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Chronic Fatigue Syndrome – A Disease That Brings Uncertainties
Disability, Life
May 12, 2023 Dr. Clara Knauf
English Deutsch

The 12th of May marks the International Awareness Day for (at least partially) ill-defined or uncertain neurological diseases. The aim of this day is to draw attention to the inadequate understanding of Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) and other chronic immunological and neurological diseases (CIND). ME/CFS is a serious, long-term illness.1

The date was chosen in remembrance of Florence Nightingale’s birthday, who was born in 1820 and is considered the founder of modern nursing care. Uncertain neurological diseases and Florence Nightingale are related: From her 30s, she showed symptoms that in retrospect may be attributed to ME/CFS.

ME/CFS seems therefore to have been around for more than 200 years, but the current media presence of the disease is heightened. This is due not least to the fact that the new and likewise uncertain disease “long COVID” shows some similar symptoms to ME/CFS.

According to the IOM 2015 Diagnostic Criteria, ME/CFS is diagnosed if “a substantial reduction of impairment in the ability to engage in pre-illness levels of activity (occupational, educational, social or personal life)”2 has existed for at least six months and is accompanied by fatigue, post-exertional malaise (i.e., a disproportionate aggravation of symptoms after mental or physical exertion) and unrefreshing sleep. In addition, either cognitive impairment or orthostatic intolerance must be present to make the diagnosis.3

Uncertainty persists concerning the aetiology of ME/CFS. Probably the most popular hypothesis regarding underlying causes is an exaggerated immune reaction after a viral infection, especially by human herpes viruses such as the Epstein-Barr virus.4 This overall state of inflammation after a viral infection could also explain why some patients show ME/CFS-like symptoms after a COVID‑19 infection.5 Other hypotheses suppose that a metabolic-endocrine dysfunction and/or psychosocial explanations underlie ME/CFS. Overall, it can be assumed that there is not one underlying cause but a multidimensional aetiology.6

There are also many question marks regarding the best possible treatment of ME/CFS, as currently there is no known curative pharmacological or non-pharmacological therapy.7 Personalised treatment is recommended, including symptom control, control of flare-ups, mobility exercises, diet management and/or cognitive behavioural therapy.8

It is certain that the diagnosis of ME/CFS has a great impact not only in the lives of those affected but also regarding socioeconomic aspects. The prevalence is estimated at 0.89%, with women being affected about 1.5 times more than men.9 The total annual direct and indirect costs of ME/CFS in the U.S. are expected to be between $17 billion and $24 billion.10

These costs can be explained by the low recovery rates of people living with ME/CFS and the high proportion of unemployment among them. It can be assumed that less than 10% of patients recover completely,11 i.e., showing no symptoms and returning to premorbid level of functioning without a need for coping strategies or medications.12 The unemployment rate for ME/CFS patients varies between 35% and 69%,13 which means that about half of those affected are not working. There is evidence that compared to healthy controls, but also to patients with multiple sclerosis, unemployment among people with ME/CFS is significantly higher.14 Unemployment seems to be associated with a delayed diagnosis,15 longer duration of the disease16 and comorbidities such as fibromyalgia, irritable bowel syndrome, depression, or anxiety.17,18,19

A faint glimmer of hope is evident in terms of prognosis regarding mortality. Not only Florence Nightingale reached the impressive age of 90,20 but also generally, there seems to be no significant difference between all-cause mortality rates of ME/CFS patients and the general population.21 Only patients with very severe fatigue may have a higher mortality rate, mainly due to cardiovascular disease.22

Overall, the current prognosis of ME/CFS is not good, not only for those affected but also regarding their insurability. A big factor in this seems to be the uncertainty that accompanies the disease. We therefore support today’s International Awareness Day for ME/CFS and CIND – and emphasise the importance of focusing further research, especially on the aetiology and treatment of ME/CFS.

