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."