Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a systemic health condition that compromises the neurological, gastrointestinal, genitourinary, cardiological, metabolic and immune systems 1,10,13,14.

Fatigue is not the defining feature of ME/CFS, but, rather, post exertional symptom exacerbation 1,2,3,4,5,6.

Post exertional symptom exacerbation is “extreme, prolonged exhaustion and sickness”, cognitive dysfunction and incapacity, lasting days, weeks or more 1. It is triggered by minimal physical or cognitive exertion, including the daily activities of life 1.

ME/CFS is not a psychological condition and is not caused by deconditioning 9,10,11,12. People with ME/CFS show many abnormalities in their neurological, metabolic and immune systems 1,10,13,14.

Although 60-65% of children recover from ME/CFS 8, ME/CFS is usually a permanent condition in adults, with only a 5% recovery rate 7.

There is no treatment for ME/CFS 4,15. Management of ME/CFS focuses on treating symptoms, identifying activity limits and pacing to avoid post exertional symptom exacerbation 4,15 .

ME/CFS can cause severe disability 1. By definition, people with ME/CFS are unable to perform their usual activities 1,16. Sixty-five per cent are unable to work 16. One quarter of people with ME/CFS are housebound or bedridden 1.

  1. Carruthers, B. M., van de Sande, M. I., De Meirleir, K. L., Klimas, N. G., Broderick, G., Mitchell, T., Staines, D., Powles, A. C., Speight, N., Vallings, R., Bateman, L., Baumgarten-Austrheim, B., Bell, D. S., Carlo-Stella, N., Chia, J., Darragh, A., Jo, D., Lewis, D., Light, A. R., Marshall-Gradisnik, S., … Stevens, S. (2011). Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, 270(4), 327–338. https://doi.org/10.1111/j.1365-2796.2011.02428.x
  2. Brown, A. A., Jason, L. A., Evans, M. A., & Flores, S. (2013). Contrasting case definitions: The ME International Consensus Criteria vs. the Fukuda et al. CFS Criteria. North American Journal Of Psychology, 15(1), 103–120.
  3. Mateo, L. J., Chu, L., Stevens, S., Stevens, J., Snell, C. R., Davenport, T., & VanNess, J. M. (2020). Post-exertional symptoms distinguish myalgic encephalomyelitis/chronic fatigue syndrome subjects from healthy controls. Work, 66(2), 265–275. https://doi.org/10.3233/WOR-203168
  4. National Institute for Health and Care Excellence (2021). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: Diagnosis and management. Royal College of Physicians Guidelines, downloaded from https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#assessment-and-care-and-support-planning-by-an-mecfs-specialist-team, accessed 22 October, 2022.
  5. Moore, G. E., Keller, B. A., Stevens, J., Mao, X., Stevens, S. R., Chia, J. K., Levine, S. M., Franconi, C. J., & Hanson, M. R. (2023). Recovery from exercise in persons with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Medicina, 59(3), 571. https://doi.org/10.3390/medicina59030571
  6. Institute of Medicine. (2015). Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Military Medicine, 180(7), 721–723. https://doi.org/10.7205/MILMED-D-15-0008
  7. Cairns, R., & Hotopf, M. (2005). A systematic review describing the prognosis of chronic fatigue syndrome. Occupational medicine (Oxford, England), 55(1), 20–31. https://doi.org/10.1093/occmed/kqi013
  8. Moore, Y., Serafimova, T., Anderson, N., King, H., Richards, A., Brigden, A., Sinai, P., Higgins, J., Ascough, C., Clery, P., & Crawley, E. M. (2021). Recovery from chronic fatigue syndrome: a systematic review-heterogeneity of definition limits study comparison. Archives of disease in childhood, 106(11), 1087–1094.
  9. World Health Organization. (2019). ICD-11: International classification of diseases (11th revision), chapter 8, 8E43.Z. Retrieved from https://icd.who.int/
  10. Hooper M. (2007). Myalgic encephalomyelitis: A review with emphasis on key findings in biomedical research. Journal of Clinical Pathology, 60(5), 466–471. https://doi.org/10.1136/jcp.2006.042408
  11. Cook, D. B., Light, A. R., Light, K. C., Broderick, G., Shields, M. R., Dougherty, R. J., Meyer, J. D., VanRiper, S., Stegner, A. J., Ellingson, L. D., & Vernon, S. D. (2017). Neural consequences of post-exertion malaise in myalgic encephalomyelitis/chronic fatigue syndrome. Brain, Behavior, and Immunity, 62, 87–99. https://doi.org/10.1016/j.bbi.2017.02.009
  12. Snell, C. R., Stevens, S. R., Davenport, T. E., & Van Ness, J. M. (2013). Discriminative validity of metabolic and workload measurements for identifying people with chronic fatigue syndrome. Physical therapy, 93(11), 1484–1492. https://doi.org/10.2522/ptj.20110368
  13. Sukocheva, O. A., Maksoud, R., Beeraka, N. M. et al. (2021). Analysis of post COVID-19 condition and its overlap with myalgic encephalomyelitis/chronic fatigue syndrome, Journal of Advanced Research, https://doi.org/10.1016/j.jare.2021.11.013
  14. Cortes Rivera, M., Mastronardi, C., Silva-Aldana, C. T., Arcos-Burgos, M., & Lidbury, B. A. (2019). Myalgic encephalomyelitis/chronic fatigue syndrome: A comprehensive review. Diagnostics (Basel, Switzerland), 9(3), 91. https://doi.org/10.3390/diagnostics9030091
  15. National Institute for Health and Care Excellence (2021). Myalgic encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: Diagnosis and management [G] Evidence reviews for the non pharmacological management of ME/CFS, NICE guideline NG206, downloaded from https://www.nice.org.uk/guidance/ng206/evidence/g-nonpharmacological-management-of-mecfs-pdf-9265183028, accessed 22 October, 2022.
  16. Hvidberg, M. F., Brinth, L. S., Olesen, A. V., Petersen, K. D., Ehlers, L. (2015). The health-related quality of life for patients with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). PLoS ONE, 10(7): e0132421. doi:10.1371/journal.pone.0132421