Well-written responses summarising all the key bullet points in short, simple, non-technical language, with detail left to the references, are going to be sorely needed. The study IS an opportunity to expose the manipulation and spin, even though the problem remains that the control of the media removes our ability to put the information in front of the general public.
But we are all too close to it. We always tend to fail to effectively summarise the truth of the matter in language that ordinary people can easily understand. This is not our fault. We have to dive into a maze of complexity and clever techniques of deception in order to work out how they pulled off each trick. To then untangle that deception and lay it bare in ways that everyone can understand is a horribly difficult task even for healthy people. But I think that achieving this is a big part of the way out of the maze we're trapped in.
Top of my head, bullet points, needing fleshing out by those with better understanding of all the technicalities...
Who were they studying? Not us!
1. The patients for this study were recruited from "CFS specialist treatment centres" which are shunned by most ME/CFS patients, and the study itself confirms just how ineffective those treatment centres are - even less effective than CBT and GET.
2. Of 3000 patients referred to the study by those treatment centres, around 75% were rejected because they were found to be sick - with other medical conditions, and with the immune and neurological symptoms that characterise the real disease. Yet those patients were diagnosed with ME/CFS and were being treated as such at the treatment centres - so the study's results themselves only apply to at most 25% of those diagnosed with ME/CFS in the UK.
3. The study's authors used their own definition of CFS, which explcitly excludes patients with the symptoms of ME/CFS, and broadens the definition so as to include many patients suffering from depression.
The study redefined success after it failed miserably to meet its original goals.
4. The authors moved the goalposts throughout the study, removing from the study the only objective physical measurements of the patients' activity levels after originally stating that such measurements would be used, and redefining 'success', 'effectiveness' and 'recovery' to fit the results they obtained.
5. The study claimed to compare 'pacing' with CBT and GET, but again the study redefined 'pacing' to mean something completely different - the study's "APT" is NOT the same as what advocates of pacing understand by the term - and the authors then used the failure of their redefined version to suggest that 'pacing' doesn't work.
The benefits reported for CBT and GET were tiny and probably represent 'wishful thinking'
6. Despite all these manipulations, none of the combinations of talk and exercise therapies studied delivered more than a 9% (?) improvement after 2(?) years of therapy, as reported by the patients. The study itself described this achievement as 'moderately effective', and accepted that the therapies did not deliver a cure.
7. Even the very small improvements claimed by the study are questionable. These assessments were measured only using questionnaires completed by the participants, and previous comparable evidence indicates that patients in this situation are more likely to say their activity levels have increased even though the objective physical measures show that the therapy had not actually increased those activity levels.
I'm sure there are a few more headlines I've missed - and lots more work ahead of us all, I'm afraid - but what I mostly want to emphasise is the need for short, bullet-point statements of the key points, in non-technical language, but with references and with rigorous accuracy and fairness. The above is just a short first draft of the points that need to be covered.
There's no need to exaggerate, attempt to score points, rant about how outrageous it is, or present the truth in the most favourable light. The facts speak for themselves. All we need to do is lay those facts out in an easily-digestible form for people who don't have the necessary medical or scientific training, with the full technical detail available for those who want to follow it up.
And then we need to figure out how on earth to get the truth in front of people, in this brave new world where the press listens only to Wessely and his mates. We could and should try to get a British newspaper to write a news story...but I'll believe that's possible only when I see it happen...
