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I wonder if Hilda has been invited for a beer yet. Or perhaps lunch.

Before I started following research more closely, I used to assume that this was the case. I used to assume that CBT (and various other therapies) probably helped some people, but that those people had a different illness to me. But the evidence from PACE changed my view because it tells us that...

Yes, I think this is important. One of the positives that I hope will come from PACE is that it may eventually help to improve standards in psychology and therapist based research. Drifting back on topic, a similar thought occurs to me with the Moustgaard meta-epidemiological study. There...

The BMC correspondence with Sharpe et al perhaps offers some insight into how their outcome measures might be validated: If the data matches pre-trial expectations then presumably they consider the outcome measure to be valid. If not, as with the definition of recovery, they “prefer” to change...

I’m completely puzzled by the Moustgaard study but I don’t have the capacity to read through it forensically at the moment. Instead I’ve been reading the BMJ editorials and have pasted some quotes and comments on them below. Drucker et al write: I don’t think dogma is an appropriate term to...

Imagine what it's like being very unwell and being talked at by them. Over and over again. The following quote by Jessica Bavinton, taken from this link that Esther provides above, perhaps gives some insight into the type of Kafkaesque nightmare that patients have to endure: "We shouldn't...

Very interesting. Thanks, Michiel. Are you thinking of publishing something based on this research? What jumps out at me is how many studies there are out there with such obviously poor methodology. (I noticed the same thing when I looked up research on hypnosis for pain relief which I...

Thanks for your post Michiel. A really helpful start to the discussion. Yes, me too – even having read the responses from others. Quite. Just to emphasise this point: if 25% of cases are severe, then this would mean that at least 80% of severe cases (20/25) were undiagnosed, and probably much...

This is really great: Many thanks to everyone who has helped to get it to this stage. Just one note of cation: Despite the success in getting so many people to sign up in such a short time frame, my suspicion is that there may be a ceiling of around 10–15 thousand volunteers that could be...

Unusually, I’m not sure I agree with you on this, John. I agree that a placebo would be legitimate if it could help someone feel less pain, but I’m not aware of any reliable evidence than it can. We know that placebos can be very effective at making people report that they are feeling less...

Yes, I noticed this. Helping patients to mange symptoms is a long way from helping patients to reverse their illness by their own efforts as described in his CBT model of CFS. Notwithstanding the inconsistencies in what he says, or implies, to different audiences, there does appear to have been...

I’m pleased I’m not the only person who found this confusing. I contacted the Biobank about it when I was filling in the questionnaire one time. I can’t find the answer but one of the team (who are always exceedingly helpful) replied to say that it was used for comparing participants’ symptoms...

Does it? This isn’t something I know very much about. I’ve always guessed that CBT is mostly bull***t and that any real benefits for people with mental health problems are probably due to being given sensible advice about lifestyle management (not applicable to ME/CFS-type CBT) and spending time...

I guess there may be but presumably there will be concerns about the reliability of current diagnoses too – or rather, the reliability of the answers to questions which are used to determine whether or not someone fulfils the diagnostic criteria. I assume that answering questions about historic...

From the FAQs: I don’t understand why people who have recovered aren’t being included. Understanding why some people seem to recover and others do not is hugely important. Presumably, it could be that some people have genes which increase the probability of recovery, or it could be that the...

I am a participant with the ME Biobank and I am intending to volunteer to participate in the GWAS study. I am happy for my anonymised data to be used by other researchers for any ethically approved research – even if that means that my anonymised data will be shared with researchers I do not...

I’m not particularly knowledgeable about all the different questionnaires, but I have filled in quite a few over the years. One thing I would like to see included, whichever questionnaires are used, is the opportunity for participants to add, as succinctly as possible, any significant symptoms...

I fully understand these sentiments, and I share your anger at the SMC’s treatment of ME/CFS. But I still think it is an issue which needs to be discussed, and a decision which needs to be made one way or another. The fact is that if Chris Ponting et al give a press conference at the SMC, it...

I’ve said this before, but I think we may need national media coverage in order to get enough participants. @Andy, or anyone else, do you know if the Science Media Centre has been approached to enquire whether it would be willing to facilitate a press conference with Chris Ponting and others who...

I’ve written to Dr Deborah Cohen who did the investigation for Newsnight to ask if she is aware of the PACE trial and related issues with the NICE Guideline etc.