Talk about mixed emotions
I am writing this in the waiting room of the nuclear medicine facility at UHCW (University Hospitals Coventry and Warwickshire). I am about to have a bone scan to see if the cancer in my prostate has spread beyond said organ. This procedure requires me to be out of the house for about six hours. Not normally a problem, but…
…two weeks ago, Chey’s slow cognitive decline accelerated and it has not yet rebounded. This means that, for the first time ever, I felt the need to have a professional carer present in our home while I was absent from it.
On the plus side, living in Coventry means that we have access to affordable, professional, compassionate care. And one of those professional compassionate carers is currently at the house in case Chey needs anything while I am gone.
Arranging this care is partly a dry run for when I have to go in for prostate cancer treatment which could, probably will, limit my abilities to look after Chey myself for a couple of weeks.
So that’s the first pair of mixed emotions. I’d rather not have prostate cancer and I’d rather Chey had her full cognitive and physical abilities restored, but in the absence of those things we are fortunate to have access to care and support that we need. (A big shout out to Carers Trust Heart of England for it’s excellent work supporting carers.)
Another set of mixed emotions involves our dearly departed Lola, a lovely feline companion for the last five years. Sadly, she became ill three months ago and it turned out to be inoperable stomach cancer, so we had to say goodbye. That was also two weeks ago.
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| Lola |
Thankfully, Lola left us with many wonderful memories and thousands of cat pics! However, at the risk of sounding overly dispassionate and pragmatic, her departure has also eased the care burden on me, enabling me to focus more on Chey, while also supporting my mum (who it must be said, is healthier than both of us and looking forward to her 97th birthday next month).
So there’s #Hope that Chey will improve and my prostate cancer can be treated without a gap in care for Chey. And there’s #Gratitude that we are in a position to access the treatment and care we need. We both have books still to write and places yet so go.
Yes, as cruel months go, February, 2026 has been quite the contender (wry literary reference for anyone who’s had to read T. S. Eliot). But at least we’ve witnessed the first arrest of an heir to the throne in over 350 years!
As time permits I will be writing up notes on Chey’s health and mine. In the meantime, offerings to the weather gods would be appreciated. Seeing a lot more sun and a lot less rain would help, preferably before April.
P.S. I already made a website to share Chey's underlying health issues, it's called She's No Okay, Yet.
My 2025 output, from jagged AI to video takes, with sides of cybercrime, infosec, medicine, and anti-misogyny
This short video was a fun part of my AI-cybersecurity work in 2025
As one year ends and another begins I find it helpful to look back at what I managed to accomplish over the last 12 months, even as I plan for the next 12. Back when the study of cybersecurity was my full time job, this process was an annual ritual, often embodied in weighty reports that sought to capture the implications of one year's cybercrimes for the next year's defensive strategies. ----- D R A F T -----
Around the middle of 2019, cybersecurity ceased to be my full-time job as I retired from my role as senior security researcher at ESET, one of the leading makers of security software. My intention at the time was to move to England to support my mother who was entering her nineties, write my next book, and put out content that might attract some conference speaking, teaching, and consulting work.
Unfortunately, I had not factored in the changes to British society caused by the government's official policy of hostility to foreigners, including my American wife. She was forced to undergo a long and deeply distressing visa process before she could even enter the country, and suffered a serious brain haemorrhage before that permission was granted. That turn of events resulted in my transition to primary carer/caregiver for two people, my nonagenarian mum and my brain-damaged wife.
What does all that have to do with my 2025 output? Well, as you can see from the following snippets, my attention has been split in several directions. There's cybercrime of course, particularly the tension between institutions urging people to "just go online" and the grim reality that having any kind of online presence these days increases your chances of being scammed, defrauded, stalked, or otherwise assaulted and abused. I posted some of my work on this to Substack, a platform that I started to favour in 2025.
