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Sounds like re-inventing an egg-shaped wheel.

If people aren't up to speed on the basics it is a bit hard to see how one is going to make any impact.

Studies like PACE are of course standard in psychological medicine circles, which is why this is such a scandal. Pretty much all non-pharmacologial therapy-based treatments have been justified by triaos as bad as these. Which is what the general Medscape audience needs to take to heart.

The most elegant demonstration of the real problem, which should be intelligible to any general audience, is the wonderful video of the PACE trial by the late much-loved Graham McPhee. No jargon, just the reality of wishful thinking.

But these are all irrelevant side issues. It is the basic structure of the trials that makes them dead before they start.

I had another read the through the Tucker piece. It is disappointing that it is a string of off target arguments that miss the main point that open label trials with subjective outcome measures will be biased and that alone makes all the studies meaningless. There is no need to go in to any...

I understand that Tucker may have given a mislleading slant but why should methodological details be less relevant to a general Medscape audience? The diagnositc issues are a big red herring because they allow people to argue that there are nonME/FS chronic fatigue cases that might benefit from...

It is known to be so painful that it is generally regarded by doctors as a catastrophe for the person.

I am afraid I am not particularly excited about this. If TNF was being activated all over we would see a CRP rise and other signs of actual inflammation. This is the puzzle jnmaciuch and I have been arguing about - how do you get interferon pathways activated, maybe with some anti-inflammatory...

If this person actually has Sjögren's in the sense of symptoms associated with Ro antibodies then I don't think it is sensible to call this ME/CFS (which is defined as not explained by some other disease). I have no idea what to expect for response time for Sjögren's but this might be it. The...

I don't think so in this context. The point of GWAS is to look for skewing of presence of groups of linked SNPs right across the genome. For genetic predisposition to mast cell activation to be significantly linked to ME/CFS and nothing show up on a GWAS I think you have to concoct a pretty...

Veldhoen refers to the authors of the Salamon paper as coming from the World Health Network. The first author gives this as their institution. It is a strange organisation apparently set up by 'citizens' advocating for eradication of Covid. That would be a nice idea and as they say was once...

I agree. Isee this sort of political analysis as completely missing the basic psychology of chronic illness mismanagement. I suspect it arose partly out of Robert Burns's ubiquitous 'man's inhumanity to man' and partly out of psychodynamic dogmas that, at least in the UK, have been notably...

But unless we know the boundaries of what we mean by PEM how do we do that?

These things are not simple. I am not saying that we are entirely on the wrong track. I doubt that very much. But the point of a questionnaire would be to get a yes or no answer as to whether someone has "PEM". And the problem I see is that we have no clear consensus on what the boundaries of...

No, I think that is implausible. I have written papers on Sjogren's gland immunohistology and although there can be follicular structures with lots of B cells the number of plasma cells present in most cases is small.

That seems to me strange since for me, with post-EBV fatigue it was barn door obvious and I remember telling my parents about it. It was the thing that got at me most, with all my friends doing sport.

But that is not the consensus here. Some are focusing on how long it lasts It would be a plausible definition but is it what is most characteristic of ME/CFS? I am cautious about that because of my own experience. When I had post-EBV fatigue for six months I had what you describe - feeling ill...

I was referring to a more detailed and hard to explain shape of a curve, not the persistence of Ro antibodies in the first place.

But the price of asking leading questions is that we get a community of people who think they all have the same disease because some doctors have told them this story that they have a special disease characterised by PEM, when in fact they have a variety of disease and the commonest one has a...