Chronic fatigue syndrome

from Wikipedia, the free encyclopedia
Classification according to ICD-10
G93.3 Chronic fatigue syndrome
  • Myalgic encephalomyelitis
  • Post-viral fatigue syndrome
ICD-10 online (WHO version 2019)

The chronic fatigue syndrome or chronic fatigue syndrome (English: chronic fatigue syndrome , abbreviated CFS ), also myalgic encephalomyelitis ( ME ), is a chronic disease, the main symptom of which is a strong physical and mental exhaustion and in extreme cases a far-reaching disability and need for care can lead. Despite unexplained causes and development mechanisms , the syndrome is internationally recognized as an independent clinical picture.

So far, dysregulations of the nervous system, the immune system or the hormonal system have been observed. Since the causes of the disease are unclear, only supportive treatment of the symptoms that is tailored to the individual patient is possible.

Estimates of the frequency indicate more than 3% for self-reported and less than 1% for medically recorded disease. Economic losses in the United States were estimated at $ 51 billion annually for the period 2004–2005.

Definitions

The term benign myalgic encephalomyelitis was first used in 1955 on the occasion of an outbreak of a novel disease among employees of the Royal Free Hospital in London. In 1959, the British doctor and later Chief Medical Officer of Great Britain, Ernest Donald Acheson , who then worked in New York, took over the name after studying 14 similar epidemics documented in different countries, which he initially considered to be an infectious disease .

In 1988, a group of experts on behalf of the Centers for Disease Control and Prevention (CDC) came out in favor of the more neutral term Chronic Fatigue Syndrome (CFS) and defined main and secondary symptoms. A revision of these definitions appeared in 1994. In addition to the main symptom - exhaustion over at least six months that cannot be explained in any other way despite thorough examination - it has eight secondary symptoms, of which at least four should be present. It was the basis for the majority of subsequent studies on CFS.

A group of experts set up by the Canadian health authority Health Canada 2003 called for a definition of exhaustion, sleep disorders, pain, at least two neurological or cognitive disorders and at least one vegetative, neuroendocrine or immunological symptom for at least six months. In 2011 a further development was published as the International Consensus Criteria (German: International Consensus Criteria ). The main symptom is post-exertional neuroimmune exhaustion (PENE, German for "neuroimmunological exhaustion after exertion"), defined as rapid physical or cognitive exhaustion after exertion, with recovery over 24 hours, which prevents the patient from at least 50% of his normal activity . The numerous possible accompanying symptoms are now divided into three main groups and twelve subgroups. There must be symptoms from at least six of these subgroups. The minimum duration of six months is no longer required.

In 2012 the International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS / ME) published the ME / CFS: Primer for Clinical Practitioners , which also contains diagnostic criteria. The document is more extensive than the others mentioned. Extensive diagnosis of all diseases associated with fatigue, sleep disorders, pain and neurocognitive dysfunction is required.

The US Institute of Medicine (IOM) published the report Beyond Myalgic Encephalomyelitis / Chronic Fatigue Syndrome in 2015 . The diagnostic criteria are essentially a reduction of the international consensus criteria mentioned above . It is expressly pointed out that CFS can occur simultaneously with other diseases. The IOM also proposes a renaming to "systemic exertion intolerance disease SEID".

The large number of inconsistent attempts at definition made by expert panels shows the difficulty of defining a disease that knows many endocrine, immunological, infection-related, muscular and neurological abnormalities, but for which there is no known cause and no direct, specific test methods for detection. but only indirect, related to individual symptoms. The accuracy or precision has not been confirmed ( validated ) for any of these sets of criteria .

distribution

In 2015, estimates of between 836,000 and 2.5 million patients were given for the United States. An estimated 84–91% of the cases were undiagnosed. A larger 1999 study of adults in Chicago compared the incidence by ethnic , age, educational, and income group. People between the ages of 30 and 45 are most likely to get sick, women three times as likely as men.

The numbers depend on the definitions used. The Robert Koch Institute (RKI) evaluated 14 studies (2005–2011) and arrived at an average frequency of 3.28% for self-reported and 0.76% for medically recorded illness.

No figures have been collected for Germany so far (as of 2016). There are "an estimated 300,000–400,000 patients with CFS, with a high number of unreported cases (diagnosis not made)".

