Myalgic Encephalomyelitis

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome ME / CFS

ME / CFS is one of the last major diseases that are hardly explored. Myalgic Encephalomyelitis / Chronic Fatigue Syndrome is a severe neuroimmunological disorder that often results in a high degree of physical disability. Worldwide, about 17 million people are affected. In Germany it is estimated up to 240,000. This makes ME / CFS relatively widespread. WHO has classified ME / CFS as a neurological disorder since 1969.

ME / CFS sufferers suffer from severe fatigue (physical weakness), which severely limits the level of activity, with neurocognitive, autonomic and immunological symptoms.

Typical of ME / CFS is the post-exertional malaise, a pronounced and prolonged enhancement of all symptoms after minor physical and mental exertion. The post-exertional malaise causes marked weakness, muscle pain, flu symptoms and worsening of the general condition. It typically occurs after just a few steps, like walking a few steps. Even small activities such as brushing your teeth, showering or cooking can be torture; Running errands in the supermarket then force you to bed for days. For the seriously and severely affected, the PEM can already be triggered by turning around in bed or the presence of another person in the room.

In addition to the post-exertional malaise affected suffer from symptoms of the autonomic nervous system such as palpitations, dizziness, dizziness and blood pressure fluctuations. Many affected people can not stand or sit for a long time. Medically one speaks of the orthostatic intolerance.

In addition, there are immunological symptoms such as a strong malaise, painful and swollen lymph nodes, sore throat, respiratory infections and increased susceptibility to infection.

Many sufferers also suffer from marked pain such as muscle and joint pain and headaches of a new type. There are also muscle twitches and cramps, massive sleep disturbances and neurocognitive symptoms such as concentration, memory and word finding disorders (often referred to as "brain fog") and hypersensitivity to sensory stimuli. The very seriously affected must therefore often lie in darkened rooms and can only communicate with relatives in a whisper.

According to a study by Aalborg University, 2015, the quality of life of ME / CFS sufferers is often lower than that of multiple sclerosis, stroke or lung cancer patients. A quarter of all patients can not leave the house, many are bedridden and need care. An estimated 60 percent are unable to work.

Often the disease begins acutely after a severe infection, but also creeping courses are known.

The exact causes of the disease are still unclear. Recent studies indicate a possible autoimmune disease and a serious disorder of energy metabolism. Also viral infections, such as the Epstein-Barr virus, are discussed as triggers.

A biomarker for a clear diagnosis is missing so far. The diagnosis is therefore based on the exclusion of other diseases and established clinical criteria catalogs. There is no approved curative treatment or cure for ME / CFS.

symptoms

The following list is based on the description of the symptoms of ME / CFS in the Canadian Consensus Criteria for Clinicians (2005) and the Report of the Institute of Medicine (2015). The list of symptoms does not claim to be exhaustive, but describes the most common symptoms. Not every ME / CFS sufferer has all the symptoms listed. The occurrence, type and intensity of the symptoms can vary from person to person.

 (1) Post-Excessional Malaise (PEM)

 (2) Chronic fatigue

 (3) Orthostatic Intolerance (OI)

 (4) Neurocognitive symptoms

 (5) Neurological symptoms

 (6) Increased susceptibility to infection

 (7) Immunological symptoms

 (8) sleep disorders

 (9) muscle aches, fasciculations and cramps

 (10) headache

 (11) vision problems

Different names for ME / CFS

Chronic Fatigue Syndrome (CFS)
The name was introduced in 1988 by the Centers of Disease Control and Prevention (CDC). In 1984, the US Department of Health investigated the onset of a chronic flu-like illness at Lake Tahoe in Nevada. The Commission linked the outbreak to the Epstein-Barr virus. In 1988 she introduced Chronic Fatigue Syndrome for Chronic Epstein-Barr Virus Syndrome. In Germany, the terms chronic fatigue syndrome or chronic fatigue syndrome are also used. This is problematic because fatigue in medicine is a morbid fatigue and is therefore to be distinguished from fatigue. The name Chronic Fatigue Syndrome has always been controversial among physicians and patients because it contributes to the stigmatization and de minimization of ME / CFS as a simple fatigue and fatigue, and does not describe the severity of the disease or the complex symptoms. CFS is mainly used in the US and continental Europe.