  1. “ME/CFS International Awareness Day,” Centers of Disease Control and Prevention, 2022. [Online]. Available: https://www.cdc.gov/me-cfs/resources/awarenessday.html [Accessed 20 April 2023]
  2. “IOM 2015 Diagnostic Criteria,” Centers for Disease Control and Prevention, 2021. [Online]. Available: https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html [Accessed 21 April 2023]
  3. Ibid.
  4. B. Ludwig, E. Olbert, K. Trimmel, S. Seidel, P. S. Rommer, C. Müller, W. Struhal and T. Berger, “Myalgische Enzephalomyelitis/chronisches Fatigue-Syndrom: eine Übersicht zur aktuellen Evidenz [Myalgic encephalomyelitis/chronic fatigue syndrome: an overview of current evidence],” Der Nervenarzt, 2023;1–9
  5. R. Bansal, S. Gubbi and C. A. Koch, “COVID‑19 and chronic fatigue syndrome: An endocrine perspective,” Journal of Clinical & Translational Endocrinology, 2022;27:100284
  6. B. Ludwig, E. Olbert, K. Trimmel, S. Seidel, P. S. Rommer, C. Müller, W. Struhal and T. Berger, “Myalgische Enzephalomyelitis/chronisches Fatigue-Syndrom: eine Übersicht zur aktuellen Evidenz [Myalgic encephalomyelitis/chronic fatigue syndrome: an overview of current evidence],” Der Nervenarzt, 2023;1–9
  7. National Institute for Health and Care Excellence (NICE), “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management,” NICE guideline, 2021.
  8. Ibid.
  9. E.‑J. Lim, Y.‑C. Ahn, E.‑S. Jang, S.‑W. Lee, S.‑H. Lee and C.‑G. Son, “Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME),” Journal of Translational Medicine, 2020;18(1):100
  10. L.‑A. Jason, M. C. Benton, L. Valentine, A. Johnson and S. Torres-Harding, “The economic impact of ME/CFS: individual and societal costs,” Dyn Med, 2008;7:6
  11. A. Ghali, C. Lacout, J.‑O. Fortrat , K. Depres, M. Ghali and C. Lavigne, “Factors Influencing the Prognosis of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” Diagnostics, 2022;12(10):2540
  12. A. R. Devendorf, C. T. Jackson, M. Sunnquist and L. A. Jason, “Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: The physician perspective,” Disabil Rehabil., 2019;41(2):158‑165
  13. Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,” Washington (DC): National Academies Press (US), 2015
  14. C.‑C. Kingdon, E. W. Bowman, H. Curran, L. Nacul and E. M. Lacerda, “Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls,” PharmacoEconomics, 2018;2(4):381–392
  15. A. Ghali, C. Lacout, J.‑O. Fortrat , K. Depres, M. Ghali and C. Lavigne, “Factors Influencing the Prognosis of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” Diagnostics, 2022;12(10):2540
  16. M. Nyland, H. Naess, J. S. Birkeland and H. Nyland, “Longitudinal follow‑up of employment status in patients with chronic fatigue syndrome after mononucleosis,” BMJ Open, 2014;4(11):e005798
  17. J. Castro-Marrero, M. Faro, M. C. Zaragozá, L. Aliste, T. Fernández de Sevilla and J. Alegre, “Unemployment and work disability in individuals with chronic fatigue syndrome/ myalgic encephalomyelitis: a community-based cross-sectional study from Spain,” BMC Public Health, 2019;19(1):840
  18. Id at note 11.
  19. S. A. M. Stevelink, K. M. Mark, N. T. Fear, M. Hotopf and T. Chalder, “Chronic fatigue syndrome and occupational status: a retrospective longitudinal study,” Occupational Medicine, 2022;72(3):177–183
  20. Id at note 1.
  21. E. Roberts, S. Wessely, T. Chalder, C.‑K. Chang and M. Hotopf, “Mortality of people with chronic fatigue syndrome: a retrospective cohort study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) Register,” Lancet, 2016;387(10028):1638–1643
  22. N. Basu, X. Yang, R. N. Luben, D. Whibley, G. J. Macfarlane, N. J. Wareham, K.‑T. Khaw and P. K. Myint, “Fatigue is associated with excess mortality in the general population: results from the EPIC-Norfolk study,” BMC Medicine, 2016;14(1):122
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medical underwriting issues, 
neurological conditions