Yes I like that. I would also emphasize that ME/CFS is not special in any sense and should not be thought of as different (besides some effects that are probably not worth describing in these situations). People think all sorts of things work when they end up not working. Remember when people...
There have been several large scale studies looking at exactly these things in better recruited populations and run by people with likely more expertise.
Arguments on diagnostic criteria influencing results are only relevant if you provide grounds for the belief that the interpolation from the CF population to the ME/CFS subpopulation doesn’t work. That is not the case in the piece above.
As far as I’m aware there is an analysis that suggests...
No doubt that these rankings and their different metrics are just meaningless popularity circlejerks even when you sort the rankings by discipline. They are of course very lucrative for the universities where you pay a high fee or for those areas where a degree is a certificiate of authority and...
I completely agree. I think ME/CFS=ME=/=CFS is unhelpful and will just lead to further confusion amongst the patient cummunity and researchers.
Apart from that wasn't there an analysis showing that patients with PEM responded no different in PACE so isn't it all fairly irrelevant? In turn the...
Seems like there's a pretty large difference in age between the patient population and controls.
The "Clinical Examination" that was conducted doesn't necessarily give me the feeling that this group knows what the sydromes they are studying look like.
Can't add much but in the past Fraser had seemed to respond to questions on X quickly. I'd maybe ask him what happened to those other trials he had previously been talking about. If they were something rather different, what happened to that?
I don’t think anybody can or has criticised patients just because there are certain ways an unfair system has to be played or because of how the cards have been dealt and I agree that there are many layers of complexity to an individuals story which cannot be judged from afar.
However, I do...
And I think it is rather unlikely that the trial approach would be helpful in recruiting new bright minds. It seems more likely to me that such an approach would just result in the testing of the same old stories that are probably not worthy of testing.
The psychosomatic studies will happen one way or another, perhaps the more interesting question is: Will any good studies happen or will it all be the rehashing of old ideas?
Aren't most Long Covid organisations heading towards a PAIS direction? At times maybe not even because of their own thoughts but maybe just because of the politics involved. I would not be surprised if there are situations were a contrary approach would lead to "being cancelled".
I think it is being argued that there might now be a small way forward even just getting a few serious clinicans involved on the basis of things like DecodeME, but that for that to happen the other mist has to clear.
Yes, there is no disparity in fringeness between clinicans that give an ME/CFS diagnosis and those that give a POTS, hEDS or MCAS diagnosis. It is typically either handed out by those type of clinicans that also have podcasts, believe in spontaneous human combustion being a consequence or by...
Engagement in an mHealth-Guided Exercise Therapy Program Is Associated With Reductions in Chronic Musculoskeletal Pain
Context
Chronic musculoskeletal pain costs the US $980 billion annually. Conservative treatments are the criterion standard, but scalable methods of treatment remain to be...
If I recall correctly there have been several sleep studies in pwME (and there's some meta analysis on these as well). The intramural study included a polysomnography ("polysomnography did not reveal clinically relevant findings (Supplementary Information, Sleep dysfunction)". What I'm much less...
I do wonder whether one article on all issues will be as fruiftul as we hope. @ME/CFS Science Blog wrote one article on the "issue with POTS in ME/CFS" and I think some got the message or at least understood that perhaps things aren't necessarily as they are said to be. I am afraid that one...
I doubt they are an eye opener for the most PwME.
JE is seen as old dismissive physician that can't come to terms with the "new reality" and that is spreading fights amongst groups that should be fighting together and other physicians are championed. His statements are disregarded by those...
And perhaps most importantly happy accidents often have nothing in common with the data gathering approach, take for example the original Rituximab recovery stories, those type of observations even if things didn't plan out, are always entirely different.
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