Russell Fleming, Content Manager, ME Association
The ME Association decided to issue this position statement on exercise and activity management in ME/CFS (and Long Covid) in light of recent discussions which have appeared on, for example, BBC Newsnight, and in the Guardian newspaper and that are continuing online.
- Please also read: ME Association Statement re: BBC Newsnight report on Long Covid & ME/CFS | 20 April 2021
Graded Exercise Therapy
The ME Association is not and never has been against exercise per se. What we have consistently been saying since publication of the current NICE guideline (2007) and the PACE Trial (2011), is that use of regimented and inflexible graded exercise therapy as a management approach for people with ME/CFS is wrong, ineffective, and can cause harm.
We have repeatedly called for GET to be withdrawn as a recommendation by NICE, have supported research that has found clinical trial evidence to be defective, and we have supported the publication of patient survey evidence which has consistently shown how ineffective and harmful this method of treatment can be.
The campaign we were a part of to overturn the NICE recommendation, culminated in the largest ever ME Association petition (2017). NICE finally decided to completely review the ME/CFS guideline, and after a full assessment of the evidence, it withdrew its endorsement of GET in November 2020. NICE has also cautioned against the use of GET for Long Covid.
- PACE Trial reanalysis and Illness Management Reports
- MEA Report on Illness Management – Patient Outcomes Survey (2015)
- Forward-ME & Oxford Brookes University: Report on CBT/GET Patient Survey (2019)
For some people, depending on their current state of health and functional ability, exercise can be carefully introduced as part of activity management or pacing, so long as the individual can accommodate an increase in physical activity and it does not lead to an exacerbation or relapse of ME/CFS symptoms.
The same is true of Long Covid – although people with this condition and the health professionals who treat them also need to be aware of any potential organ damage relating to the initiating Covid-19 infection that would require additional medical care.
With both conditions, health professionals need to be aware that people who have been unable to lead active lifestyles because of illness and who are still disabled, should not be coerced into suddenly adopting potentially harmful exercise regimens that fail to take into account likely risk factors.
Exercise comes in many forms, and while it is not a realistic goal for many with ME/CFS – and we are against any form of strenuous aerobic exercise – gentle exercise in the form of short walks outside, gentle swimming, short cycle rides or yoga can be beneficial when people are showing definite signs of improvement, or as an aid to increasing fitness.
Pacing or activity management takes account of an individual’s current abilities and when practised correctly, allows them to function inside of their ‘energy envelope’ while the body heals enabling symptoms to be managed.
The level of function can vary considerably between individuals and at different times. ME/CFS is considered a fluctuating illness and severity is defined broadly as Mild, Moderate, Severe, and Very Severe. Exercise might only be possible for people who are mildly affected, but even then, they need to take care and avoid potential relapses.
- MEA Leaflet: Prognosis, Permanency & Quality of Life
- MEA Leaflet: Disability Classification & Illness Severity Definitions
The ME Association has not encountered anyone with ME/CFS who has not tried to push against their limits from time to time, when they think they can, or when circumstances allow or dictate. However, exercise is not a panacea or proven means of recovery. Indeed, exercise is contra-indicated for many who are still struggling to achieve basic daily functions.
Cautious trial and error can be a way of learning we can do more – or that we should be sticking where we are, or even doing less. It is natural to try and push and to fight to get back to work or education as part of our efforts to return to ‘normal’ life especially while we are wrestling with acceptance.
Nobody wants to remain housebound or bedbound or limited by ill-health and having to depend on the support of others. This isn’t about a lack of positive mental attitude or avoidance based on fear. It is about realistic expectations and trying to prevent further harm.
People with ME/CFS and Long Covid will often learn the hard way about how much they can endure at any particular time and the rest they need to compensate. Health professionals should listen to their patients, learn from their experiences, and tailor management to be realistic to that person’s abilities. They should be flexible in their approach and should not apply the same approach to everyone or believe that continued disability is a result of deconditioning and that exercise is the answer.
Post-exertional malaise is for many the defining symptom of ME/CFS. This basically means that if a person tries to do more than they are able (through mental or physical exertion), the intensity of their symptoms will increase as a direct result leading to setbacks or relapses.
Research confirming the presence of PEM as a key clinical feature of ME/CFS, has been carried out by several teams in America using Cardio-Pulmonary Exercise Testing (CPET) and this has shown that the aerobic energy system does not work properly and that exercise can provoke ME/CFS symptoms.
With appropriate convalescence and careful management, it is possible for an individual to experience more stability in symptom severity and fluctuations. They might even show signs of improved functional ability allowing greater – if still limited – freedoms.
Understanding the principles of PEM can allow more activity and less need to rest as an individual’s ‘energy envelope’ expands. But health professionals need to recognise that this is not true of everyone’s experience.
For many with ME/CFS, increasing the ability to carry out daily activities such as dressing, improving personal hygiene, preparing meals, and becoming more independent etc. will be necessary priorities before any other activity is even contemplated.
If an individual no longer has PEM then they should review their ME/CFS diagnosis with a doctor. It is not clear of the extent to which PEM is a key component of Long Covid, although from the feedback we have received it would seem to be part of the symptom presentation for a lot of people.
Research into Long covid
We would welcome more research that aims to identify the extent of any overlaps between ME/CFS and Long Covid as well as research examining any related biological abnormalities common across post-viral fatigue syndromes.
- MEA FREE Leaflet: Early and Accurate Diagnosis
- MEA FREE Leaflet: Long Covid & Management
- MEA Leaflet: Energy Management & Pacing
N.B. We will shortly be providing a comprehensive update to the Long Covid & Management leaflet, and all relevant MEA leaflets will be updated following final publication of the new NICE clinical guideline on ME/CFS (18 August 2021).