High Court review for ME/CFS treatment guidelines in the UK

Written by Matthew Hogg BSc (Hons)

Thursday, 05 June 2008 12:50

The High Court in London is to hold a judicial review of the current national guidelines for treating Myalgic Encephalomyelitis (M.E.)/Chronic Fatigue Syndrome (CFS) after protests from both patients and the medical profession.

Patients of a devastating illness, Myalgic Encephalomyelitis (M.E.) have today welcomed the news that there is to be a hearing in the High Court in London on the 17th June to decide whether or not to grant permission for a Judicial Review of The National Institute for Health and Clinical Excellence (NICE) guidelines on the illness which is sometimes referred to as Chronic Fatigue Syndrome (CFS) and more recently ME/CFS. NICE is an independent organisation responsible for providing guidelines disease treatment guidelines to doctors in the UK.

NICE issued their Guideline for ME/CFS in August last year amid protests from patients and medical researchers that they had not followed correct protocols in producing the Guideline. Patient groups fear that some patients could be pressured into accepting treatments which at best may be useless and at worst could cause real harm.

The guidelines recommend that patients should be offered a course of either cognitive behaviour therapy (CBT) or graded exercise therapy (GET). They also advocate so-called 'activity management'.

In a letter published in the British Medical Journal shortly after the publication of the guidelines Dr. Charles Shepherd, Medical Director of the M.E. Association, pointed out that the evidence for the effectiveness of these treatments remains weak and inconsistent, especially for group CBT sessions. Additionally, based on evidence submitted by CFS/ME patients themselves, the chief medical officer's report concluded that CBT produced "no change" in 67% of cases and actually made the patients' condition "worse" in 26% of cases. In addition, around half of the patients reported that inappropriate exercise therapy had also made their condition worse.

The hearing will take place in the High Court at the Royal Courts of Justice on the Strand on 17 June 2008. The hearing is listed to last for half a day and Court will hear legal argument from lawyers representing two ME sufferers as well lawyers for NICE. The precise time and location of the Court room will be published on HM Courts Service website on the afternoon of 16 June: http://www.hmcourts-service.gov.uk/cms/list_admin.htm

For further information please contact Jamie Beagent at jbeagent@leighday.co.uk

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(Adapted from a press release by ME Action UK)