Treatment for ME/CFS has become increasingly controversial; particularly in relation to the appropriateness and usefulness of CBT and GET.
The NICE guidelines (myalgic encephalomyelitis or encephalopathy/chronic fatigue syndrome diagnosis and management(external link)) changed quite significantly from 2007 to 2021 by no longer recommending that CBT and GET be offered to people with ME/CFS. With respect to CBT they advise that it shouldn’t be offered as a curative treatment, rather it should only be offered to support people to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness. In addition, they state that the lightning process should not be offered. A summary of the controversy and learning points from the latest NICE guidelines for GPs in primary care is provided by Dr Simon Curtis: ME/CFS – Top 5 learning points from the new NICE guideline(external link).
A challenge to the change in guidance has been put forward by the Royal College of General Practitioners, on behalf of themselves and several other medical and allied health organisations, recommending a more holistic approach to management of ME/CFS. In their joint statement,6 they also note that using the term GET is misleading in that it implies some sort of standardised approach to building up exercise and that personalised paced exercise programmes is a better term: Joint statement in response to NICE guidance on ME/CFS(external link).
An article published in the Journal of Neurology, Neurosurgery and Psychiatry7 supports the joint statement and requests a review of the 2021 NICE guidelines based on 3 systematic reviews subsequently published: Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis(external link).
With respect to exercise, the Mayo Clinic recommendations are for pacing for post-exertional malaise: Mayo Clinic: chronic fatigue syndrome – diagnosis and treatment(external link).