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Finding T cell reactivities like this has been going on for decades. Usually it cannot be replicated. This might be different but the framing of the interpretation is depressingly familiar. I doubt it has anything to do with ME/CFS or Long Covid.

I am tired of seeing abstracts full of interpretations but no data. I don't have time to plough through the papers these days.

Histograms are almost completely useless in this situation. We need to see the individual data points. I am not particularly impressed by the differences. Most values are within the normal range. Some of the spreads are truncated but artefacts can do that. Higher NK values in normals might...

Thanks for the comments. I think amyloid is investigated because there has been a theory that amyloid accumulation causes Alzheimer's. That brings in billions in funding. I am not actually aware of any other 'waste' produce that has been suggested to be bad in the brain. Nobody worried about...

That would depend on a huge number of factors. I think it is unlikely to be that simple.

I don't but I don't know the trainees and new consultants these days. If the UCL geneticists get a grant to work on an ME/CFS gene then there might well be a young academic rheumatologist who sees the opportunity you mention and agrees to provide the clinical input. It would be nice to think...

In one sense I very much agree. My reason for raising this is not to push for a forum campaign but to raise awareness of the problem so that individual members who may have relevant specific routes of communication can take the problem into consideration in those channels. In another sense I...

This is a good question. My comments have been aimed at the use of POTS as a 'comorbidity' to ME/CFS. I see it as making no sense there. If the person fits ME/CFS then fatigue and concentration problems are already covered. Goodness knows where constipation would fit in. It is so common it is...

Yes, we should probably agree that we are at cross purpose. My pointing out that we have a logistic problem is not an excuse by anybody. The physicians are failing and maybe excusing their failure but that has nothing to do with the reason to try to mitigate the confusion that is impeding care...

I had a good look through that review. It looks to be more or less the current state of things. My key thoughts are: 1. The main argument for the glymphatic system being a waste disposal route seems to be that in mice engineered to make too much amyloid protein in the brain some of that amyloid...

An important point. There is also the issue of holding personal data - which normally needs careful curation to be legal and ethical.

Hi @Rachelsmallfry, It seems reasonable to try to replicate an anecdotal finding on gene variants. As has been said DecodeME might be expected to give us a pretty reliable answer but it is possible that it would miss these variants I suppose. Do you have information on that, in term sof the...

That is an intriguing one. The logic seems a bit haywire: We know that many people with ME often experience more than one other condition at the same time. These conditions often share a range of debilitating symptoms - such as post-exertional malaise, crushing fatigue, persistent pain...

That is a fairly typical muddled MEA sort of list.

But this misses the point that ME/CFS is a sensible pragmatic syndrome term that covers a set of linked symptoms with a core feature of PEM with no implication of cause. The others all presume some unfounded cause and are so vague that prevalence rates vary from 1 in 5000 to 1 in 20. For ME/CFS...

No, I don't think it is. It is true of ME and probably of CFS, both of which in their historic uses were maybe as bad as the others. But when doctors talk of ME/CFS these days they are mostly talking about an accepted biological syndrome. GPs may still disbelieve. But ME/CFS is not a deliberate...

I am thinking specifically of UK ME/CFS and maybe Long Covid advocacy groups who I do not see as needing to be attached to these 'comorbidity' categories. I agree that there are some such as #MEAction who do seem rather tied to these ideas.

But I am not accepting anything 'posited by medical professionals for their own failings' am I? At no point have I blamed patients as far as I am aware. The reason for taking action is that people with ME/CFS have now been completely excluded from physician care in the UK and I think it at least...

I am not suggesting that it is the fault of the patient if they believe a doctor. But if as the second doctor you think the diagnosis is inappropriate you are obliged to say so. The patient may be shocked but that is not the fault of the second doctor - especially if the first doctor has...

I get that impression very strongly. And the irony is that these labels are tickets to being disbelieved by the entire medical profession, some of whom will play the game of pretending they explain something and hand out pills and some of whom will say they don't want to be involved.