC9wsfn_Ogq_iWBeTltt6lnm2EFW/s700/BREXIT-BAD.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="200" data-original-width="700" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb-2HBuxQEOGw-CvVif0NOvUVXTeu4rpKf_sbG6rtlQCOfRHGCzQZ4-Sq3I0U7OAe75EuJeZe0Li_29Vd18B3YVRQwYhmVziDcKYmXtdobEoyjYAAKyC9wsfn_Ogq_iWBeTltt6lnm2EFW/w469-h133/BREXIT-BAD.png" width="469" /></a></div>
<br />I always thought that joining the ECC/EU was good for the UK.<br />
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I always thought that leaving the ECC/EU would be bad for the UK.<br />
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I am not happy that Brexit is happening. Period. Full stop.<br />
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No, seriously, that is the whole article. Nothing more to read. Too sad and angry to write any more.Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-16360721484491193292019-11-28T08:44:00.002+00:002021-01-11T17:30:25.810+00:00What Am I Thankful For? A diagnosis of congenital amusiaIn November of 2008 I wrote: "we’ve arrived at the time of the year when it’s traditional to speak of things for which we’re thankful, I figured I would put it like this: I am thankful for a diagnosis, even though that diagnosis is hemochromatosis." Now I'm back with thanks for another diagnosis, one that thankfully does not involve physical pain and suffering, although it has had quite an impact on my life.<br /><h2 style="text-align: left;">The difference a name makes</h2>
It was my partner, <a href="https://twitter.com/chey_cobb" rel="noopener noreferrer" target="_blank">Chey Cobb</a>, who received that diagnosis of hemochromatosis. The thankfulness we felt at getting this diagnosis came from having a name for the constellation of symptoms that had forced her to quit working and turned her daily life into a daily struggle (one that, sadly, has continued to this day). We were both surprised by what a difference it makes to have a name for the suffering you've been going through.<br />
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As inveterate researchers, we saw Chey's diagnosis as a starting point for exploring treatment options, finding support groups, and lobbying policy-makers. I started <a href="https://www.facebook.com/Hemochromatosis/" rel="noopener noreferrer" target="_blank">a Facebook page</a> and <a href="https://celticcurse.org/" rel="noopener noreferrer" target="_blank">website to raise awareness</a> of hemochromatosis, which is widely under-diagnosed and not well understood by many doctors. We personally validated a CDC study that found the average time to get one's hemochromatosis correctly diagnosed was nine years, enough time for the condition to cause irreversible damage to joints, liver, heart, brain, kidneys, and other organs.<br />
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Sadly, we saw a replay of this diagnosis phenomenon three years ago when doctors confirmed our daughter's suspicions that she had Multiple Sclerosis (MS). The day she got that confirmation she called us in state akin to elation, tinged with validation, even though she knew all too well that the road ahead was going to be a very tough one. But we understood how much it meant to have a name for what you've got.<br /><h2 style="text-align: left;">Now hear this</h2>
When you get a medical diagnosis, particularly one that's taken many years to obtain, there are two phrases that are likely to come to mind right away: "that explains a lot" and "I knew I wasn't imagining things." (The latter is likely to be familiar to female readers - numerous studies show that the tradition of doctors telling women their symptoms are "all in your head" is still a thing.)<br />
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The diagnosis that I am thankful for today "ticks all the boxes" as they say in England: it explains a lot, and it validates a whole bunch of thoughts and feelings I've had since December, 1959. That's when, during rehearsals for the school Christmas concert, I first learned of the problem for which I now have a diagnosis: <b>congenital amusia</b>.<br />
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Technically, "a deficit in fine-grained pitch discrimination," what I have is sometimes called "tin ear." Indeed, what the teacher said to seven year-old me was: "Stephen Cobb, stop singing, you have a tin ear." What Mrs. Ashby did not know, and I have only just learned, is that I was born that way. In other words, congenital amusia means that I have always been, from birth, somewhat tone deaf.<br />
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(I don't want to go into detail about the congenital amusia in this article - I put together the <a href="https://www.4amusia.com/" rel="noopener noreferrer" target="_blank">4amusia website</a> for more information - but studies show that 4% of people have this disorder. My particular form of amusia is not severe, it doesn't mean I don't enjoy music, and I don't lack a sense of rhythm; but, regardless of how hard I try, I can't sing or learn a musical instrument - my brain lacks something in the pitch processing and retention department.)<br />
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What I am so thankful for today is the knowledge that my inability to carry a tune or learn a musical instrument is not due to laziness, sloth, or weakness of character - qualities of which I, and many other people with my condition, are routinely accused. I am so grateful that I can now say, with scientific certainty, that those accusations were inappropriate.<br /><h2 style="text-align: left;">Lingering effects</h2><div>I'm sure I could write a whole chapter about how much it hurt to suffer those accusations, the self-recrimination and doubt that it induced. I know I could have done without the castigation of teachers who were sure I could learn to play the recorder - a rite of passage in English schools of the 1950s and 60s - if only I would apply myself.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLrfzEXDtAeuR78d_WAmQJxFNycH3yew5fyqbztWLCmcQ_-3GPt7eAl5GHq_FptbPJXmpsYcvXGDFTKsOy7EWlPHhJ77bBLbsnUwY5_s6ZdeAiPYKeYjFx5MzNP8FpaqX1P15M4Apbfbg4/s1600/leeds-uni-1973.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="600" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLrfzEXDtAeuR78d_WAmQJxFNycH3yew5fyqbztWLCmcQ_-3GPt7eAl5GHq_FptbPJXmpsYcvXGDFTKsOy7EWlPHhJ77bBLbsnUwY5_s6ZdeAiPYKeYjFx5MzNP8FpaqX1P15M4Apbfbg4/s400/leeds-uni-1973.jpg" width="250" /></a></div>
Then there's the chapter on how frustrating it was to grow up in the sixties with a strong poetic streak but no ability to voice the songs I composed, not to mention fruitless hours failing to learn guitar. Sure, I could pose for the album cover, but I was never going to be on the album.<br />
<br />
But today I'd much rather give thanks for the unexpected gift of this diagnosis: the empathy it has given me for this thing called neurodiversity, the growing realization that human beings are not all wired the same way.<br />
<br />
While I realized long ago that organizational aversion to people who are "different" is bad for organizations, and bad for "differently-abled" people who can bring great insight and real value to any mission, I have to admit that I didn't truly 'get' neurodiversity until I learned that my own brain had a wiring issue.<br />
<br />
And as I look at what is happening today in terms of research, it strikes me that there is great potential for humans to learn more about the many different ways in which we are wired. These days a decent school is going to recognize something like dyslexia at an early age and respond appropriately. Hopefully, schools will soon be recognizing that some children don't hear pitch the same way most people do.<br />
<br />
While I sometimes get quite emotional about this topic, let me be clear that knowing more about neurodiversity isn't just about people feeling better about themselves, it has seriously practical implications. Knowing the ways in which you are different makes you better able to be the way you are, and it sometimes happens that there are benefits to being wired differently. Society is better off as a whole if we can see that, and go with it.<br />
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<i>*With a huge thanks to those scientists who believed people when they said "my failure to learn an instrument was not for lack of effort."</i></div>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com1tag:blogger.com,1999:blog-6636098126419169338.post-53540944475014003942019-07-15T16:32:00.009+00:002020-12-14T12:46:03.832+00:00It's official! I'm making some big changes<b>I have retired from my corporate position and we're moving to England!</b><br />
<br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5FE3hAlC1qBAZFMqOTCs6dOBXFgZXGZ_PQERTf_nnfRGQk0naEIwPUayPagC7zbxCNkHJ2Oxbk9-1K00QsZ8GCBrE3bJj-olTXVN-0P5MDhJreRxSnKVkUrSkN2swnxVh2GWsJTy28pck/s1600/the-croft-cov-607x1024.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1024" data-original-width="607" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5FE3hAlC1qBAZFMqOTCs6dOBXFgZXGZ_PQERTf_nnfRGQk0naEIwPUayPagC7zbxCNkHJ2Oxbk9-1K00QsZ8GCBrE3bJj-olTXVN-0P5MDhJreRxSnKVkUrSkN2swnxVh2GWsJTy28pck/s640/the-croft-cov-607x1024.jpg" width="379" /></a></div>
After many enjoyable years with ESET—the organization I've worked for longer than any other—I began to think it was time to change things up a little, or down a notch, depending on your perspective.<br />
<br />
And I knew that—owing to several factors on which I will elaborate later—the change would involve a move. So we began to look at living somewhere other than San Diego.<br />
<br />
When Chey and I went to the UK earlier this year—for my mum's 90th birthday—we arrived at the conclusion that we would like to move closer to her. We now plan to complete our relocation by early September, to a cozy place just a short walk from mum's flat in <a href="https://en.wikipedia.org/wiki/Coventry" rel="noopener noreferrer" target="_blank">Coventry</a>, the thousand year old city in which I was born. And when we've unpacked and the dust settles, I expect to be sitting in a comfy chair in small study with a <a href="https://www.cityfibre.com/gigabit-cities/coventry/" rel="noopener noreferrer" target="_blank">big internet pipe</a>, conducting independent research into the darker aspects of humans and technology.<br />
<br />
I will probably reemerge as Stephen Cobb, Independent Researcher. Down the road it could be Stephen Cobb, <a href="https://public-interest-tech.com/" rel="noopener noreferrer" target="_blank">Public-Interest Technologist</a>. (And I wouldn't rule out Prof. Cobb since Coventry has <a href="https://www.topuniversities.com/university-rankings-articles/qs-best-student-cities/coventry" rel="noopener noreferrer" target="_blank">two thriving universities</a> and there are several more nearby, including my <i>alma mater</i>, the <a href="https://le.ac.uk/criminology" rel="noopener noreferrer" target="_blank">University of Leicester</a>).<br />
<br />
<b>What? When?</b><br />
<br />
Timing is not always everything, but it did play a big role in this set of changes. By the end of 2018 I had reached a point in time that is referred to in America as "full retirement age." This is when Americans can start receiving the full amount of their pension (if you were born in 1952, that age is currently 66). What I mean by "pension" is <a href="https://www.ssa.gov/benefits/retirement/?gclid=Cj0KCQjwrpLoBRD_ARIsAJd0BIVY4NmSGy9D9EbWLsHYFCvN8VBrYKLGFDQvrJzQNfZL2-yFQTxG_xgaAmrXEALw_wcB" rel="noopener noreferrer" target="_blank">Social Security retirement benefit</a>, but we decided to use the term <i>pension</i> because in England "<i>social security</i>" means something quite different.<br />
<br />
As 2018 unfolded I began see this pension as a "social retainer," a way for me to finance a different approach to my life's work, a chance to labor at my own speed, in my own way. I will write more about that work in a <a href="https://scobbs.blogspot.com/" rel="noopener noreferrer" target="_blank">different place</a>, but suffice to say it involves - among other things - helping the world to "enjoy safer technology." As you may know, that phrase is how ESET - my former employer - frames its mission, and it's one reason that I worked there so long.<br />
<br />
I realized that a pension potentially means being able to choose my own strategy - like writing a book to give substance to the points I want to make, or making those points as an independent voice, not someone employed by a corporate entity (to be clear, ESET had an admirable commitment to objective research and required me to stay "vendor-neutral" in my public speaking - but one ethical company cannot save the reputation of an industry that <a href="https://www.linkedin.com/pulse/vendor-neutral-cybersecurity-education-new-years-resolution-cobb?trk=portfolio_article-card_title" rel="noopener noreferrer" target="_blank">needs redeeming</a>).<br />
<br />
But why did I say: "a pension <i>potentially</i> means being able"? Well, the enabling power of a pension is dependent on the size of that monthly check from the government relative to the cost of living where you live. Exactly how dependent will vary based on your circumstances. All of which turns out to be quite relevant to our decision to move to Coventry in England, as I will now explain.<br />
<br />
<b>How much?</b><br />
<br />
The "Too Long, Didn't Read" version is that the pension checks which Chey and I started to receive this year are not enough to live on in San Diego given that we don't own a home here. We are members of a fairly large group of people whose assets were wiped out by the Great Recession, so we entered this decade with no savings and no home of our own.<br />
<br />
Since 2011, we have lived in rented property in San Diego, where the <a href="https://www.rentcafe.com/average-rent-market-trends/us/ca/san-diego/" rel="noopener noreferrer" target="_blank">average rent</a> is now over $2,000 a month. When we moved here we decided to live near the ESET building in Little Italy so that I could walk to work (which costs a lot less than driving, with way less stress). You pay a premium for this location but sadly, Little Italy has become less of a community in recent years, and more of an entertainment district. We have felt it grow less livable even as it has become less affordable, providing additional incentive to move from our current location. (After dozens of moves in the nearly five decades since I left home, I've come to see moving across the country or over the ocean to be no more of a pain than moving across town.)<br />
<br />
Last year, rents in San Diego as a whole rose 7%, and the average monthly rent in Little Italy is now over $2,400, and still rising. We pay slightly more than that, for a decidedly smaller place than the one we rented for $1,750 when we first moved here in 2011. So, unless you already own property in San Diego, or have managed to accumulate and retain a large nest egg, the prospect of retirement here, however appealing it might seem, is economically infeasible.<br />
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Being researchers, we analyzed numerous "more affordable" places after our nest egg was cracked by the Big Bank Fraud (then smashed by the Great Recession and mopped up by the for-profit healthcare industry). Turns out we can live in a nice house in Coventry for less than half what we currently pay in Little Italy. True, Coventry has less than half the number of sunshine hours you get in San Diego, and twice as much rain, but our pensions should be enough to pay the bills plus occasional flights to see my brother in Spain, while keeping us in wax jackets and wellies to boot.<br />
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The changes we are making this year have already taught us a lot and as our journey continues I will endeavor to share what we discover along the way. In the meantime, I will be <a href="https://twitter.com/zcobb" rel="noopener noreferrer" target="_blank">tweeting as @zcobb</a> if you'd like to follow me there.<br />
<br />
Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com1tag:blogger.com,1999:blog-6636098126419169338.post-11745056492743813332019-05-31T14:24:00.002+00:002021-01-18T12:00:25.851+00:0023andMe and Hemochromatosis<br />
<div class="MsoNormal">
This blog post is a place holder related to a conversation that started back in 2016 when someone wrote to me, as follows:</div>
<div class="MsoNormal" style="-webkit-text-stroke-width: 0px; color: black; font-family: "Times New Roman"; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"></div><blockquote><div class="MsoNormal" style="-webkit-text-stroke-width: 0px; color: black; font-family: "Times New Roman"; font-size: medium; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;"><i>
I read your blog regarding Hemochromatosis and decided to look further into the
23andMe test. They tell me that their test results do not report on HFE. Do you
know if this is a recent change with their testing or am I missing something?
