The ME Association’s online response in the British Medical Journal to the publication of the NICE guidance on the diagnosis and management of ME/CFS was the only letter selected for publication on the subject in this week’s print edition of the journal.
The text appears below:
The National Institute for Health and Clinical Excellence (NICE) recommends that everyone with mild or moderate myalgic encephalopathy/chronic fatigue syndrome (ME/CFS) should be offered a course of either cognitive behaviour therapy (CBT) or graded exercise therapy (GET).1
This is despite published evidence remaining weak (especially for group CBT) and inconsistent.2 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.3 Around 50% of respondents reported that inappropriate exercise therapy had also made their condition "worse."3
When the NICE estimate on prevalence is used this controversial recommendation will affect some 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?4 And where are all the therapists going to come from? Those already in post often cannot even cope with their current 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 owing to a lack of both funding and human resources.
Charles C Shepherd, Medical Adviser
The ME Association, Buckingham MK18 1TH
Competing interests: Physician with personal experience of this illness.
- Baker R, Shaw EJ. Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): summary of NICE guidance. BMJ 2007;335:446-8. (1 September.)[Free Full Text]
- Shepherd C, Chaudhuri A. ME/CFS/PVFS—an exploration of the key clinical issues. Buckingham: ME Association, 2007.
- 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.
- 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. www.meassociation.org.uk/content/view/307