What if most ME patients were men, not women? | Myalgic Encephalomyelitis

What would have happened if three quarters of patients with #MyalgicEncephalomyelitis were men, not women?
*This was one of the first episodes of VladsMEdiary on Twitter, in 2020.
I feel it may be especially useful for new patients with #LongCovid.
Myalgic Encephalomyelitis (ME) is one of the most disabling conditions on earth. It affects 1/250 humans. Most ME patients are women (75%).
The term CFS / Chronic Fatigue Syndrome is unhelpful, and I generally refer to this condition as ME.
I am sadly aware that many patients with Long Covid are joining the ME community.
MEpedia entry on ME - me-pedia.org/wiki/Myalgic_enc...
MEpedia entry on cognitive dysfunction in ME - me-pedia.org/wiki/Cognitive_d...
My Twitter: where you can find my Twitter diary on living with Myalgic Encephalomyelitis is up to 150 episodes - / vladvexler
Insta - / vladvexler

[@VladVexlerME]

I will always read and reply to your comments. My main social media platform for engaging with ME and disability is Twitter, find me there! twitter.com/VladVexler

[@gabriellerose3839]

Thanks for putting the premise of my Ph.D forward in this talk. “More Than a Breath of Difference” is a peer reviewed article and “Acumen, Ambivalence and Ambiguity: Stories of Women with Asthma” is the Ph.D thesis.

[@ChrisEkstedt]

I was diagnosed in 2002 (I'm in the US) ...late. Early in 2002 I was diagnosed with 'depression' as I'd just finished caring for a sick ex husband who died. I was exhausted from caregiving and would go to work and could not see my computer screen because I was so exhausted. I was given anti depressants which made it worse. I finally found an integrative doc who diagnosed me with adrenal insufficiency and gave me IV vitamin therapy which helped me recover to some extent. My then husband hadn't a clue and just told me 'why don't you just go to bed' (I had insomnia and could not sleep). My old integrative doc is retired now and now, my current integrative doc has some external therapies such as ozone therapy but too expensive for me. I'm pretty much on my own and gaining a lot from interacting with the CFS/ME community and finding resources. I feel there is still a gender bias with this. I found it with every mainstream MD during that period and after. No mainstream practitioner I've seen understands this at all.

[@kathrinbauer5358]

I think gender adds to the complexity of autoimmune diseases. Sure, they are complicated and difficult to diagnose. But there's also the fact, they they are more prevalent in women and whenever a woman has a medical problem that is not immediately apparent odds are that it gets interpreted by doctors as psychological or psychiatric issues.

[@karenfitzpatrick6256]

Gender discrimination didn't occur to me. I guess as a nurse. I''d seen excellent nurses who were men and excellent women who were doctors. Men with breast cancer. All atypical but real. It is hard to explain exhaustion that is just always there or maybe five minutes away hanging over you. Sometimes lying down absolutely still and thinking what an effort it is to breathe. No congestion, no shortness of breath, simply the energy it takes to breathe in and out is hard to muster up. Bbb. Exhaustion is much like pain. It's subjective. It can sound like an exaggeration. But As a nurse I always listened to the person. They know best what they are feeling. Personally, I get a lot of "Well, just set your alarm and keep to a schedule!. Well, no that does not work. Even with the best of intentions. It's not a psychiatric issue it's a physical issue. If we could "Will" it away we would have.

[@teresamccartney1309]

I was in college in 1979. Woke up one morning violently ill and covered in a rash. Went to the emergency room had test run. They had no idea what was wrong so recommended a local doctor. This local doctor told me it was college stress and I was making myself sick. He gave me a script for Valium and said I should see a psychiatrist. I was having my period during this. A few months latter they came out with warnings about tampon use and toxic shock syndrome. Bingo. I was highly insulted that these male doctors insisted it was all in my mind!!!!

[@bramsanjanssan4908]

The last issue you reflect on seems like the problem of not having a vocabularium to map out the things you experience in your life. I always remember the story of the farm boys being sent to fight trench warfare in WW1 and, upon returning, even being alien to the concept of trauma. To experience this without having a mental structure to begin to handle your predicament.

[@elsagrace3893]

Neither the world nor any doctor helped me with CFS/Fibromyalgia in the 30 years I’ve had it. I am a woman. Maybe hard for you to believe but I have been just as ignored as you. A support group is the only place my telling of my experience was accepted. We had men in the support group too. I say had because I no longer go. I moved too far away and COVID too.

