Time to leave the ME/CFS diagnosis

The push for ever-narrower definitions rests on a seductive logic: identify the 'true' ME patient, and research will finally yield answers. Reality, however, refuses to cooperate.

I know this field from both sides. After a severe bout of pneumonia, I became so unwell that I lost my functional capacity and was eventually labeled with ME (G93.3). 

Today, I conduct research on several thousand patients with persistent physical symptoms. These experiences point toward the same conclusion: patient suffering cannot be forced into increasingly cramped diagnostic boxes.

When the whole body is examined

One of the world’s most comprehensive ME studies presents a troubling picture [1]. More than 75 researchers examined patients from head to toe, mapping the immune system, brain, metabolism, muscles, and nervous system. Hundreds of individuals with an ME diagnosis, or suspected ME, were evaluated.

After a full medical review, only 17 individuals met the strictest ME criteria.

These numbers conceal a serious consequence. Several patients were found to have entirely different explanations for their symptoms, including cancer. A Norwegian study confirms this pattern [2]. After thorough hospital assessment of hundreds of patients, the majority received different diagnoses.

This points to a fundamental problem. The symptoms we call ME encompass a highly heterogeneous group of patients. The risk is diagnostic overshadowing. We overlook treatable conditions because we are too quick to apply the ME label, or because we fail to follow up those who already carry it.

But what did the researchers find in those who actually met the criteria?

No biological explanation. No clear disease mechanism. No test that could confirm a diagnosis. They identified non-specific abnormalities, but the most salient findings were in the brain. 

Patients reported less energy, and the brain engaged the 'brake' more quickly during exertion, a pattern also found in other studies [3]. In practice, the researchers found exactly what they started with: the symptoms themselves.

Patients do not fit into a single box

Clinical data confirm what physicians see every day. Fatigue rarely occurs in isolation [4]. Patients often carry a heavy load of pain, sleep problems, and life stressors [5]. Symptoms emerge from the whole body at once, not just from a single organ [6].

A central symptom in this debate is 'PEM', or post-exertional malaise. It is often presented as proof that ME is a unique biological disease. The reality is different. PEM is reported across a range of conditions, including fibromyalgia [7-9], depression, and even in healthy individuals [10].

Recent data show that as many as 60 per cent of patients with health anxiety report the same phenomenon. PEM is defined and measured primarily through patients’ subjective reports. Even when researchers test patients on exercise bikes in laboratory settings, they find no clear biological marker that distinguishes ME from other conditions.

In practice, syndrome diagnoses such as ME and fibromyalgia overlap substantially [9, 11]. Patients fall along a spectrum of overall burden, not in separate, closed categories [12]. It is the total burden of their symptoms that explains why everyday life grinds to a halt [5, 13], not the label written in the medical record.

Diagnoses without a gold standard

ME, fibromyalgia, and chronic pain conditions differ from many other diseases. They cannot be confirmed by blood tests or imaging. These diagnoses rest entirely on the patients’ own descriptions and on criteria established by a limited professional community [14-16].

The boundaries between these diagnoses are so fluid [17] that the same patient often moves between different labels. Everything depends on which symptoms are emphasised when the diagnosis is made [18, 19].

Physicians find themselves caught in a professional tug-of-war [20]. As a result, two patients with identical symptoms may leave the same clinic with entirely different diagnoses, simply because they met two different doctors [21]. 

The diagnosis becomes a sorting mechanism for symptoms [18] – not an explanation of what is actually happening in the body.

When the diagnosis becomes the problem

One might assume that a diagnosis provides decisive information. In truth, the label itself says little about the underlying biology. It is the overall extent of the symptoms that drives the risk of disability and costs [22], not the name of the syndrome.

Yet the label carries a more troubling consequence. Studies suggest that patients diagnosed with ME have a poorer prognosis than those with identical symptoms who receive a different diagnosis [23]. 

This paradox demands attention. The cultural expectations and the pervasive illness narrative surrounding ME may, in themselves, become barriers to recovery.

When the debate is shaped by a desire to isolate ME as a distinct disease, the consequences are serious. People are not passive recipients of information [24]. When patients are told that activity is dangerous and that the outlook is bleak, it affects how the brain interprets signals from the body [25].

Expectations can generate pain, fatigue, and sleep problems, as well as biological responses. Even asking people about symptoms more frequently can lead them to report more symptoms [26]. The advice to be cautious about activity is intended to protect, but the effect may be the opposite. Symptoms are amplified and become entrenched.

From label to coping

My experience as a patient taught me how profoundly disabling these symptoms can be. As a researcher, I have come to see that the solution does not lie in narrower diagnostic boundaries [27].

We know that even the most severely affected – those who have lain in darkened rooms, unable to take in nourishment – can recover [28]. What those of us who found a way out had in common was a fundamental shift in how we understood and responded to our symptoms.

Patients do not need a stronger illness identity [29]. They need accurate knowledge about what actually drives recovery, and genuine hope that change is possible. For the healthcare system, this requires a shift in focus: away from diagnostic labels and toward function, coping, and the gradual restoration of tolerance.

When the world’s most comprehensive investigations fail to identify a single biological cause, the conclusion points in one direction. ME is not an isolated island in medicine. It is a complex condition that demands a holistic approach. The crucial question is not which label the patient carries. It is how we help people reclaim their lives.

