The ME Association has responded to a news story that appeared in the British Medical Journal about the outcome of the legal challenge to the NICE Guideline on ME/CFS. Our response – published in the journal's online ‘rapid responses' – appears below.
‘NICE does not listen to patients ‘
Dr Charles B Shepherd,
Hon Medical Adviser ME Association
7 Apollo Office Court, Radclive Road
Gawcott Bucks MK18 4DF
Clare Dyer states that ‘NHS patients with chronic fatigue syndrome should be treated with cognitive behaviour therapy (CBT) and graded exercise therapy (GET)' following the failure of the legal challenge to the NICE guideline on ME/CFS.
Despite the High Court ruling, The ME Association believes that NICE has not (in their own words) produced ‘gold standard for best practice' advice. And unlike NICE, who state in their press release that the ruling is ‘very good news for the thousands of people with ME/CFS', we have sought the views of patients on the guideline as well as conducting an on-line poll during December 2008 where 91% (n = 835) supported our opposition to the NICE guideline.
The over-emphasis and inflexibility relating to CBT and GET in the NICE guideline is both flawed and unjustified for the following reasons:
1 Evidence from randomised controlled trials (RCTs) for medical effectiveness is not consistent and fails to acknowledge the heterogeneity of the clinical presentations that come under the ME/ CFS umbrella.
2 Patient evidence is ignored – in a paper and on-line ME Association survey involving over 4,000 people, 74% (n = 997) found CBT to be either ineffective or harmful and 78% (n = 906) found GET to be ineffective of harmful.
3 Evidence for long term benefits in patients who have been involved in RCTs remains either weak or non- existent.
4 Evidence for cost effectiveness is unsatisfactory in relation to CBT and non existent for GET.
It is not therefore surprising to find that people with ME/CFS desperately want a flexible approach to management that recognises a variety of sub-groups based on clinical presentation, degree of severity, and underlying cause. They also want a guideline that properly addresses symptomatic relief and one which will not now be perceived by insurance companies as indicating that ME/CFS is a psychological illness for the purpose of turning down benefit claims. (read more)
Dr Charles Shepherd
Hon Medical Adviser, ME Association
Competing interests: Personal experience of harmful management advice.