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It's high time these people were stopped from playing silly psychological games with sick people, and, worse, drawing unwarranted conclusions from them. It's harmful, insulting and not good science.

It's a statement of fact, as far as I can see. The article mentions that Dr Tam is running workshops at her clinic with Raymond Perrin to teach the Perrin Technique. Perrin is a UK osteopath, not a doctor, who developed a sort of massage technique that he claims treats ME/CFS. We have a thread...

I think the section quoted makes the project sound much broader than it is. What they seem to be aiming for is a set of PROMS, ie questionnaires that can be turned into numbers. And claiming these will provide useful information for helping clinicians assess each patient, and for service...

The subject of why the MEA is paying for this project has been raised on another thread. I have been looking at what the MEA said: These are the relevant bit of the NICE guideline NICE guideline...

The biggest and most long lasting outbreak is Long Covid. I'm still hoping something might be found from all the research that might help shed light for the rest of us too.

It worries me that spokespeople from MEAction and Solve are promoting the Remission Biome version of patient led research. It's nothing more than yet another social media generated protocol with no scientific basis, in this case with added bells and whistles like crowdfunding and massive hype...

I listened to it too. Basically most of the commercial companies providing poo testing are no good at it, and the advice they give you about diet is not evidence based. It's largely a scam.

Is it just me that finds the name PROfeel creepy?

I think it's possible that for many pwME who do a 2 day CPET they are heading into PEM by the time they do the second CPET, which, if they were able to rest might not be full blown PEM, but the cumulative effect of the two exercise challenges only 1 day apart then sends them into full PEM...

Posts about a talk about ME/CFS at an FND conference run by King's Health Partners have been moved to: United Kingdom: Kings College London; South London and Maudsley NHS Trust

I honestly don't see the value in 'doing the stats' on this sort of qualitative subjective data. This whole field of developing measurement tools for conditions with multiple symptoms and functional limitations makes no sense to me. The only usefulness I can see for the questionnaire is as a...

Does it say who gave that talk? It's appalling this is still going on.

Given that some people still believe the earth is flat, you're probably right.

Good riddance! This major cut in funding for Cochrane was the reason for the big reorganisation of Cochrane over the last few years, and the main excuse we were given for work stopping on the new Exercise for ME/CFS review. I think having announced the new review process as a priority and...

I'll send you a private message.

I'll start a members only thread. Thread here

I share your concern, @bobbler, and am sorry such behaviour has been inflicted on our members and is causing so much justified upset. The whole project is very worrying, not just a single action of an individual. Some of us on the forum committee are working on a letter. We have not been...

Thanks for doing this, it looks like a useful analysis. Did Hanson's team do a comparison of this sort too? Is there data for after exercise that can be analysed in the same way? And is there any data for people not on any medication that might produce false positive results, and what male and...

Another factor I experience in addition to those mentioned is that I have less demand on me to make quick decisions and need to act on them quickly than when I was well and had a busy work and social life. There simply wasn't the head space to congitate repeatedly about any one decision, I just...

I notice they list chronic fatigue, but not ME/CFS. There's a big danger of misuse to including ME/CFS in this rubbish which seems to be all about fobbing people with unexplained symptoms off with advice to ignore symptoms.