The push for ever-narrower definitions rests on a
\nseductive logic: identify the ‘true’ ME patient, and research will finally yield
\nanswers. Reality, however, refuses to cooperate.<\/p>\n
I know this field from both sides. After a severe bout
\nof pneumonia, I became so unwell that I lost my functional capacity and was
\neventually labeled with ME (G93.3).\u00a0<\/p>\n
Today, I conduct research on several
\nthousand patients with persistent physical symptoms. These experiences point
\ntoward the same conclusion: patient suffering cannot be forced into increasingly
\ncramped diagnostic boxes.<\/p>\n
When the whole body is examined<\/p>\n
One of the world\u2019s most comprehensive ME studies
\npresents a troubling picture [1]. More than 75
\nresearchers examined patients from head to toe, mapping the immune system,
\nbrain, metabolism, muscles, and nervous system. Hundreds of individuals with an
\nME diagnosis, or suspected ME, were evaluated.<\/p>\n
After a full medical review, only 17 individuals met
\nthe strictest ME criteria.<\/p>\n
These numbers conceal a serious consequence. Several
\npatients were found to have entirely different explanations for their symptoms,
\nincluding cancer. A Norwegian study confirms this pattern [2]. After
\nthorough hospital assessment of hundreds of patients, the majority received
\ndifferent diagnoses.<\/p>\n
This points to a fundamental problem. The symptoms we
\ncall ME encompass a highly heterogeneous group of patients. The risk is
\ndiagnostic overshadowing. We overlook treatable conditions because we are too
\nquick to apply the ME label, or because we fail to follow up those who already carry
\nit.<\/p>\n
But what did the researchers find in those who
\nactually met the criteria?<\/p>\n
No biological explanation. No clear disease mechanism.
\nNo test that could confirm a diagnosis. They identified non-specific
\nabnormalities, but the most salient findings were in the brain.\u00a0<\/p>\n
Patients
\nreported less energy, and the brain engaged the ‘brake’ more quickly during
\nexertion, a pattern also found in other studies [3]. In
\npractice, the researchers found exactly what they started with: the symptoms
\nthemselves.<\/p>\n
Patients do not fit into a single box<\/p>\n
Clinical data confirm what physicians see every day.
\nFatigue rarely occurs in isolation [4]. Patients
\noften carry a heavy load of pain, sleep problems, and life stressors [5]. Symptoms emerge
\nfrom the whole body at once, not just from a single organ [6]. <\/p>\n
A central symptom in this debate is ‘PEM’, or post-exertional
\nmalaise. It is often presented as proof that ME is a unique biological disease.
\nThe reality is different. PEM is reported across a range of conditions,
\nincluding fibromyalgia [7-9], depression,
\nand even in healthy individuals [10].<\/p>\n
Recent data show that as many as 60 per cent of patients with
\nhealth anxiety report the same phenomenon. PEM is defined and measured
\nprimarily through patients\u2019 subjective reports. Even when researchers test
\npatients on exercise bikes in laboratory settings, they find no clear
\nbiological marker that distinguishes ME from other conditions.<\/p>\n
In practice, syndrome diagnoses such as ME and
\nfibromyalgia overlap substantially [9, 11]. Patients fall
\nalong a spectrum of overall burden, not in separate, closed categories [12].
\nIt is the total burden of their symptoms that explains why everyday life grinds
\nto a halt [5, 13], not the
\nlabel written in the medical record.<\/p>\n
Diagnoses without a gold standard<\/p>\n
ME, fibromyalgia, and chronic pain conditions differ
\nfrom many other diseases. They cannot be confirmed by blood tests or imaging.
\nThese diagnoses rest entirely on the patients\u2019 own descriptions and on criteria
\nestablished by a limited professional community [14-16].<\/p>\n
The boundaries between these diagnoses are so fluid [17]
\nthat the same patient often moves between different labels. Everything depends
\non which symptoms are emphasised when the diagnosis is made [18, 19].<\/p>\n
Physicians find themselves caught in a professional tug-of-war
\n[20]. As a
\nresult, two patients with identical symptoms may leave the same clinic with entirely
\ndifferent diagnoses, simply because they met two different doctors [21].\u00a0<\/p>\n
The
\ndiagnosis becomes a sorting mechanism for symptoms [18] \u2013 not an explanation of what is actually
\nhappening in the body.<\/p>\n
When the diagnosis becomes the problem<\/p>\n
One might assume that a diagnosis provides decisive
\ninformation. In truth, the label itself says little about the underlying
\nbiology. It is the overall extent of the symptoms that drives the risk of
\ndisability and costs [22], not the
\nname of the syndrome.<\/p>\n
Yet the label carries a more troubling consequence.