This was a great opportunity to be remunerated for digging deep into several areas of great interest and concern, areas in which I have a lot of history. (I was fortunate to have spent my last eight years of regular employment working with cybersecurity experts who had pioneered the use of machine learning, neural networks, and artificial intelligence — and I mean real experts, not techbros seduced by AI hype).
That was timely because my partner and I had just discovered that unknown number of the two dozen books that we have authored since 1992 were among the pirated volumes that the company known as Anthropic downloaded and used without permission. Thankfully, several authors sued Anthropic in a case that is referred to as Bartz v. Anthropic. The Authors Guild says the class action suit was "brought by authors against an AI company for using books without permission to train large language models." Naturally, we wrote about this and listed which of our books might be involved.
In June, I realised that 2025 would see the 30th anniversary of the first macro virus and so I started writing an article about this. For those not steeped in the history of malicious code, the appearance of a macro virus "in the wild" was a big deal. In fact, it made a difference to my life. I'd been working on the computer virus problem since the late 1980s, covering it in my 1992 book on computer security. By the start of 1995 I was working for the National Computer Security Association which established the first commercial testing lab for antivirus or AV software. At that time several AV products were proving to be very effective when properly deployed and managed, to the point where I was thinking "problem solved, or at least solvable".
The Word macro virus vastly expanded the scope of the problem and introduced an information system attack strategy that is still used today, by criminals and state-aligned actors, like ransomware extortionists and spy agencies. My 30th anniversary article was written to highlight the fact that the macro virus was made possible by a selfish decision on the part of Microsoft, and that fact should be a red flag for the "add artificial intelligence to everything" economy. Here's a link to the article:
Ironically, while researching the macro virus article, I found a glaring example of how the use of AI can go wrong. Naturally, I wrote about this and published an article online:
My research into the workings of AI and its impact on society continued with a novel hypothesis: if AI is going to help humans get things right, which is what a lot of politicians and investors were saying in 2025, what does AI think we should be doing about cybercrime? And what weight will that thinking carry in the real world.
So, I set about conducting structured interviews with seven different AI models. The results were very interesting to say the least. This led to an article I published on Medium titled: "ChatGPT Says Cybercrime Is a Pervasive and Damaging Global Threat, Other AI Agree."
Speaking of health, I was prompted to revisit the topic of haemochromatosis in September as a by-product of dealing with Chey's declining health. Now that Chey is a UK citizen we spent quite a bit of time working through the process of getting her some support as a housebound patient with cognitive issues, plus some help for me as primary carer/caregiver for said patient. I might share more of that journey in 2025, but here's the haemochromatosis article, a good basic introduction to the topic:
In October, I also refreshed my page on Primary Aldosteronism, also knowns as Conns, a leading cause of heart disease that is curable for many these days, given the advances in medical technology this century. The fact that millions of people who have this condition are not diagnosed or treated forms the basis for an article I hope to complete in Q1 of 2026. It addresses the reality of "AI medical breakthroughs" and why we should not count on these making a big difference to human health.
Finally, in November, I turned my attention to something of which we will see a lot more in 2026: misogyny and other ugly manifestations of male supremacy. I am sick of this, and the men who perpetuate it. Knowing how best to oppose this is challenging but awareness of the problem is clearly a first step. And clearly there are a lot of straight white cisgender men who don't yet see just how different, and difficult, life is for people who are not. To help open some eyes and minds I wrote: Lifting awareness of male supremacy: an elevator pitch with a twist.
So, those are the highlights of my output in 2025, but somehow it feels like I'm missing something. Ah yes, my annual look at the IC3 Internet Crime Loss statistics. This came out in April, and this year's title was: 2024 sets a record for cybercrime losses and at $16.6 billion it's a lot higher than I predicted. I am predicting a new record of $20 billion in the report that should arrive in April, 2026, a fivefold increase in five years, further evidence that too many humans are missing the point when it comes to cybercrime.
Speaking of missing, I did miss several events in 2025 due to my responsibilities as a carer. One of these was DefCon, the annual hacking conference, which I first attended 30 years ago. As you can see, I have the t-shirt to prove it, and yes, I did write about that.