Below is the email correspondence I had with 23andMe </i>[not reproduced here]<i>. </i><i>Do current 23andMe test results show C282Y, H63D and S65C mutations? If so, where do I find this information in the reports?</i></div>
<div>
</div></blockquote><div>The question was addressed to me because I had been researching hereditary hemochromatosis due to my <a href="https://twitter.com/chey_cobb" target="_blank">partner's</a> condition: hereditary hemochromatosis. This is due to a genetic mutation (HFE) which can cause the body to mishandle iron intake. This can lead to excess iron in your joints and soft tissue, an affliction known as iron overload. If not treated and managed, iron overload can cause permanent damage and may prove fatal. </div><div><br /></div><div>We had both been early customers of the 23andMe genetic testing service. Back then it was possible to get information about one's HFE status (known by codes like C282Y, H63D and S65C). However, in 2013 the FDA took issue with 23andMe and censored access to this data. (Some of the background to this, from <a href="https://customercare.23andme.com/hc/en-us/articles/211831908-23andMe-and-the-FDA" target="_blank">23andMe's perspective, is here</a>.)</div><div><br /></div><div>In response the FDA restrictions, people found a way to extract the HFE data from the raw 23andMe genetic data (to which the FDA did not bar access). That was the situation in 2016 when I received the inquiry cited at the top of this article. However, in 2017, the FDA allowed 23andMe to resume the provision of HFE results (<a href="https://blog.23andme.com/health-traits/23andme-adds-new-genetic-health-risk-reports/" target="_blank">as described here</a>).</div><div><br /></div><div>The bottom line is that the set of instructions that I wrote up in 2014, <a href="https://www.celticcurse.org/2014/09/hacking-hemochromatosis-how-to-get-your.html">documenting the workaround</a> to determine HFE status from the raw data, is no longer needed.
<br /></div><div><br /></div><div><br /></div>
Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-90141000320649410362019-01-13T16:51:00.000+00:002022-04-30T11:42:50.627+00:00High blood pressure cure? For some, this treatment is not a conn<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7qeg9vd7AIUxDB2FQsUBQzQNkQt437w9j2l7zXODnsNUkEpwKh7Hk21oh1-JMvJKw5oIw9DfU5CsrMPevSuPBt1vE3bc_Cjv64L8pT255SZhJcFk-H6tPK8P4vLNlMPFISlV0BQskdZwSJY8pkhICIAGhE_eBnEFPwhA-eVujtevTVNzHHWUADTfWHQ/s1288/blood-pressure-unsplash-square.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1174" data-original-width="1288" height="292" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7qeg9vd7AIUxDB2FQsUBQzQNkQt437w9j2l7zXODnsNUkEpwKh7Hk21oh1-JMvJKw5oIw9DfU5CsrMPevSuPBt1vE3bc_Cjv64L8pT255SZhJcFk-H6tPK8P4vLNlMPFISlV0BQskdZwSJY8pkhICIAGhE_eBnEFPwhA-eVujtevTVNzHHWUADTfWHQ/s320/blood-pressure-unsplash-square.png" width="320" /></a></div><b>Short Version/TLDR</b>: <div><br /></div><div>I used to have persistent high blood pressure (HBP) that was referred to as "essential hypertension," but now I don't. <div><ul style="text-align: left;"><li>If you have HBP and low potassium, check out Conn's syndrome, also known as Primary Aldosteronism or PA. </li><li>If you have PA/Conn's syndrome, an operation can fix it. </li><li>I had the op in 2013 when my BP was 150/100 while on HBP meds. </li><li>At the end of 2013 my blood pressure was 120/70 w/out meds, and it still is.</li></ul></div><div><h2 style="text-align: left;">Why am I re-sharing this information?</h2>I wrote about my experience with Conn's syndrome back in 2013. This blog post is simply a re-sharing of what I wrote back then (with one new piece of data at the end).<div><br /></div><div>Why am I doing this? Every time I hear a person say "I have high blood pressure" or HBP, my thoughts go like this:<ul> <li>I know what HBP is like.</li><li>HBP is not very nice.</li><li>HBP can shorten your life.</li><li>I am extremely fortunate that I don't have HBP any more.</li><li>Should I tell this person about Conn's syndrome?</li></ul>Of course, the answer to the "should I tell" question depends on a range of variables: who is the person saying they have high blood pressure? Where is this being said? Do I know this person? I try to weigh these variables before speaking, but as people who know me will tell you, I tend to err on the side of speaking up, sometimes to strangers. I also have a tendency to speak up about some things that other people might prefer to keep private.<br /><br />However, a fair number of people have thanked me for sharing the story of my battle with high blood pressure because they found it helpful. And that is why I wrote about my experience, so people could "read all about it" if they wanted to, rather than listen to me talk about it.<br /><br />So here are the relevant blog posts in historical order (as in <em>earliest first</em> - I am not suggesting that these articles are 'historic'):<br /><ul style="text-align: left;"><li>June 4, 2013: The adrenalectomy story begins...<a href="https://www.cobbsblog.com/2013/06/sorry-i-been-out-of-touch-my-adrenal.html" rel="bookmark" title="Sorry I’ve been out of touch (my adrenal adenoma is to blame)">Sorry I’ve been out of touch (my adrenal adenoma is to blame)</a></li><li>June 5, 2013: The Conn is on...<a href="https://www.cobbsblog.com/2013/06/cobb-got-conn-probably-but-i-go-through.html" rel="bookmark" title="Cobb’s got Conn’s? Probably, but I go through Adrenal Vein Sampling (AVS) to be sure">Cobb’s got Conn’s? Probably, but I go through Adrenal Vein Sampling (AVS) to be sure</a></li><li>July 13, 2013: A geek worried about a robot? <a href="https://www.cobbsblog.com/2013/07/robot-or-not-robotic-surgery-and-risk.html" rel="bookmark" title="Robot or not? Robotic surgery and risk, part one">Robot or not? Robotic surgery and risk, part one</a></li><li>August 25, 2013: Success is in sight! <a href="https://www.cobbsblog.com/2013/08/adrenalectomy-from-pain-to-promising.html" rel="bookmark" title="Permanent link to Adrenalectomy, from pain to promising signs of progress">Adrenalectomy, from pain to promising signs of progress</a></li></ul><h2 style="text-align: left;">What now?</h2>I always intended to write one more blog post on this topic, documenting the long-term prognosis and perhaps adding some references. I guess this is that 'one more' blog post. Sadly, I don't have time to do a full reference list but this article on <a href="https://www.netdoctor.co.uk/conditions/heart-and-blood/a1162/conns-syndrome/">Conn's syndrome</a> is quite helpful, as is this <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5938278/">more technical paper</a>). Also check out the <a href="https://www.primaryaldosteronism.org/" target="_blank">Primary Aldosteronism Foundation</a> website.</div><div><br />My sense from reading the literature is that there will be many more cases like mine: people cured of their HBP, often after years of being told that their HBP had no known cause and they just weren't eating and living right. These people will be identified by: [a] continual improvements in ultrasonography (US), computed tomography (CT), and magnetic resonance imaging (MRI); and hopefully [b] greater awareness of Conn's / Primary Aldosteronism.<br /><br />The summer of 2018 marked the five year anniversary of the operation that returned my blood pressure to 'normal' without drugs. It has been a busy five years. I started a masters degree in late 2014 and graduated in 2016, all while carrying a very full workload (from an employer wise enough to subsidize graduate school tuition).<br /><br />For the most part I have felt pretty healthy. There have been some issues with my digestive system and I sometimes wonder if they are a lingering side effect, not of the adrenalectomy itself, but the infection I got during my hospital stay. </div><div><br /></div><div>Nevertheless, that operation was well worth it and I feel very fortunate that—thanks again to a wise employer—my health insurance covered it. I am reminded that it is in the national interest for everyone to have access to affordable healthcare, so that the negative economic impact of conditions like HBP can be reduced by more efficient diagnosis and treatment.</div><h2 style="text-align: left;">The sting in the tale</h2><div>An update from late 2019: my adrenalectomy did not cure my atrial fibrillation, which was probably caused by the excess aldosterone in my body during all those years in which my primary aldosteronism went undiagnosed. </div><div><br /></div><div>Sadly, "the current diagnosis of primary aldosteronism is suboptimal–its delayed diagnosis results in end-organ damage that requires complex management...an increased awareness of primary aldosteronism is required in both primary and tertiary care so that an earlier diagnosis can be made for optimal patient outcomes." That's from a 2018 article in the <i>Australian Journal of General Practice</i> published by the Royal Australian College of General Practitioners (<a href="https://www1.racgp.org.au/ajgp/2018/october/current-pattern-of-primary-aldosteronism-diagnosis" target="_blank">here's a link to the article</a>).</div><div><br /></div><div>All the more reason to let more people with high blood pressure know about Conn's syndrome / Primary Aldosteronism, so they can ask their doctors to investigate, before excess aldosterone has a chance to do lasting damage.</div><div><br /></div></div><div>One of these days I will write about how many doctors and cardiologists missed the classic symptoms of my primary aldosteronism, and how I feel about that. In the meantime, I will keep telling people that there may be a cure for their "essential hypertension."</div></div>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.comtag:blogger.com,1999:blog-6636098126419169338.post-83285683560673103362017-11-15T11:18:00.006+00:002021-09-22T09:34:04.491+00:00What's this #HeForShe thing?<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyhk7VJ9QQj5Irtqfbc_HxifjrFfxuZoTAqkKD3AYIqq5sOv8i6a4q1gw8ly9qrrCsf4hiWZI0LRkliCXRwWJ4SQ7_oE5cChJzYZRUKc0O_tHSDTHbTfA3kuvPoFFjiuWtAfDJHqFdoXC5/s1600/HeforShe-300x125.png" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="125" data-original-width="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyhk7VJ9QQj5Irtqfbc_HxifjrFfxuZoTAqkKD3AYIqq5sOv8i6a4q1gw8ly9qrrCsf4hiWZI0LRkliCXRwWJ4SQ7_oE5cChJzYZRUKc0O_tHSDTHbTfA3kuvPoFFjiuWtAfDJHqFdoXC5/s1600/HeforShe-300x125.png" /></a></div>
Technically speaking, #HeForShe is a hashtag, a social media tool defined as: "a word or phrase preceded by a hash or pound sign (#) and used to identify messages on a specific topic (<a href="https://en.wikipedia.org/wiki/Hashtag" rel="noopener noreferrer" target="_blank">Wikipedia</a>).<div><br /></div><div>The <a href="https://twitter.com/search?q=%23HeForShe&src=tyah" rel="noopener noreferrer" target="_blank">#HeForShe</a> hashtag originated with, and is the name of, the <a href="https://www.heforshe.org/" rel="noopener noreferrer" target="_blank">UN Women’s solidarity movement for gender equality</a>.<br /><br />
The idea behind HeForShe is to invite men and boys "to build on the work of the women’s movement as equal partners, crafting and implementing a shared vision of gender equality that will benefit all of humanity."<br /><br /></div><div>Tagging things #HeForShe is a way for me to share the fact that I have accepted that invitation and I have been using the hashtag for a while now. Why? Because I truly believe that gender equality does benefit all of humanity. I also believe that gender equality will not be achieved unless more men - most men, all men - commit to it, and make it a priority, in practical terms and not just as a vague aspiration.<br />
<h2>
Getting schooled on #HeForShe</h2>
I came to know about #HeForShe because I was studying at the University of Leicester when, back in May of 2015, it joined the UN Women’s HeForShe solidarity movement as an "IMPACT 10x10x10 champion," one of 10 universities around the world participating in the program with the goal of taking "bold, game-changing action to achieve gender equality within and beyond their institutions." Here's how the program was introduced:<br />
<blockquote>
"Announced at the World Economic Forum in Davos, Switzerland, in January of 2015, HeForShe’s IMPACT 10x10x10 programme engages 30 key leaders across three sectors—the public sector, private sector and academia. All 30 IMPACT champions have made common commitments and have also developed tailored commitments, formally reviewed by an expert team at UN Women and approved personally by the Executive Director of UN Women, Phumzile Mlambo-Ngcuka."</blockquote>
But the fact that my school had embraced HeForShe was not why I chose to embrace it myself. Gender equality is something I have always believed in, from well before my first stint at university (University of Leeds, 1971-74). I can't say that I was born a feminist - the scientific jury is out on whether that is even possible - but I knew that I was a feminist-sympathizer as soon as I heard the word used in a sentence. That would have been around 1965, shortly after I became a teenager and read my mum's copy of <i>The Feminine Mystique.</i><br />
