“ME can cause profound, long-term illness and disability, and much of the distress surrounding it is caused by difficulties in recognising, acknowledging and accepting the condition and its impact. This has been compounded further by a lack of effective treatments, wide variation in access to services, and by controversy over the use of graded exercise therapy and cbt that has served only to alienate many people with ME and in some cases undermine the confidence of those caring for them.”
What Must Be Avoided if You Have Myalgic Encephalomyelitis (ME) - Information for all who treat or manage people with ME including children and adolescents
Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) are unsuitable treatments for people with ME. These treatments have been proven to be both ineffectual & harmful to people with ME, including children with ME.
The NICE ME Guideline 2021 represents a major reversal in advice for clinicians. “The committee concluded any programme using fixed incremental increases in physical activity or exercise (for example, graded exercise therapy), or physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories, should not be offered to people with ME. The committee also wanted to reinforce that there is no therapy based on physical activity or exercise that is effective as a cure for ME.”
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
Here is what you can use to show healthcare providers who do not realise the harms caused by GET on people with ME, i.e., those who try to push GET on you or a patient in your care:
(1) Workwell Foundation’s letter re GET for Healthcare providers which can be emailed, or a printed copy handed to your medic/other to inform them of the inappropriateness of GET as a therapy for ME
(2) Dialogues for ME's Educational Film re Graded Exercise Therapy (GET) can also be used to educate medics and others re the dangers of GET as a treatment for ME.
(3) The following films about Post Exertional Malaise (PEM or PENE as per the ICC) are useful for educational purposes and for providing information to ME-unaware medics and others. PEM/PENE is the cardinal feature of Myalgic Encephalomyelitis (ME) so it is very important that medics and others know about PEM/PENE to understand why Graded Exercise Therapy (GET) is so harmful to people with ME.
What is Graded Exercise Therapy (GET)?
The principle of GET is for the patient to increase their exercise over time even if they feel very unwell from doing so. The principle behind prescribing GET for those with ME is an underlying belief that the ongoing symptoms are due to false illness beliefs and deconditioning.
Before we begin to discuss the inappropriateness of GET for ME here are two important points about ME.
(1) ME is an acquired complex neurological disorder affecting multiple systems of the body. The body’s ability to generate and produce energy at a cellular level is seriously impaired meaning systems and organs cannot function properly causing progressive systemic deterioration. ME is a serious and debilitating multi-system neuro-immune condition.
(2) Post Exertional Neuroimmune Exhaustion (PENE), sometimes referred to as PEM is the cardinal symptom of ME. According to the International Consensus Criteria (2011) on ME. 'this cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.' Essentially any action whether physical, cognitive, emotional, social etc drains available energy and if the ability to replace this energy is impaired this can lead to a worsening of all symptoms which can last for days, weeks or months – even causing permanent, non-recoverable systemic damage. This is commonly called ‘a crash’ or ‘a relapse’.
As such, Graded Exercise Therapy (GET) is unsuitable for people with ME.
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)
Cognitive behavioural therapy (CBT) is a talking therapy that can help you manage your problems by changing the way you think and behave. It's most commonly used to treat anxiety and depression, but can be useful for other mental and physical health problems. CBT as a treatment for people with ME is not an effective tool. While CBT may be useful as an adjunct therapy, as with many chronic illnesses, it should not be recommended as a primary treatment.
By convincing patients that they are not ill, it will likely cause harm. Patients who over-exert themselves will suffer a deterioration in their illness. Patient evidence suggests adverse outcomes when treated with CBT.
Many people with ME cannot get out of their beds or houses and to set them up with therapist appointments which they cannot possibly attend, or which inevitably causes them severe crashes & relapses, amounts only to cruel and unusual punishment. Travelling to and sitting through unhelpful CBT sessions can be harmful to ME patients whose energy is in short supply and who already struggle to manage minimum essential daily activities.
If patients want to have psychological therapy to help them cope with their illness, then that should be their choice & something that they request for themselves, as is the case with any other illness.
More Educational Films
If you want to know about the most serious health challenge facing people, one that still has not been recognized, be sure to watch this film from Dialogues for ME which includes the widespread and pernicious impact of a careerist psychiatric lobby.
Further reading if you want to know why:
(1) Graded Exercise Therapy (GET), or any exercise, is not suitable for people with ME;
(2) If you want to know a little about why GET and CBT became the inappropriate suggested treatments for MEif they are inappropriate
(1) The problem with Myalgic Encephalomyeltis (ME) is that it seems so ridiculous that exercise could actually make patients worse. How can exercise be so bad for people with ME but so good for almost every other serious illness?
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.Paper here
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.Paper herePeople 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.Paper hereExercise 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.Paper here
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.
Paper here
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?
GET became underpinned by the NHS after a large trial was conducted in the UK to establish whether CBT and GET were effective treatments for ME. The study was known as the PACE trial. The authors were among a prominent group of British mental health professionals, and their associates, who had long argued that the devastating symptoms of ME were caused by false illness beliefs and severe physical deconditioning.
They recognized that many people experienced an acute viral infection or other illness as an initial trigger. However, they believed that the syndrome was perpetuated by patients’ “unhelpful” and “dysfunctional” notion in that they continued to believe they suffered from an organic disease and that exertion would make them worse.
According to these psychiatry ‘experts’, patients ‘decisions’ to remain sedentary for prolonged periods led to muscle atrophy and other negative systemic physiological impacts, which then caused even more fatigue and other symptoms in a self-perpetuating cycle.
Biological studies however have shown that the illness is characterized by immunological and neurological dysfunctions, and many academic and government scientists say that the search for organic causes, diagnostic tests and drug interventions is paramount.
In contrast, the British mental health experts focused on non-pharmacological rehabilitative therapies, aimed at improving patients’ physical capacities and altering their perceptions of their condition through behavioural and psychological approaches. The PACE trial was designed to be a definitive test of two such treatments they had pioneered to help patients recover and get back to work. British government agencies, eager to stem health and disability costs related to the illness, had committed five million pounds to support the research.
Despite the fact that the trial has been completely debunked by many scientists around the world the authors, who had considerable influence and power in media, government, insurance companies and the UK establishment, were able to control the media message and perpetuate the myth that the illness was fundamentally perpetuated by unhelpful illness beliefs.
There is much written about the PACE trial and calls for its retraction. Here are two informative studies. The first paper is a published peer reviewed article which concludes:
“The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments”.
The PACE trial has been rejected not only by patients and advocates, but also by prominent scientists and clinicians. Hard to believe treatments like these are recommended by NICE and some other agencies. The public needs to know the facts about the £5M PACE trial.
See reanalysis:
“Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT”
Paper here
We Remember Lynn Gilderdale who died in 2008 following a 17-year battle with Severe ME
Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance through other avenues, depending on your query or need for support, for example, via Citizens Information, Your Local HSE Office, Revenue or other office.
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