ME/CFS: Exercise goals should be set by patients and not driven by treatment plan, says NICE
Patient reports of harm from GET cannot be ignored
Professor Trudie Chalder from King’s College Hospital states that:
“The NICE guidelines for CFS/ME are at odds with the research evidence. Researchers from different institutions in different countries have found graded exercise therapy and cognitive behaviour therapy to be effective for some patients with CFS.
Evidence has shown they reduce fatigue and improve functioning without harm, if delivered by trained therapists in specialist clinics. Being a clinician and researcher in this field, I can’t help but think clinicians will be confused by this message from a respected organisation.”
Having carefully reviewed all the very extensive evidence on efficacy and safety for graded exercise therapy (GET) from relevant clinical trials, medical experts and from people with ME/CFS, the NICE guideline committee concluded that in addition to there being no sound evidence for efficacy for GET there was also consistent patient evidence of harm, sometimes serious and persisting, occurring
Patient evidence on the use of GET that was collected by the Forward ME group of charities during the guideline development process (1). This was independently analysed at Oxford Brookes University. 67% of people who had been prescribed GET reported a deterioration in physical health and 53% reported a deterioration in mental health. Many of these people had been under the supervision of NHS referral services for ME/CFS.
Furthermore, the website for the King’s College Hospital ME/CFS service (2) states under ‘Information for Patients':
“There are some side effects associated with the treatment of CSF (sic). These may include the following:
You will experience an initial increase in symptoms. This is natural, as in being consistent you will be being active when you don't feel like it. You will get more muscle ache, more fatigue etc. Remember – this is the bodies normal response, it does not mean a relapse of your illness. Providing that everything has been done gradually, and you have not been over ambitious, this should not be too painful, and it should pass after a few weeks at most”.
Treatment programmes that result in symptom exacerbation are not recommended in the new NICE guideline.
This new NICE guidance should now be acted upon without delay by all health professionals who are managing people with ME/CFS.
Dr Charles Shepherd
Hon. Medical Adviser ME Association