<br />That book, and several other "radical" texts, showed up in our house in the mid-sixties when my mum enrolled in a teaching college under a government program to reduce the shortage of teachers created by the baby boom. Her decision - which my dad supported practically, emotionally, and philosophically - resulted in a real world experience of gender equality in action. Among other things it demonstrated that:<ol>
<li>Women can have a productive career outside the home.</li>
<li>This is not a threat to men.</li>
<li>Men and boys can do housework quite well if they try.</li></ol>
On top of that, mum's time as a mature student created a steady flow of interesting books into our house, notably the afore-mentioned 1964 classic, <a href="https://en.wikipedia.org/wiki/The_Feminine_Mystique" rel="noopener noreferrer" target="_blank">The Feminine Mystique</a>, by Betty Friedan. This has since been "widely credited with sparking the beginning of <a href="https://en.wikipedia.org/wiki/Second-wave_feminism" title="Second-wave feminism">second-wave feminism</a>." As I read - entirely of my own volition - Friedan's analysis of women frustrated with society's narrow and deeply limiting definition of what a woman should be - wife, mother, cook, cleaner - it rang true with my own observations.<br />
<br />
That's right, I had - for whatever reason - been observing women from an early age (maybe I was born to be social scientist). As a child I was surrounded by women, at home, at church, and at the shops. I listened to them talking. I read women's letters to the advice columns in ladies' magazines (which were definitely <i>not</i> feminist back then).<br />
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Rather fortuitously, my childhood in Coventry, England, was enriched by frequent visits from numerous aunts and great aunts, all of whom had all survived World War Two. My mum's mother had actually lived through aerial attacks in both World War One and World War Two. All of these women had lived through large-scale bombing campaigns, including the one in 1940 that killed over 500 people in Coventry in one night and destroyed two-thirds of the city's buildings (<a href="https://en.wikipedia.org/wiki/Coventry_Blitz" rel="noopener noreferrer" target="_blank">Wikipedia</a>). My grandma and several of her sisters worked in munitions factories which were targeted in these bombing campaigns.<br />
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Often when I was small these women, most of them housewives with grown children, would sit and talk about those times gone by, and I would quietly listen at their feet. That is how I came by precious historical vignettes like this: my Great Aunt Tot standing in the middle of the street shaking her fist and swearing at a German Messerschmitt 109 as it made a daylight strafing run on the factory at the end of her road.<br />
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So maybe it is not surprising that I grew up thinking of women as strong, independent individuals; all the while becoming increasingly angry that society would not treat them equally. Yes, there has been some progress, but nowhere near enough. Hopefully #HeForShe can help us move things forward.<br />
<h2>
Of allies, male feminists, and good men</h2>
I hope to find time to write more about HeForShe but in the meantime I will try to use the hashtag wherever appropriate in order to raise awareness of gender inequality and the need for men to work to eliminate it.<br />
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What I will try to avoid is referring to myself as an ally of women, or a male feminist, or a good man. Those are designations to which I aspire, but it is not part to claim them.</div>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-27447670190686540422017-07-04T14:47:00.000+00:002021-01-03T21:42:36.426+00:00Will "repeal and replace" hurt genomic medicine and victims of genetic
conditions?Let me give you the short version of my answer up front: Yes. If the current privacy protection for genetic medicine in the US, in which Obamacare/ACA has played a key role, is diminished by the "repeal and replace" efforts of the current US administration, then America's hopes for genomic medicine will also be diminished. Victims of some genetic conditions will be particularly hard hit, as will all forms of research that involve the human genome.<br /><br />The even shorter version goes like this: Why would I give anyone my genetic information if that might lead to myself and my family being denied insurance or paying higher premiums, for medical, life, or longterm care policies?<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://upload.wikimedia.org/wikipedia/commons/0/0c/DNA_animation.gif" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="brian0918, Public domain, via Wikimedia Commons" border="0" data-original-height="313" data-original-width="181" src="https://upload.wikimedia.org/wikipedia/commons/0/0c/DNA_animation.gif" /></a></div>Fans of genomic medicine are apt to respond by saying there's no need to worry because there are laws to prevent that type of discrimination. To which I have heard many people say: I don't trust the insurance companies and/or the government to abide by those laws. And besides, laws can be repealed, and databases can be hacked.<br /><br />In short, when it comes to enjoying the benefits of medical science, Americans face a bleaker future than the residents of other wealthy countries due to the absence of two rights: the right to health care and the right to privacy.<br /><h2 style="text-align: left;">Background</h2><strong>Who am I to present these arguments?</strong> For more than 25 years I've been studying information security, data privacy, and risk. I've been a Certified Information System Security Professional for more than two decades and I have a Master of Science degree in Security and Risk Management. I have also put in more than a decade as primary caregiver for someone with a genetic illness (variously known as hereditary hemochromatosis, genetic haemochromatosis, Celtic Curse, Bronze Diabetes, Iron Overload). In that role I have spent many years interacting with the families of hemochromatosis patients and the main support group for this condition, the Iron Disorders Institute.<br /><br /><strong>What is the problem?</strong> The House recently passed legislation called the American Health Care Act of 2017 (H.R. 1628). There is a Senate version known as the Better Care Reconciliation Act of 2017. As far as I know, both of these pieces of legislation remove a gene-related provision of the current law, ACA (a.k.a. Obamacare). Here's the problem:<ol> <li>The <a href="https://ginahelp.org/" rel="noopener noreferrer" target="_blank">Genetic Information Nondiscrimination Act of 2008</a> a.k.a. GINA says employers and health insurers can't use your genetic data in hiring decisions and health insurance coverage; but, as Maryam Zaringhalam at Slate points out: life, disability, and long-term care insurance are not covered under GINA’s provisions, and those insurers "<a href="https://www.fastcompany.com/3055710/if-you-want-life-insurance-think-twice-before-getting-genetic-testing" rel="noopener noreferrer" target="_blank">already use genetic testing results to deny coverage</a> to otherwise healthy individuals".</li> <li>Furthermore, GINA only protects people who are genetically predisposed to a disease as long as they are asymptomatic. In other words: "once a person begins showing symptoms, GINA no longer matters" (Zaringhalam- see link in References below). For example, my wife was born with the HFE mutation that can produce a potentially fatal condition known as iron overload but she was asymptomatic for the first few decades of her life. Then, in her forties, due <a href="https://celticcurse.org/the-original-hemo-pause-post-what-women-of-a-certain-age-should-know-about-hh/" rel="noopener noreferrer" target="_blank">a phenomenon dubbed hemopause</a>, she became increasingly symptomatic. She is now eminently "declinable" under pre-Obamacare rules.</li> <li>This GINA "loophole" as Zaringhalam calls it, was closed by Obamacare. That's because the ACA outlawed discrimination in health care insurance pricing or coverage based on preexisting conditions.</li> <li>Now the current administration looks set to return America to the days when preexisting conditions were considered grounds for charging higher insurance premiums.</li> <li>That would mean returning health insurance to the list of things you pay more for if your insurer has knowledge of your genes. Remember, that list already includes life, disability, and long-term care insurance.</li></ol>I would be the first to admit that the above is a simplified account of the problem, but I stand by its accuracy and will go into more detail below. A complicating, and possibly offsetting factor in this story is the plethora of state laws on genetic data, medical privacy, and health insurance. Those might give you hope, but then you have to factor in the rampant hacking of supposedly private databases of personal and medical information that we have witnessed over the past few years. Bottom line? It is not hard to understand a response of "No way!" when you suggest to someone that they should get their genes tested, even when that test could potentially save their life, or those of their relatives.<div><br />
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<div>...</div><div>And the AHCA/BCRA may not be the extent of genetic meddling by the current administration. Legislation has been proposed that would enable employers to charge employees a prohibitively higher premium for employer-provided healthcare if the employee does not share his or her genetic data. Check out <a href="https://celticcurse.org/hr-1313-life-threatening-law-targets-americans-with-genetic-defects/" rel="noopener noreferrer" target="_blank">HR 1313</a> and some of the articles about it that I have listed below.</div><h2>Healthcare's genetic dimension</h2>The following statement should concern every company and investor in the field of human genomics: if the current administration's stance on preexisting/genetic conditions does not change, then other countries, the ones with universal healthcare, will continue to tap more and more of the benefits of genetic science, even as misguided policies in America continue to cripple genomic medicine.<br /><br />Those short-sighted, science-constraining policies include charging some people more for insurance than others, based on their DNA. While many Americans have a vague notion that genetic discrimination is illegal in America because of GINA, the reality is quite different, as I pointed out above. GINA already allows insurance companies to charge you more for long-term care policies and life insurance policies (think about that if you plan on getting old in America, or want to use life insurance to provide for loved ones when you die). And I know from personal experience that GINA is not as reassuring to people with genetic conditions as its advocates had hoped (as I will explain in a moment).<br /><br />Fortunately, the country took a step in the right direction when Obamacare closed the GINA health insurance loophole. The medical benefits of prohibiting health insurance pricing and coverage based on preexisting/genetic conditions are obvious: the more that doctors know about your genetics, the better placed they are to care for you. The more you trust that your DNA won't be used against you, the more likely you are to share that information.<br /><br />That expansion of genetic knowledge, personally and in the aggregate, is the direction science has been taking since DNA was discovered. Take hereditary hemochromatosis. Known as HH for short, it also used to be called bronze diabetes because it can turn your skin orange and cause diabetes. If HH is not properly diagnosed and treated it can kill you (unless you kill yourself first - think of all the health problems that the great American writer Ernest Hemingway suffered from before he shot himself - he suffered from <a href="https://celticcurse.org/hemingways-death-and-hemochromatosis-awareness/" rel="noopener noreferrer" target="_blank">undiagnosed bronze diabetes</a>).<br /><br />Discovery of the genetic basis for HH in 1996 revolutionized care for this condition. By testing the genes of people with HH symptoms, the condition could be definitively confirmed and thus appropriate treatment could be confidently prescribed. Fortunately, the basic treatment is to draw blood, and if your HH is diagnosed soon enough and doctors respond appropriately your life expectancy will not be decreased.<br /><br />But wait there's more, discovery of the genetic basis of this condition made it possible to calculate how many people might have the mutation. Scientists dubbed the mutation HFE and they found several variants, known by memorable names like C282Y and H63D. By testing the DNA of sample groups of people, researchers could extrapolate the prevalence of HFE mutations and carriers. It turns out that about 1 in 250 white Americans are susceptible, particularly those with Northern European ancestry.