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I think it's worth going back to the initial article by the MEA describing this project: https://meassociation.org.uk/2023/05/me-association-funds-research-for-a-new-clinical-assessment-toolkit-in-nhs-me-cfs-specialist-services/ It is clear from this that the aim is not just to produce an...

Posts discussing the results and data availability of the PACE trial have been moved to A general thread on the PACE trial!

The journal seems to be a marketing vehicle for sports and fitness related products and companies masquerading as a scientific journal with all the trappings of peer review etc. I assumed the cartoon that calls itself a 'graph' was a spoof.

Can someone copy the rest of the twitter thread?

It is very good. Huge thanks to George Mionbiot. It's wonderful to have someone working in the media, like David Tuller also, recognising the bad science and harm we have suffered. I hope it will be widely read.

Several of us, including me have expained several times that it's nothing to do with us imposing our beliefs on the scientific community. It's about asking people doing what is supposed to be scientific research to do it properly according to well recognised scientific principles. Things like...

It was supposed to be about phenotyping. So how did Walitt get away with slipping in his hypothesis testing about effort preference? And further, how did he get away with using a task designed to test depressed people for anhedonia to test his hypotheses? Were the participants aware that's what...

I think the anti vaxxer parallel is actually quite insulting and the complete opposite of what is being suggested on this thread. Nobody is suggesting we are against the BPS paradigm on the basis of belief. The evidence that it's wrong for ME/CFS is clear even from the BPS proponents own...

That looks excellent, @ME/CFS Skeptic. I hope you will submit it to the journal.

DecodeME is a great example of a research team building in patient involvement from the start.

The point is about promoting ethical research. And for the specific case of ME/CFS, that surely means research not being approved by ethics committees and funded if the assumed paradigm of ME/CFS is psychosomatic, and all results of tests, biomedical and behavioural, are going to be...

I don't understand how this can distinguish between people remembering what they did before and doing the same again, and the reality of whether symptoms have stayed the same or not. So have I got this right. They start by asking a simple question about whether your symptoms have changed, then...

I have decided not to fill in the repeat questionnaire. I'm sure my decision will make no difference to the outcome, as they have so many participants, so for me it's just a personal decision that I don't want my data of my guesses how respond are consistent with last time's guesses, let alone...

I would like to see openness in ethics applications and in the information given to patients for informed consent that states clearly what hypotheses are being tested by any psychological or behavioral tasks, tests and questionnaires. For example patients should be told well before being asked...

I guess that depends on how long we're prepared to wait. For over 30 years we've been subjected to bad science, clearly deliberately designed to keep ME/CFS firmly in the category of psychosomatic conditions amenable to CBT and GET. A fiction that means those of us who don't recover can be...

It may be that, like Wessely, she has moved on to other things. ME/CFS is only one small part of her work as a pediatrician.

On that logic, clinical care for Long Covid could equally be put in the charge of specialists in dealing with loss of taste and smell, or POTS. To me the point is that if you put one specialism, especially one where the whole basis of their existence is on rehab therapy then that is what will...

When my ME was mild and I was still working my PEM was, as far as I remember, much the same as now with severe ME. It is mainly triggered by physical activity, usually a cumulative effect of doing too much for me over a day or several days. The main difference is that it takes far less...

Excellent letter. Good to see it's now open access.

New research funding announcement. See this thread: $720,000 grants to 2 La Trobe University researchers from the Mason Foundation for ME and long Covid research