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Recovery percentages weren't presented for the study. However, the people with better baseline scores did a lot worse. It's quite possible nobody recovered. Improving a bit is not recovery.

I think most people with ME or CFS would need more encouragement to pace and do less on some days rather than encouragement to keep pushing themselves.

Not particularly exciting but just shows that lots of people would be motivated to try to use exercise to help themselves. If all that was required to recover was exercise, a cheap or free therapy, large numbers of people would have recovered. While some psychological therapies might have some...

UK charities and US nonprofits

Unfortunately, there seems to be no way now to do targeted Facebook ads for people with an interest in ME or CFS. My contact no longer wants me to do untargeted ads just aimed at people in an area if it only relates to ME or CFS. So I can only use the ads when they want healthy controls or...

Solve have done a number of plugs on Facebook and Twitter for one study that is recruiting in the last month or two.

Yes. I wasn’t complaining about people not taking part. I was pointing out that highlighting research studies that are recruiting is a practical, no cost thing more people could be doing. The study mentioned in this thread is just one of many I have seen with slow recruitment.

Also, it could put researchers off staying in the field if they think it will be too challenging to get subjects for studies. Few ME/CFS researchers seem to pay for ads for recruiting, even though the cost might be tiny relative to the total cost of a study. I have access to a Facebook...

I hope they reached the recruitment target. They seemed to be slow doing so. Personally I think people with ME/CFS should be promoting studies that are recruiting more. It doesn't cost any money. It doesn't look good to funders if the required recruitment can't be reached. And if the...

GETSET is one

It's a bit messy as Cochrane don't pay people to do such reviews generally as far as I know, people volunteer. Though perhaps there are precedents.

Paper was received by the journal in August, 2017

Yes, we are fed a constant diet of people saying exercising is good for you. If anything, I think patients need to be warned this might not be the case with ME/CFS. Except that the model is very likely flawed. People's symptoms vary and how much they can do before provoking symptoms can vary...

I wonder whether people really suggested they needed CBT or whether this is spin? The mental activity point is a good one, and is generally ignored by graded activity approaches for ME/CFS where you are encouraged to do the same amount and then increase but there is no suggestion you should...

It would be interesting to note the breakdown between the two categories. I have written to thousands of people who have enquired to an ME/CFS patient organisation, i.e. months or sometimes years after they first enquired. People sometimes get in touch to say they were re-diagnosed with...

Doesn't sound like the participants would have been able to give informed consent.

It seems plausible that someone like this who was so grateful to the physiotherapist might give biased responses about how much the therapy was helping. *But was it really working? Open-label trials aren't necessarily reliable, especially with subjective outcome measures.

This file was too big to upload: https://www.dropbox.com/s/w7v5nzhm8m3j4is/CFSMEConsultationAppendix10906.pdf?dl=0