Here's hoping you find some of my 2025 output to be at least one of these:
helpful, informative, entertaining
helpful, informative, entertaining
A great band you may not NO
Just over a decade ago I encountered a cool band out of Echo Park, Los Angeles, that went by the name of NO. I thought they had a very distinctive sound and their songs had lyrics that stuck with me. Give this track a listen and see if you agree: Leave the door wide open
The way I met NO was also cool: the band's lead singer, Bradley Hanan Carter, is the cousin of Andi Lee, who was my CEO at the time, but also an accomplished musician in his own right. He arranged for NO to play at several company events, including an awesome rooftop party during the annual BlackHat/DEFCON cybersecurity fest in Las Vegas. (Tickets to the event were very successfully employed as prizes to draw people to the company booth!)
My company phone produced some funky images of the band, 50 floors above Vegas. In fact, I took the shot above as NO were performing one of their most popular songs, "There's a glow". The opening of the song is:
There's a glow up over the city the city.
There's a glow up over us all.
The song was later set to video game footage from Grand Theft Auto. Note in 2014, the band changed their name to Black English, but 10 years later changed it back to NO. This makes their material tricky to find, but well worth it. And you can also reach them via a Facebook page.
That rooftop gig was not my first time seeing the band live. NO played a company party in 2012 where it was obvious that they were something special. They can create a very rich sound without it becoming noise, generating powerful emotional tension by restraining that big sound until just the right moment.
Here's a good sample of NO playing live along with an interview.
Disclaimer: I realize musical recommendations from old white guy may not be compelling to everyone, but this is an old white guy who loves good music, who once endured three days outdoors in cold English rain to catch artists like Santana, Led Zeppelin, Frank Zappa, Pink Floyd, Jefferson Airplane, and Fairport Convention, in a single weekend (Bath Festival of Blues and Progressive Music, 1970).
Disclaimer: I realize musical recommendations from old white guy may not be compelling to everyone, but this is an old white guy who loves good music, who once endured three days outdoors in cold English rain to catch artists like Santana, Led Zeppelin, Frank Zappa, Pink Floyd, Jefferson Airplane, and Fairport Convention, in a single weekend (Bath Festival of Blues and Progressive Music, 1970).
Lifting awareness of male supremacy: an elevator pitch with a twist
The source of much of what is wrong in the world today is male supremacy, awareness of which needs raising. Could one simple question do the trick?
I believe there are many men out there who, like me, are sick to death of guys who perpetuate, knowingly or unintentionally, the evil that is male supremacy and all the pain and suffering that it is causing in the world today.
In my opinion the solution to male supremacism is — or at least begins with — men and women improving their understanding of each other. One huge gap in mutual understanding that I see is the risk gap: far too few men truly comprehend the amount of risk that women have to deal with each and every day, throughout their lives.
According to a vast range of studies and statistics, life is a lot riskier for women than it is for men, even in so-called advanced countries like the US and UK. If you doubt this, consider this observation from a woman I know:
What a luxury it is not to have to think about being assaulted while you go about your day, to feel safe in a rideshare, loiter in a park, relax in a bar, walk home alone from work at night. — Soraya Chemaly
If you are still not convinced that women are forced to live with more risks than men, I have a question for you:
A man and a woman get into an elevator. Which one is doing risk assessment?
If you’re a man and your first thought was the woman, good for you! It sounds like you may have what it takes to truly understand what I mean about life being riskier for women. If you're a man and answered the woman and immediately felt discomfort, sadness, shame, or anger that even now, in 2025, this is how things: Congratulations! You have real potential to make this world a better place, a place where women feel as safe as men.
I'm talking about a place where women can enjoy the luxury of not having to think about being assaulted while they go about their day. A place where male supremacy is not exacting a constant toll on our mothers, sisters, daughters, partners, wives or lovers. A place in which it is no longer the case that:
...men’s relative freedom of movement and safety are unspoken privileges. And we pay for them dearly every day. — Soraya Chemaly
To be clear, I think men can and should make this world a place where women are free to live the lives they choose for themselves, and it safe for them to do so. As I've said, it’s going to take a lot of hard work, but I truly believe this work will make life a whole lot better for both men and women.