[@patrikkonat3085]

Good news is. After 30 years, some of us are starting to see.

[@PandemoniumMeltDown]

@@patrikkonat3085 👍

[@SlpBeauty333]

Oddly one of my female cousins is like Patient Zero for CFS. There are absolute differences in women's medical care. For example, heart attacks. Women's symptoms are different than men's. At least I have a name for my chronic illness, I have anklyosing spondylitis, a form of arthritis. It's a simple blood test for a gene. There's so much to being chronically ill. The endless medical trials. Only going to work and medical appointments. I scheduled an appointment in October for 2023. I have an appointment in a different year than this. Love from NYC ❤️

[@gracerobertson8772]

I keep telling people this

[@laurelosborne8984]

ALL.THE.FU KING.TIME!

[@mangorules3013]

i think we'd have an effective treatment, if not a cure by now

[@IsomerSoma]

I am really not so sure if you are correct on this vlad. I would assume the rarity, the suddeness and seemingly uncaused onset of the symptoms, the "invisibility" of the diseases causations and the inhomogeneity of ME are the main factors why ME is underresearched.

[@VladVexlerME]

Not sure what perspective you are trying to see this from. Gender is a big factor. Obvious once you understand the experience of women trying to seek care in the 1980s. Beyond that, there are also dark reasons why ME isn’t researched. There have been systematic attempts to bury ME similar to what we saw with the tobacco industry and the fossil fuel industry. These attempts are still active now.

[@IsomerSoma]

@@VladVexlerME I don't deny these experiences. I am just not so convinced they came about because of gender discrimination. Maybe there is data on how male ME patients have been taken more seriously, but i haven't seen it yet. It more seems like to me that no ME patients were taken seriously for the longest time and not because it was seen as a "female disease" but wasn't seen as a disease at all. There are so many people with none-mainstream diseases who aren't taken seriously within our healthcare systems and i have serious doubts about thats because of discrimination of women. I don't buy it. However now i wonder what you mean by active attempts to bury ME and who would make a proflt from it?

[@Humphreyat86]

Oh, you naive summer child @Isomer Soma. Insurance companies have profited from burying & denying ME by refusing claims against disablement & long term ill-health policies. They benefited from "establishment" medical views which enabled them to legally deny these claims without consequences.

[@michaelm3691]

If ME had been a primarily male issue, there would be significantly less funding, because men are seen as more disposable. This is evident as both the UN and the WEF sets the healthy life expectancy benchmark so that women should live at least 5 years longer than the men in a given country. As bad as that sounds (for sane people) it is actually even worse, because their data is biased to make women look worse off. Measuring "healthy" life expectancy is done through self-reports where men statistically under-report health issues compared to women (which also explains why it is taken more seriously when a man finally reports it). So while the real life expectancy here in Denmark is 4.3 pct, the "healthy" life expectancy difference is only 1 pct according to WEF. This is far below their requirement so we are all the way down on rank 121. Meanwhile, countries like Russia and Zimbabwe where men die A LOT earlier than women share a 1st place with similar "bastions of gender equality". The standard explanation for the disparity is that it is "natural" or that men just make dumb choices and let's say we even buy that (we shouldn't). Why then make it a minimum target for women instead of just a target or a maximum target? Why have the vast majority of gender-based health and safety initiatives, research and legislation favor women? Why even accept it as an excuse when we don't in any other disparity proven to be "natural", but against women - like the consequences of pregnancy and child care? Now, you might say this is just one issue and not part of a broader picture. There are of course many more examples - like discrimination of male victims of violence, boys during their formative years by our school system and homelessness - but they are not needed. This one is enough. Saying one gender needs to die AT LEAST 5 years earlier is so monumentally insane and sexist that every feminist organization, every major news paper and every academic in the field would have protested beyond anything we've seen in modern time had they seen men with the same importance as women. Yet, there is no criticism. Only support of the discrimination and attacks on anyone against it. There is no possible explanation of this lack of reaction that is not a reflection of male disposability. Vlad, if you by some unlikely chance happen to see this, please know there is no anger directed at you (or women for that matter). You are a brilliant and caring person who makes videos of great worth.

[@molnarboglarka9062]

Yes, it is insane :(