Research suggestions and ideas Actimetry and wearables The key clinical problem in ME/CFS is exertion intolerance. I think we need to be able to...
Funding and NIH organisation Break the cycle The most urgent ME/CFS research need is for funding. There is currently a futile cycle of “there is...
I'm surprised there were so many comments! There are a lot of good ones but also some weird ones (about stealth adapted virus, testosterone...
I've read the hearing, but it's not all clear what was so disgraceful, except perhaps for charging a patient $825 for making a chart. It mostly...
For a decade, Francis Collins has shielded NIH—while making waves of his own - Science Magazine 15 August Full article at:...
"It’s too easy for bad actors to exploit the process and mislead the public"...
It gets even weirder. Apparently, DanFunD does have a lot of information about its participants. You can read about it here:...
Yes, they say that other studies have reported higher prevalence estimates than their study, but that doesn't seem right for CFS. Reference 15 is...
They also report in the paper that "A subgroup analysis was made excluding participants who reported suffering from chronic physical disease which...
There is supplementary material where they explain how CFS was defined. See: https://journals.sagepub.com/doi/suppl/10.1177/1403494819868592 They...
If I understood correctly it's not about exposure to herpesviruses cause these are ubiquitous and IgG did not differ between patients and...
Am I reading this correctly? 8,6% of the population sample said they had fatigue symptoms more than usual compared to last month, and the authors...
Wow, this is more than 20 x times of what credible epidemiological studies have found. And they don't even explain how far off their definition is...
It might have been somewhat unfortunate to advise others how much activity they should do, based on merely personal experience. Especially if you...
Yes, I realize that. But I believe that if it was common practice to involve patients in research design and research priorities things would have...
Yes that would be a more adequate description of what I've meant, thanks. Although now that you've raised the issue, I think that many...
I have submitted a short response to this blog. I'm posting and storing it here because I have a bad feeling that it will not appear: "As a...
To maintain efficiency in medical research we have to facilitate and empower participants, patients, and the public to recognise waste and take...
I'm confident that GET/CBT proponents believe that these treatments work. I see no reason to think otherwise.
I think the ME Association once suggested to use the term Myalgic Encephalomyelopathy instead of Myalgic Encephalomyelitis because the evidence...
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