And there is one relatively easy piece of work we can all do right now: ask the elevator question (or the lift question if you’re in the UK, Ireland, Australia, New Zealand, or South Africa).
Working the Elevator/Lift Question
I’ve been asking the elevator question for many years in many different settings and I find it's an effective and relatively non-confrontational way of raising awareness of how different life is for men and women due to the huge gap in their risk exposures. And to say that I’ve learned a lot by asking this question would be huge understatement.
First of all, almost all women answer the woman. I had expected this when I first came up with the question, but I wasn't prepared for how many women said it right way, I mean instantly, sometimes loudly and with feeling.
And I had not expected at all was the unprompted outpouring of elevator risk management strategies, some of which I will paraphrase here:
- I always head to the back of the elevator.
- If the elevator’s empty and the man goes first, I pretend I’ve forgotten something and don’t get in.
- If the elevator’s empty, like it’s just him and me, I just don’t get in.
- If it’s just me and and a man waiting for the elevator I take the stairs.
- I always take the stairs, and not because I need the exercise.
- If I’m the only woman waiting for an elevator I make sure my keys are in my hand.
For me, these strategies shine a bright light on the huge gulf between the way men and women experience daily life; and the fact that women are doing this is a concrete evidence of the insidious nature of male supremacy.
This risk gap, and the way that it reflects all the things that make up male supremacy today — the persistent misogyny, the enduring patriarchal structure of society and its institutions, the appalling level of violence against women — needs to be openly discussed by all of us. And I mean all of us everywhere, at dinner parties, in staff meetings, over drinks after work, and in our homes.
Which brings me to the elevator pitch, sometimes called the elevator speech, lift speech, or elevator statement. Wikipedia defines elevator pitch as: "a short description of an idea, product, or company that explains the concept in a way such that any listener can understand it in a short period of time."
I've written a ton of these during my time as an entrepreneur, author, and film producer. Here's my elevator pitch explaining why we should be asking the elevator question:
"If you're looking for a way to raise awareness of how unequal life still is for people who are not rich white men, especially for the more than 50% of people who present as female or feminine, pose the following question whenever you get a chance: A man and a woman get into an elevator. Which one is doing risk assessment?"
If the elevator ride is a longer one, I would add suggestions as to who should hear this question: your partner, your friends, your work colleagues, the people you meet at conferences, sports events, coffee shops and bars.
Anyway, that's my pitch for starting conversations about male supremecacy. Ask the elevator question and see what happens. I'd love to hear how you get on. Could it be said better? Do some people just not get it? Would it be better to say risk management that risk assessment?
(I tend to think of risk management as what's happening once inside the elevator car; but clenching of keys and taking the stairs are risk mitigation techniques — let's face it women are often very good at all of these things.)
Speaking of being very good at things, I think Sora Chemaly's new book — All We Want Is Everything: How We Dismantle Male Supremacy — is very good at spelling out what male supremacy is, why it still exists, what great harm it is causing, and how important it is for us to — in her words — dismantle it. Cramming all that into one clear and concise volume is a major accomplishment, one that I hope will spark major progress in the dismantling of male supremacy.
p.s. If you already know this stuff, recommend Soraya's book to folks who don't. Better yet, buy them a copy.
NOTES
1. Gender language: I made a conscious decision to write this article using the traditional terms men and women. My reason: I didn't want to lose any male readers before I had even made my point. That point is: male supremacy is bad for everyone and one way to advance the very urgent and very necessary task of dismantling it, is to raise awareness of just how much harm it does to us all, including cisgender women, trans and non-binary people, and those with Indigenous gender/social roles, and also cisgender men like me. I'm pretty sure most people in all those groupings already understand this, with the notable exception of an unacceptably high percentage of cisgender men.