<br /><br />All of which is valuable data to improve the fight against HH. If someone is diagnosed with HH, family members can be tested and those that are susceptible can make prophylactic lifestyle changes (reducing their consumption of alcohol, red meat, and tobacco for a start). I have heard many cases where the diagnosis of one family member helped improve the health of several relatives, and will continue to do so for generations to come. For some genetic conditions it is conceivable that they could be entirely eliminated over time.<br /><h2>How to handicap genetic medicine in America</h2>Unfortunately, before Obamacare, insurance companies could delay, and/or charge more for, medical coverage of preexisting conditions. So a lot of people that I met in the iron disorders community before 2010 were very reluctant to get genetically tested. Let me explain why that is not good. I don't mean that those people are not good. These are good people put in a bad situation.<br /><br />Suppose you are concerned that something like HH runs in your family. This mutation can cause your body to retain excess iron that damages organs like the liver, heart, and brain, as well as joints. If untreated it can kill you. On the other hand, if you know you inherited the genetic mutation responsible for HH then you can adjust your lifestyle to reduce the chances the condition will express. Furthermore, you can request an annual check of your iron (ferritin) levels to detect any increase above normal (ironically, ferritin levels used to be checked routinely before 1996, revealing hidden cases of HH, but now your doctor may need to suspect HH before ordering).<br /><br />I hope it is becoming clear that unless America firmly and for all time bans discrimination in healthcare coverage based on genetics or preexisting conditions, American scientists are going to struggle to get the genetic data from Americans that they need to improve medical treatment. To be clear, this is about everyone, not just those with a genetic condition like HH. Suppose you get cancer caused by exposure to some carcinogen or other. These days the efficacy of many forms of cancer treatment can be enhanced by knowing your genetic makeup. But what if that genetic makeup can also be mined by insurance companies who have a financial incentives to find out what else might be wrong with you? Do you one day find yourself a cancer survivor who is uninsurable due to some hereditary genetic mutation.<br /><h2>Why our caring needs to be universal</h2>Charging different medical insurance premiums for different groups of people makes no sense if your goal is to create a civilized society based on the principles of equality and liberty and justice. Ever other "developed" country has accepted that the best way to provide the best care to the most people at the most bearable cost is to have the same premium for everyone, paid according to means.<br /><br />To be clear, that means everyone is obliged to pay something, regardless of age, gender, geography, profession or preexisting conditions. For example, if I earn a higher than average salary, I pay closer to 100% of the premium than someone who earns less than me. That is the case today when it comes to covering the cost of defending the country or educating its children. Defense and education are universal needs and we accept that we all have to pay for them as best we can. People who don't have children still have to pay school taxes, and so on.<br /><br />I would argue that we are never going to realize the full benefits of genomic medicine if the country does not enshrine into law a right to medical care, the cost of which is not dependent upon our health status. For example, in the country where I grew up, the cost to me of my medical needs as a healthy 20 year-old college student was the same as the cost for my 50 year-old father, who died of cancer: zero out of pocket costs, no co-pay, no deductibles, just a monthly contribution based on earnings.<br /><br />One group of Americans will be particularly hard hit by any fresh obstacles to genomics: those who suffer from rare diseases. As this <a href="https://www.ft.com/content/d2e21cea-d684-11e6-944b-e7eb37a6aa8e" rel="noopener noreferrer" target="_blank">Financial Times article makes clear</a>, large scale genetic studies can find cures for rare diseases. But can such studies scale appropriately in a society fearful of what genetic data sharing might mean to one's financial future? Organizations like <a href="https://rarediseases.org/" rel="noopener noreferrer" target="_blank">NORD, the National Organization for Rare Disorders</a> are clearly concerned and you can bet they are organizing against anything the current administration might do that <a href="https://rarediseases.org/protecting-healthcare-coverage/" rel="noopener noreferrer" target="_blank">impacts victims of rare disorders</a>.<br /><h2>Why we need universal privacy protection</h2>Along with universal care, we need a universal presumption of privacy for our personal information. In all EU countries, your personal information enjoys protections under the law and as a right. In the US, the question of whether your personal information is protected is unclear, in other words: it depends, on the nature of the information, its location, your location, even your status in society (see my white paper referenced below). Suppose you borrow a book from the library. Is that information protected? The answer in America is: that depends. There is no US federal protection of your library lending records. There is no explicit right under which they are protected. However, most states do have library record privacy laws.<br /><br />Where the lack of a right to data protection in the US really bites is new forms of data. When people started to rent videos, the records of what you rented were not protected until congress passed the Video Privacy Protection Act of 1988 (VPPA). That only happened after politicians realized how embarrassing the revelation of an individual’s rental records could be (as demonstrated during Judge Robert H. Bork's Supreme Court confirmation hearings, which directly led to the VPPA).<br /><br />Similarly, information about your DNA was not protected until a law was passed (GINA). To be fair to the folks who study the human genome, they seem to have been, and remain, passionate and unanimous in their support of privacy protections. Sadly, that may not be enough to insure the success of genomic medicine in America. Beyond the research labs and the corridors of the academy there is a massive trust gap wth respect to genetic data. The gap will need to be filled even if Obamacare is not repealed.<br /><br />If Obamacare is repealed and replaced with something that allows discrimination against preexisting conditions, with no plugging of GINA loopholes and carve-outs, then America's chances for a healthier future through genomics and personalized medicine will fade.<br /><h2>The cyber factor</h2>Finally, it has to be said: even if the Obamacare protections for people with preexisting/genetic conditions remain unrepealed, the world of genomics is still going to have to deal with the erosion of trust in technology and institutions created by rampant cybercrime, whether that crime is committed for monetary gain, political advantage, or the sheer bloodymindedness of disaffected individuals. As a society we are feeling the negative effects of a constant barrage of headlines like this: “Over 113 million health records breached in 2015 - up 10-fold from 2014” (<a href="https://www.csoonline.com/article/3026661/data-breach/over-113-million-health-records-breached-in-2015-up-10-fold-from-2014.html">CSO Online</a>).<br /><br />Even specialized websites like <a href="https://www.fiercehealthcare.com/it/feature-2016-banner-year-for-ehr-security-breaches">Fierce Healthcare</a> have a hard time keeping up with the data breach stories. Consider this from December, 2016: “More than 25 million patient records were reportedly compromised as of October 2016. And then, in November, the cases spiked: There were 57 health data breaches—the most in any one month this year.” These headlines are not confined to trade publications. Here is just one from the New York Times: "<a href="https://www.nytimes.com/2015/02/05/business/hackers-breached-data-of-millions-insurer-says.html" rel="noopener noreferrer" target="_blank">Millions of Anthem Customers Targeted in Cyberattack</a>". Imagine reading that if Anthem has your DNA data.<br /><br />The cumulative impact of cyber-badness on our faith in technology can be measured in several ways. Consider what happened when I asked 1,000 computer-using adults in the US if they thought problems with digital technology, like computer hacking and network outages, posed a risk to their security and wellbeing. Fully two thirds of respondents saw moderate or high risk (35% and 33.5%). Only one in five people said the risk was slight (19%) and only one in eight saw almost no risk (12.5%). Without an effective, globally-coordinated cybercrime reduction campaign, it is hard to see how these negative perceptions can be reduced.<br /><br />One thing is certain, organizations active in genetic research and genomic medicine will need to be doubly secure in their handling of human DNA data. At the same time, they need to educate the government and the public about the need for a system of healthcare that fosters genetic research and genomic medicine, rather than inequity and fear.<br /><h2>References</h2><ul> <li>We’re About to Cripple the Genomic Medical Era - Article by former Chief Data Scientist of the United States Office of Science and Technology Policy:<br /><a href="https://shift.newco.co/were-about-to-cripple-the-genomic-medical-era-5b998264a9a1" rel="noopener noreferrer" target="_blank">https://shift.newco.co/were-about-to-cripple-the-genomic-medical-era-5b998264a9a1</a></li> <li>NIH page on Genetic Discrimination and Other Laws:<br /><a href="https://www.genome.gov/27568503/genetic-discrimination-and-other-laws/" rel="noopener noreferrer" target="_blank">https://www.genome.gov/27568503/genetic-discrimination-and-other-laws/</a></li> <li>Slate article: Thanks to Genetic Testing, Everyone Could Soon Have a Pre-Existing Condition: Which makes the AHCA’s removal of protections so much more frightening:<br /><a href="https://www.slate.com/articles/health_and_science/medical_examiner/2017/05/genetic_testing_is_another_reason_to_fear_the_ahca.html" rel="noopener noreferrer" target="_blank">https://www.slate.com/articles/health_and_science/medical_examiner/2017/05/genetic_testing_is_another_reason_to_fear_the_ahca.html</a></li> <li>The House health plan makes your genes a preexisting condition:<br /><a href="https://www.wired.com/2017/05/house-health-plan-makes-genes-preexisting-condition/" rel="noopener noreferrer" target="_blank">https://www.wired.com/2017/05/house-health-plan-makes-genes-preexisting-condition/</a></li> <li>The Future Of Medicine Depends On Protections For Pre-Existing Conditions:<br /><a href="https://psmag.com/social-justice/the-future-of-medicine-depends-on-protections-for-pre-existing-conditions" rel="noopener noreferrer" target="_blank">https://psmag.com/social-justice/the-future-of-medicine-depends-on-protections-for-pre-existing-conditions</a></li> <li>Fast Company article from 2016: If you want life insurance think twice before getting genetic testing:<br /><a href="https://www.fastcompany.com/3055710/if-you-want-life-insurance-think-twice-before-getting-genetic-testing" rel="noopener noreferrer" target="_blank">https://www.fastcompany.com/3055710/if-you-want-life-insurance-think-twice-before-getting-genetic-testing</a></li> <li>HHS secretary expresses concern on bill allowing employers to demand genetic tests:<br /><a href="https://www.statnews.com/2017/03/13/price-employers-genetic-information/">https://www.statnews.com/2017/03/13/price-employers-genetic-information/</a></li> <li>New Wellness Bill HR 1313 Gets Flak for Genetic Privacy Concerns:<br /><a href="https://www.workforce.com/2017/03/20/new-wellness-bill-gets-flack-for-genetic-privacy-concerns/" rel="noopener noreferrer" target="_blank">https://www.workforce.com/2017/03/20/new-wellness-bill-gets-flack-for-genetic-privacy-concerns/</a></li> <li>HR 1313: life-threatening law targets Americans with genetic defects:<br /><a href="https://celticcurse.org/hr-1313-life-threatening-law-targets-americans-with-genetic-defects/" rel="noopener noreferrer" target="_blank">https://celticcurse.org/hr-1313-life-threatening-law-targets-americans-with-genetic-defects/</a></li> <li>The American Society of Human Genetics (ASHG) opposes H.R.1313, the Preserving Employee Wellness Programs Act:<br /><a href="https://www.ashg.org/press/201703-HR1313.html" rel="noopener noreferrer" target="_blank">https://www.ashg.org/press/201703-HR1313.html</a></li> <li>National Organization for Rare Disorders:<br /><a href="https://rarediseases.org/" rel="noopener noreferrer" target="_blank">https://rarediseases.org/</a></li> <li>National Organization for Rare Disorders - Rare Action Network page on protecting healthcare coverage:<br /><a href="https://rareaction.org/daysofaction/" rel="noopener noreferrer" target="_blank">https://rareaction.org/daysofaction/</a></li> <li>Global Genes Global Genes is a rare disease patient advocacy organization:<br /><a href="https://globalgenes.org/" rel="noopener noreferrer" target="_blank">https://globalgenes.org/</a></li> <li>White paper on data privacy laws in the US:<br /><a href="https://www.welivesecurity.com/2016/04/26/data-privacy-data-protection-us-law-legislation-white-paper/" rel="noopener noreferrer" target="_blank">https://www.welivesecurity.com/2016/04/26/data-privacy-data-protection-us-law-legislation-white-paper</a></li></ul><p></p>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-38806801920013685272017-02-07T15:00:00.000+00:002020-03-17T22:53:27.671+00:00There was no valedictorian and other observations on the way to my
