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They even have Larun in the references: Larun, L.; Malterud, K. Identity and coping experiences in Chronic Fatigue Syndrome: A synthesis of qualitative studies. Patient Educ. Couns. 2007, 69, 20–28. [Google Scholar] [CrossRef] For anyone who has the capacity, I wonder if this article merits a...

Academic Editors: Kenneth J. Friedman, Lucinda Bateman and Kenny Leo De Meirleir It just defies my understanding. It's like they've never met a person with ME. My experience is not reflected in this precious compilation. If ME was represented metaphorically by a human body this description...

I think I have mentioned this before. It is never ever an issue of just one study or even a group of studies. The problems mentioned above are systemic and are fatally injuring science in a way that will have horrifying repercussions that go beyond medicine. Why trust science at all if it...

Michael Clarke: His handiwork: https://www.ox.ac.uk/admissions/graduate/courses/msc-evidence-based-health-care This doesn't provide details which would be illuminating. My preliminary feeling on this is to put Cochrane well out of mind and concentrate on possible positive developments in the...

Just for historical background (there might be other relevant documents as well): https://www.virology.ws/2016/01/07/trial-by-error-continued-did-the-pace-trial-really-prove-that-graded-exercise-is-safe/ https://www.s4me.info/threads/updated-the-pace-trial-harm-video.14794/#post-255417...

A bit out of my league to comment but might Wil de Vega be someone to contact for finding a suitable partner? https://www.ficars.ca/news/meet-wil-de-vega Wil finished his Ph.D. at the University of Toronto in 2017, with a focus on epigenomic modifications in the Myalgic Encephalomyelitis /...

I think a point is that it's not about one patient's voice. While it's important to listen it may not be informative all on it's own. It's when you keep listening that you start to get some sort of new picture possibly. The idea that because this is one person n=1 story that it is meaningless...

Would it be at all useful if a brief template message was written and anyone who wants to use it can email it to their Member of Parliament to let them know that this is an issue that is important to them. It might make some MP's pay attention.

Well, as always it's never made clear exactly what the BPS cabal mean by anything -- as in it's always vague enough that the reader is led to infer things that are implied. IMO though I believe they are thinking from the idea that for example people get anxiety from things like speaking in...

The 'stress produces a biological state (inflammation)' is a really untenable position for Pariante to take. Does he mean all stress? Define stress. And if it's only some stress, which stress? Why? How can stress produce inflammation some of the time or in some people and not others? Is...

I'm jumping in here were I don't have the knowledge base but I want to make a remark I made once before. A while back I was reading (after googling) what NASA had to say about deconditioning after stays on the ISS. The information online from NASA was highly technical with a lot of data...

Let's check his whining more closely. When BPS believers talk about recovery there are a few things to consider. Recovery usually means back to health from before illness but that definition is unlikely to be the one meant. I'm sure there are others who can elaborate better than I can on...

I do think that an international effort would take considerable coordination and time. I also think that the results of the current GWAS would be well along and therefore having something ready to go would be most efficient. There have been small studies along many lines and nothing...

You might want, for clarity to specify who 'they' are in your last sentence. If you read it back you had just left off talking about CG & SW. But for myself, I think I take your point. And yes, we've all suffered enough.

I keep coming back to thinking about this thread. I don't know how much of an influence the JLA P2P will have in real or immediate terms but as an opportunity to express the POV's from the community I have distilled mine down to what I think are the two most important things to me. They are...

I'd be curious to know what the alternative diagnoses turned out to be.

Having trouble reading atm but tried to scan this thread for what I wanted to mention and didn't see it. I think it's important that in discussing what patients see as a priority in research the message that ANY research must have as part of it's protocol a component included that accounts for...

Sten Helmfrid is on twitter and might be able to help.

Is there anyone with access to this paper? I would like to know who funded it.