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The EDS phenotype is not associated with ME/CFS as far as we know. I don't think either is associated with low BP either. Joint mobility will be associated with ME/CFS because women are more mobile than men, but equating joint mobility with 'EDS' is fatuous. It is a bit like saying ME/CFS is...

It could but does it stop anything getting worse? It might do in ankylosing spondylitis although even there I doubt the evidence is that good. I am not aware of anything much it stops getting worse?

I don't see any harm in the version @Naomi10 posted. The interpretation is complicated and the biology is complicated but it is basically right. If people start asking if they have ME genes it won't do any great harm - it may help jog health professionals into reading up what it is all about.

However, in accordance with methodological frameworks for exercise research (such as the PERSIST guidance), we must acknowledge that this predominantly stems from the physical impossibility of blinding participants and personnel in behavioral interventions. Therefore, while these methodological...

Its sort of biobendybonkersbabble isn't it really? I wonder what @Joan Crawford thinks about all this. Neurodivergence seems a harmless enough term as long as it doesn't mean much but like all these things it seems to be a way of hiding what you are saying in something that sounds the opposite.

But is it? It may well be a preventative. Why don't they say: let's stop treating people with exercise until we have some good reason to do so? Why do we need the multidisciplinary mantra? At least it is good to see that some questioning is going on.

I don't have any specific ideas about what ME/CFS is all about - unlike yourself it seems. I am prepared to consider all possibilities. I think the literature points more to some than others. Comments like the one above deserve a look in the mirror I think !!

That looks splendid.

On the positive side, we do have some useful information from epidemiology and from genetics. The genetics show links to specific DNA regions, indicating that 'ME/CFS' does pick out a biological process common to about 0.5% of the population. The link is the same for women and men so it looks as...

I appreciate your desire to inform and get this right @Naomi10. There are two problems that I see there. It is very unclear to me whether the WHO thought they were dealing with 'ME' as described by Acheson or ME/CFS as we know understand it. They are completely different concepts. Acheson...

There is a long history of people trying steroids. Probably not much in the way of decent trials but I think some formal trials showed only marginal and temporary benefit from smaller doses. larger doses have lifted threatening side effect in almost everyone. The experience with nearly all other...

if you want to treat ME/CFS as a folklore psychological disease that's fine by me but most others prefer not to.

This seems bizarre - poisoning people with rapamycin so that they can do more exercises. I have always hankered after doing more chair-stand repetitions (not). One day last month I decided to sneak into the fast group of the Val D'Isere Ski Club of Great Britain ski-ing programme (I normally...

The Edinburgh data suggest that EBV triggering is a major factor in the early peak. That does not seem to be in doubt. What is confusing, though, is that it does not look as simple as that. Exposure to EBV with intimate contact would be expected to produce a pretty sharp upswing peak in late...

I didn't actually say that, I don't think. Triggers may provide essential clues. I just think we have to be careful about assuming we know the range of them. I think some proposed triggers would narrow down the possibilities quite considerably.

See Chris P's post on FBXL4 thread. Link here Maybe we should trawl through these genes again.

Yes, very intriguing. The new study seems to suggest that a number of X chromosome genes are differentially expressed in brain - which to me hints more towards incomplete XX suppression than a downstream oestrogen mediated effect but I guess it may be complicated.

It is not a question of middle ground. There are three sorts of proposal: 1. Folklore 2. Individual observations that we have to treat as unproven 3. Factors for which we have reasonably strong evidence from large studies ME/CFS occurring immediately after hydrazine exposure is probably 2. It...

We have discussed this at some length in the thread on two peaks already existing. EBV peak incidence does not appear to account for the first peak - it is a bit too late, even if it makes a substantial contribution to the triggering of the first peak. The idea that stress peaks at 35 seems...

But surely that isn't even a diagnostic exercise. It isn't what the GP wants to do. It is an exercise in trying to clean up extracting correlations from populations. Moreover, it excludes the crucial instances where it might be relevant - individuals where the two conditions co-occur.