Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al

There’s a difference between sickness behaviour and health-help-seeking (to use the awful jargon).

Women often push through minor illnesses in their daily lives (hiding symptoms) but there’s a lot of evidence that women generally go to the doctor more than men (seeking help).

Hence the phenomenon of men reporting symptoms at home to their wives but suppressing them in front of the doctor. When my stepfather’s achilles was tearing I knew two months before the doctor did: he was open about his symptoms at home but minimised them in front of the GP and physio.

The sex / gender differences in ME are so substantial though that they must surely be related to biological sex.

 

Yes, that’s what I was trying to express, that men often seek help from doctors less than women. Thanks for putting my brain foggy post into better words!

I wouldn’t be so sure about “biological sex”. I know of a person whose ME/CFS symptoms improved (though weren’t cured) after he started medical transition FtM.

 

H @Sarah94 nice to see you, it seems like ages, perhaps i just missed your posts. I hope you're as well as you can be

the key word there being 'after'. I'm pleased for him but as you know, it doesnt mean that transtioning was the cause of the improvement, with such a fluctuating and unpredictable disease it could be pure coincidence. Intriguing though... is he taking hormones? (If you/he doesnt mind my asking).

I always wondered why research into hormonal effects/mechanisms isnt explored more

Edited to correct pronouns

 

Yeah I haven't been around much, just prefer to spend my energy on non-ME related things, especially since acquiring a girlfriend (!!) (If you missed that post, you won't have to scroll far down my recent to find it)

I said "after he started medical transition", by which I meant "shortly after he started taking testosterone".

I don't want to get into a debate about one anecdote. I just wanted to make the point that it's not as simple as biological/birth sex, as someone else had brought that up. People taking cross-sex hormones cannot simply be put into the category of their birth sex, scientifically.

 

yes absolutely agree. I was clearly not awake enough to be posting this morning as i see now my post was unnecessary & your point was clear, i didnt take in the context given by prior posts fully enough. Sorry

Edited: for clarity, & to add that i so pleased the reason i've not seen you is because you've been doing other more enjoyable stuff, congrats on the girlfriend so pleased for you

 

I can see that as a reason for men to be slower in seeking diagnosis (if it’s true). But most case definitions of ME requires a 50% reduction in functional capacity. If that has happened, which usually means losing your job or reducing hours with huge financial impact, as well as massive impact on the rest of your life, then would I find it almost impossible to think that people wouldn’t eventually go to the doctor. Not in a country where healthcare is free and almost everybody is registered with a GP practice.

In any case, the same argument applies to every chronic illness, but the very high female ratio seen in ME is way ahead of almost all chronic illnesses.

It’s interesting that in the Norwegian study of 2014, looking at new cases, which includes a lot of children, the higher rate for females emerges at roughly the age that puberty starts.

Added, I think I saw similar data in an old Esther Crawley study, but I can’t find it now.

 

There's some people (usually AFAB, I think) who report some improvement when taking progesterone, but I don't know if that's been studied.

I'm a trans man (assigned female at birth, taking testosterone) and if testosterone affects my illness, it must take weeks or months because I've never been able to tie a change in symptoms to starting or stopping testosterone.

 

Interesting, thanks for sharing your experience.

What/who is 'AFAB'?

I started taking progesterone about 10yrs into my ME & didnt notice any difference. Am just coming off it now after 13yrs so we will see what happens. It was the progesterone only pill - desogesterel though, so perhaps as a synthetic progesterone thats not the smae & perhaps the dose is different.

 

Sorry, AFAB = Assigned Female At Birth

A fair number of transfeminine people (i.e. those assigned male at birth) are also prescribed progesterone, but given the sex differences in incidence of CFS, I don't know that there are many who would be able to speak to this question. They do often take progesterone capsules rectally to avoid some of the filtering done by the liver.

The doses I've seen people report anecdotally have been big - well into the hundreds of milligrams per day. These seem to usually be people who have experienced remission during pregnancy and are able to convince a doctor to prescribe on that basis, so maybe that's why (to mimic the levels during pregnancy rather than what's required for contraception? I'm not certain, it's been a long time since I had to consider hormonal contraception).

 

thats interesting horton6 thanks. yeah desogesterel is only 75micrograms so pretty low anyway.

 

That's very interesting, thanks for sharing.

I'd also say that any effect of sex hormones is most likely seen on risk (whether or not you get ME), not symptoms for the illness. DecodeME found women had more symptoms (a bigger effect) and were more severe (smaller effect) than men (not sure if that is sex at birth) - but these effects were both small compared with the very large effect on sex ratio overall.

 

True, but women are also much more likely to be diagnosed with autoimmune diseases, endometriosis and adenomyosis.

Well spotted! I'm not sure about the answer, though. Unless—as you say—one is based on ME/CFS severity and the other on overall symptom burden (including ME/CFS, comorbidities, and the effect of ME/CFS on women with difficult menstrual symptoms).

 

It's confusing to me too. But I think female associated with severe is without any covariates, and figure 5 showing the opposite is after adjusting for everything.

Edit: So the way I understand it, is if you found a random male and female and asked them only about sex and severity, the female would be more likely be more severe. But if you found two people where everything was identical (age, comorbid conditions, answers to symptom questions, etc) except sex and severity, then the male would be more likely to be more severe.

 

I'm really foggy right now from a car alarm waking me up at 4 AM, so I might be misunderstanding something.

It seems "severity" is self-identified.

And in figure 5, they're adjusting for answers about specific symptoms ("fatigue is disabling", "fatigue worse when active", etc). So they're saying if you took age matched people who described their symptoms exactly the same, the males would be more likely to say they are severe?

Is this actually useful?

Edit: Apart from age and sex, the other symptom associations in figure 5 seem more useful. Showing what specific symptoms play the biggest part in someone's self identified severity.

Which in this case is "Fatigue is disabling" followed by "Fatigue >50% of the time" then "Difficulty remaining standing" which makes sense to me.

Maybe that's why they didn't mention the males being more severe association in the text.

 

Subjective data is obviously to take with grains of salt, but even if we had activity level counters or something (think smartwatch data) it still would be vulnerable to selection biases. The most severe likely won’t have the energy or capability to sign up to any study — as they can’t use their phones at all. (and that isn’t even thinking of the myriad biases possible on the milder ends of the spectrum, as @Hutan briefly mentioned.)