Economic consequences

Based on data from a 1997 cross-sectional study in Wichita , Kansas, USA, losses from CFS have been estimated at $ 20,000 per sufferer per year, averaging about half of normal workload in both the household and the workplace Loss corresponded. The geographical selection was made because it was representative in many ways of the total population of the United States. Extrapolated to the United States, the loss was estimated at over $ 9 billion annually.

Another cross-sectional study from 2004 to 2005 in urban and rural areas around Atlanta and Macon , Georgia, found the average medical cost from CFS per patient per year of $ 3,286 and a loss of income of $ 8,554. Extrapolated to the US, medical costs were estimated at $ 14 billion and income foregone at $ 37 billion annually. For deviations from the Kansas study, reference was made, among other things, to different data on the spread of the disease.

Observations on possible causes

The chronic fatigue syndrome is a systemic disease with dysregulations of the nervous system , the immune system and the endocrine system , among other things . The causes and mechanisms of the development of the disease have not yet been clarified (as of 2016). It is possible that there is not a uniform clinical picture.

Biological reactions to exercise

The normal biological responses to physical exertion are disturbed in many ways. These include, among other things: no invigorating effect; higher sensitivity to pain; decreased blood supply to the brain; lower maximum heart rate ; impaired oxygen supply to muscles.

immune system

An evaluation of 23 targeted individual studies on this topic in 2014 showed clear indications that in CFS patients, in contrast to healthy comparators, there were several deviations in the reaction of the immune system to exertion.

In a study on two large multicenter - cohort studies of chronic fatigue syndrome is based, it was shown that after onset of disease, both pro-inflammatory (inflammatory) and anti-inflammatory (anti-inflammatory) cytokines are activated. The interaction of the cytokines is disrupted. Increased levels were found with interleukins ( IL-1a , IL-8 , IL-12p40 , IL-17A , IL-1RA , IL-4 , IL-13 ), with TNF-alpha and with interferon-γ . Reduced values ​​were found for the CD antigen CD40 and the platelet Derived Growth Factor BB. These changes only show up within the first three years, so that the early and late stages of the disease can be distinguished.

Brain scans

With the help of imaging methods (brain scans), possible anatomical as well as possible functional deviations in ME were examined by comparing group data from patients and comparison persons.

A systematic review from 2015 listed 39 brain scan studies from 1992 to 2015 with CFS patients and comparison groups. Deviations in the mean values ​​of the CFS group were recorded in many brain regions. However, the results of the studies were so broad and inconsistent that it was not possible to find even one deviation that could be considered indicative of CFS.

A correspondence ( correlation ) between the strength of a deviation and the severity of the disease has been established several times. There were even signs that reduced brain volume changed back towards normalization in the course of successful therapy. However, since accompanying illnesses such as depression are known to occur together with the same or similar deviations in brain scans, no peculiarities characteristic of CFS have been found in brain images so far.

Symptoms

The main symptoms of chronic fatigue syndrome are:

  • a significantly faster exhaustion through physical, intellectual or psycho-social stress than before the illness
  • as well as long-lasting exhaustion after exercise.

Even minimal stress (such as activities in everyday life or simple mental tasks) can be debilitating. The exhaustion can appear immediately after the activity or delayed after hours or days. The recovery phase after physical exertion is extended. It is often 24 hours, but it can also take days or weeks. Exhaustion and exhaustibility are not the result of unusual exertion and do not improve significantly with rest. Despite severe exhaustion, there are often problems falling and staying asleep.

In addition, there are often neurocognitive impairments that can be stress-dependent: e.g. B. Difficulty processing information, slow thinking, impaired concentration, confusion or disorientation, cognitive overload, difficulty making decisions, slow speech, dyslexia , difficulty finding words, difficulty with short term memory.

A disturbed orthostasis reaction was often observed , which in healthy people ensures that the cardiovascular system functions properly even in an upright position.

Due to the mutually influencing dysregulations of the nervous system, the immune system and the hormonal (endocrine) system, a large number of very different further symptoms can occur.

diagnosis

The diagnosis of CFS is based primarily on clinical symptoms.

A large number of somatic (e.g. chronic infectious diseases, multiple sclerosis , endocrinological disorders) and psychological (e.g. burn-out ) or psychosomatic diseases, which can also trigger CFS symptoms, must be considered in the differential diagnosis . There is also an overlap with depression and somatoform disorders . The treatment approaches used (antidepressants - albeit controversial, psychotherapy, exercise therapy) also overlap. In a review article from 2017, the opinion was expressed that there is no reliable evidence for the existence of CFS as an independent clinical picture nor for a uniform development model.

