Modified link for Prof White's slides is:
https://www.dropbox.com/sc/6a9m7wgz2soewah/APe2fH_ATM
A few extra points from the seminar. Unfortunately my voice recorder let me down and it was difficult taking notes but these points may be of interest.
He started by saying 'Bristol saved the PACE Trial' so as a Bristolian perhaps I should do a NIck Clegg and say 'sorry'. He was looking at Dr Esther Crawley, who chaired the talk, at the time and I think he was referring to 60 patients that Bristol (presumably from the Frenchay CFS/ME clinic) provided that took the total over the required number. He also referred to the support of a national ME charity.
He said that the illness does exist and is not depression and may be heterogeneous.
He talked about people being 'half-way better' after CBT and GET. This was in reference to the CBT and GET success cases. But he also used the 'recovery' word a lot too and it seemed to me that 'half-way better' and 'recovered' were getting muddled up.
He said that people who did well with GET were no fitter at the end than they were at the start, which I found surprising.
He wondered why people improved by 20 points with the Gold Standard CBT on the Pace trial but those who had CBT in clinics only improved by 5 points and said that was something they had to look into.
He said that there was a raft of further data to come out of the trial, including data about the effect on the number of those in employment.
As well as my comment about the pedometer, I said to Prof White that the questionnaires which I had answered on an earlier Frenchay trial, were dire and that if you weren't depressed at the beginning of them you would be at the end. Prof White was much amused by that remark and seemed to concur that the questionnaires are a problem.
I was pleased to see the paper by Crawley et al about PROMs (questionnaires, or patient-reported outcome measures) a couple of days later which stated that "The appraisal method highlighted significant methodological and quality issues which must be addressed in future research."
Assessing severity of illness and outcomes of treatment in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): a systematic review of patient-reported outcome measures (PROMs)
http://www.prohealth.com/library/showarticle.cfm?libid=18853
I have to say Prof White is an impressive and persuasive speaker and in another situation I'm sure he would be found to be likeable! I'm grateful to <discussion forum> for alerting me to his charm! He did seem very concerned about the criticism he had had from the ME charities and one of the slides is a collection of quotes which some here might recognise.
I hope there's something amongst this that is of interest.
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Yes, that's fine with me if you think it's worth re-posting. I also meant to say that I don't think there was much in Prof White's talk that you wouldn't have heard or read before. Probably many times.
