The ME/CFS Myth

For decades, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has had doctors and scientists stumped. As a result, unhelpful myths have developed around this condition. However, a recent discovery by researchers at the United States’ National Institute for Health (NIH) may, finally, have shed some light on the biology of ME/CFS. 

What Is ME/CFS

ME/CFS is a complex condition that presents differently in every individual. The common thread, however, is extreme fatigue, particularly after a mental or physical task. While reports of ME/CFS go back to the 1930s, it wasn’t until 2015 that the United States NIH officially recognized the disorder. Estimates show that up to 3% of the population suffers from ME/CFS, although the syndrome is underdiagnosed, especially in marginalized communities. ^{1, 2}

The Unknown Cause of ME/CFS

ME/CFS lacks recognition because of our poor understanding of it. This dearth of insight has led some doctors to conclude that it is a psychiatric condition. That is, “all in their head”. More grounded theories for the underlying cause of ME/CFS include infection, post-viral syndrome, immune system dysfunction, stress affecting body chemistry, changes in energy production and genetics. ³ However, we are yet to find a solid scientific link between any one of these and ME/CFS. 

Treating ME/CFS

It is almost impossible to choose a treatment for a misunderstood illness. As a result, suggested remedies for ME/CFS have ranged over the years from pharmaceuticals to psychiatric therapy to ice baths.¹ These interventions have produced inconsistent evidence of efficacy and little success in treating the symptoms.

The Myth—ME/CFS is Psychogenic.

Perhaps the most harmful myth surrounding ME/CFS is that the condition is all in the person’s head. While this myth has developed over the years for many reasons, two of the main arguments were:

• In the past comparisons of muscle from ME/CFS patients suffering from post-exertional malaise were examined, but no obvious changes were apparent. The working hypothesis was that in the absence of a physical explanation, it must be psychological.
• Early studies found links between depression, anxiety and ME/CFS.

Truth—There is a physiological cause behind Post Exertional Malaise.

Thanks to a recent study by scientists at the NIH, we now have a possible physiological reason for post-exertional malaise. Scientists have long speculated that mitochondria were involved in ME/CFS. New research demonstrated that ME/CFS patients they studied had a defect in the process by which the mitochondria produce energy to power their muscles. They discovered that muscles with high amounts of the protein WASF3 have a harder time recovering after exercise. ⁶

New literature has also explored how ME/CFS is a cause of depression and anxiety in individuals living with the disease.^{7, 8} Previously few studies had reliably measured mental health before an ME/CFS diagnosis. We shouldn’t be surprised if a change in energy levels that prevents you from participating in everyday activities causes psychological distress. 

Myth—ME/CFS is treatable with vigorous exercise. 

Doctors gave long grappled with the conundrum of how to treat this illness without knowing what causes the symptoms. The idea that vigorous exercise might help to “wake—up” people suffering with chronic fatigue or somehow keep them active gained popularity because:

1. In the past, when scientists compared muscle biopsies from individuals with ME/CFS to healthy individuals, they found no structural variations or differences in enzymes that produce energy.⁹ Exercising could be an appropriate treatment because scientists observed no issues within the muscle. 
2. Some doctors feared muscle wasting would occur in people with ME/CFS as their daily activities decrease so much. They speculated that this muscle wasting could lead to further ME/CFS.   

Truth—Vigorous exercise is unhelpful to individuals with ME/CFS.

People living with ME/CFS have pointed out that vigorous exercise did not help to improve their condition, and in many instances made it worse.

A 2020 systemic review reported that studies which claim exercise can help individuals with ME/CFS lack coherence and reproducibility.¹⁰ Moreover, several secondary analyses of these studies have found a failure to report the harms that individuals with ME/CFS endure because of exercising, particularly post-exertional malaise.^11–13 In response to exercise as a treatment for ME/CFS, an update by the UK National Institute for Health Care Excellence (NICE) in 2020 has stated that there is a “lack of evidence for the effectiveness of these interventions.”¹¹ 

With the results from the recent study out of the NIH, we now have evidence that the rationale behind vigorous exercise as treatment for ME/CFS is flawed. Their findings indicated that in the people they examined, their post exertion malaise was caused by metabolic dysfunction. Put simply, they could not refill their energy stores after exercising. We now know that vigorous exercise will only cause individuals with high levels of WASF3 generated by cellular stress to overload their already faltering energy sources. 

To learn more about ME/CFS and the study by Dr. Hwang’s team of researchers, read our article, “NIH Scientists discover biological basis for ME/CFS symptoms”.

—
Kerri Z. Delaney 

References

1. Cleare A. J., Reid S., Chalder T, Hotopf M., Wessely S. Chronic fatigue syndrome. BMJ Clin Evid. 2015;2015:1101.PMCID: PMC4585442
2. Centers for Disease Control. What Is ME/CFS?; 2023. Accessed December 7, 2023. https://www.cdc.gov/me-cfs/about/index.html
3. Centers for Disease Control. Possible Causes. 2018. Accessed December 7, 2023. https://www.cdc.gov/me-cfs/about/possible-causes.html
4. Calabrese L, Danao T, Camara E, Wilke W. Chronic fatigue syndrome. Am Fam Physician. 1992;45(3):1205–1213.
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6. Wang P. yuan, Ma J., Kim YC, et al. WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome. Proc Natl Acad Sci USA. 2023;120(34):e2302738120. doi:10.1073/pnas.2302738120
7. Williams AM, Christopher G., Jenkinson E. The psychological impact of dependency in adults with chronic fatigue syndrome/myalgic encephalomyelitis: A qualitative exploration. J Health Psychol. 2019;24(2):264–275. doi:10.1177/1359105316643376
8. Larkin D., Martin C R. The interface between chronic fatigue syndrome and depression: A psychobiological and neurophysiological conundrum. Neurophysiol Clin. 2017;47(2):123-129. doi:10.1016/j.neucli.2017.01.012
9. Klonoff DC. Chronic Fatigue Syndrome. Clinical Infectious Diseases. 1992;15(5):812–823. doi:10.1093/clind/15.5.812
10. Kim D. Y., Lee JS, Park S. Y., Kim S. J., Son CG. Correction to: Systematic review of randomized controlled trials for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). J. Transl Med. 2020;18(1):492. doi:10.1186/s12967-020-02603-6
11. Turner-Stokes L., Wade DT. Updated NICE guidance on chronic fatigue syndrome. BMJ. Published online December 16, 2020: m4774. doi:10.1136/bmj.m4774
12. Vink M., Vink-Niese A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Reanalysis of a Cochrane review. Health Psychol Open. 2018;5(2):2,055,102,918,805,187. doi:10.1177/2055102918805187