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What is ME – Myalgic Encephalomyelitis?

Tired person with a wind up attached to the back

 

Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, is a little-understood, female-biased [1] illness. It is estimated that up to 90% of people with the condition go diagnosed [2] and about 25% of sufferers are severely ill [3]. In recognition of the profound physical and psychological impact this disease has on its victims, August 8th has been designated as a Severe ME Awareness Day.

What is Myalgic Encephalomyelitis (ME)?

The disease is best known for a state of extreme and unremitting fatigue. A range of additional symptoms may suggest the presence of an infectious disease: myalgia, nausea, cognitive disturbance, “flu-like” symptoms, sore throat, palpitations, headache, and insomnia [4]. In severe cases of ME, the patient may be bed-ridden and lose the ability to do the simplest of tasks, such as boil eggs for lunch [5] or feed themselves [6].

Diagnosing ME

Although outbreaks of possible ME have been recorded since 1955 [7], and several studies have suggested a viral or bacterial etiology, a lack of coherent understanding of etiology and pathogenesis makes the diagnosis of ME particularly difficult. Symptoms may persist for years [8] and patients in general practice settings may be sent from one specialist to another until all other potential disorders (notably Lyme disease [9] [10]) are discounted. Since most patients with ME are ultimately referred to Infectious Diseases specialists, GIDEON lists the condition in its database, allowing clinicians to run a side-by-side comparison with similar diseases.

Myalgic encephalomyelitis and Lyme Disease comparison table

 

Treatment to improve the quality of life of ME patients demands significant changes in lifestyle, such as creating a quiet, environment to help reduce the effects of hypersensitivity [11, 12].

There is currently no known cure for this condition. A variety of drugs are currently under review, including Metformin and Momordica charantia extract [13]. Newer diagnostic techniques include a nanoelectronics-blood-based diagnostic biomarker [14].

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References:

  1. McGrath, S. (2018). Analysis of data from 500,000 individuals in UK Biobank demonstrates an inherited component to ME/CFS. ME/CFS Research Review. Retrieved 7 August 2020, from https://mecfsresearchreview.me/2018/06/11/analysis-of-data-from-500000-individuals-in-uk-biobank-demonstrates-an-inherited-component-to-me-cfs/.
  2. What is ME/CFS? | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC. Cdc.gov. (2018). Retrieved 7 August 2020, from https://www.cdc.gov/me-cfs/about/index.html.
  3. What is Myalgic Encephalomyelitis (ME)?. #MEAction. (2020). Retrieved 7 August 2020, from https://www.meaction.net/about/what-is-me/.
  4. Myalgic encephalomyelitis. gideononline.com. (2020). Retrieved 7 August 2020, from https://app.gideononline.com/explore/diseases/10405.
  5. Foggy Friends Where ME/CFS Sufferers Unite Forums – Anna – The M.E Years. Foggyfriends.org. Retrieved 7 August 2020, from https://www.foggyfriends.org/forum/content.php/151-Anna-The-M-E-Years.
  6. Price, N. (2020). [Image]. Retrieved 7 August 2020, from https://25megroup.org/wp-content/uploads/2020/05/N-Price-.jpg.
  7. Royal Free Hospital. (1957). An Outbreak of Encephalomyelitis in the Royal Free Hospital Group, London, in 1955. PubMed Central (PMC). Retrieved 7 August 2020, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962472/.
  8. Foggy Friends Where ME/CFS Sufferers Unite Forums – Members Stories. Foggyfriends.org. Retrieved 7 August 2020, from https://www.foggyfriends.org/forum/content.php/9-Member-Stories.
  9. Cottle, L., Mekonnen, E., Beadsworth, M., Miller, A., & Beeching, N. (2012). Lyme disease in a British referral clinic. QJM105(6), 537-543. https://doi.org/10.1093/qjmed/hcs003
  10. Patrick, D., Miller, R., Gardy, J., Parker, S., Morshed, M., & Steiner, T. et al. (2015). Lyme Disease Diagnosed by Alternative Methods: A Phenotype Similar to That of Chronic Fatigue Syndrome. Clinical Infectious Diseases61(7), 1084-1091. https://doi.org/10.1093/cid/civ470
  11. Comhaire, F., & Deslypere, J. (2020). News and views in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): The role of co-morbidity and novel treatments. Medical Hypotheses134, 109444. https://doi.org/10.1016/j.mehy.2019.109444
  12. Chronic fatigue syndrome (CFS/ME) – Treatment. nhs.uk. (2017). Retrieved 7 August 2020, from https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/#medication.
  13. Severely Affected Patients | Clinical Care of Patients | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC. Cdc.gov. (2019). Retrieved 7 August 2020, from https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/severely-affected-patients.html.
  14. Esfandyarpour, R., Kashi, A., Nemat-Gorgani, M., Wilhelmy, J., & Davis, R. (2019). A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Proceedings Of The National Academy Of Sciences116(21), 10250-10257. https://doi.org/10.1073/pnas.1901274116

2 Responses to “What is ME – Myalgic Encephalomyelitis?”

  1. Hillary J Johnson Says:

    There are several errors in this article. First, ME outbreaks have been reported since an outbreak among staff in 1933 at the LA County Hospital in Los Angeles. There may be been earlier outbreaks that went unreported. There have been over 100 cluster epidemics or localized outbreaks around the world since then. A large epidemic, which began simultaneously with the AIDS epidemic in the early 1980s in the US and UK, quickly became a pandemic. This spread continues, and the most recent (2020) epidemiologically-based estimate of the number of people with ME worldwide is 65 million. Children younger than two years, while rare, have been dx with ME. ME can be a fatal infection in some patients, who may die because they can no longer swallow and/or are consumed by secondary infections. Lymphocyte cancers are 18 times more common in ME sufferers. Both generalized and focal lymphadenopathy is common, as are nightsweats. An uncounted but significant number of patients fall ill after receiving a blood transfusion during hospitalization for childbirth or for any number of other reasons, suggesting the pathogen that causes ME is in the blood supply of countries that have yet to ban ME sufferers from donating blood. Transmission of ME via sex is common. Conjunctivitis and all manner of eye diseases are common in ME. Hillary Johnson, author, Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. Crown, New York 1996

  2. Dr. Steve Berger Says:

    Dear Hillary, thank you for your comments. As an Infectious Diseases consultant, I am acutely aware of the lack of professional knowledge and personal suffering experienced by patients with ME. My own interests involve a Bayesian system for people with signs and symptoms of infection, and for decades, ME has been given a prominent ranking in the Differential Diagnosis list whenever relevant findings are entered by our subscribers. The background material we published was not intended as a comprehensive review of the subject – you have already accomplished that for all of us. Best wishes, Dr. Steve Berger

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