graduationLast month I graduated from the Criminology Department of the University of Leicester with a Master of Science degree in Security and Risk Management (MSc SRM). I graduated in person, in England, with my own two-person cheering section (mum: Dorothy; partner: Chey).<br/><br/>The trip to get there was a long one, and I don't just mean the miles (6,000) or the years (two spent on the course, but many more getting ready for it). However, the journey was well worth making, and the graduation ceremony was well worth attending, even though it raised several questions that I feel obliged to answer here.<br/><h2>1. Why graduate in January?</h2><br/>The timing of my graduation ceremony was awkward to say the least, but it was due to the fact that the SRM program that I wanted to pursue has two cohorts per year, commencing in March and September, with two graduation ceremonies, July and January. I was in a September cohort for which the usual graduation is January.<br/><br/><a href="http://cobbsblog.com/wp-content/uploads/garduation-lecister-2017.jpg"><img class="alignright size-full wp-image-2285" src="http://cobbsblog.com/wp-content/uploads/garduation-lecister-2017.jpg" alt="" width="300" height="355" /></a>That is not, in itself awkward, just unappealing, given how cold and grey January weather can be in England (for the photo of Chey and me on the right I had to crank up the Brightness).<br/><br/>But the exact timing <em>was</em> awkward, given that my employer, ESET, whose generous <a href="http://cobbsblog.com/life-after-the-university-of-leicester/">employee education program</a> had funded my studies, decided to hold its annual North American Partner Conference (NAPC) that same week as my graduation.<br/><br/>The NAPC is a great event, hosted at the San Diego Hard Rock Hotel, and as head of the US Research Team I was expected to address the partners on the 2017 cybersecurity threatscape, the world into which they would be selling ESET's security solutions in the months ahead.<br/><br/>Fortunately, it was possible for me to do that, and go to the graduation, by speaking before lunch on the first day of the conference and then taking the direct BA flight from SAN to LHR later that afternoon. Unfortunately, that meant getting to our UK home base of Coventry late in the afternoon of the next day, checking into a hotel, having dinner with Mum, and then rising next morning to head for Leicester. Not a lot of time to get over jet lag, but it was do-able.<br/><h2>2. Second or third masters degree?</h2><br/>At the end of my remarks to the NAPC I apologized for not being able to hang around for the whole two day event, making a joke about having to go and get my degree because the university refused to change the graduation date to accommodate ESET, even though it's one of the largest security software companies in the world.<br/><br/>That got a few laughs, but it's what I got over lunch that surprised me: questions about whether this was my second or third masters degree, or more generally: "How many degrees is that then Professor Cobb?"<br/><br/>I can honestly say my initial reaction was entirely factual: I said that this was my first masters, two degrees total. Some people obviously assumed I had spent a lot more time in academia than is the case. But I had to chuckle when I told my classmates about this at our department's pre-graduation buffet, because they all said they would have played along with the assumption: "Second or third masters degree? Hmm, let's see, hard to keep track."<br/><br/>Of course, my fellow graduands were all security people, many working in physical and operational security, and this accustomed to the odd piece of, shall we say, tactical social engineering. And for some of them this was their first degree, since it is possible to do a Masters degree in England without a Bachelors or, as in my case, without a relevant Bachelors. My first degree, back in the 1970s, was in English and Religious Studies (and the number computers involved was zero).<br/><br/><a href="http://cobbsblog.com/wp-content/uploads/stephen-and-dorothy.jpg"><img class="alignright size-full wp-image-2303" src="http://cobbsblog.com/wp-content/uploads/stephen-and-dorothy.jpg" alt="" width="300" height="318" /></a>A big motivating factor in attending my second graduation is that I skipped my first one. Why? I was boycotting the royal family. Allow me to explain. I have always objected to monarchy and my first degree would have been handed to me by the Chancellor of the University of Leeds, a position held at the time by a member of the British royal family.<br/><br/>I did not think that was appropriate and I did not want her handing me my degree. At the time, this posed something of a dilemma for my mum, seen here on the right. As far as we knew, I was the first person in our family to get a degree, so it was definitely something to celebrate, but on the other hand, my mum and dad had raised me to stick by my principles, on top of which, they weren't fans of the royal family either.<br/><br/>In the end we compromised and I a posed for some suitably formal picture taking in my grandparents' garden, wearing the appropriate gown from a Leeds alum who was a friend of the family. (My grandfather might not have had a degree, but by the time he was 50 he was able to sell his share of an engineering firm in Coventry that he co-founded, and retire with a garden large enough for a bowling green and graduation pictures.)<br/><h2>3. Isn't that against the rules?</h2><br/>In America, the rules of academic hierarchy tend to be strict. For example, you will have a hard time getting a paid teaching gig at a US university if you don't have a masters degree. But rules can be bent at times, for example when a new discipline emerges. There was a time, not much more than a decade ago, when you couldn't hire someone with a computer security degree to teach computer security because such degrees did not exist.<br/><br/>This led to an interesting exchange when I was being interviewed for my job at ESET in 2011. The head of HR, who has since become a good friend, said to me: "Your resumé indicates that you taught master of science in information assurance classes at Norwich University, but how was that possible when you only have a bachelors degree?" To which I replied, "Well spotted! It was only possible because the Dean made an exception, based on my knowledge and experience."<br/><br/>In fact, the award-winning MSIA program at Norwich, created in 2002, was put together by someone with a PhD in applied statistics and invertebrate zoology, Dr. Mich Kabay. To create and deliver the program's online curriculum, Mich tapped myself and Chey and a small army of security industry experts, none of whom - to the best of my knowledge - had a degree in security at the time. His approach paid off in short order as Norwich was quickly named a Center of Academic Excellence in Information Assurance Education (referred to as COE for short) by the NSA's Deputy Director for Information Systems Security.<br/><br/>I was initially surprised that people assumed I had multiple degrees, and then I felt flattered. I decided it meant that they think I know what I'm talking about. And that is actually true most of the time: I do try to talk only about what I know, or at the very least, to provide a clear disclaimer when I'm asked, or tempted, to talk about something that I'm not sure about.<br/><br/>Over the years folks have occasionally referred to me as Doctor Cobb, and I have immediately pushed back. I do not have a doctorate, even now. But I am less concerned when folks call me Professor Cobb. I have taught at university, and may do so again at some point. However, and just to be clear, I currently only have two degrees.<br/><h2>4. What happened to the valedictorian?</h2><br/>Another funny thing that happened on my way to, and upon return from, my graduation, was the multiple requests from my manager for a copy of my valedictorian speech. According Wikipedia, Valedictorian is "an academic title of success used in the United States, Canada, Central America, and the Philippines for the student who delivers the closing or farewell statement at a graduation ceremony (called a valedictory)." Fair enough, but notice which country/region is not on that list? Graduation ceremonies in England, and certainly the one that I attended at Leicester, do not have a valedictory or valedictorian.<br/><br/>The intent of the good-humored ribbing was to suggest that I had graduated at the top of my class. But that's another thing my class did not have: individual ranking. When I got my Bachelors degree in 1974, the results for all the students were posted on the department notice board, a physical object in a specific geographic location. Going to the department and looking at the board was how I, and all my classmates, found out that I got a First (English universities used to rank degrees as First, Upper Second, Second, and something else). As it turned out I was the first person to get a Joint First in English and Religious Studies at the University of Leeds, and the only person to get one that year. But there was no list of results ranking my class. For my masters I got my grade via a website and that only showed one result: mine (which was Merit, one level below Distinction).<br/><br/><a href="http://cobbsblog.com/wp-content/uploads/degree-2017-600.jpg"><img class="size-full wp-image-2290 alignnone" src="http://cobbsblog.com/wp-content/uploads/degree-2017-600.jpg" alt="" width="600" height="464" /></a><br/><br/>So it is quite possible that I was not the top student in my class. There were 33 of us graduating and none of asked about each other's grades - I think we were all just glad to have made it to the finish line, especially since most of us were holding down full time jobs, often in challenging places (like Kabul and Beirut to name two).<br/><br/>Indeed, whenever I was feeling like giving up I reminded myself that studying in San Diego was a lot easier than in a lot of the places my colleagues were coping with, so I should quit complaining, and besides, I was studying in my native language, which quite a few of my classmates were not (I confess that I'm awed by people who get a degree in a non-native language).<br/><br/>So in closing, but still speaking of languages, I promise my next post will be about the meaning and significance of the University of Leicester motto: Ut Vitam Habeant (<a href="http://staffblogs.le.ac.uk/ult/2016/11/10/ut-vitam-habeant/" target="_blank" rel="noopener">here's a hint</a>).<br/><br/>[Disclaimer: I have not yet written that blog post.]Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-25356415669461170252017-01-07T17:46:00.000+00:002020-03-17T22:53:27.567+00:00Life after the University of Leicester, pronounced Lester, plus