\nStudies suggest that patients diagnosed with ME have a poorer prognosis than
\nthose with identical symptoms who receive a different diagnosis [23].\u00a0<\/p>\n
This
\nparadox demands attention. The cultural expectations and the pervasive illness
\nnarrative surrounding ME may, in themselves, become barriers to recovery.<\/p>\n
When the debate is shaped by a desire to isolate ME as
\na distinct disease, the consequences are serious. People are not passive
\nrecipients of information [24]. When
\npatients are told that activity is dangerous and that the outlook is bleak, it
\naffects how the brain interprets signals from the body [25].<\/p>\n
Expectations can generate pain, fatigue, and sleep
\nproblems, as well as biological responses. Even asking people about symptoms
\nmore frequently can lead them to report more symptoms [26]. The advice
\nto be cautious about activity is intended to protect, but the effect may be the
\nopposite. Symptoms are amplified and become entrenched.<\/p>\n
From label to coping<\/p>\n
My experience as a patient taught me how profoundly
\ndisabling these symptoms can be. As a researcher, I have come to see that the
\nsolution does not lie in narrower diagnostic boundaries [27]. <\/p>\n
We know that even the most severely affected \u2013 those
\nwho have lain in darkened rooms, unable to take in nourishment \u2013 can recover [28]. What those
\nof us who found a way out had in common was a fundamental shift in how we
\nunderstood and responded to our symptoms.<\/p>\n
Patients do not need a stronger illness identity [29]. They need
\naccurate knowledge about what actually drives recovery, and genuine hope that
\nchange is possible. For the healthcare system, this requires a shift in focus:
\naway from diagnostic labels and toward function, coping, and the gradual restoration
\nof tolerance.<\/p>\n
When the world\u2019s most comprehensive investigations
\nfail to identify a single biological cause, the conclusion points in one
\ndirection. ME is not an isolated island in medicine. It is a complex condition
\nthat demands a holistic approach. The crucial question is not which label the
\npatient carries. It is how we help people reclaim their lives.<\/p>\n
(Conflict of interest: Live Landmark is a participant in the Oslo Chronic Fatigue Network<\/a>. She holds a secondary position in her own company, where she is \u2013 among other things \u2013 an instructor in the Lightning Process course. Landmark is a former patient diagnosed with post-viral fatigue syndrome\/ME.)<\/p>\n References:<\/p>\n 1. Walitt, 2. Owe, 3. van 4. Glette, 5. Landmark, 6. Landmark, 7. Barhorst, 8. Dix, 9. van 10. Institute 11. Fink, 12. Petersen, 13. Bruusgaard, 14. Wolfe, 15. National 16. National 17. Wessely, 18. Fink, 19. McManimen, 20. Nilsen, 21. Maeland, 22. Rask, 23. Hamilton, 24. Petrie, 25. Henningsen, 26. Petzke, 27. Burton, 28. Bakken, 29. Hofman,
\nB., et al., Deep phenotyping of
\npost-infectious myalgic encephalomyelitis\/chronic fatigue syndrome. Nature
\nCommunications, 2024. 15(1).<\/p>\n
\nJ.F., et al., Investigation of suspected
\nchronic fatigue syndrome\/myalgic encephalopathy. Tidsskrift for Den norske
\nlegeforening, 2016.<\/p>\n
\nder Schaaf, M.E., et al., Fatigue is
\nassociated with altered monitoring and preparation of physical effort in
\npatients with chronic fatigue syndrome. Biological Psychiatry: Cognitive
\nNeuroscience and Neuroimaging, 2018. 3(4):
\np. 392-404.<\/p>\n
\nM., et al., Chronic fatigue in the
\ngeneral population: Prevalence, natural course and associations with chronic
\npain (the\u00a0HUNT pain study). European Journal of Pain, 2024. 28(10): p. 1762-1771.<\/p>\n
\nL., et al., Associations between pain
\nintensity, psychosocial factors, and pain-related disability in 4285 patients
\nwith chronic pain. Scientific Reports, 2024. 14(1): p. 13477.<\/p>\n
\nL., et al., Prevalence of Bodily Distress
\nSyndrome and prediction of patient outcomes: Cohort study of 3762 individuals
\nwith persistent pain. European Journal of Pain, 2026. 30(2): p. e70212.<\/p>\n
\nE.E., et al., Pain-related
\npost-exertional malaise in myalgic encephalomyelitis\u00a0\/ chronic fatigue
\nsyndrome (ME\/CFS) and fibromyalgia: A systematic review and three-level
\nmeta-analysis. Pain Medicine, 2022. 23(6):
