Nick Clegg is critical of the NICE Guidelines and wants an independent scientific committee to oversee research into ME/CFS in this country.
What fabulous words from a politician:
“Whilst I welcome the fact that NICE conducted an investigation into ME/CFS, I do understand and empathise with the concerns raised about the findings. The recommendation that patients with ME/CFS be treated using an ‘Activity Management Programme’ made up of Cognitive Behavioural Therapy and Graded Exercise Therapy does not follow the World Health Organisation guidelines which categorise ME as a neurological condition. In failing to recognise the bio-medical problems of ME sufferers, the NICE guidelines also fail to recognise the needs of ME sufferers.
To help address the unique challenges posed by a complex and poorly defined condition like ME, the Liberal Democrats believe in the establishment of an independent scientific committee to oversee all aspects of ME research. We would also like to see the government and the Medical Research Council work with ME sufferers and biomedical researchers in order to achieve a proper understanding of the condition, challenge unjust perceptions and consider the issue of research funding.” Read Nick Clegg’s full responseThank you Nick Clegg! I could jump with joy and hug you – if I wasn’t so exhausted 😉
What a difference to the response I got from my local Conservative MP last year when I asked for his support.
Admittedly I covered a lot of ground in my letter but I did ask him to read the report of, and lend his support to the findings of, the Parliamentary Inquiry into Myalgic Encephalomyelitis (ME) which was chaired by Dr. Ian Gibson. Also to support bio-medical research into the condition (the Gibson Report found an inbalance towards psychosocial research funded for this condition by the Medical Research Council).
He forwarded my letter to a minister in the Department of Health and passed the buck entirely:
“I have now received a reply to my letter from the Department of Health regarding Myalgic Encephalomelitis/Chronic Fatigue Synrdrome.I am enclosing the Minister’s reply, which, as you will see, sets out the current situation with regard to this issue and comments on the points you raised.The website address, on which further information can be found, is also given in the letter.I think I should have another go at educating my MP and enlisting his support. Best keep my letter short and simple next time I think.
My thanks, again, for having written on this very important issue.”
Ummm … and your position my elected representative? Hmmm.
Activism is a sometimes bit too active for me and ME.
UPDATED: Nick Clegg’s letter was a response to a letter writing campaign from ME Association members