ME/CFS is a chronic disabling illness affecting about one person in 500. Like myself (until recently), most people have very little idea what ME/CFS is (or if it exists at all) and what can be done about it. I have become involved as an independent advisor for research into ME/CFS. Here are some thoughts about the illness, with links to some published material.
As I see it there are two key facts about ME/CFS
1. The causes and mechanisms of the illness are almost completely unknown, apart from an association with acute viral infection at or shortly before onset in some cases.
2. Claims that the condition is better understood and has a ‘biopsychosocial’ origin are based on nothing more than popular prejudices given clever sounding names. They are not supported by the results of treatment studies.
People with ME/CFS have had a raw deal because very few biomedical scientists have taken an interest in the illness. The ‘biopsychosocial’ story has hampered things further. Arguments about whether the illness is physical or psychological or both or neither are a waste of time until we have some useful evidence.
I developed an interest in ME/CFS after retiring from a career focusing on rheumatoid arthritis. I was asked to advise on ME/CFS research. I was humbled to realise how little I knew about it and how difficult a problem it posed. I was struck by the poor quality of research involving, in particular, therapist-delivered treatments such as cognitive behavioural therapy and graded exercise therapy.
Over the last five years I have interacted with the patient and research communities to try to encourage better quality research. I regularly contribute to a patient-based forum dedicated to the science of ME/CFS known as Science for ME (S4ME). I am pleased to see that progress has been made, if slow. A large genetic study has recently been funded in the UK. The poor quality of clinical trials into therapist-delivered treatments is now widely recognised.
Various documents that I have written during this period are given as links below, together with a link to Science for ME. I have also provided an expert witness statement for the UK ME/CFS NICE clinical guideline committee that will be made public in 2021.
Fatigue and Biomedicine article, The Biological Challenge of Myalgic Encephalomyelitis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4867862/
Report for Scottish Parliament at: https://www.parliament.scot/S5_PublicPetitionsCommittee/Submissions%202018/PE1690_F.pdf
Journal of Health Psychology article on the PACE trial: https://journals.sagepub.com/doi/full/10.1177/1359105317700886
Link to Science for ME: https://www.s4me.info
Jo Edwards 