An article was published on 24th June 2021 in BMJ’s Opinion section by Melanie Newman, a freelance journalist. The article, titled CFS and Long Covid: Moving beyond the controversy, discusses the role of exercise for those experiencing long-COVID, and comments that this issue has re-polarised approaches to treatment and rehabilitation, referencing the controversies arising over the PACE trial and use of Graded Exercise Therapy in general.
It is worthwhile to look at certain facts –
- NICE, on 10 November 2020, published its draft updated guideline (CG53) on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) which is due for final publication in August 2021.
The draft guideline highlighted the importance of ensuring that people remain in their ‘energy envelope’ when undertaking activity of any kind. It recommends that a physical activity programme, in particular, should only be considered in people with ME/CFS in specific circumstances. Further, it stated that any physical activity programme should begin by establishing the person’s physical activity capability at a level that does not worsen their symptoms. It also says a physical activity programme should only be offered on the basis that it is delivered or overseen by a physiotherapist or occupational therapist with training and expertise in ME/CFS and is regularly reviewed.
Due to 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.
It should not be assumed that the recommendations apply to people with fatigue following COVID19. The recommendations on graded exercise therapy in CG53 only apply to people with a diagnosis of ME/CFS as part of specialist care, and CG53 is clear that this should be part of an individualised, person-centred programme of care, with GET only recommended for people with mild to moderate symptoms.
3. As part of Forward-ME, a grouping of M.E. charities working together, an open letter was sent to NICE raising concerns over the use of GET in long-COVID and M.E.
4. Cochrane Collective publication on exercise, oft cited as justification for use of GET, is subject to review.
5. Lastly, on the point of researcher intimidation, ME Research UK re-iterates that
none of our researchers has complained to us of campaigns of harassment, whether from patients or anyone else. Robust individual exchanges of views may occur from time to time, but these are part of the terrain when people feel passionately about an issue; they may even be welcome as a valuable addition to the scientific debate.
This position appears as a rapid response the article. Collaborative biomedical research is progressing; evidence of the physical nature and cause of ME/CFS is accepted, PACE results have been subject to much scientific criticism and largely undermined in the eyes of many. ME research is moving forward – looking back, we leave to others.