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NICE understates role of exercise and CBT in managing ME/CFS, say medical leaders

BMJ 2021; 375 doi: https://doi.org/10.1136/bmj.n2647 (Published 29 October 2021) Cite this as: BMJ 2021;375:n2647

Rapid Response:

Consensus on ME/CFS: Re: NICE understates role of exercise and CBT in managing ME/CFS, say medical leaders

Dear Editor
The BMJ reports discontent with the new NICE Guideline on ME/CFS [1, 2] among the Royal Colleges, particularly with regard to Graded Exercise Therapy (GET). The quality of the evidence and the rigour of its assessment are contested by the Colleges, patient representatives and researchers [3, 4]. In summary, the Colleges emphasise the potential benefits of exercise for patients with ME/CFS, the patient community emphasises potential harm that exercise can cause and both communities quote research supporting their hypotheses, the quality of which is contested.
Is there any agreement on the Guideline?
Consider a patient with ME who, after attempting a therapy based upon exercise, reports a worsening of their symptoms, sequelae which they regard as harmful. Should the treating physician:
• Interpret this as “the bodies [sic] normal response” and press on?
• Or should they defer to the NICE assertion that “treatment programmes that result in symptom exacerbation are not recommended” and abandon exercise-based approaches? [5]
The Guideline is quite clear: “Health and social care professionals should take time to build supportive, trusting and empathetic relationships.” Trust cannot be achieved if a patient believes the prescribed treatment is causing them harm. Surely Royal Colleges, researchers and patients can all agree on this?
1. National Institute for Health and Care Excellence. 2021. NICE guideline [NG206]. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. Published: 29 October 2021. Available online at: https://www.nice.org.uk/guidance/ng206
2. BMJ 2021;375:n2647
3. BMJ 2021;375:n2643
4. Science Media Centre, Published: 29 October 2021. https://www.sciencemediacentre.org/expert-reaction-to-updated-nice-guide...
5. BMJ 2021;375:n2643 Rapid Response, Charles B Shepherd

Competing interests: Stuart I Brown is a volunteer member of #MEAction Scotland

25 November 2021
Stuart I Brown
Researcher (Retired)#
Nina Muirhead
#MEAction Scotland
Kinross, UK