MEA responds to editorial and review of the NICE guideline in the British Medical Journal
01 September 2007
The letter below has been submitted to rapid responses at the British Medical Journal in response to two items about the NICE guideline in the current (1 September 2007) issue. Abstracts of both items – an editorial and a review – along with other rapid responses are available to non subscribers on the BMJ website.
The MEA Board of Trustees met on Thursday 30 August. A detailed statement on our position on the NICE guideline is currently being drafted and will be published on the MEA website next week.
The MEA has organised a public meeting in Peterborough on the afternoon of Saturday 15 September at which Professor Richard Baker and officials from NICE will give a presentation on the guideline. Afterwards there will be an opportunity to ask questions. Seats are still available for anyone who would like to attend. More details on the MEA website http://www.meassociation.org.uk or in the July issue of ME Essential magazine.
Rapid Response submitted for publication to BMJ
NICE guideline on ME/CFS is unfit for purpose and too costly to implement The National Institute for Health and Clinical Excellence (NICE) recommends that everyone with mild or moderate ME/CFS (myalgic encephalopathy/chronic fatigue syndrome) should be offered a course of either cognitive behaviour therapy (CBT) or graded exercise therapy (GET).
This is despite published evidence remaining weak (especially for group CBT) and inconsistent . Patient evidence submitted to the Chief Medical Officer’s report concluded that CBT produced “no change”in 67% of cases and made the condition “worse” in 26% of cases . Around 50% of respondents reported that inappropriate exercise therapy had also made their condition “worse” .
Using the NICE estimate on prevalence, this controversial recommendation will affect around 200,000 people. A one-to-one course of CBT covering 12 to 16 sessions will cost well over £1500. The cost of a professionally supervised exercise therapy programme is also likely to be substantial.
So where is around £300 million of new money going to come from at a time when very limited funding for some of the newly established NHS clinical services for people with ME/CFS is now being cut? 
And where are all the therapists going to come from? Those already in post cannot even cope with the present workload.
These are important questions that I raised at a NICE implementation and planning meeting in October 2006 – but nobody from NICE could provide a convincing answer.
These recommendations are going to be of no value whatsoever to many people with ME/CFS. They are also going to be impossible to implement due to a lack of both funding and human resources.
Dr Charles Shepherd
4 Top Angel
1: Shepherd C and Chaudhuri A. ME/CFS/PVFS – An Exploration of the Key Clinical Issues. ME Association, July 2007.
2: CFS/ME Working Group. A Report of the CFS/ME Working Group: report to the chief medical officer of an independent working group. London: Department of Health, 2002.
3: ME Association. Summary of key points to emerge from All Party Parliamentary Group meeting held in Committee Room 17 at the House of Commons on Thursday 12 July. http://www.meassociation.org.uk/content/view/307.