Dr Alastair Miller, Professor Paul Garner and Professor Peter White are not correct when they state that graded exercise therapy (GET) is a safe and effective treatment for ME/CFS.
Having reviewed all the published evidence from clinical trials, the new NICE guideline on ME/CFS is no longer recommending GET as an effective treatment.
Section 20 of the New Draft NICE Guideline for ME/CFS:
1.11.15 Do not advise people with ME/CFS to undertake unstructured exercise that is not part of a supervised programme, such as telling them to go to the gym or exercise more, because this may worsen their symptoms.
1.11.16 Do not offer people with ME/CFS:
- any therapy based on physical activity or exercise as a treatment or cure for ME/CFS
- generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
- any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy
- structured activity or exercise programmes that are based on deconditioning as the cause of ME/CFS
- therapies derived from osteopathy, life coaching and neurolinguistic programming (for example the Lightning Process).
Patient evidence submitted to NICE, and analysed by Oxford Brookes University, also concluded that GET caused symptoms to worsen in the vast majority of people who had tried it.
The new NICE guideline on ME/CFS therefore recommends that people should remain within their energy limitations and not be prescribed GET.
Section 1.3 of the New Draft NICE Guideline on ME/CFS:
1.3.1 When ME/CFS is suspected, give people personalised advice about managing their symptoms. Also advise them:
- not to use more energy than they perceive they have − they should plan their daily activity to stay within their energy envelope and not push through activity
- to rest as they need to
- to maintain a healthy balanced diet, with adequate fluid intake.
The way in which activity-induced fatigue is described in Long Covid is no different to that found in ME/CFS. This is hardly surprising as they are both extremely debilitating post-viral conditions.
Many people with Long Covid are relapsing when they increase physical activity levels too quickly and fail to balance rest with activity.
The NICE Rapid Guideline on Long Covid (published 18 December 2020) does not include any recommendations about the specific use of Graded Exercise Therapy. it stresses the need to consider each patient individually and take into account their symptoms, organ damage, abilities, and risk factors.
While we are aware of other health authorities that have proposed exercise regimens for Long Covid, we have strongly advocated against them on the basis that Long Covid shares so many similarities with other post-viral syndromes including ME/CFS like post-exertional malaise.
Research has also yet to determine the safety or effectiveness of exercise in Long Covid or graded exercise therapy.
In our current state of knowledge there are therefore very good reasons why people with both Long Covid and ME/CFS should avoid any activity programme that involve incremental increases in exercise and are based on a deconditioned model of causality – such as GET.
What people with Long Covid need is a period of supported convalescence at the start of their illness followed by gradual, flexible, and cautious increases in physical and mental activity that are based on a person’s energy envelope and within their limitations.
These should be combined with appropriate periods of rest and relaxation that allow for periods of relapse and symptom exacerbation.