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I think what I am trying to say is that if I sat in front of the committee, I would start by saying that the Oxford criteria is very different from the criteria on the NICE guidelines: in fact it has very little in common with any of the sets of criteria for ME/CFS which mostly demand PEM. For...

Agreed: that's why we need a say on the selection of members.

Personally, I think we have to refine and restrict our approach. I'm fully in favour of published studies/analyses showing up all the faults in PACE, but when we are presenting an argument to NICE, I think we have to keep it simple. There's little point in trying to convince the psychs, so we...

I put out an appeal on Facebook with a picture of my dog, George. Let's see if that boosts it at all.

This is side-stepping the issue a bit, but to be honest the rot started with the introduction of the National Curriculum. Suddenly instead of just having targets (GCSEs, A-level etc.), every step of the way was specified, and it was a knowledge/skill based syllabus. I could ignore it to an...

When I was teaching, I would regularly put up some sort of claim as a poster in the classroom, then wait for the squeals of protest. "9 out of 10 people here say that Maths is the best subject." At first they would claim that I was making it up etc., but after a little while they would start...

The only thing I would want to add to this is that it would be wrong if the government took it over and then started to increase the expectations placed on these kids. The truth is that qualifications can be picked up later: education is a state of mind, not a bum on a seat in a school. Schools...

FINE was for those unable to get to an ME centre, which also included those who were not severe but who did not have a local ME centre, or were unable to travel. Our "local" centre, for example, would be OK for someone with moderate symptoms to get to if someone drove them there, but even a...

They did, and I thought that they meant what they implied, but then, after the PACE data was released, when they reassessed the improvement figures and found that they were much, much less, they remarked that the result was still the same (i.e. that CBT did better than no CBT). That made me...

Looking at Figure 1 on the original PACE paper, after the first set of exclusions were carried out, it left 1460 patients. It seems as though 533 of those failed the consent part (mostly the patients refused, but 46 were on doctors' advice). We don't know why, but it's a substantial proportion...

It isn't at all clear whether they had other conditions that had not been spotted (such as sleep apnoea), which could account for up to half of the patients screened, or whether their fatigue was not the major symptom. Their description of the Oxford criteria requires "fatigue to be the main...

They used the London criteria for ME, which is only used, as far as I can see, by some UK researchers. They found that half of those who qualified under the Oxford criteria satisfied the London criteria, so as a glib measure (assuming London defines ME) around half the folk satisfying Oxford...

A thousand in day one. Then two days for the next thousand. Is it going to be three days for the next thousand, or four?

Sorry! What I was meaning was that starting to understand ME, realizing that the scary symptoms are normal, avoiding boom and bust, pain control, sleep advice are really the things that need to get sorted at the start. They can happen with a good support group and with a GP that tries to help...

But there is evidence from PACE that certain treatments worked, and produced improvements not only in subjective but also in some of the objective assessments - seeing the specialist, getting a clear diagnosis, understanding boom and bust, getting treatment for pain relief, help with sleep. The...

The truth is though that we have no need to criticize the Oxford criteria. The small trials "supporting" CBT prior to 2007 used Oxford, and were only able to produce subjective improvements: all objective data said it was useless. PACE was set up to be definitive and, to its credit, definitely...

I think there is a cross-communication error here, and will stick my neck out to suggest how. I think Jonathan is entirely right with his comments about scientific validity. If I carry out a study on the performance of students in mathematics in state schools in the UK, that could well be a...

Not far to go now to the 250,000 who have been "diagnosed" with various labels, but who end up in the same bucket. Has it been plugged on Twitter yet? I can't Twit, so have no idea.

Interesting! The PACE trial was heavily criticized for claiming an effect when, in truth, they proved that CBT was ineffective. The use of the Oxford criteria was irrelevant there because PACE showed that for both the "London ME" and the "depressed" patients, neither CBT nor GET produced any...

Just to be clear, the letter, the petition and even the rhyme were a team effort: the team included @JohnTheJack . But you can blame the video on me, although most of the facts have been culled from others' findings. Me, a parasite? No, I'm not even fit enough to be a monosite.