2. Male Supremacy: The belief in cisgender men’s superiority and right to dominate, control, or erase “others,” women, trans and non-binary people, and those with Indigenous gender/social roles. —Institute for Research on Male Supremacism
3. Quotes: The exact source of Soraya's quotes in the article is All We Want Is Everything: How We Dismantle Male Supremacy, Kindle Edition, p 12, 2025.
4. Transparency: I should mention that I did not come up with the elevator question in the context of dismantling male supremacy. It a rose from my efforts to recruit more women into the cyber security profession. There has always been a shortage of people with the necessary aptitude and inclination to do the vital work of defending our ever-growing digital information systems and the data they process. I'm sure I wasn't the first person to point out that the profession was male dominated but that women were entirely capable of making vital contributions to profession. But I was one of the first to point out that, on aggregate, women tended to have a greater awareness of risk than men, and hence likelier to possess an aptitude for security work.
5. Keys and self-defense: Clenching your keys in your fist with the points sticking out between your fingers has long been a staple of "self-defense for women" but many experts are now of the opinion that a different style of key grip is better, as enthusiastically demonstrated by a man in this blunt-but-on-point YouTube video on using keys as an improvised weapon, and discussed by a woman here.
Hemochromatosis, haemochromatosis, and iron overload redux
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| Haemochromatosis: the most common genetic killer of folk from the British Isles and their descendants |
Back in 2008, while I was living in America, a big word became a big part of my life: hemochromatosis, pronounced he-moe-kroe-muh-TOE-sis (spelt with an extra 'a' in the UK and Australia).
According to the Mayo Clinic, hemochromatosis is a "condition that causes the body to absorb too much iron from food," commonly referred to as iron overload. Most cases of hemochromatosis are due to a genetic condition, referred to as hereditary hemochromatosis in America (HH), and genetic haemochromatosis in the UK.
The problem with excess iron is that our bodies store it in our organs, especially the liver, heart, pancreas, and joints. This causes damage to those organs and can lead to life-threatening conditions, such as liver disease, heart problems, and diabetes. It can also cause life-limiting conditions like chronic fatigue, severe depression, and loss of libido.
Yes folks, despite the fact that our bodies need iron, and having too little iron can be a serious medical problem, iron is one of those things of which a person can have too much. Unfortunately, iron overload can occur "naturally" in people who have certain genetic mutations that affect a particular gene that plays a central role in regulating iron absorption in the body.
The gene genie
Just to be clear, there are several ways in which a person may develop hemochromatosis other than inheritance, but hereditary hemochromatosis, sometimes referred to a HFE hemochromatosis, accounts for the vast majority of cases.
But why is this big word in my life? Short answer: in 2008 my wife found out she has it. Also, she has suffered greatly from it and there's no cure for it.
Furthermore, numerous members of her family had/have HH. To top things off: iron overload is seriously under-diagnosed in many countries, despite the fact that detection of it, and treatment for it, are relatively inexpensive.
Here's more clarification: not everyone who has the genetic mutations referred to above develops iron overload, and the percentage of those who do — referred to as penetrance — is debated. More recent studies are finding higher levels of penetrance, reflecting the still evolving understanding of how much damage iron overload causes.
Awakening and awareness
Here's what happened after my wife found out she had hemochromatosis: we researched it. We found that it is more common than most doctors have been led to believe, and that early diagnosis can prevent some of the symptoms that were plaguing my wife.
We felt we had to do what we could to increase hemochromatosis awareness. Because she was quite ill at that point I took the lead and posted this on my blog: What Am I Thankful For? A diagnosis of hemochromatosis. That was Thanksgiving Day, 2008.
One of the first reliable source of information we found was the Iron Disorders Institute, a non-profit organization founded to address health issues arising from both excess iron and too little iron. The institute coined the term Iron-Out-of-Balance™ to describe this. Here's what the Iron Disorders Institute home page looked like in 2008, by which time the institute had been on the web for 10 years.