(Conflict of interest: Live Landmark is a participant in the Oslo Chronic Fatigue Network. She holds a secondary position in her own company, where she is – among other things – an instructor in the Lightning Process course. Landmark is a former patient diagnosed with post-viral fatigue syndrome/ME.)

References:

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2. Owe, J.F., et al., Investigation of suspected chronic fatigue syndrome/myalgic encephalopathy. Tidsskrift for Den norske legeforening, 2016.

3. van der Schaaf, M.E., et al., Fatigue is associated with altered monitoring and preparation of physical effort in patients with chronic fatigue syndrome. Biological Psychiatry: Cognitive Neuroscience and Neuroimaging, 2018. 3(4): p. 392-404.

4. Glette, M., et al., Chronic fatigue in the general population: Prevalence, natural course and associations with chronic pain (the HUNT pain study). European Journal of Pain, 2024. 28(10): p. 1762-1771.

5. Landmark, L., et al., Associations between pain intensity, psychosocial factors, and pain-related disability in 4285 patients with chronic pain. Scientific Reports, 2024. 14(1): p. 13477.

6. Landmark, L., et al., Prevalence of Bodily Distress Syndrome and prediction of patient outcomes: Cohort study of 3762 individuals with persistent pain. European Journal of Pain, 2026. 30(2): p. e70212.

7. Barhorst, E.E., et al., Pain-related post-exertional malaise in myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and fibromyalgia: A systematic review and three-level meta-analysis. Pain Medicine, 2022. 23(6): p. 1144-1157.

8. Dix, R. FM friends, how do you handle post-exertional malaise? 2017 [cited 2024 July 2]; Available from: https://fibromyalgianewstoday.com/2017/04/28/fibromyalgia-post-exertional-malaise/?fbclid=IwAR30LwAZTvC2k8UFMO5MP2ETuDnTGexF-jZoAJhjf1n-7wQfVLcl3qRoaBs

9. van der Meulen, M.L., et al., Validity and diagnostic overlap of functional somatic syndrome diagnoses. Journal of Psychosomatic Research, 2024. 181: p. 111673.

10. Institute of Medicine, Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. 2015, National Academies Press: Washington, DC.

11. Fink, P., et al., Symptoms and syndromes of bodily distress: An exploratory study of 978 internal medical, neurological, and primary care patients. Psychosomatic Medicine, 2007. 69(1): p. 30-39.

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13. Bruusgaard, D., et al., Symptom load and functional status: results from the Ullensaker population study. BMC Public Health, 2012. 12(1): p. 1085.

14. Wolfe, F., et al., 2016 Revisions to the 2010/2011 fibromyalgia diagnostic criteria. Seminars in Arthritis and Rheumatism, 2016. 46(3): p. 319-329.

15. National Institute for Health and Care Excellence, Chronic pain (primary and secondary) in over 16s: Assessment of all chronic pain and management of chronic primary pain. 2021, NICE: London.

16. National Institute for Health and Care Excellence, Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. 2021, NICE: London.

17. Wessely, S., C. Nimnuan, and M. Sharpe, Functional somatic syndromes: one or many? The Lancet, 1999. 354(9182): p. 936-939.

18. Fink, P. and A. Schröder, One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. Journal of Psychosomatic Research, 2010. 68(5): p. 415-426.

19. McManimen, S.L. and L.A. Jason, Post-exertional malaise in patients with ME and CFS with comorbid fibromyalgia. SRL Neurology & Neurosurgery, 2017. 3(1): p. 22-27.

20. Nilsen, S., et al., Considerations made by the general practitioner when dealing with sick-listing of patients suffering from subjective and composite health complaints. Scandinavian Journal of Primary Health Care, 2011. 29(1): p. 7-12.

21. Maeland, S., et al., Diagnoses of patients with severe subjective health complaints in Scandinavia: a cross sectional study. International Scholarly Research Notices, 2012.

22. Rask, M.T., et al., Long-term outcome of bodily distress syndrome in primary care: A follow-up study on health care costs, work disability, and self-rated health. Psychosomatic Medicine, 2017. 79(3): p. 345-357.

23. Hamilton, W.T., et al., The prognosis of different fatigue diagnostic labels: A longitudinal survey. Family Practice, 2005. 22(4): p. 383-388.

24. Petrie, K.J. and W. Rief, Psychobiological mechanisms of placebo and nocebo effects: Pathways to improve treatments and reduce side effects. Annual Review of Psychology, 2019. 70(1): p. 599-625.

25. Henningsen, P., et al., Persistent physical symptoms as perceptual dysregulation: A neuropsychobehavioral model and its clinical implications. Psychosomatic Medicine, 2018. 80(5): p. 422-431.

26. Petzke, T.M., et al., “And how did that make you feel?”–Repeated symptom queries enhance symptom reports elicited by negative affect. Journal of Psychosomatic Research, 2024. 181: p. 111634.

27. Burton, C., et al., Functional somatic disorders: discussion paper for a new common classification for research and clinical use. BMC Medicine, 2020. 18: p. 34.

28. Bakken, A.K., et al., Acquiring a new understanding of illness and agency: A narrative study of recovering from chronic fatigue syndrome. International Journal of Qualitative Studies on Health and Well-being, 2023. 18(1): p. 2223420.

29. Hofman, B. Pasienter er mye mer kravstore enn før. 2026 February 27]; Available at: https://www.forskersonen.no/kronikk-meninger-samfunn/pasienter-er-mye-mer-kravstore-enn-for/2622858.

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