academic bang for bucks(In which the author gets back to his blog after a virtual expedition to a place called Leicester...)<br/><br/>I was going to start this blog post with something like: "As regular readers may have noticed..." But frankly, I doubt there are many regular readers left out there, mainly because I've not been blogging on this site on a regular basis for several years. Why? Because of my preoccupation with two things: cybersecurity and going to school.<br/><br/>I didn't stop writing blog posts, but they've mostly been about cybersecurity, and most have appeared on <a href="http://www.welivesecurity.com/author/scobb/" target="_blank" rel="noopener">WeLiveSecurity.com</a> or on <a href="http://scobbs.blogspot.com/" target="_blank" rel="noopener">S. Cobb on Security</a> and <a href="https://www.eset.com/us/about/newsroom/corporate-blog/response-and-responsibility-business-continuity-and-the-ransomware-crisis/" target="_blank" rel="noopener">ESET.com</a>.<br/><br/>As for <em>going to school</em>, most of the going has been virtual, that is: distance learning over the Internet. Most of my "spare" time for the past 24 months has been dedicated to working on a postgraduate degree at a university in England, specifically an MSc in Security and Risk Management, namely at the University of Leicester. And while the name Leicester looks like it might be pronounced "<em>lie - cess - ter</em>" the correct way to say it is "<em>lester</em>".<br/><br/><a href="http://cobbsblog.com/wp-content/uploads/blue-fox-trans-168.png"><img class="alignright size-full wp-image-2241" src="http://cobbsblog.com/wp-content/uploads/blue-fox-trans-168.png" alt="Copyright Leicester City F.C. " width="167" height="164" /></a>Knowing this pronunciation is more useful today than it was when I started my studies there in September of 2014. Why? Because millions more people around the world have of heard of Leicester today than even six months ago, thanks in part to the amazing story of the Foxes, a.k.a. Leicester City Football Club (I will go into other reasons in another post).<br/><br/>To be clear, I'm not an expert on sport; indeed, I'm not even a huge fan of sport in general. The "sport" I follow most closely involves driving cars (Formula One car racing). So I will leave it to this BBC article to do the telling of this one: <a href="http://www.bbc.com/news/world-us-canada-36028733" target="_blank" rel="noopener">Explaining the Leicester City Story to Americans</a>. The bottom line is that the team that owns the totally cool logo on the right, the Foxes, achieved what some sports fans say is the greatest underdog comeback in any sport, ever.<br/><br/>But let's return to a far more modest come-back, my return to blogging after spending two years studying for a Master's degree while holding down a full-time job (not only is the job full time, it requires a fair bit of travel - for example, in 2015 I took more than 50 commercial airline flights).<br/><h2>Was the studying worth it?</h2><br/><strong>Yes!</strong> Let me make that clear. I plan to write a separate article about the details of my degree programme (it was in England, hence the English spelling of program); but even without going into detail I can say for sure that it was worth the time, effort, and money.<br/><br/>[caption id="attachment_2247" align="alignright" width="294"]<a href="http://cobbsblog.com/wp-content/uploads/ul-criminology.jpg"><img class="wp-image-2247" src="http://cobbsblog.com/wp-content/uploads/ul-criminology-274x300.jpg" alt="ul-criminology" width="294" height="322" /></a> No, it's not Hogwarts on a sunny day, it's the Department of Criminology at the University of Leicester (but like Hogwarts, it has hidden depths, in this case extensive cohorts of distance learning students).[/caption]<br/><br/>On the topic of money, I should be clear that my employer, <a href="https://www.eset.com" target="_blank" rel="noopener">ESET</a>, one of the world's largest security software companies, has a very enlightened and generous tuition reimbursement program (I'm in their San Diego office, so it's a program, not a programme).<br/><br/>By using the annual reimbursement from ESET and the interest-free installment plan offered by the university I was able to stagger my payments across 2014, 2015, and 2016. I was fortunate enough to be able to front the payments without economic hardship. And, as luck would have it, the British pound declined in value relative to the US dollar during my studies (more on that later).<br/><br/>This fortuitous set of circumstances, plus some planning on my part, meant that I was able to recover most of my tuition through ESET reimbursements. However, even without such a wonderful company incentive, I think many US professionals could find that a UK postgraduate degree is an attractive option for knowledge and career enhancement. I base this on three factors that I will address in more detail: hoops, bucks, and bang.<br/><br/><strong>Hoops: </strong>Most British universities eschew the "hoops" you have to jump through to get into many US schools. UK universities are more inclined to consider mature applicants for Masters degree programmes based on their potential for academic study, as demonstrated through career and life journey.<br/><br/>Consider my MSc in <a href="https://le.ac.uk/courses/security-and-risk-management-msc-dl" target="_blank" rel="noopener">Security and Risk Management</a> (the SRM programme). My fellow students included police and military personnel, both serving and retired, who had entered those services direct from high school. In other words, not all of them had a bachelors degree. This seems eminently fair to me.<br/><br/>Sure, I have a bachelors degree, but it dates from the 1970s and the subjects were English and Religious Studies (Comparative Religion in US terminology). Is that a better foundation for a masters degree in security and risk management than 20 years as a police officer, or peacekeeper in a post-conflict zone, or a CISSP? I don't think so.<br/><br/>What everyone on the course had in common was an understanding that we would be held to a high academic standard in our course work, and would not be able to proceed to a full degree if we fell short. Again, this seems fair to me. The university has enough confidence it its ability to identify good candidates that it is not reliant on an applicants checking boxes (called ticking boxes in England) and taking a bunch of tests. I should point that there are certain standards, and these can vary between institutions, but you may find that the general approach is refreshingly different from what you have encountered in the US.<br/><br/><strong><a href="http://cobbsblog.com/wp-content/uploads/pound-dollar-chart.png"><img class="alignright wp-image-2256 size-medium" src="http://cobbsblog.com/wp-content/uploads/pound-dollar-chart-300x274.png" alt="pound-dollar-chart" width="300" height="274" /></a>Bucks:</strong> The tuition fee for the next intake of the SRM MSc in Leicester's highly regarded Criminology Department is £13,015 which is about $17,000 at the current retail exchange rate of around $1.30. The chart on the right shows that I paid my first installment when the pound was over $1.70, and I was sure it was worth it at that price. When I paid my last installment it was about $1.40 and boy was I chuffed (English expression for "pleased with oneself"). Then came Brexit and an even bigger drop. Of course, I have no crystal ball, so I can't guarantee the pound will stay this low, but it has a lot of climbing to do to get back to 2014 levels.<br/><br/>BTW, that $17,000 tuition fee is not per year, that is the fee for the entire course. It even includes several books per course, sent to you by DHL, wherever you happen to be studying (for my cohort that meant anywhere from Afghanistan to Zimbabwe).<br/><br/>Also included is excellent room and board if you attend Study School in Leicester. These are three day events and there are one or two per year. Attendance is not required but I found them very helpful, and enjoyable (I flew over for three of them between 2014 and 2016).<br/><br/>Of course, I had to buy the airline tickets, and I spent some of my own money on additional books, not to mention the care and feeding of a big color laser printer (I'm sorry, but I just can't read and annotate academic articles on a computer screen). All told, the degree was, in my opinion, something of a bargain. But that doesn't mean it lacks punch as a professional qualification.<br/><br/>[caption id="attachment_2255" align="alignright" width="300"]<a href="http://cobbsblog.com/wp-content/uploads/uk-uleicester.jpg"><img class="wp-image-2255 size-full" src="http://cobbsblog.com/wp-content/uploads/uk-uleicester.jpg" alt="uk-uleicester" width="300" height="392" /></a> Leicester is a couple hours' drive north of London, close to the center of England. I grew up 25 miles away, in Coventry, which is between the L and A in England on this map.[/caption]<br/><br/><strong>Bang:</strong> In my experience, degrees from British universities in general tend to have a certain cache in America. I'm not going to argue whether or not this is justified, but I can put some stats around the place from which I obtained my "bargain" degree (borrowing heavily here from the university's own materials).<br/><br/>On the world stage, the University of Leicester has been ranked among the top 200 universities in the world for many years. It was 167th in 2016, ahead of Brandeis, George Washington University, Texas A&M, and the University of Miami.<br/><br/>In UK terms, Leicester won Times Higher Awards every year from 2007 to 2013, the only university to win awards in seven consecutive years. Leicester was awarded the prestigious title of University of the Year 2008/09 by the Times Higher Education magazine. The judges cited Leicester’s ability to “evidence commitment to high quality, a belief in the synergy of teaching and research and a conviction that higher education is a power for good”. In short, they said Leicester was "elite without being elitist". The UK has a number of national ranking tables for universities and Leicester is consistently in the top 20.<br/><br/>Of course, some universities are better for some subjects than others. The primary driver of my decision to go back to school was to gain a better understanding of crime and so I looked for schools that had a good reputation in Criminology. In 2013 the Guardian ranked the University of Leicester third in the UK for Criminology. This ranking is perhaps not surprising given that Leicester's <a href="http://www2.le.ac.uk/departments/criminology/whystudy" target="_blank" rel="noopener">Department of Criminology</a> has a large number of widely published faculty, but it also reflects an exceptional score for student satisfaction with teaching.<br/><h2>Summing up</h2><br/>It's good to be done with my degree, which I will actually collect in person later this month (expect graduation photos on Twitter <a href="https://twitter.com/TheStephenCobb" target="_blank" rel="noopener">@The StephenCobb</a>). And of course, it's good to be free of that constant feeling of "you really should be studying" instead of whatever else you happen to be doing. That said, I never felt that my studying conflicted with my work, largely because the subject of my studies was my work - after all, I am a security researcher by title and trade.<br/><br/>It helped that the work output for the course was essentially six essays and a 15,000 word dissertation. Six essays may not sound like a lot, until you factor in the scale of the essays, which range from 3,000 to 5,000 words, plus references. In other words, you are not attending classes, you are doing the reading and research for the module topic, then writing up your results in the form of an extended academic argument around the question you have chosen to answer. (One essay is actually a research proposal with literature review, and there are some tests on referencing and statistics.)<br/><br/>You have three questions to chose from in each of the six modules, but considerable scope to frame your essay on your own terms; for example, I managed to make all of my essays about, or relevant to, cybercrime and cybersecurity. That enabled me to use a lot of my essay research and writing for work, a good example being the <a href="http://www.welivesecurity.com/2016/04/26/data-privacy-data-protection-us-law-legislation-white-paper/" target="_blank" rel="noopener">data privacy white paper</a> that I published last year on <a href="http://www.welivesecurity.com" target="_blank" rel="noopener">WeLiveSecurity.com</a>. The paper is an essay re-worked as a guide to US data privacy law.<br/><br/>You will remember that I mentioned high academic standards. That privacy paper has garnered a fair amount of praise and is looked at by several hundred people a month; however, the grade that the essay earned me was barely above a pass (largely because there was too much descriptive accounting of privacy protections and not enough argument around the actual essay question). In other words, a lot of us were sweating our grades after each module.<br/><br/>Fortunately, I got better grades on the other five essays and the dissertation, all 80 pages and 15,000 words of it. I produced two papers on my way to the dissertation, available from <a href="http://scobbs.blogspot.com/2016/10/more-about-cybersecurity-skills-gap.html" target="_blank" rel="noopener">my security site</a>, and the dissertation itself should be published later this year. I am also using material from that research in my session at HIMSS next month (as in <a href="http://www.himssconference.org/" target="_blank" rel="noopener">Health Information and Management Systems Society Annual Conference</a>, a conference likely to be attended by more than 40,000 people).<br/><br/>With that, I will wrap up this "back from school" blog post and make a promise to provide more about the programme at Leicester and the pleasures and perils of adult education and distance learning in a future post. Thanks for reading!Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com1tag:blogger.com,1999:blog-6636098126419169338.post-65353449395132824882016-06-25T17:17:00.000+00:002020-03-17T22:53:27.209+00:0050 Shades of White Privilege: #1 Birth and #2 Education<span style="color: #800000;">[<strong>Update</strong>: I originally published this post in October of 2014 when public discussion of "White Privilege" surfaced in mainstream media and it became clear to me that some white people did not understand the concept. I am republishing this article now because of a tweet </span><span style="color: #800000;">about Black Lives Matter that </span><span style="color: #800000;">I sent out earlier in the day: "If your response to Black Lives Matter is All Lives Matter then you are definitely missing the point and probably white". Several hashtags and phrases appeared in response to that tweet: </span><br/><ol><br/> <li><span style="color: #800000;">we are all given the same start </span></li><br/> <li><span style="color: #800000;">#nooneowesyoushit </span></li><br/> <li><span style="color: #800000;">#iearnedmine </span></li><br/></ol><br/><span style="color: #800000;">I think my original article demolishes #1 and #2, and I am pretty sure #2 is a red herring. To point out the many ways in which our society acts as if black lives matter less than white lives is not to say that anyone is owed anything, except for a level playing field, equal respect, equal access to justice, capital, healthcare, and so on.</span><br/><br/><span style="color: #800000;">As for #3, how can I put this? I did earn the money in my bank account, but being white meant that throughout my career more doors were opened wider, and less obstacles were placed in my path, than if I had been black. I got mortgages and loans more easily. I got better medical care than if I were black. And I never got stopped or harassed for driving or walking while black. To put it simply, every successful black man that I know had to work a lot harder to get ahead than I did. So here is what I wrote in 2014, republished with a promise to continue the originally promised series of posts as soon as I have finished my dissertation.]</span><br/><br/><strong>Original article:</strong><br/><br/>White privilege exists. I know because I'm white and I have benefited from that simple fact every day of my life. After six decades of living, I can say with confidence that my life has been easier than it would have been if I was not white. White privilege exists in America and Britain, Canada, Australia, and pretty much anywhere else dominated by white people. And when white privilege goes unacknowledged, it presents -- certainly in my experience -- a serious barrier to achieving racial harmony.<br/><h2>Why write about white privilege?</h2><br/>I have benefited from white privilege in so many ways, some positive, others non-negative, that I thought I would list them. By articulating my experience of these different shades of white privilege, my hope is to enlighten -- pun not intended, but I rather like it -- some of the remaining "white privilege deniers" out there. And if other white folks can articulate their experiences of privilege to their white friends and relatives and colleagues, then maybe we will stand a chance of achieving some sort of racial harmony, for one thing is quite clear: racial harmony is still a promised land, a place in human history that has been glimpsed but not yet attained.<br/><h2>What is white privilege?</h2><br/>Before I get to my Shades of White Privilege list, I wanted to offer a few notes about how the term white privilege is being using in the second decade of the 21st century. I find it interesting to track <a href="https://twitter.com/search?q=%23WhitePrivilege&src=typd">#WhitePrivilege in Twitter</a>. And there is an interesting definition in Wikipedia -- I know it's not a primary academic source, but it can be a useful starting point. Right now the <a href="http://en.wikipedia.org/wiki/White_privilege">Wikipedia definition</a> says:<br/><blockquote><b>White privilege</b> (or <b>white skin privilege</b>) is a term for societal privileges that benefit white people beyond what is commonly experienced by non-white people in the same social, political, or economic circumstances. [October 19, 2014]</blockquote><br/>The footnote to this definition lists a variety of other <a href="http://en.wikipedia.org/wiki/White_privilege#cite_note-definition-1">definitions of white privilege</a> that are sourced and worth checking. Two notable articles that help explain the concept are "<a href="https://nationalseedproject.org/Key-SEED-Texts/white-privilege-unpacking-the-invisible-knapsack">White Privilege: Unpacking the Invisible Knapsack</a>" by Peggy McIntosh, and "<a href="http://occupywallstreet.net/story/explaining-white-privilege-broke-white-person">Explaining White Privilege to a Broke White Person...</a>" The latter is particularly helpful in getting past the idea that white privilege does not apply to white people who have experienced hardship and prejudice.<br/><br/>For example, although I generally think of myself as having lived a charmed life, I have experienced being flat broke on a number of occasions. At one point I was homeless as well. But I have no doubt that getting through those tough times was a lot easier for me than it would have been for a person of color. I think it is important to acknowledge that reality, rather than fall for the fantasy we too often hear from our fellow white Americans: "If I can work my way out of tough times, so can they."<br/><br/>For me, white privilege embodies two concepts:<br/><ol><br/> <li>despite the many advances toward equality over the last 50 years, being born white still makes life easier [in America, Britain, and many other countries] than if you are born non-white;</li><br/> <li>we need to change that.</li><br/></ol><br/>I begin my look at the shades of white privilege with #1 Birth.<br/><h2>White Privilege Shade #1 Birth</h2><br/>I was born white in a very white time and place: Britain in the 1950s. At that point in time there were about 50 million people living in Britain and more than 99.99% of them were white. So how could I experience white privilege? Were my parents rich? Not in British terms. But I was born in a very comfortable and well-built home that had electricity and indoor plumbing. I was delivered into the world by a well-equipped midwife and pronounced healthy shortly thereafter by a well-educated doctor who made house calls. The fact is, although my family was not rich by British standards, Britain was rich by world standards.<br/><br/>How did Britain get to be rich? Was it through industry and innovation? Well, there was a lot of that, but where did the capital come from? Two hundred years of systematic theft on a global scale, enterprises such as:<br/><ul><br/> <li>relentlessly plundering lands that belonged to non-white people,</li><br/> <li>stripping them of their natural resources,</li><br/> <li>relocating millions of those non-white people for cash and other remuneration, and</li><br/> <li>exploiting those non-white people for cheap labor.</li><br/></ul><br/>Sure, my dad was a hard working man and my parents maintained a modest lifestyle to make the most of his earnings, but like generations of British people before them, they were experiencing a more comfortable lifestyle than 90% of the rest of the planet, thanks to what the country of their birth, and mine, had taken from others, people who were not white like them. (Before you ask, let me assure you my parents don't disagree with this version of events.)<br/><h2>White Privilege Shade #2 Education</h2><br/><a href="http://cobbsblog.com/wp-content/uploads/khviii-ruugby-team-1968.png"><img class="alignright wp-image-2555" src="http://cobbsblog.com/wp-content/uploads/khviii-ruugby-team-1968-300x206.png" alt="" width="400" height="275" /></a>As a beneficiary of Britain's global plunder-fueled affluence in the twentieth century, I got a free education from the age of five all the way through to graduate school. The educational facilities were excellent. There was free milk. School lunches were free until I was 11. Healthcare was also free and by 15 I was nearly six feet tall (that's me second from the right in the back row).<br/><br/>At times I had to study hard and compete for scholarship funds, but I did not lack for educational resources, or emotional and psychological support. From age 12 to 18 I attended a prestigious 400 year-old school within walking distance of our house. We lived in a quiet neighborhood where every adult who wanted to work was able to do so. We had a comfortable lifestyle. The thought that my efforts to succeed might at any point be thwarted by racial prejudice never entered my mind. Indeed, thanks to white privilege, race has never ever hindered my progress in life.<br/><br/>Just in case you're thinking "that was long ago and far away and things are different today," consider this: "Top universities turn out black and Hispanic computer science and computer engineering graduates at twice the rate that leading technology companies hire them." That's a quote from a <a href="http://www.usatoday.com/story/tech/2014/10/12/silicon-valley-diversity-tech-hiring-computer-science-graduates-african-american-hispanic/14684211/">recent USA Today analysis</a> which revealed that even in America today, where tech graduates are very highly sought after, black and brown tech graduates are less sought after than white.<br/><h2>More Shades to Come</h2><br/>[Update: July 2019] I wanted to get the ball rolling with this project, so I started with Shades 1 and 2 and posted them right away. Then I started to write White Privilege Shade #3: Immigration (why was it so easy for a penniless white guy to emigrate to America). However, the demands of work and my role as a caregiver have kept me from completing the project. Fortunately, I have been able to retire and hope to return to this writing soon.<br/><br/>In the meantime, I want to say a few words about prejudice.<br/><br/>Being white doesn't mean you won't ever experience prejudice, but I think some white people who have experienced prejudice take that to mean they are not beneficiaries of white privilege. So let me be clear, white-on-white prejudice does not take away white privilege.<br/><br/>For example, the year that I was six we lived in a very white town in Canada where I was picked upon and roughed up for being English. Oddly enough I decided to go back to Canada as a postgraduate teaching assistant, but after a year the university cut the funding of foreign graduates in favor of Canadian students and I never got to finish that degree.<br/><br/>Decades later I've put that all behind me and can honestly say that some of my best friends these days are Canadians. More important, none of those experiences did anything to diminish my white privilege, although they did give me a tiny taste of what non-white people may feel when they are subject to racial prejudice. In fact, my partner and I have a theory that white children benefit greatly from the experience of living - even if for a short time - in a place where they are "different."<br/><br/> <br/><br/><address>* The photo shows the King Henry VIII School rugby team, 1968. I played "second row" in the "Under 15" squad, so-called because we were under 15 years of age when the season started (September 1, 1967). The school was named after its founder and dates back to 1545, the same year that Francis Drake, one of the first English slave traders, was born.</address><address> </address>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com2tag:blogger.com,1999:blog-6636098126419169338.post-32844419427327142562015-11-10T21:17:00.000+00:002020-03-17T22:53:27.520+00:00Talking cybersecurity futures at TEDx San DiegoWhat can we do to ensure a better future for technology? A future with less cybercrime and more trust in digital technology? I addressed these questions in a TEDx talk in San Diego, titled: Ones and Zeroes: A Tale of Two Futures. I drew on my studies in the Criminology Department at the University of Leicester and the San Diego Cyber Boot Camp:<br/><br/><center><iframe src="https://www.youtube.com/embed/dZktSOH_pVU" width="560" height="315" frameborder="0" allowfullscreen="allowfullscreen"></iframe></center>Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-27434742464423681022015-08-04T04:51:00.000+00:002020-03-17T22:53:27.465+00:00The ethics of faking it until you make itThe advice to "fake it until you make it" has popped up several times recently in my online meanderings, raising some interesting questions. I want to ponder them for a moment and present a couple of illustrations, one a video and another a story.<br/><br/>I started to think about this when I did some research for a friend on overcoming the fear of public speaking. I found an article that had several pieces of advice, include this: "try faking it until you make it" where "it" equals "being a confident public speaker".<br/><br/>(BTW, I really do mean that I was doing this research for a friend and not myself. I do have my own problems with public speaking, but they are the opposite of lack of confidence, and more in the area of piping up too often and for too long, something I have been working on for many years: namely, knowing when to pipe down.)<br/><br/>Unfortunately, my friend interpreted the article as a recommendation to fake talking about something you don't know much about, that is, faking being an expert when one is not. The author of the article didn't really mean that one should engage in professional impersonation, but it could been read that way. And my friend had a point: it is one thing to fake feeling confident, which is often the context in which this "fake it until you make it" phrase appears; but is it okay to fake a skillset until you actually acquire it?