What Must Be Avoided if You Have Myalgic Encephalomyelitis (ME) - Information for all who treat or manage people with ME including children and adolescents
The NICE Guideline 2021 states:
1.11.14 Do not offer people with ME/CFS:· any therapy based on physical activity or exercise as a cure for ME· 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 ME/CFS
What is Graded Exercise Therapy (GET)?
GET, as a treatment, has been proven to seriously harm and even kill people with ME as their bodies do not have the ability to reproduce energy and pushing their bodies beyond safe limits can result in pushing them into a severe case of their illness, often needing 24 hr care, bedbound, doubly incontinent, needing feeding tubes and having multi organ problems and even death.
What is Cognitive Behavioural Treatment (CBT)
Further reading if you want to know why:
A study by Workwell’s Todd Davenport et al shows that ME patients have metabolic defects that cannot be explained by exercise phobias, deconditioning or 'illness beliefs'. People with ME have reduced oxygen consumption during exercise tests.People with ME have an impaired ability to increase their oxygen consumption during exercise. This is entirely different to every other disease we know including cardiovascular disease, lung disease, end-stage renal disease, hypertension & cystic fibrosis.
ME patients also show impaired oxygen consumption and reduced anaerobic threshold compared to Multiple Sclerosis as per paper hereExercise testing provides an explanation for why ME patients can crash even after modest exertion. The reduced aerobic capacity of people with ME results in a switch to anaerobic metabolism that likely impacts their ability to do simple daily activities.
People with ME can 'crash' if they over-exert resulting in a post-exertional malaise (PEM) (Post Exertional Neuroimmune Exhaustion (PENE) as per the ICC 2011). Triggering PEM/PENE reduces the threshold at which anaerobic metabolism accelerates, which impairs the ability of patients to do non-strenuous tasks as described in this paperExercise that triggers PEM/PENE in ME patients leads to a sustained immune inflammatory response that is distinct from that in sedentary or deconditioned people.People use aerobic metabolism for the majority of daily activities such as walking and seated tasks. But a reduced aerobic capacity of ME patients likely forces a switch to less efficient anaerobic metabolism leading to premature fatigue and PEM /PENE.Exercise studies show that the increased reliance on anaerobic metabolism in ME patients results in increased metabolites such as lactic acid which likely leads to an inability to maintain work and a reduction in activity.
Physical therapists should be aware that post-exertional malaise PEM/PENE in people with ME is due to objectively measurable deficits in metabolism. So yes, exercise is beneficial for nearly every illness.....but the science shows that ME is the exception.
This Frontiers review by the Workwell Foundation discusses how cardiopulmonary exercise testing, CPET, can be used to help diagnose & research ME.
(2) Where did Graded Exercise Therapy come from and why is it still being recommended to people with ME?