Some of the documents were designed to be handouts you could give your doctor, a great strategic approach to awareness and education given that many primary care docs and GPs have had little training related to hemochromatosis. I've lost count of count of how many times I have directed people straight to the Hemochromatosis Diagnosis Algorithm which includes the detailed guide to Hemochromatosis Clinical Management.
During 2009, as Chey was undergoing gruelling rounds of blood-letting — the first line of treatment when someone has iron overload — we got to know the IDI's leader at the time, Cheryl Garrison. It is hard to think of a person who has done, or imagine a person who could ever have done, more to raise awareness of hemochromatosis than Cheryl.
Apart from anything else, Cheryl wrote the book on eating right when coping with iron overload. Fortunately for us, The Hemochromatosis Cookbook actually came out in 2008 and we got a copy right away. We read the book and everything on the IDI website. Then we corresponded with Cheryl and attended several IDI meetings and conferences.
I learned a lot during this time, from experts in the condition and people struggling with the effects of iron overload and its treatment. The latter, intense rounds of blood draws—technically termed phlebotomy or venesection depending on geography—can be exhausting and may get complicated. For example, veins get scarred and hard to find. In Chey's case she was fitted with a port, an internal medical device, also known as a port-a-cath or implantable port, that lies under the skin and connects to a major vein.
Particularly worrying were the many tales of missed and delayed diagnoses that led to avoidable and needless suffering among patients with iron overload due to HH. This reality was reflected in a 2008 study by the Centers for Disease Control and Prevention (CDC) that found it was taking approximately 9.5 years from symptom onset for a patient to be diagnosed with hemochromatosis. That tracked closely with Chey's experience.
Frankly, I was shocked by the extent to which so many doctors lacked knowledge of, or interest in, iron overload and hereditary hemochromatosis. Indeed, I came up with a cynical hypothesis: the profit-based American medical system was not interested in hematosis haemochromatosis because the treatment, namely phlebotomy, was cheap. On the other hand, if pharmaceutical companies ever developed a pill that could be prescribed to people suffering from iron overload, then there would be billboards to raise awareness of hereditary haemochromatosis all over daytime TV.
Taking action
By the end of 2009 I was read to launch my own efforts to raise hemochromatosis awareness, starting with a Facebook page. To the best of my knowledge this was the first such page on Facebook and I got the URL facebook.com/Hemochromatosis. Bear in mind that I was living in America at the time, hence the spelling.
This page, which I titled Fighting Hemochromatosis quickly attracted a lot of likes and followers (now at 10K and 11.1K respectively). I spent many hours responding to questions from visitors to the page. And I read dozens of disturbing personal stories people shared, further reinforcing my opinion that the medical community was failing, almost completely, to address a distressing and all too often deadly genetic condition.
The hemochromatosis Facebook page also showed me that a greater range of educational materials about the condition was needed. There was also a need to keep information fresh and updated as new developments occurred in the field of hemochromatosis.
To help meet these needs I launched a blog in June of 2010. I called it Celtic Curse, because that is one of the names by which haemochromatosis is known, arriving from its prevalence amongst people with Celtic roots. The first post was not lacking in ambition: The Work Begins Here: Teaching the world about the Celtic Curse. BTW, another old term for hemochromatosis in bronze diabetes, due to the tendency of iron overload to cause diabetes and skin discoloration resembling a tan.
Armed with a Google News Alert to catch fresh stories about haemochromatosis, I began to populate the blog with information. I cross-posted useful articles to the Facebook page and of course used a Celtic Curse account on Twitter to further spread the word. I experimented with paid message promotion on both Facebook and Twitter. (it didn't hurt that during this time I was helping a dear friend of mine advertise his digital advertising software, frequently rubbing shoulders with pioneers in digital marketing.)
Indeed, my involvement in "evangelising" haemochromatosis awareness got to the point where the Iron Disorders Institute and I were discussing a paid role to do the work full time; hence the business card seen here. Unfortunately, making that a reality meant finding funding for such a role.