<br/><br/>For example, most of my writing these days concerns security (on <a href="http://www.welivesecurity.com/author/scobb/">We Live Security</a> and on <a href="http://scobbs.blogspot.com/">S. Cobb on Security</a>). So, would it be okay to fake being a security expert until you became one? Many people would reflexively answer no. Yet even as I ask that question, I flash on the feelings I used to have in the early days of my career in information security, feelings like "I'm not really an expert" and "these people are taking a chance acting on my advice."<br/><br/>On the other hand, I never actually claimed to be a computer security expert, people just began to treat me that way, most likely because I wrote a book about computer security (after spending several years researching the subject and dealing with real world security problems, then covering the topic for IT publications and learning what I could from people whom I considered experts).<br/><br/>It turns out that this sense of being a fake in one's chosen profession is quite common, and it may be more common for women than men. Why? I think that many societies teach males to fake their emotional state and self-image as part of growing up. This is reflected in phrases like "Be a man!" which are directed at boys who are not yet men. Now, I've always been a firm believer that women can doing anything that men can do, as epitomized by the factory worker in the photo at the top of this post (she's measuring tubing with a large micrometer, a tool that will appear later in this blog post). However, it is quite possible that the way in which we are raised leads men and women to react differently to the phrase "fake it until you make it."<br/><br/>To get a different perspective on this, we can turn to TED, as in a TED talk, one that has been viewed by tens of millions of people. I recommend listening to the whole talk, but if you a pressed for time you could skip to the 15 minute mark. This is the point when Amy Cuddy, a social psychologist, gets into the issue of feeling "fake" in a professional situation (she talks about this in the context of research that shows how adopting certain physical poses with our bodies can change our physiology).<br/><br/><iframe src="https://embed-ssl.ted.com/talks/amy_cuddy_your_body_language_shapes_who_you_are.html" width="560" height="315" frameborder="0" scrolling="no" allowfullscreen="allowfullscreen"></iframe><br/><br/>My opinion? There is a role for faking it until you make it, or better yet, as Amy Cuddy says, faking it until you become it. Let me give you an example that may account for my take on this. My grandfather faked it until he became an engineer, and by doing so he probably saved himself and his younger brother from a life of poverty.<br/><br/>Ernest Cobb was born in England in 1894, the third of four sons in a modestly wealthy family. However, when my grandfather was 14 his father, also Ernest, sustained serious financial and property losses. That meant my grandfather had to go out and look for work to support himself and his younger brother. This was in Coventry, an industrial city in the British Midlands, a cradle of automotive engineering and the home of many classic car and motorcycle marques (e.g. Triumph: 1885, Lea-Francis: 1895, Humber: 1896, Daimler: 1896, The London Taxi Company: 1899, Rover: 1904, Sunbeam: 1901, Hillman: 1907, and Jaguar: 1922).<br/><br/><a href="http://cobbsblog.com/wp-content/uploads/micrometer-trans1s.png"><img class="alignright size-full wp-image-2146" src="http://cobbsblog.com/wp-content/uploads/micrometer-trans1s.png" alt="micrometer-trans1s" width="380" height="196" /></a>The story goes that young Ernest was out looking for work when he saw a group of men lined up outside a factory. He asked the man at the end of the line what they were waiting for. He was told there was a chance to get a job, but only if you could operate a micrometer, a device that my grandfather, a son of landed gentry, had never seen before.<br/><br/>But he joined the queue and watched as the foreman handed the person at the front of the line a micrometer and a piece of metal to test their ability. By the time it was his turn, my grandfather had observed enough to handle the micrometer as though he knew what he was doing, thus faking his way into a job. My grandfather went on to master many tools and instruments, eventually creating a successful tool-and-die making company. He retired quite comfortably in his fifties when he sold his quarter share of the firm.<br/><br/>In the past, when faced with challenging times myself, I have taken inspiration from this story about my grandfather. It still makes me smile sometimes as I do my two-minute power poses that I learned from Amy Cuddy.Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-70496107782246165092015-05-13T16:44:00.000+00:002020-05-13T16:51:36.940+00:00Privacy for BusinessI published "Privacy for Business: Web sites and email" in 2002. Much of the content about privacy principles in business is still relevant. You can download the book free of charge in electronic form as long as you respect the copyright and license agreement.<br />
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<span style="font-size: small;"><span style="font-family: "georgia" , "times new roman" , serif;">License for the electronic edition of Privacy for Business: Web Sites & Email</span></span></h2>
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<b>1. Definitions</b></div>
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<li>to Reproduce the Work, to incorporate the Work into one or more Collections, and to Reproduce the Work as incorporated in the Collections; and,</li>
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The above rights may be exercised in all media and formats whether now known or hereafter devised. The above rights include the right to make such modifications as are technically necessary to exercise the rights in other media and formats, but otherwise you have no rights to make Adaptations. Subject to 8(f), all rights not expressly granted by Licensor are hereby reserved, including but not limited to the rights set forth in Section 4(d).</div>
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For the avoidance of doubt:</div>
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<b>5. Representations, Warranties and Disclaimer</b></div>
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<b>6. Limitation on Liability.</b> EXCEPT TO THE EXTENT REQUIRED BY APPLICABLE LAW, IN NO EVENT WILL LICENSOR BE LIABLE TO YOU ON ANY LEGAL THEORY FOR ANY SPECIAL, INCIDENTAL, CONSEQUENTIAL, PUNITIVE OR EXEMPLARY DAMAGES ARISING OUT OF THIS LICENSE OR THE USE OF THE WORK, EVEN IF LICENSOR HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES.</div>
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<b>7. Termination</b></div>
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Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com0tag:blogger.com,1999:blog-6636098126419169338.post-23762750208329893842015-04-26T10:45:00.000+00:002020-03-17T22:53:27.297+00:00How to fix your Google Chrome bookmarks if you can't stand the
new "enhanced design"Has Google messed up your Chrome bookmarks with its "new, improved" bookmark system? Don't panic! You can fix it and go back to the way things were, where your bookmarks are organized the way YOU want.<br/><br/>The obscure but simple fix is described below (this works as of April 27, 2015). If you want to know more about the "Enhanced Bookmark" changes that Google has been forcing onto users, scroll down below these steps or <a href="#about">click here</a>.<br/><br/>(Note: I am certainly not the first person to describe this fix. That's because Google has been rolling out the new "enhanced" bookmark to Chrome users over time, for several months. Indeed, you might not have seen the new bookmark interface yet, but now you know what the fuss is about.)<br/><h2>Steps to return your Chrome bookmarks to the normal folder arrangement</h2><br/><strong>1. Go to chrome://flags</strong> > by typing <em>chrome://flags</em> in the URL bar and tapping Enter. You should see something like this, with one of the worst warning messages you will ever read in any software ever (don't those self-important "user interface enhancement" nerds at Google realize browsers are no joking matter!):<br/><br/><a href="http://cobbsblog.com/wp-content/uploads/chrome-flags.png"><img class="alignnone wp-image-2097 size-full" src="http://cobbsblog.com/wp-content/uploads/chrome-flags.png" alt="chrome-flags" width="600" height="242" /></a><br/><br/>2. <strong>Find the "enhanced bookmarks" setting</strong> by using Find (Control/Command + F) and typing <em>enhanced bookmark</em> as seen here (the auto-fill will find it as you type):<br/><br/><a href="http://cobbsblog.com/wp-content/uploads/search-enhanced-bookmarks.png"><img class="alignnone size-full wp-image-2098" src="http://cobbsblog.com/wp-content/uploads/search-enhanced-bookmarks.png" alt="search-enhanced-bookmarks" width="600" height="154" /></a><br/><br/>3. <strong>Use the blue drop down box control</strong> to Change the setting to Disabled, as seen above.<br/><br/><strong>Note:</strong> You should not make changes to any other settings on this page unless you are sure of what the effects will be. That part of the warning is appropriate.<br/><br/>4. <strong>Make sure there is no unsaved work</strong> in any of the pages you have open in Chrome and then click the Relaunch button at the bottom of the page:<br/><br/><a href="http://cobbsblog.com/wp-content/uploads/restart-chrome.png"><img class="alignnone size-full wp-image-2099" src="http://cobbsblog.com/wp-content/uploads/restart-chrome.png" alt="restart-chrome" width="600" height="54" /></a><br/><br/>That should make sure your Chrome bookmarks look the way they always have, so when you look at a bookmark it looks like this:<br/><br/><a href="http://cobbsblog.com/wp-content/uploads/proper-chrome-bookmark.png"><img class="alignnone size-full wp-image-2104" src="http://cobbsblog.com/wp-content/uploads/proper-chrome-bookmark.png" alt="proper-chrome-bookmark" width="609" height="184" /></a><br/><br/>If you haven't yet seen the new "enhanced" Google Chrome bookmark it looks like this:<br/><br/><a href="http://cobbsblog.com/wp-content/uploads/google-chrome-enhanced-bookmark.png"><img class="alignnone size-full wp-image-2105" src="http://cobbsblog.com/wp-content/uploads/google-chrome-enhanced-bookmark.png" alt="google-chrome-enhanced-bookmark" width="596" height="341" /></a><br/><br/><a name="about"></a> Now you know how to make it go away, I will explain why I think this new system is bad, and why forcing it onto Chrome users was a really dumb move by Google, not to mention arrogant.<br/><h2>What the flip did Google do to my bookmarks in Chrome?</h2><br/><a href="http://cobbsblog.com/wp-content/uploads/your-choices-chrome-bookmark.png"><img class="alignright size-full wp-image-2109" src="http://cobbsblog.com/wp-content/uploads/your-choices-chrome-bookmark.png" alt="your-choices-chrome-bookmark" width="257" height="427" /></a>Apart from gobbling up screen real estate, the new user interface for bookmarks in Chrome severely limits your organizational options. For example, it appears to offer no way to choose the folder for the bookmark other than the choices it suggests.<br/><br/>For example, there is a very specific folder on my system for pages related to something called HIMSS, but that folder does not appear as a choice, and I can't get to it from this box.<br/><br/>Google says I have to put the bookmark in the Bookmarks Bar or the Sysadmin folder (seriously, WTF has Sysadmin got to do with HIMSS).<br/><br/>But Stephen, what about the "VIEW ALL BOOKMARKED ITEMS" option, you ask. Oh no, you don't want to go there, because "there" is where you see just how badly Google has messed up your carefully curated bookmarks, about 15 years' worth of bookmarks in my case, maybe even more for you.<br/><br/>I mean there I was, cheerfully bookmarking pages in Chrome, gathering material for a research project in the third module of my Criminology degree course, saving the pages in: Mobile Bookmarks > MSc > Module 3. Then boom! Some arrogant, "I understand users better than you" expert at Google, says "Stephen, your system sucks, try this!" And here is a glimpse of what you see when you view all bookmarks in the new in-your-face interface:<br/><br/><a href="http://cobbsblog.com/wp-content/uploads/chrome-bookmark-tiles.png"><img class="alignnone size-full wp-image-2111" src="http://cobbsblog.com/wp-content/uploads/chrome-bookmark-tiles.png" alt="chrome-bookmark-tiles" width="600" height="388" /></a><br/><br/>Believe me when I tell you that no amount of scrolling down the list on the left takes me to "Mobile Bookmarks > MSc > Module 3". That structure is just not there. And I will add more thoughts about that on this page when I have calmed down. For now, I want to put this "fix" out there. If you want to come back for more, please bookmark this page (he said with no trace of irony at all, honest).<br/><br/> Stephen Cobbhttp://www.blogger.com/profile/04204736531276318817noreply@blogger.com6