\np. 1144-1157.<\/p>\n
\nR. FM friends, how do you handle
\npost-exertional malaise? 2017 [cited
\n2024 July 2]; Available from: https:\/\/fibromyalgianewstoday.com\/2017\/04\/28\/fibromyalgia-post-exertional-malaise\/?fbclid=IwAR30LwAZTvC2k8UFMO5MP2ETuDnTGexF-jZoAJhjf1n-7wQfVLcl3qRoaBs<\/a> <\/p>\n
\nder Meulen, M.L., et al., Validity and
\ndiagnostic overlap of functional somatic syndrome diagnoses. Journal of
\nPsychosomatic Research, 2024. 181:
\np. 111673.<\/p>\n
\nof Medicine, Beyond myalgic
\nencephalomyelitis\/chronic fatigue syndrome: Redefining an illness. 2015,
\nNational Academies Press: Washington, DC.<\/p>\n
\nP., et al., Symptoms and syndromes of
\nbodily distress: An exploratory study of 978 internal medical, neurological,
\nand primary care patients. Psychosomatic Medicine, 2007. 69(1): p. 30-39.<\/p>\n
\nM.W., et al., Prevalence of functional
\nsomatic syndromes and bodily distress syndrome in the Danish population: the
\nDanFunD study. Scandinavian Journal of Public Health, 2020. 48(5): p. 567-576.<\/p>\n
\nD., et al., Symptom load and functional
\nstatus: results from the Ullensaker population study. BMC Public Health,
\n2012. 12(1): p. 1085.<\/p>\n
\nF., et al., 2016 Revisions to the
\n2010\/2011 fibromyalgia diagnostic criteria. Seminars in Arthritis and
\nRheumatism, 2016. 46(3): p. 319-329.<\/p>\n
\nInstitute for Health and Care Excellence, Chronic
\npain (primary and secondary) in over 16s: Assessment of all chronic pain and
\nmanagement of chronic primary pain. 2021, NICE: London.<\/p>\n
\nInstitute for Health and Care Excellence, Myalgic
\nencephalomyelitis (or encephalopathy)\/chronic fatigue syndrome: diagnosis and
\nmanagement. 2021, NICE: London.<\/p>\n
\nS., C. Nimnuan, and M. Sharpe, Functional
\nsomatic syndromes: one or many? The Lancet, 1999. 354(9182): p. 936-939.<\/p>\n
\nP. and A. Schr\u00f6der, One single diagnosis,
\nbodily distress syndrome, succeeded to capture 10 diagnostic categories of
\nfunctional somatic syndromes and somatoform disorders. Journal of
\nPsychosomatic Research, 2010. 68(5):
\np. 415-426.<\/p>\n
\nS.L. and L.A. Jason, Post-exertional
\nmalaise in patients with ME and CFS with comorbid fibromyalgia. SRL
\nNeurology & Neurosurgery, 2017. 3(1):
\np. 22-27.<\/p>\n
\nS., et al., Considerations made by the
\ngeneral practitioner when dealing with sick-listing of patients suffering from
\nsubjective and composite health complaints. Scandinavian Journal of Primary
\nHealth Care, 2011. 29(1): p. 7-12.<\/p>\n
\nS., et al., Diagnoses of patients with
\nsevere subjective health complaints in Scandinavia: a cross sectional study.
\nInternational Scholarly Research Notices, 2012.<\/p>\n
\nM.T., et al., Long-term outcome of bodily
\ndistress syndrome in primary care: A follow-up study on health care costs, work
\ndisability, and self-rated health. Psychosomatic Medicine, 2017. 79(3): p. 345-357.<\/p>\n
\nW.T., et al., The prognosis of different
\nfatigue diagnostic labels: A longitudinal survey. Family Practice, 2005. 22(4): p. 383-388.<\/p>\n
\nK.J. and W. Rief, Psychobiological
\nmechanisms of placebo and nocebo effects: Pathways to improve treatments and
\nreduce side effects. Annual Review of Psychology, 2019. 70(1): p. 599-625.<\/p>\n
\nP., et al., Persistent physical symptoms
\nas perceptual dysregulation: A neuropsychobehavioral model and its clinical
\nimplications. Psychosomatic Medicine, 2018. 80(5): p. 422-431.<\/p>\n
\nT.M., et al., \u201cAnd how did that make you
\nfeel?\u201d\u2013Repeated symptom queries enhance symptom reports elicited by negative
\naffect. Journal of Psychosomatic Research, 2024. 181: p. 111634.<\/p>\n
\nC., et al., Functional somatic disorders:
\ndiscussion paper for a new common classification for research and clinical use.
\nBMC Medicine, 2020. 18: p. 34.<\/p>\n
\nA.K., et al., Acquiring a new
\nunderstanding of illness and agency: A narrative study of recovering from
\nchronic fatigue syndrome. International Journal of Qualitative Studies on
\nHealth and Well-being, 2023. 18(1):
\np. 2223420.<\/p>\n
\nB. Pasienter er mye mer kravstore enn f\u00f8r.
\n2026 February 27]; Available at: https:\/\/www.forskersonen.no\/kronikk-meninger-samfunn\/pasienter-er-mye-mer-kravstore-enn-for\/2622858<\/a>.<\/p>\n