As a charity that funds biomedical research into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), we are not aware of any researchers who hold negative views about the patient community (BMJ: Newman M. Chronic fatigue syndrome and long covid: moving beyond the controversy (1)).
Patients, charities, and researchers are all working together on research initiatives such as Decode ME (https://www.decodeme.org.uk), the ME Biobank (https://cureme.lshtm.ac.uk/the-uk-mecfs-biobank), and cardiorespiratory exercise testing (2).
People with ME/CFS feel let down by the medical establishment because almost all biomedical research until recently has been funded by the charity sector. Almost all government funding has gone into research based on a flawed psychosocial model of causation involving abnormal beliefs and behaviours and deconditioning. This research resulted in the current NICE guideline recommendations, published in 2007, for cognitive behavioural therapy (CBT) and graded exercise therapy (GET) (3).
Having reviewed clinical trial and patient evidence for these interventions (4) NICE now states in the introduction to the draft of its updated guideline on ME/CFS that:
“…because of the harms reported by people with ME/CFS, as well as the committee’s own experience of the effects when people exceed their energy limits, the draft guideline says that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered for the treatment of ME/CFS.”
The draft NICE guideline ME/CFS (2020)
It also emphasises that CBT is not a treatment or cure for ME/CFS (5).
People with ME/CFS who have not been listened to by health professionals and told that their symptoms are “all in the mind” deserve an apology. This attitude has meant that biomedical research into the underlying cause of ME/CFS has not taken place at the speed it should.
NICE has warned that current recommendations regarding GET for ME/CFS are not appropriate for people with Long Covid (6) This new cohort of patients with post-viral illness should not have to suffer the same mistakes that have been inflicted on people with ME/CFS.
Dr Charles Shepherd, Hon. Medical Adviser, ME Association
References
1. Newman M . Chronic fatigue syndrome and long covid: moving beyond the controversy. BMJ2021;373:n159. doi:10.1136/bmj.n1559 pmid:34162532
2. ME Association Research. New study to measure physiological changes in daily activity in people with ME: MEA website, May 12, 2020.
3. NICE. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. Clinical guideline [CG53]. 2007.
4. NICE. NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS. 2020 Nov 10.
5. Forward-ME. Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes.
6. Torjesen I. NICE advises against using graded exercise therapy for patients recovering from covid19.
BMJ2020;370:m2912. doi:10.1136/bmj.m2912 pmid:32694164