Evidence that too much activity can cause a permanent worsening of ME (or long Covid)

People with ME often need to advocate for ourselves to skeptical doctors, family members, social care professionals, employers, schools, or insurance providers, who demand that we perform unsafe or impossible levels of activity.

It seems to me that, while in the past these people didn’t believe in PEM at all, lately there’s a trend where doctors, physiotherapists and others do acknowledge that PEM exists, but seem to totally underestimate it. They recommend exercise programs, even knowing that PEM is a possibility, because they think (very wrongly) that the benefits outweigh the risks. They seem to think that PEM is little more than the stiffness, soreness and tiredness that a healthy person might experience after exercise. They totally fail to grasp that PEM can in fact trigger a long-term worsening of what is already a very serious chronic illness.

I’ve noticed this particularly in the realm of long Covid clinics and so-called ‘recovery’ programs. The people running these programs often recognize the PESE exists (and some even falsely advertise their exercise programs as ‘pacing’ programs) but seem to think it’s fine as long as the exercise is ‘gentle’, not realizing that an exercise program that would be gentle for a healthy person might cause devastating and long-lasting harm to a person with ME or long Covid.

The theme of World ME Day 2023 on May 12 is: "ME: the disease where pushing harder can make you sicker”. Unfortunately, even most doctors still don’t understand that, for people with ME or long Covid, too much activity can be profoundly dangerous.

So, I’ve put together some evidence that PEM can indeed lead to permanent harm, in the hope that it might be helpful. Let me know if I’ve missed anything!

• In a 2019 survey of 1,534 people by Forward-ME, 67.1% reported that they had experienced a ‘crash’ that never resolved. To put it another way, they experienced PEM leading to a permanent worsening of their illness.¹

• A 2021 Norwegian survey of 5,822 people with ME found: “When there is no improvement, the patient is often blamed. This, and the lack of knowledge about the risk of prolonged deterioration due to excessive activity, leads to the patients being subjected to activities they cannot tolerate. It lays the foundation for vicious circles and long-term deterioration.” “The respondents describe that high levels of activity or stress are factors that negatively affect the course of the illness.” “The healthcare service, the welfare administration and the educational system expose a large number of ME patients to stresses that contribute to permanent deterioration.” “Many say that they wanted to continue working as long as possible, but that they have inflicted aggravation on themselves as a result (often after pressure from the employer, Nav [the Norwegian welfare administration], family and friends).”²

• A 2009 review article reported: “CBT/GET is not only hardly more effective than non-interventions or standard medical care, but many patients report that the therapy had affected them adversely, the majority of them even reporting substantial deterioration. Moreover, this review shows that exertion and thus GET most likely have a negative impact on many ME/CFS patients. Exertion induces post-exertional malaise with a decreased physical performance/aerobic capacity, increased muscoskeletal pain, neurocognitive impairment, "fatigue", and weakness, and a long lasting "recovery" time. This can be explained by findings that exertion may amplify pre-existing pathophysiological abnormalities underpinning ME/CFS, such as inflammation, immune dysfunction, oxidative and nitrosative stress, channelopathy, defective stress response mechanisms and a hypoactive hypothalamic-pituitary-adrenal axis. We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as CBT/GET.”³

• A 2022 article aimed at bringing clinicians up to speed on ME/CFS states: “Qualitative evidence, though also of low quality, consistently showed there was a potential risk of harm from GET for some patients (ng206 evidence review for the non-pharmacological management of mecfs p. 387). This was confirmed by the clinical and lived experiences of the committee and expert witnesses. There are now multiple patient surveys, spanning two decades and over 15,000 respondents, in which many more people report harms than benefits from GET”⁴

Abbreviations

ME: Myalgic encephalomyelitis, also called ME/CFS.

PEM: Post-exertional malaise, also called post-exertional symptom exacerbation, PESE, or post-exertional neuro-immune exhausterion, PENE.

CBT: Cognitive behavioural therapy.

GET: Graded exercise therapy.

ME/CFS : Myalgic encephalomyelitis/chronic fatigue syndrome, also called ME.

References

1. Holtzman, C.S.; Bhatia, S.; Cotler, J.; Jason, L.A. Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): A Patient-Driven Survey. Diagnostics 2019, 9, 26. https://doi.org/10.3390/diagnostics9010026 https://www.mdpi.com/2075-4418/9/1/26/htm

2. The course of the illness for ME patients in Norway. Trude Schei and Arild Angelsen. The Norwegian ME Association, March 2021. https://www.me-foreningen.no/wp-content/uploads/2021/03/Norwegian-ME-Association-2021-Report-on-the-course-of-illness-English-summary.pdf

3. 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. https://pubmed.ncbi.nlm.nih.gov/19855350/

4. Kingdon, C.; Lowe, A.; Shepherd, C.; Nacul, L. What Primary Care Practitioners Need to Know about the New NICE Guideline for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults. Healthcare 2022, 10, 2438. https://doi.org/10.3390/healthcare10122438 https://www.mdpi.com/2227-9032/10/12/2438