Myalgic encephalomyelitis/chronic fatigue syndrome for healthcare providers

There are randomised trials on various treatments for ME/CFS but the topic is very controversial and some groups hold strong views on what should be done.

The range of management approaches used includes:

• Pacing: Where a person aims not to overexert themselves, potentially leading to post-exertional malaise¹, but achieve tasks with rests in between, thus alternating activity and relaxation. A similar approach uses the ‘envelope of energy’² idea to represent how much energy a person feels they have available to them so they can plan how much to spend on various activities. The aim is to stay within the energy envelope. (The White et al. study³ used a version of this called Adaptive Pacing Therapy (APT) where participants were encouraged to plan activities with the aim of staying within 70% of their energy envelope.)
• Cognitive behaviour therapy(external link) (CBT): A psychosocial therapy which looks at the relationship between how we think, feel and act. It’s aimed at helping people change the way they think about problems so they can behave differently and better manage associated symptoms. (It’s notable that the definitions, and operational definitions, of CBT in relation to ME/CFS vary considerable from author to author). The utility of CBT in the treatment of ME/CFS is currently unclear. 
• Graded exercise therapy (GET): A physical activity programme designed to gradually increase exercise intensity to extend what’s currently achievable to improve functional capacity and reduce symptoms.⁴ Most clinical and patient experts, as well as most ME/CFS treatment recommendations DO NOT advise GET for people with ME/CFS.
• The Lightning Process: A training programme developed by Dr Phil Parker delivered through privately funded group workshops. It combines concepts from neuro-linguistic programming (NLP), osteopathy, and life coaching. In essence, it's a mind-body approach aiming to help individuals learn how to influence their health and life using the brain-body connection. A randomised controlled trial carried out in adolescents with ME/CFS by Crawley et al.⁵ indicated that there may be some benefits in terms of physical function, fatigue, anxiety, and school attendance. However, it has been met with mixed reviews, with some praising the findings and others questioning the study's methodology. Read more about the lightning process(external link).

Treatment for ME/CFS has become increasingly controversial; particularly in relation to the appropriateness and usefulness of CBT and GET.

NICE guidelines

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).

Mayo Clinic

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).