The New Scientist has published a letter (a heavily edited version) from Dr Charles Shepherd, Honorary Medical Adviser to the ME Association; Sonya Chowdhury, CEO of Action for ME; and Dr Nicola Baker at the University of Liverpool, UK in response to an article entitled: Exercise programme helps people with long covid, but it's no panacea. The ME Association was not consulted about the editing of the published letter or asked to approve it.
Original Letter to the Editor
Long Covid and ME/CFS have some important clinical and pathological overlaps and a significant proportion of people with Long Covid also meet diagnostic criteria for ME/CFS.
However, this overlap cannot be used to conclude that results from a clinical trial involving an on-line exercise rehabilitation programme for people with Long Covid is a safe and effective way of treating ME/CFS.
In fact, this study does not show a safe and effective way of treating people with Long covid who also have post-exertional malaise as it is not clear if these people were included in the study. In addition, this Long Covid trial only involved people who had initially been admitted to hospital and therefore cannot be applied to the long covid population who were not admitted to hospital as studies have highlighted these are very different populations of long covid. The study also had a number of additional weaknesses: unblinded intervention arms, a high dropout rate and no objective outcome measures (e.g. work or benefit status, actometry data).
The decision by NICE to no longer recommend graded exercise therapy in the new (2021) Guideline on ME/CFS, and to positively recommend activity and energy management based on pacing, followed a very thorough review of all the clinical trials that had involved exercise therapy. This review concluded that there was no sound evidence of benefit. NICE also took account of extensive patient evidence of harm, sometimes permanent. resulting from inappropriate exercise programmes.
People with ME/CFS have suffered enough from harmful exercise programmes and have welcomed the new NICE guideline recommendations – as have clinicians. We hope that people with Long Covid will not now suffer the same fate.
Yours sincerely,
Dr Charles Shepherd, Honorary Medical Adviser to the ME Association; Sonya Chowdhury CEO Action for M.E. and
Dr Nicola Baker (Clague-Baker), University of Liverpool (and Physios for ME).