Exercise is a good thing……Right? Most people need more physical activity……Agreed
“There is no situation, there is no age, and no condition where exercise is not a good thing”
This was stated by Sir Chris Whitty, Chief Medical Advisor, during a Covid19 press briefing during lockdown in 2020. It has been quoted in numerous presentations and adverts by organisations encouraging increased physical activity to the UK population.
But, there is a condition where exercise can be harmful and most healthcare and exercise professionals don’t know enough about it and have not had sufficient training to be aware of the potential ill effects. It goes against all of our training, core beliefs, values, foundations for practice, and is not covered within most exercise / healthcare qualifications. ‘It’ is Myalgic Encephalomyelitis (M.E) and/or Chronic Fatigue Syndrome (C.F.S) and countless individuals have tried to speak out that exercise has harmed them, but continue to be ‘gaslit’ by professionals who disagree/ do not understand / think it is in their head or lazy, etc.
My name is Chantelle Martin and I am one of Stripy Lightbulb CIC Directors. Currently, in my working life, I am an Occupational Therapist (OT) in Primary Care, however I initially trained in Exercise and Sports Science and have worked in physical activity for many years, including in gyms. I have completed REPS courses in Exercise Referral and specialist Level 4 conditions. Until working as an Occupational Therapist, I never questioned that physical activity could be detrimental. It is so beneficial for so many, mentally and physically. The only downsides I had considered were over-exercise (addiction) and Delayed Onset Muscle Soreness (DOMS) but saw this as a sign of the body adapting positively.
My work as an Occupational Therapist, a healthcare registered professional, showed me that people with M.E/C.F.S. were not avoiding exercise, lazy or deconditioned. Something was going on in them that prevented them having the energy for anything beyond the basic activities of everyday life such as washing, dressing, climbing stairs, sustaining concentration, work, etc. They want to do more than ‘exist’ but their bodies will not allow them to without crashing completely. I learnt that people with this condition experience Post Exertional Malaise (PEM). Why had I never heard of this in all my training?
I have since completed additional training with Stripy Lightbulb CIC and followed the research and progress of Covid-19 with interest. M.E/C.F.S can be caused by Post Viral Illness and this is poorly understood, even by the medical community. Post Exertional Malaise is a key characteristic of M.E/C.F.S and is also being experienced by almost half of those suffering what we now call Long Covid. Unless we are better educated in PEM and screen for it, we will continue to make the mistakes of the past and let down cohorts of people with either M.E/C.F.S or Long Covid. Deconditioning is not the primary reason for ill health in these cohorts. Physiologically unknown factors are at play, whether it be cellular changes, microclots, brain inflammation or other factors. Essentially the energy systems may still be ‘sick’ and not functioning in normal ways. Many have multiple other co-morbities and complex Autonomic Nervous System symptoms including Orthostatic Intolerance. Prescribing exercise or physical activity will likely lead to deterioration in some cases where people are experiencing debilitating fatigue and PEM. Essentially, these individuals tip quickly into anaerobic thresholds and take longer to recover. Many just drop out of exercise programmes as it is unsustainable and they cannot report the ill effects, thus are silently suffering. Individuals should be screened for PEM before being offered exercise programmes, however we know few are. This should also be in place for individuals with Long Covid, prior to commencement of exercise programmes.
I have gone back over my exercise textbooks and PEM is not mentioned. Very little information is given on M.E/C.F.S and information is now outdated with the release of the new NICE guideline. If someone states they can only walk for 5 mins we previously said something like, “walk for four mins, rest for a minute and then walk 2 more.” Naturally increasing frequency, intensity, time, type of activity to provide ‘overload’ for body adaptions, as that is what we are supposed to do.
How do we educate exercise professionals and get physical activity providers linked with specialist medical professional support if needed? The Nice guidelines (29 October 2021) for M.E/C.F.S states that “If a physical activity or exercise programme is offered, it should be overseen by a physiotherapist in an ME/CFS specialist team.” How many gyms are linked with specialist teams? Most GP exercise referral schemes will only link back with the GP if a person reports anything.
I have contacted two leading providers of exercise professional training and advice -the American College of Sports Medicine (ACSM) and The Wright Foundation but not had a response as to whether they have updated their information. I have seen other providers providing physical activity training for Long Covid without mentioning PEM or Post Exertional Symptom Exacerbation (PESE) and we know 46% of those with Long Covid are experiencing this. Physical activity should not be recommended for this group and may lead to deterioration and potential litigation. Overload principle and increasing exercise is not going to help these people.
The Nice Guidelines for M.E/C.F.S (29 October 2021) state:-
Do not offer/advise people with M.E/C.F.S:
- to undertake exercise that is not part of a programme overseen by an M.E/C.F.S specialist team, such as telling them to go to the gym or exercise more, because this may worsen their symptoms.
- any therapy based on physical activity or exercise as a cure for M.E/C.F.S
- generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
- any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
- physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating M.E/C.F.S.
It is no longer an excuse to not be aware!
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This blog was part of our #MindsetReboot campaign to educate exercise professionals about the detrimental impact exercise can have on people who have PEM.
Unfortunately, we encountered a brick wall from the fitness industry and quickly realised that changing an entire mindset that ‘exercise is a cure all’ is too vast to be successfully tackled by us as a solo social enterprise. we would be open to collaboration opportunities in future but we have cancelled this ‘Mindset Reboot’ campaign.