Symptom-based diagnostic schemes

Catalog of criteria from 2011

Carruthers and others published their diagnostic criteria known as the International Consensus Criteria (ICC) in 2011 , revising and updating the diagnostic criteria known as the 2003 Canadian Consensus Document-

The essential main symptom is the “neuroimmunological exhaustion after exertion” (English: post-exertional neuroimmune exhaustion , PENE). For this purpose, at least seven secondary symptoms are required, which are arranged in groups:

  1. neurological impairments (at least one symptom each from three of the following four categories)
    1. neurocognitive impairments, e.g. B. Information processing or short-term memory
    2. Pain: headache, pain in muscles, tendons, joints, stomach or chest
    3. Sleep disorders: disturbed sleep patterns, unrefreshing sleep
    4. neurosensory perception or movement disorders
  2. immunological, gastrointestinal or urogenital impairments (at least one symptom each from three of the following five categories)
    1. flu-like symptoms, chronic or repeated, activated or aggravated by exercise
    2. Susceptibility to viral infections, prolonged recovery periods
    3. gastrointestinal complaints
    4. urogenital complaints
    5. Intolerance to food, medication, odors or chemicals
  3. Impairment of energy production / transport (at least one symptom)
    1. cardiovascular, e.g. B. Orthostatic intolerance
    2. breath-related
    3. Loss of thermal stability (feeling cold, hot flashes, etc.)
    4. Intolerance to temperature extremes

Diagnostic scheme from 2015

Algorithm for the diagnosis of chronic fatigue syndrome

At the beginning of 2015, the Institute of Medicine put a diagnostic scheme up for discussion, according to which the following three symptoms must be present:

  1. A considerable impairment of the ability to work in professional, school, social and personal areas as before the illness, which lasts longer than six months and is accompanied by exhaustion that is often severe, is new or has a concrete beginning ( does not exist for life). Exhaustion is not the result of strenuous exertion and does not improve significantly with rest.
  2. Post-exertional malaise, PEM for short
  3. Not restful sleep

In addition, at least one of the following two symptoms must be present:

  1. Cognitive impairment
  2. Orthostatic intolerance, i.e. difficulty in remaining in an upright position for a long time.

Degrees of severity

For the diagnosis of chronic fatigue syndrome , the severity of the symptoms must lead to a considerable reduction in the patient's level of activity, measured against the previous subjective level of activity. Chronic fatigue syndrome is diagnosed when the activity level averages 50% or less. At least 25% of the sick cannot leave their apartment at least once in their life or are even bedridden.

In the aforementioned catalog of criteria from 2011, the disease is divided into four levels:

  1. Light: approximately a 50 percent decrease in activity level
  2. Moderate: mostly chained to the house
  3. Difficult: mostly tied to bed
  4. Very difficult: completely confined to bed and dependent on help with basic activities.

therapy

So far (as of 2016) there is no specific treatment for CFS. Therefore, supportive treatment of the symptoms that is adapted to the patient is recommended.

Adapted endurance training (Graded Exercise Therapy, GET), 15–30 min, 5 days / week, 12 sessions in 6 months, and adapted cognitive behavioral therapy (CBT) have shown to be limited in studies for some of the patients proven effective. However, some of these studies are controversial because patient selection was based on definitions of the disease, which in turn are controversial. GET and CBT are viewed as potentially harmful by some patient organizations as they could cause overwork and exacerbation in some people. Instead, they promote an energetic adaptation to the disease (Adaptive Pacing Therapy, APT). While the effectiveness of GET and CBT has repeatedly been positively rated, sufficient reports on the effectiveness of APT are not yet available (as of 2016).

Course and prognosis

The course of the untreated disease was examined in an evaluation of 14 studies that appeared in 1991–1999. Initial examinations were compared with follow-up examinations after several years. Across all studies, full recovery was 0–31% ( median 5%) and partial recovery was 8–63% (median 39.5%). A return to work at the time of the follow-up examination was 8–30% in the three studies that examined this question.

Controversy over the name of the disease

The name of the disease has been controversial since it was first described in the 1950s, with the terms “chronic fatigue syndrome” (CFS) and “myalgic encephalomyelitis” (ME) having become widely accepted.

