In a letter to a constituent who lives in Sheffield, Liberal Democrat leader Nick Clegg MP criticises the NICE guidelines on ME/CFS and calls for the setting up of an independent scientific committee to oversee all ME research.
The recently elected party leader (pictured) shows he is in listening mode – following The ME Association’s recent campaign asking members to write to their MPs backing calls for an adjournment debate on ME/CFS in the House of Commons.
The call for an independent scientific committee echoes one of the recommendations made in November 2006 by the all-party Group for Scientific Research into ME, which under Ian Gibson MP conducted a lengthy inquiry into the state of ME research in the UK.
Although John Bercow MP missed out in the ballot for an adjournment debate in November, The ME Association understands that he will try again soon.
In the letter, Mr Clegg wrote:
Dear Mr xxxxxx
Thank you for your correspondence regarding some of the problems that are currently causing concerns for people with ME/CFS including inadequate research and the recent NICE guidelines on the subject.
Unfortunately, a ballot to secure an adjournment debate on these issues, scheduled for the week commencing November 19, was unsuccessful.
As I’m sure you are aware, one of the main obstacles to the adequate treatment of ME is the lack of knowledge and consensus about the disease. There are many theories as to the causes of the disease but no conclusive proof to fully support any of them. This is why it is vital that more research is done into the causes and progression of this difficult to diagnose condition.
What is not in doubt is the very real physical and psychological damage caused by this disease. The Liberal Democrats have long argued that funding and research must be focused on the ‘bio-medical’ factors involved and not just simply managing the ‘psychological’ issues.
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.
Whilst we welcome the establishing of local centres to focus on ME, we feel the NHS is still too centralised and too unresponsive to the needs of patients and families. We believe the special needs of those suffering conditions like ME can be better addressed by empowering patients and making the NHS more accountable at local level.
Thank you again for taking the time to contact me about this issue.
Nick Clegg MP