Exercise and other forms of exertion can cause profound and lasting harm to people with ME: various forms of evidence

In this post:

• Patient surveys show that exertion is harmful

• Organisations that support people with ME tell us that exertion is harmful

• Authoritative medical institutions - NICE, the CDC, UpToDate, Mayo Clinic - warn that exercise and exertion can be harmful

• There is limited scientific evidence to show that exercise is harmful

• On the irrationality of refusing to consider any evidence other than scientific evidence

Patient surveys show that exertion is harmful

In a Norwegian survey of 700 people with ME done in 2020, about half said that excessive activity (which could include exercise as well as other types of activity) was associated with a worsening of the illness. The survey authors noted that

Activity beyond the patient’s energy envelope may not only cause short-term PEM, but also long-term exacerbations.

In a 2019 survey of 1,534 people by Forward-ME, 67.1% reported that they had experienced a ‘crash’ that never resolved. For people with ME/CFS, a ‘crash’ is PEM, usually triggered by exertion of some type.

Action for ME did a 2019 survey of over 4000 people with ME. One third of those who had done graded exercise therapy (GET) said that it had a worsening effect.

A 2018 survey by Emerge Australia found that 89% of respondents who had tried increasing their level of exercise/activity had found that it resulted in a worsening of their symptoms.

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Organisations that support people with ME tell us that exertion is harmful

The 25% Group, which supports people with severe ME, has this to say:

We are extremely concerned that some medical/care professionals and sports/exercise specialists are still recommending exercise programmes and/or graded exercise therapy (GET) to people who suffer from ME without even adding very prominent warnings about the harm that exercise can cause to ME sufferers - especially those with severe ME.

…As one of our members says, “I was originally mild/moderate and struggled to work part time. My doctor recommended pushing myself more and suggested I undertake an exercise programme… After the ‘carefully thought out’ exercise programme I was unable to work, unable to care for myself: I needed carers to help with my daily living needs”.

Action for ME says:

…patient surveys consistently find that GET makes symptoms worse, or makes no difference. A small minority of people with M.E. tell us that they find GET useful; many others do not and a significant number report an increase in symptoms following GET.

The ME Association says:

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.

ME International says:

ME patients who exceed the safe activity threshold have post-exertional neuroimmune exhaustion (P.E.N.E.) which can lead to serious deterioration. Graded Exercise Therapy (GET) is contraindicated in anyone with ME.

The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society bluntly says this:

WARNING: Patients have almost universally reported that GET makes their disease worse, sometimes permanently. Knowledgeable specialists do not recommend GET for ME/CFS.

MEAction campaigned to have GET removed from the NICE guidelines, and works to raise awareness that exercise can be dangerous for those with long Covid.

Emerge Australia says:

Consistent with this biomedical evidence, in surveys from around the world, people with ME/CFS commonly report experiencing harm from GET. For example, Emerge Australia’s 2018 Health and Welfare Survey found that 89% of the 610 respondents indicated that increasing their level of exercise/activity resulted in a worsening of their symptoms.

The New Zealand organisation Complex Chronic Illness Support provides a position statement on the use of graded exercise therapy (GET) for ME/CFS:

Scientific studies demonstrate that even the mildest of exercise can provoke ME/CFS symptoms.

The ME/CFS Foundation of South Africa says:

Harmful Graded Exercise Therapy is discontinued and must not be replaced with renamed or rebranded versions, which would be clinically, scientifically and legally unsustainable.

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Authoritative medical institutions warn that exercise and exertion could be harmful

Image from the Bateman Horne Center on Twitter/X.

The NICE guidance on ME/CFS includes this:

Do not offer people with ME/CFS:

• any therapy based on physical activity or exercise as a cure for ME/CFS

• 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.

The CDC maintains a page which provides educational information and resources on ME/CFS aimed at clinicians. Exercise is not listed as a treatment or management strategy.

UpToDate warns patients that exercise can be harmful for them:

“In the past, many health care providers recommended a certain type of exercise therapy (called "graded exercise therapy") for people with CFS. However, this was based on a study that has been criticized for having significant limitations, and many people with CFS find that this type of exercise makes their symptoms worse. Although it might be worth trying an exercise program, this needs to be done with care and in consultation with your health care provider so you can avoid exacerbating your symptoms. People with CFS yearn for their prior active lives and are at risk for "overdoing" exercise.”