The original name benign myalgic encephalomyelitis from 1955 (see above) was chosen because an infection was suspected to be similar to that of poliomyelitis , but without paralysis - hence the addition benign (benign). The term “chronic fatigue syndrome”, which became more common later, aims to emphasize the fatigue that characterizes the symptoms of the disease .

However, the use of these terms continues to be criticized. Since the 1990s it has been repeatedly pointed out that the term encephalomyelitis is wrong and misleading because inflammation of the brain and spinal cord has never been proven. This point of criticism was also raised in a statement by the Institute of Medicine (IOM) from 2015, which was well received in the specialist press and the media :

"The committee deemed the term" myalgic encephalomyelitis, "although commonly endorsed by patients and advocates, to be inappropriate because of the general lack of evidence of brain inflammation in ME / CFS patients, ..."

The IOM report also cited criticism of the term "chronic fatigue syndrome". From the point of view of some patients, the term is trivializing, often leads to stigmatization and does not make it sufficiently clear that it is an actual illness. The authors agreed that the term often had this effect and should no longer be used. Instead, the new name Systemic Exertion Intolerance Disease was proposed, which has often been used in addition since then, but has not replaced the established terms.

Additional burden due to medical incomprehension

Due to the unclear and controversial definitions of the disease, many doctors are not or insufficiently trained to recognize it. That is why, for decades, patients have been complaining not only of enormous difficulties in getting a correct diagnosis at all, but also of mistrust, accusations and disparagement on the part of some doctors. As a result, many patients were often more or less excluded from the health system facilities for years, organized themselves and published violent allegations and debates on the Internet. This went so far that the conflicts on the part of medical sociology were even classified as institutionalized and costly struggles: "The result is the maintenance of these very expensive struggles for all involved."

Public campaigns

International ME / CFS day

Florence Nightingale

Since 1995, the “International ME / CFS / CFIDS Awareness Day” has taken place on May 12th every year in many countries around the world. The date commemorates the birthday of the English nurse and statistician Florence Nightingale . She had had a CFS-like condition since she was 35 years old, which confined her to bed for 50 years.

Spark!

In 2006 and 2007, the Centers for Disease Control and Prevention (CDC) carried out a media and education campaign in the USA under the name “ Spark! “(German: 'Funke') through. The aim was to inform the public as well as members of the health and legal system about the chronic fatigue syndrome and to make them aware of the severity of the invisible illness and the problems of the sick.

Movies

  • I Remember Me , a film by Kim A. Snyder, documentary about the social misunderstanding of the disease, USA 2000, Youtube
  • The tired striker , a film by Tom Theunissen about football professional Olaf Bodden , who is suffering from chronic fatigue syndrome, from the ZDF series 37 Grad , Germany 2000, Youtube
  • Voices from the Shadows , a film by Josh Biggs and Natalie Boulton about the sometimes scandalous way people deal with chronic exhaustion syndrome , Great Britain 2011, website
  • Forgotten Plague , a film by Ryan Prior and Nicole Castillo, USA 2015, website
  • Unrest , a film by Jennifer Brea, USA / Denmark / Great Britain 2017, website
  • Perversely Dark , a crushing film about two young people severely affected by CFS by Pål Winsents (Norway 2014), Vimeo (password: fenomen)

See also

literature

Guidelines

  • US Department of Health & Human Services: International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis: Chronic fatigue syndrome / myalgic encephalomyelitis. A primer for clinical practitioners , 2012, PDF (accessed October 22, 2016).
  • National Institute for Health and Care Excellence (NICE), Great Britain: Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): diagnosis and management . Clinical Guideline. Published: August 22, 2007, PDF (accessed October 22, 2016).
  • Bruce M. Carruthers, Marjorie I. van de Sande: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners - An Overview of the Canadian Consensus Document. Overview from 2005 on the Guidelines of 2003, PDF (accessed October 22, 2016).

