Simon Lawrence, Chairperson Rapid Responses to:
High court rejects challenge to NICE guidelines on chronic fatigue syndrome BMJ 2009; 338: b1110
"25% ME Group Response to the ruling concerning the NICE Judicial Review into ME/CFS Guidelines.
This is certainly a very sad day for everyone with neurological ME. A disease that devastates the lives of sufferers and their carers, a disease that not only strips sufferers of their livelihoods, but that often leaves them totally reliant on carers for their everyday needs.
I am also extremely worried where this will lead in relation to the so called treatment therapies of Cognitive Behavioural Therapy and Graded Exercise Therapy. These treatment s in many cases have caused wide spread problems for ME sufferers.
Our Report from 2004 (http://www.25megroup.org/Group%20Leaflets/Group%20reports/March%202004%20Severe%20ME%20Analysis%20Report.doc see last page) reported serious flaws in the therapies and also the fact that many were not helped and a great deal more were harmed by undertaking these programs.
Many of these sufferers were not even severely affected patients before undertaking the therapies!
We have previously quoted that these therapies are flawed when the NICE Guidelines were released:
"Patient experience of this serious neurological illness, which affects up to 240,000 people in the UK has been all but ignored in favour of a psychological approach. The illness affects many body systems and their functions, and an estimated 60,000 develop M.E. so severely they become bed or house bound, with others needing to be tube fed”.
We stand firmly behind this today, especially in light of this court ruling."
1 comment:
(1) Is there a free Internet Accessible copy of Mr Justice Simon's ruling? I really object strongly to having to pay the BMJ just to see their comments so I can respond on their site.
(2) I read through the ME Group case in detail before the review, and the ruling was as I expected. From my own limited work experience of such legal processes, I felt that it was never going to be successful. This legal process is concerned about coherent arguments supported by hard evidence as to why organisations are not working within laws, regulations and published rules. Either the ME Group chose weak council or chose not to listen in preparing its case. There was far too much emotion and 'sense of injustice', and an almost total lack of what was needed. I also felt that a major mistake was to focus on ME as a special case separate from mere CFS, and in doing so any arguments were centred on a weak moral case. Yes, CFS is a label used to describe a set of symptoms which share broadly common characteristics yet a heterogeneous aetiology. Yes, ME — that is CFS classes where the major systemic failure and symptoms relate to the central nervous system and brain — is extremely distressing (I know I suffered from classic ME symptoms for a couple of years over 20 years ago), but so can be acute disability due to muscle and mitochondrial dysfunction, as well as the other forms of CFS. Comparative arguments like this are always weak ones.
The central argument should be been based on hard research evidence that CFS covers a range of illnesses; that by NICE's own evidence CBT / GET is only moderately effective in some 40% of cases (I know that we all think this is crap, but it's not a winning argument). The key point should have been that by limiting treatments to CBT / GET options, then the NHS is denying effective diagnosis and treatment options to 60% of such sufferers.
BTW the reason that I didn't post this at the time was that I was going through a bad month myself when my brain wasn't working too well. It's a lot better now. Pity about my body!
Post a Comment