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Beautifully done! Please add my name to the list. Graham McPhee: ME patient, active in challenging poor quality studies on ME. Of course, if you don't like that description you could just add "vexatious"!

Thanks for your good wishes, but it's just a temporary phase while I'm cutting back on the steroids. Once I return to my usual dose I'll be back to my usual irritating self. That's more than many of you can hope for, so sympathies should be with you.

As I understand it, (mind goes blank while searching for a name that I should know) the researcher, my age, with a son severely affected, has filtered the blood serum/plasma and found that it is a large molecule that is doing the signalling. I would interpret it as "signalling" rather than being...

I've got very behind with these threads, but the reason may be of interest here. I went down with ME in 1999, but in 2005 went down with polymyalgic rheumatica: (PMR) the treatment for that is steroids. On 25mg for a few days, my comfortable performance level went up from what I describe as ME...

Which is why correcting just the sf-36 recovery target has such a big effect.

A real one. I'd like to compare something that genuinely uses a number of criteria to measure success. You might be interested to hear that I have been looking at the GET group, and eliminated all those patients without the full "recovery" criteria. That left 134 patients. The doctors diagnosed...

Does anyone have any suggestions of a totally different "medical" study where three or four criteria were used to determine recovery, or some similar concept?

Thank you, but you do realize that after a year of being in my class your brain would have been warped forever.

Don't forget that they actually loosened all four sieves. It might be that they found that all four of them were too restrictive. I think I would like to play around with the data and compare the severity of each sieve with each other, and with the original settings. But the important argument...

I always reckon I'm lucky to get the first letter right. Please accept my apologies Annie, and my congratulations to Alice. (and no, it isn't the ME: I was this bad when I was teaching!) All four criteria had to be satisfied. In set theory we would call this the intersection of the four...

Very impressive video, Andy. Succinct and precise.

The line about recovery having multiple dimensions has a certain lack of logic to it. The point is that all four criteria have to be matched. If we just correct one of those criteria, the sf-36, and use a more appropriate target, the recovery figure drops dramatically down from 22% (I haven't...

I'm late to the party again, and I'll probably be going home early to bed. Wet blanket, that's me. But to me the article just underlines the deeply ingrained prejudice and uncritical thinking that goes on in this world. I've posted a comment that is very specific to my habit: I had to release...

From what I can see over here in the UK, specialists do not use any specific criteria (or if they do, they don't say so), but simply tell a patient that they have ME/CFS. If the probability was 1 in 1000, and you sampled 14000, there's only a 10% chance of getting more than 18 instead of the 14...

Agreed. I think I was looking at it more from the kind of reaction we would get if we did it. If we could get someone more detached from the debate to carry out those interviews, they would carry more clout. If I did it, it would sink without trace.

It amazes me that clinics don't seem to think enough about this problem. As far as a "follow-up" is concerned, the problem is that there are lots of accounts from all sorts of people about their experiences, and it would be easy enough to collect more. But any collection is not going to be...

The MRC did set up a committee in response to the 2002 Chief Medical Officer report, re-formed it and re-named it after the Gibson Report of 2006 (under Holgate), and it was re-formed and re-named again under Holgate as the CMRC. So in various guises, it has run since 2002. The total spent by...

Effectively, the only time the MRC has funded biomedical research was then (and it funded one follow-up study), and that was in response to an Early Day Motion signed by 123 MPs. In other words, the MRC has only responded to political pressure, never to patient pressure.

I first started reading research articles on ME/CFS back in 2009 or so, and one of the first ones I came across was a series of similar experiments with rats being forced to swim. I look forward to the next logical steps, forcing fish to walk, elephants to fly, and CFS psychiatrists to think.

The problem is that I'm not an academic: I'm an ex-maths teacher. So when I read through these booklets, their overall tone and style have as much impact on me as the actual wording. It's like working with people: it's not what they say, but how they react/behave and the tone they use that is as...