Reality intervenes
By the time 2011 rolled ground, it was clear that Chey's body had been so heavily impacted by iron overload that she would never be able to work again unless there was some extraordinary breakthrough in medical research. (And such a breakthrough seemed increasingly unlikely given how dismissive I had found most medical professionals to be about haemochromatosis.)
Our prospects were further hampered by the fact that the mortgage fraud crisis and the economic crash caused by the ensuing banking crisis had wiped us out financially. So when I received, out of the blue, a relatively lucrative job offer from a respected security software company, I took that over pursuing a role in the fight against hemochromatosis. In order to maximise my returns on that opportunity, I had to cut down on the time I spent supporting the Facebook page and the Celtic Curse blog.
By 2019, we had made something of financial recovery and Chey's research into medicinal cannabis had yielded some positive results, not as a cure but as an aid to coping with her symptoms. This was facilitated by the fact that the aforementioned job was in California, a stat that has somehow managed to climb up the global economic charts despite letting residents consume cannabis legally. (california is now the fourth largest "country" in the world based on GDP, behind only Germany, China, and the United States itself, surpassing countries like Japan, France and the UK.)
We decided that I would retire and we would move to the UK to be near my mother who turned 90 that year. That's basically what we did; but unfortunately, during the process, which was made extremely stressful by Britain's vicious anti-immigration regime, Chey suffered a subarachnoid haemorrhage. That, and a second haemorrhage during Covid lockdown, further impeded my ability to maintain my online campaign to promote awareness of haemochromatosis.
While I have embraced the role of carer for Chey—caregiver in US parlance, unpaid carer in UK terms—it does require a lot of time and energy. That is why I have begun the process to hand over some of the digital hemochromatosis awareness assets I have generated to an entity that can properly leverage them.
Further hemochromatosis fallout
There continue to be some bright spots as well as dark moments in the haemochromatosis story and this has always been the case. On moving back to my native island, I found that a charity called Haemochromatosis UK is doing excellent work in both awareness raising and support of haemochromatosis patients and families. They have helped push forward valuable research.
I have also found that researchers here are open to the idea that haemochromatosis is not just about discovering someone has too much iron in their system and then bleeding it out. It may be a lot more complex than that. There are indications that haemochromatosis can be a factor in long-term fatigue, despite iron levels being controlled. Better understanding of that might lead to improved treatment options and a higher profile for haemochromatosis in patient diagnosis, given that the UK medical establishment does tend to back efforts to reduce the occurrence of conditions that impose a burden on the national healthcare system.
I am also hopeful that the under-explored connections between fibromyalgia, sexual dysfunction, suicide, and haemochromatosis may get long overdue attention.
Finally, I should mention the one aspect of haemochromatosis that I have gone out of my way to address: hemopause. This is a word I made up to describe a syndrome which is very real, namely the tendency for doctors to dismiss the symptoms of haemochromatosis as menopause in women of a certain age. As you might expect, I made a website about this.
I identified the hemopause syndrome while processing the many accounts of visitors to the Facebook hemochromatosis page, comments on the Celtic Curse blog, and real life encounters. Hemopause arises from the overly patriarchal nature of medicine in the US and UK, and the prioritising of profit over patients in America. It also exemplify what can go wrong when a profession is dominated by males and male attitudes and thus, on the whole, disinclined to take seriously enough the pain and suffering of females. But that's a whole other awareness campaign and website!
Notes
The gene known today as HFE was first identified in 1996 by researchers seeking the genetic cause of Hereditary Hemochromatosis (HH). They found it on the short arm of chromosome 6 in a region known as the Major Histocompatibility Complex (MHC).
(These are all terms I encountered for the first time back in 2009 when there were lots of thing I didn't know about genetics, like chromosomes have arms. Sadly but truly: there's nothing like a loved one getting disabled by a genetic condition to shove you up a learning curve.)