The Bateman Horne Center has produced a video series, aimed at clinicians, which explores the science behind post-exertional malaise and emphasises that over-exerting is dangerous for patients with ME/CFS.

On the other hand, graded exercise therapy is still officially recommended in Australia by the Royal Australian College of General Practitioners. This is incredibly controversial and Australian organisations which support people with ME are fighting hard to change this.

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There is limited scientific evidence that exercise is harmful

NICE spent four years thoroughly reviewing the evidence regarding treatments for ME/CFS in preparation for its 2021 guideline. On the question of whether exercise results in harm, they found there simply isn’t good evidence either way. There are a number of studies of exercise as an intervention for ME/CFS, but none of them did a good job of tracking harm; some didn’t track harm at all, while others did so only in a limited and incomplete way. [1],[7] To put it bluntly, scientists do not seem to be interested in finding harm resulting from exercise, so they haven’t looked for it.

In one of the evidence reviews which accompanied the 2021 guideline on ME/CFS, NICE wrote:

The committee discussed that no harms [from GET] were identified in the clinical evidence but also noted these were rarely included as an outcome and reported." [1]

NICE does recognise that there is evidence of very profound harm resulting from exercise:

In studies relating to GET or other exercise interventions, participants reported that following the exercise programme was ‘hard work’ and in some, this led to worsening of symptoms after each session. For others, trying to persist with the exercise programme led to a worsening of their symptoms in the longer term. Debilitating exacerbation of symptoms was a reason for discontinuation. In one study, up to 74% of patients have reported experiencing harms after GET. [2]

The CDC conducted their own thorough evidence review. In their ‘Systematic Review Summary’ they say:

The strength of evidence supporting the use of exercise and cognitive behavioral therapies (CBT) was low. In addition, the magnitude of benefits was small to moderate, with inadequate evidence in patients diagnosed with more current case definitions, limited reporting of harms, and inadequate evaluation in severely affected patients. [3]

However it must be noted that there is a dissenting view. The Cochrane Review of exercise as a treatment for ME/CFS concluded that:

Exercise therapy probably has a positive effect on fatigue in adults with CFS compared to usual care or passive therapies. [4]

However this review is beset by problems. For one thing, its authors admit there is no convincing evidence to show that exercise is safe.

In [the amended Cochrane exercise review by Larun et al.] they concluded that “the impact of exercise therapy on serious adverse reactions is uncertain” because most studies did not report about safety or “because the certainty of the evidence is very low”. [5]

This review has been beset by controversy. In 2018 a formal complaint was made to Cochrane which stated that the review was flawed. Cochrane’s editor-in-chief, David Tovey, agreed with the complaint and said that the review should be withdrawn. However the review’s authors and their allies, who had built their careers on the idea that GET is a treatment for ME/CFS, applied a tremendous amount of pressure, Cochrane caved to this pressure, and the decision to withdraw the review was reversed. Instead, in 2019 the review was amended and its conclusion weakened somewhat. At the same time that the review was amended, Cochrane’s editor-in-chief, Karla Soares-Weiser made a statement in which she recognised that the review was based on out-dated ideas and needed to be redone. She promised that Cochrane would start work on a new review immediately. [6] At the time I write this in April 2024, there is still no sign of that promised review. The flawed, outdated Cochrane review continues to be used to justify pushing harmful ‘treatments’ on people with ME/CFS and long Covid.

[1] G: Non-pharmacological management of ME/CFS, p387, available at https://www.nice.org.uk/guidance/ng206/evidence

[2] Barry PW, Kelley K, Tan T, Finlay I. NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence. J Neurol Neurosurg Psychiatry. 2024 Feb 28:jnnp-2023-332731. doi: 10.1136/jnnp-2023-332731. Epub ahead of print. PMID: 38418217.

[3] Roger Chou, Marian McDonagh, Jessica C. Griffin, Sara Grusing. Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): An Updated Systematic Evidence Review. Centers for Disease Control and Prevention. April 11, 2022. Available at https://www.cdc.gov/me-cfs/programs/evidence-review.html

[4] Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database Syst Rev. 2017 Apr 25;4(4):CD003200. doi: 10.1002/14651858.CD003200.pub7. Update in: Cochrane Database Syst Rev. 2019 Oct 02;10:CD003200. PMID: 28444695; PMCID: PMC6419524.

[5] Vink M, Vink-Niese A. The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS. Healthcare (Basel). 2022 May 12;10(5):898. doi: 10.3390/healthcare10050898. PMID: 35628033; PMCID: PMC9141828.