Research overviews

  • LA Jason, ML Zinn, MA Zinn: Myalgic Encephalomyelitis: Symptoms and Biomarkers. In: Current neuropharmacology. Volume 13, Number 5, 2015, pp. 701-734. PMID 26411464 , PMC 4761639 (free full text) (review).
  • FN Twisk: Accurate diagnosis of myalgic encephalomyelitis and chronic fatigue syndrome based upon objective test methods for characteristic symptoms. In: World journal of methodology. Volume 5, Number 2, June 2015, pp. 68–87, doi: 10.5662 / wjm.v5.i2.68 . PMID 26140274 , PMC 4482824 (free full text) (review).
  • BDJ Torpy, M. Saranapala: Chronic Fatigue Syndrome. In: LJ De Groot, P. Beck-Peccoz, G. Chrousos, K. Dungan, A. Grossman, JM Hershman, C. Koch, R. McLachlan, M. New, R. Rebar, F. Singer, A. Vinik , MO Weickert (Ed.) Endotext [Internet]. South Dartmouth (MA): MDText.com. Inc .; 2000-. Last updated 2014 Nov 20. PMID 25905324 (free full text) (review).
  • DB Fischer, AH William, AC Strauss, ER Unger, L. Jason, GD Marshall, JD Dimitrakoff: Chronic Fatigue Syndrome: The Current Status and Future Potentials of Emerging Biomarkers. In: Fatigue: biomedicine, health & behavior. Volume 2, number 2, June 2014, pp. 93-109, doi: 10.1080 / 21641846.2014.906066 . PMID 24932428 , PMC 4052724 (free full text) (review).
  • J. Nijs, A. Nees, L. Paul, M. De Kooning, K. Ickmans, M. Meeus, J. Van Oosterwijck: Altered immune response to exercise in patients with chronic fatigue syndrome / myalgic encephalomyelitis: a systematic literature review. In: Exercise immunology review. Volume 20, 2014, pp. 94-116. PMID 24974723 (free full text) (review).

Introductions

  • 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. National Academies Press (US), Washington (DC), February 10, 2015. PMID 25695122 (free full text) (review).
  • BM Carruthers, MI van de Sande, KL De Meirleir, NG Klimas, G. Broderick, T. Mitchell, D. Staines, AC Powles, N. Speight, R. Vallings, L. Bateman, B. Baumgarten-Austrheim, DS Bell , N. Carlo-Stella, J. Chia, A. Darragh, D. Jo, D. Lewis, AR Light, S. Marshall-Gradisbik, I. Mena, JA Mikovits, K. Miwa, M. Murovska, ML Pall, S. Stevens: Myalgic encephalomyelitis: International Consensus Criteria. In: Journal of internal medicine. Volume 270, number 4, October 2011, pp. 327-338, doi: 10.1111 / j.1365-2796.2011.02428.x . PMID 21777306 , PMC 3427890 (free full text) (review).
  • Alexandra Martin: Chronic Exhaustion and Chronic Exhaustion Syndrome. In: Winfried Rief , Peter Henningsen: Psychosomatik und Behavioral Medicine, Schattauer, Stuttgart 2015, ISBN 978-3-7945-3045-8 , pp. 676–690, preview Google Books (accessed October 24, 2016).
  • C. Scheibenbogen, H.-D. Volk, P. Grabowski, K. Wittke, C. Giannini, B. Hoffmeister, L. Hanitsch: Chronic Fatigue Syndrome: Today's Presentation on Pathogenesis, Diagnostics and Therapy. In: Daily praxis - Die Zeitschrift für Allgemeinemedizin, Issue 55, 2014, pp. 567-574, PDF (accessed October 25, 2016).
  • Alexandra Martin, Martin Härter, Peter Henningsen, Wolfgang Hiller, Birgit Kröner-Herwig, Winfried Rief : Chronic Exhaustion Syndrome. In: Same: Evidence-based guideline on the psychotherapy of somatoform disorders and associated syndromes. Volume 4 of Evidenzbasierte Linien Psychotherapie , Hogrefe, Göttingen 2013, ISBN 978-3-8409-2524-5 , pp. 92-107, preview Google Books (accessed October 24, 2016).

Web links

Commons : Myalgic Encephalomyelitis (ME)  - Collection of images, videos and audio files

Individual evidence

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  23. ^ DB Fischer, AH William, AC Strauss, ER Unger, L. Jason, GD Marshall, JD Dimitrakoff: Chronic Fatigue Syndrome: The Current Status and Future Potentials of Emerging Biomarkers. In: Fatigue: biomedicine, health & behavior. Volume 2, number 2, June 2014, pp. 93-109, doi: 10.1080 / 21641846.2014.906066 . PMID 24932428 , PMC 4052724 (free full text) (review).
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