Myalgic encephalomyelitis (ME)
The term was coined by the British physician Melvin Ramsay following an outbreak at the Royal Free Hospital in London. Approximately In the summer of 1955, 300 doctors and nurses developed severe neurological symptoms with persistent muscle weakness over several months. The name means in ancient Greek "inflammation of the brain and spinal cord with muscle involvement." Many patients and doctors prefer the term, as it better reflects the severity of the symptoms than CFS. Although some studies indicate inflammation in the central nervous system, the definitive proof for a comprehensive inflammation of the central nervous system is still available today. ME is mainly used in the UK and Scandinavian countries.

ME / CFS
In recent years, among some scientists and doctors who are biomedically exploring ME / CFS, the hybrid term ME / CFS prevailed. This is mainly used because the common clinical criteria of ME and CFS overlap. In addition, some doctors assume that ME and CFS are the same disease because the symptoms are very similar. Therefore, until the etiopathology is clarified, some scientists use the hybrid ME / CFS.

Systemic Exertion Intolerance Disease (SEID)
In 2015, the American Institute of Medicine (now the National Academy of Medicine) proposed the name SEID. This stands for Systemic Exertion Intolerance Disease, in English Systemic Exposure Intolerance Disease. The IOM wanted to emphasize this name especially the pronounced stress intolerance or post-exertional malaise of ME / CFS patients. However, the name has not prevailed in science and practice until today.

Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
Another name for ME / CFS, which indicates the immunodeficiencies associated with the disease. The name was used in the 90s in the US, but has not clinically prevailed. Is hardly used today.

References

1. Scheibenbogen (2014), Chronisches Fatigue-Syndrom. Heutige Vorstellung zur Pathogenese, Diagnostik und Therapie, tägl. prax. 55, 567–574, Hans Marseille Verlag GmbH, München.
2. ICD-10 G.93.3.
3. Carruthers B , van de Sande M (2005), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners, An Overview of the Canadian Consensus Document, The National Library of Canada.
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5. Siehe Fn. 3.
6. Institute of Medicine (2015), Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, National Academies Press, Washington, DC
7. Hvidberg et al. (2015), The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), PlosOne, DOI: 10.1371/journal.pone.0132421.
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9. Bateman (2014), Chronic fatigue syndrome and comorbid and consequent conditions: evidence from a multi-site clinical epidemiology study, Fatigue: Biomedicine, Health & Behavior, DOI:10.1080/21641846.2014.978109.
10. Fluge et al. (2015), B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with RTX Maintenance Treatment, PlosOne, DOI: 10.1371/journal.pone.0129898.
11. Bradley et al. (2012), Altered functional B cell subset populations in patients with chronic fatigue syndrome compared to healthy controls, Clinical and Experimental Immunology 172: 73–80, doi:10.1111/cei.12043.
12. Fluge Ø et al. (2017) Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome, JCI Insight. 2017;1(21):e89376. doi:10.1172/jci.insight.89376.
13. Loebel M, Strohschein K, Giannini C, Koelsch U, Bauer S, et al. (2014), Deficient EBV-Specific B- and T-Cell Response in Patients with Chronic Fatigue Syndrome, PLoS ONE 9(1): e85387, doi:10.1371/journal.pone.0085387.
14. Siehe Fn. 3 und 6.
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16. Holmes et al. (1988), Chronic fatigue syndrome: a working case definition, Ann Intern Med. 1988 Mar;108(3):387-9, DOI: 10.7326/0003-4819-108-3-387.
17. Siehe Fn. 6.
18. Ramsey et al (1955), An Outbreak of Encephalomyelitis in the Royal Free Hospital Group, Br Med J 1957;2:895, DOI:https://doi.org/10.1136/bmj.2.5050.895.
19. Carruthers et al (2011), Myalgic encephalomyelitis: International Consensus Criteria, J Intern Med. 2011 Oct;270(4):327-38, DOI: 10.1111/j.1365-2796.2011.02428.x.
20. Nakatomi et al (2014), Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An ¹¹C-(R)-PK11195 PET Study, J Nucl Med. 2014 Jun;55(6):945-50, DOI: 10.2967/jnumed.113.131045.
21. Abigail et al (2013), Contrasting Case Definitions: The ME International Consensus Criteria vs. the Fukuda et al. CFS Criteria, N Am J Psychol. 2013 Mar 1; 15(1): 103–120.
22. Siehe Fn. 6.
23. http://me-pedia.org/wiki/CFIDS, abgerufen am 08. Oktober 2017.