[6] David Tuller. Trial By Error: What’s Going On with Cochrane’s Exercise Review Mess?

[7] Kindlon T. Do graded activity therapies cause harm in chronic fatigue syndrome? J Health Psychol. 2017 Aug;22(9):1146-1154. doi: 10.1177/1359105317697323. Epub 2017 Mar 20. PMID: 28805516.

Additional references for this section

[A] Twisk FN, Maes M. A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinol Lett. 2009;30(3):284-99. PMID: 19855350.

[B] Gaunt DM, Brigden A, Harris SRS, Hollingworth W, Jago R, Solomon-Moore E, Beasant L, Mills N, Sinai P, Crawley E, Metcalfe C. Graded exercise therapy compared to activity management for paediatric chronic fatigue syndrome/myalgic encephalomyelitis: pragmatic randomized controlled trial. Eur J Pediatr. 2024 Mar 2. doi: 10.1007/s00431-024-05458-x. Epub ahead of print. PMID: 38429546.

[C] Roger Chou, Marian McDonagh, Jessica C. Griffin, Sara Grusing. Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): An Updated Systematic Evidence Review. Centers for Disease Control and Prevention. April 11, 2022. Available at https://www.cdc.gov/me-cfs/programs/evidence-review.html

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On the irrationality of refusing to consider any evidence other than scientific evidence

Members of the ME community know very well that exercise and exertion of any kind - which could be cognitive or sensory as well as physical - can harm us. We know this from our own lived experiences and from the experiences of others in our community. We have heard the stories of people with severe ME - people so ill they cannot leave their homes and cannot work, care for their children or participate in society - whose illness was much milder before they listened to a clinician who advised them to stick to an exercise program no matter how much it hurt.

But among the wider public, and even in the medical world, many still think the notion that exercise can cause devastating harm to us is ridiculous. When we try to educate our doctors, they ignore us. They consider patients’ subjective experiences to be inherently untrustworthy and therefore worthless. In their view, the only knowledge worth having is scientific knowledge. They see themselves as rational, scientific and superior, so I want to make myself very clear: these people are fools.

The notion that scientific knowledge is the only form of knowledge worth having is irrational. Science has many limitations. A crucial one is that science is expensive, the funding often isn’t there, and many experiments which should be carried out simply never happen, leaving gaps in our knowledge. Another limitation is that unfortunately science can be influenced by money and power, just like anything else. We saw this when, for roughly two decades in the nineties and aughties, oil companies poured money into dodgy research which seemed to show that climate change either wasn’t real, wasn’t caused by human activity, or wasn’t a problem. I’m old enough to remember when people in the UK were told that climate change was a good thing because it meant we could grow tropical fruit and have cafes with outdoor seating!

Something similar has happened with ME/CFS. Since the 1980s we have had a stream of dodgy research, supported by insurance companies eager to avoid payouts, by governments with an ideological commitment to ‘getting people back into work’, and by research and public health institutions eager to avoid their responsibility to find a cure or treatment for this disease. The ‘evidence’ seemed to show that ME/CFS was a behavioural problem which could be treated with a bit of exercise and counseling, and therefore required no serious expenditure of resources. All this ‘evidence’ was of poor quality and didn’t stand up to real scrutiny - but it did make it into press releases and headlines, creating stigma which has blighted the lives of patients for decades. The ‘rational’ doctors who think they know better than their patients have been duped by a propaganda campaign.

Every organisation which supports people with ME says the same thing: exercise can be harmful, and that harm is sometimes devastating, life-changing, and permanent. They have been saying this for decades. The ones in Australia say the same thing as the ones in the UK, who say the same as the ones in South Africa and the US. Anyone who wishes to claim that exercise isn’t harmful to people with ME will need to explain why patients all over the world have been telling exactly the same lie, or suffering the exact same delusion, for decades. Not very rational, is it?

The disconnect between what the ME community (together with a small group of knowledgeable experts) knows, and what most of the medical world thinks they know, continues to cause profound harm. Healthcare practitioners continue to dismiss us, disbelieve us, gaslight us, treat us as liars, manipulators and malingerers, and push us into harmful ‘treatments’ or ‘therapies’ - and the worst of it is they really believe they’re doing the right thing. The harm they cause is invisible to them.

It is wrong and an injustice to think that only scientific evidence can show that exercise causes harm to people with ME. To any rational person, the combined testimony of patients all over the world should be more than enough.