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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 measure that objectively. I think there is an analogy with the inability to move rapidly and smoothly in Parkinsonism. The neurologists have made...

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 not enough quality research, so there cannot be more funding allotted to it,”and so no more quality research is done due to lack of funding. 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 replacement therapy, the zoonotic nematode Varestrongylus klapowi (Vk), natural, homeoparhic treatment, The Wahls Protocol, Chinese acupuncturists etc.). I...

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 seems a collection of small unprofessional mistakes he made and the fact that he was practising medicine at a level that was beyond his qualifications...

For a decade, Francis Collins has shielded NIH—while making waves of his own - Science Magazine 15 August Full article at: https://www.sciencemag.org/news/2019/08/decade-francis-collins-has-shielded-nih-while-making-waves-his-own

https://www.washingtonpost.com/outlook/why-we-shouldnt-take-peer-review-as-the-gold-standard/2019/08/01/fd90749a-b229-11e9-8949-5f36ff92706e_story.html

It gets even weirder. Apparently, DanFunD does have a lot of information about its participants. You can read about it here: https://pdfs.semanticscholar.org/7ef4/45acf4632397a8f1e13b4c81f5b4eaf33d75.pdf?_ga=2.46547111.1480774417.1566033579-2114742670.1563967729 Each participant had a clinical...

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 about unexplained chronic fatigue, which the authors acknowledge is different from CFS: "It is worth noting that chronic fatigue is much more common...

They also report in the paper that "A subgroup analysis was made excluding participants who reported suffering from chronic physical disease which could possibly account for their symptom patterns." They reported this in the supplementary material, in Tables S10–S14 and Figures S2–S3. I suspect...

There is supplementary material where they explain how CFS was defined. See: https://journals.sagepub.com/doi/suppl/10.1177/1403494819868592 They only used the Chalder Fatigue Questionnaire as expected but with one difference: they asked about fatigue symptoms in the last 12 months. The CFQ...

If I understood correctly it's not about exposure to herpesviruses cause these are ubiquitous and IgG did not differ between patients and controls. If these viruses do play a role in ME/CFS, as some EBV-studies suggest, it is probably because the immune system of some ME/CFS patients respond...

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 labelled them as CFS patients?

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 from diagnostic criteria: Euh... no

It might have been somewhat unfortunate to advise others how much activity they should do, based on merely personal experience. Especially if you have a prominent position in a large patient organisation. That said, I think it's important that people are able to speak openly about the idea that...

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 gone quite differently in ME/CFS. I suspect the focus would be on rigorous testing of the safety and efficacy of GET/CBT rather than comparing GET...

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 'objective' outcomes are simply less prone but not immune to these biases. If patients get the feeling that they are receiving the intervention/control they...

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 patient who follows research into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) closely, I can only agree with the recommendations of...

https://blogs.bmj.com/bmj/2019/08/09/virginia-minogue-and-bill-wells-patients-and-the-public-are-essential-to-reducing-research-waste/?utm_source=twitter&utm_medium=hootsuite&utm_term=&utm_content=SME&utm_campaign=editors

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 for inflammation is uncertain. They helped fund this study, so I'm guessing that Opathy Association refers to them.