...is to keep on doing the same thing in the hope that just once you'll get a different outcome. That seems to be the approach of the UK medical world to CFS/ME. I've yet to read a credible explanation of the standard treatment of CFS/ME in the UK. I have read some interesting new stuff from the USA, Canada, Japan and Australia about diagnosis and treatment suggesting there may be a pharmaceutical cure in the offing, but we don't talk about that here. In the UK, there is only one approach to this condition. And it comes around time after time.
Professor Esther Crawley is getting a shedload of funding to investigate:
<<intensive online therapy sessions to adjust sleeping habits and activity levels>>
That's a quote from a BBC report: http://www.bbc.co.uk/news/health-37822068
Apart from the fact that the BBC report is very badly written, there are a few issues not dealt with:
1 This is not a new treatment. It's called cognitive behaviour therapy and it's been on offer - instead of proper treatment, in my opinion - for a long time. It treats CFS/ME as a mental illness and totally disregards the physical elements of the condition. It will probably suggest 'graded exercise' as a cure for CFS/ME. And maybe some sort of sleep therapy, though I have to say sleep is not really a big problem. Staying awake is. And being active is a whole nother ballgame.
2 What marks this investigation out is that this time it's aimed at children and young people. I'm not sure what proportion of CFS/ME sufferers come into this category. In addition, children and young people have desperate parents and guardians behind them who will do anything to try to get a 'cure' for their kids. They're unlikely to argue or refuse a doctor's diagnosis or a recommendation of CBT. They see their kid's future melting away so yes, they'll cooperate with the professor's team.
3 I haven't seen the funding submission put together by Prof Crawley's team, but I would like to know in what way the project can be assessed as 'research': there will be 734 young people involved. How were they selected for the project? Were they self-referred? Referred by a GP? Or a parent? Or a consultant? How did the team work out the suitability of these young people for the 'research'? What will be the criteria for assessing the success of the treatment? Will success be objectively assessed or will it be done by self-assessment? Will the treatment and the findings of the research be peer-assessed - that is, will researchers from other places get the chance to see what work was done, how it was done and what the results were?
4 I see a reference in the BBC report to 'activists' - that is, people - adult people - who've been round the CFS/ME circuit a few times and may have failed to find a GP or consultant who knew what we were talking about. Apparently, we're likely to be unsympathetic to this research. Is there a plan to involve people like us at any stage? Or can we look forward to another 6 years (the professor's report won't be out till 2022, for heaven's sake) of being spoken to as if we were, well, children.
5 The last lot of research into CFS/ME in the UK has now been widely questioned and in a couple of cases discredited. It too was based on the treatment described above.
So I'm going to file this project under: yet another waste of money. You may think the USA is under the control of 'big pharma' but I think the UK is in thrall to 'big medica.' Meanwhile, I have friends who are into their 20th year of CFS/ME with no hope of improvement.
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