Apparently, this MHC region is home to many genes related to the immune system, including the HLA (Human Leukocyte Antigen) genes. Because the new gene's sequence looked similar to HLA class I genes but was distinct, it was initially named HLA-H (meaning an HLA-like gene).
Unfortunately, the name "HLA-H" quickly became problematic because of confusion with the well-established HLA system. Geneticists thought name could mistakenly lead people to assume HLA-H had a primary function in immunity rather than iron regulation.
Another fascinating thing I learned from researching HH is that there's an official gene nomenclature committee (HGNC). It decided HLA-H needed a unique, unambiguous name that reflected its function rather than just its location. 3. Creating the "HFE" Acronym
The researchers and the nomenclature committee decided to change the name. They created the acronym HFE from the H from HLA, followed by F from the suggestion that it might be related to the F gene in the MHC region (though this was not confirmed), then E from its potential similarity to the HLA-E gene. Thus we have HFE, the Homeostatic Iron Regulator.
DefCon 33 arrives, my talk from DefCon III survives
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| The T-shirt I bought at my first DefCon, which was DefCon III in 1995 |
DefCon, the very popular annual hacking conference held annually in Las Vegas opens today, August 7th and runs through the 10th. This is DefCon 33 and I'm a bit sad I can't be there. This would have been an anniversary event of sorts, the 30th anniversary of my first Defcon talk. And I will miss seeing all the folks I know that will be there this year.
The good news is that Jeff Moss—the founder of DefCon—had the wisdom and the foresight to insist, even back in 1995, that all talks delivered at Defcon be archived. That means anyone with an internet connection learn from past events, which is great because in my experience DefCon never fails to deliver cutting edge information about digital technologies, how they work, how they don't, and what that might mean. |
| DefCon III shirt with human inside |
More than a few times I have used the DeCon archives to find out when a particular vulnerability was discovered or explotied for the first time.
As a big believer in learning from history rather than repeating it, I like to debunk statements like "we had no idea criminals would exploit our technology like that."
Really? You mean nobody from your security team went to the session at DefCon X where exact same exploit was demonstrated?
And on a personal level, those DefCon sound archives mean I can still listen to what I said, 25 years ago, preserved as an audio (.m4b) file.
If you want to listen, just go to the DEFCON III Archive and search for Cobb. My talk was titled: The Party's Over: Why Hacking Sucks. Alternatively, you may be able to listen in your broswer (not all browsers are supported). The talk is about 49 minutes long and while the sound starts out rough, it quickly gets better.
My goal with this talk was to generate dialogue about the ethics of hacking, and I think I succeeded. In fact, the audio captures that quite well. As someone who had been working on the computer security problem since the 1980s, I have to say that I learned a lot from that 1995 session and appreciated everyone's input. The feedback from the audience must have been okay because I was invited back the next year
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| A Cobb in a Kilt, 2018, DefCon 26, |
Trainspotting was one of my hobbies when I was a boy, back when steam engines were still is service. My point was that in our enthusiasm to explore this fascinating pre-digital technology we would sometimes break the law and trespass into locomotive sheds.
The parallel with hacking was that despite this illegality, some of us matured into respected professionals with rewarding careers. Indeed, one of my fellow trainspotters has had a long and fulfilling career writing and editing books about trains.
Anyway, the talk lasts less than 30 minutes and might be worth a listen, eve if it's just as a historical curiosity. However, before you click this link to that talk be warned that there is some swearing, albeit in a very polite voice.
Over time, the Defcon archives have evolved to become a quite amazing cornucopia of knowledge and history, a feast for eager minds, and a legacy for future generations.
Thanks Jeff and DefCon! Thanks your foresight!
And please accept my apologies for not being their this year. I will be keeping an eye on things from 5,000 miles away in Coventry, England, where I'm looking after my mum (96) and my partner Chey, herself a Blackhat speaker (Why Government Systems Fail at Security, 2001).
P.S. For more about Chey and her current condition, you may want to read this.
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