Clinical descriptions of ME/CFS

Last updated

Chart comparing the different definitions of CFS ME-CFS Diagnostic Criteria Comparison.webp
Chart comparing the different definitions of CFS

Clinical descriptions of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) vary. Different groups have produced sets of diagnostic criteria that share many similarities. The biggest differences between criteria are whether post-exertional malaise (PEM) is required, and the number of symptoms needed. [1]

Contents

The pathology of ME/CFS is poorly understood, and it can be a difficult condition to diagnose because there is no standard test, many symptoms are non-specific, and because doctors and patients may be unfamiliar with post-exertional malaise. [1] [2] Subgroup analysis suggests that, depending on the applied definition, CFS may represent a variety of conditions rather than a single disease entity. [3] [4]

Definitions

Chart from the CDC explaining the IOM criteria Could You Have MECFS.webp
Chart from the CDC explaining the IOM criteria

2015 IOM criteria

The IOM criteria come from the IOM's 2015 report on CFS, and the CDC currently uses this definition. [5] The IOM criteria require the following three symptoms:

Also, at least one of the following is required:

They also note that for all symptoms except orthostatic intolerance, "frequency and severity of symptoms should be assessed," and that these symptoms should be present at least half the time with at least moderate severity. [6]

CDC 1994 criteria

The 1994 research guidelines were proposed by the "International Chronic Fatigue Syndrome Study Group", led by the Centers for Disease Control and Prevention. [7] [8] The criteria were described as the most widely used diagnostic criteria for CFS in 2007. [9] These criteria are sometimes called the "Fukuda definition" after the first author (Keiji Fukuda) of the publication. The 1994 CDC criteria specify the following conditions must be met:

Primary symptoms

Clinically evaluated, unexplained, persistent or relapsing chronic fatigue that is:[ citation needed ]

Additional requirements

The concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue:[ citation needed ]

  1. self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities;
  2. sore throat;
  3. tender cervical or axillary lymph nodes;
  4. muscle pain;
  5. multi-joint pain without joint swelling or redness;
  6. headaches of a new type, pattern, or severity;
  7. unrefreshing sleep;
  8. post-exertional malaise lasting more than 24 hours.
Final requirement

All other known causes of chronic fatigue must have been ruled out, specifically clinical depression, side effects of medication, eating disorders and substance abuse.

The clinical evaluation should include:[ citation needed ]

  1. A thorough history that covers medical and psychosocial circumstances at the onset of fatigue; depression or other psychiatric disorders; episodes of medically unexplained symptoms; alcohol or other substance abuse; and current use of prescription and over-the-counter medications and food supplements;
  2. A mental status examination to identify abnormalities in mood, intellectual function, memory, and personality. Particular attention should be directed toward current symptoms of depression or anxiety, self-destructive thoughts, and observable signs such as psychomotor retardation. Evidence of a psychiatric or neurologic disorder requires that an appropriate psychiatric, psychological, or neurologic evaluation be done;
  3. A thorough physical examination;
  4. A minimum battery of laboratory screening tests, including complete blood count with leukocyte differential; erythrocyte sedimentation rate; serum levels of alanine aminotransferase, total protein, albumin, globulin, alkaline phosphatase, calcium, phosphorus, glucose, blood urea nitrogen, electrolytes, and creatinine; determination of thyroid-stimulating hormone; and urinalysis.

Other diagnostic tests have no recognized value unless indicated on an individual basis to confirm or exclude a differential diagnosis, such as multiple sclerosis.

CDC 1988 criteria

The initial chronic fatigue syndrome definition was published in 1988. It is also called the "Holmes definition", after the manuscript's first author. [10]

The Homes criteria require these two points:

They define 11 symptom criteria:

And three physical criteria that must be documented by a physician:

To make a diagnosis, a patient must meet either 8 of the 11 symptom criteria, or 6 of the 11 symptom criteria and 2 of 3 physical criteria. [10]

Oxford 1991 criteria

The Oxford criteria were published in 1991 [11] and include both CFS of unknown etiology and a subtype of CFS called post-infectious fatigue syndrome (PIFS), which "either follows an infection or is associated with a current infection." The Oxford criteria defines CFS as follows:

Post-infectious fatigue syndrome also requires evidence of a prior infection. [11]

The Oxford criteria differ from the Fukuda criteria in that mental fatigue is required and that symptoms that could be psychiatric in origin can count toward a diagnosis. Likewise, the Oxford criteria differs from the Canadian consensus criteria by not excluding patients who may have a psychiatric condition. [9]

Canadian consensus criteria

The Canadian consensus criteria were initiated by Health Canada and published by an international group of researchers in 2003. [12] The requirements are summarized as follows:

Unlike some criteria, the Canadian consensus criteria exclude patients with symptoms of mental illness. [9] This definition was updated in 2010 to provide greater specification to the original. Functional impairment must be below defined thresholds in two of the three designated subscales of the Short Form 36 Health Survey i.e. Vitality, Social Functioning, and Role-Physical.[ citation needed ]

London criteria

The London Criteria were designed for research purposes and used by Action for ME in all studies they funded until the mid-1990s. An incomplete version edited by Nick Anderson (CEO of AFME) was published in a 1994 report. The London criteria require the following:

These symptoms must have lasted at least 6 months. The London criteria also mention that other symptoms, including autonomic and immune symptoms, are common and may help confirm a diagnosis. [13] In light of the advances in understanding of ME and CFS, the criteria for ME as described by Ramsay and others were updated in 2009. [14] [ unreliable source ] These have been cited in articles and are being evaluated as of 2011, for example, in studies to ascertain differences between patients selected using different case definitions. [15]

International Consensus Criteria

The International Consensus Criteria were based on the Canadian consensus criteria and developed by a group of 26 individuals from 13 countries and consisting of clinicians, researchers, teaching faculty, and an independent patient advocate. The ICC define the illness as:

The ICC definition also notes that children may have somewhat different symptoms, and that symptoms tend to be more variable. [16]

Compared to the Canadian criteria, chronic fatigue is not required, and there is no requirement for symptoms to occur for 6 months. The main symptom is "post-exertional neuroimmune exhaustion" (PENE), which encompasses fatigability, symptoms worsening after exertion, exhaustion after exertion, a prolonged recovery from activity, and reduction of activities due to symptoms. The ICC definition describes severity levels: Mild ME is described as roughly a 50% in functioning compared to before the illness, moderate ME makes one mostly housebound, severe refers to mostly bed-bound, and a very severe being completely bed-bound and requiring care from others. [16]

National guidelines

Several countries, including Australia [17] and the United Kingdom, have authored clinical guidelines that define ME/CFS based on some or all of the available diagnostic criteria. The 2021 UK NICE guideline requires all of the following symptoms:

Additionally, the symptoms must be present for at least 6 weeks in adults and 4 weeks in children, and not explained by another condition. [18]

Testing

As there is no generally accepted test for chronic fatigue syndrome, diagnosis is based on symptoms, history, and ruling out other conditions. [19]

The CDC states that diagnostic tests should be directed to confirm or exclude other causes for fatigue and other symptoms. Further tests may be individually necessary to identify underlying or contributing conditions that require treatment. The following routine tests are recommended: [19]

In addition to the CDC's recommendation, the NICE guideline recommends HbA1c and creatine kinase tests, and mentions that blood tests for vitamins D and B12, infectious diseases, and adrenal insufficiency may be warranted. [18]

Diagnostic complications and suggested improvements

The National Institute for Health and Clinical Excellence (NICE) in England and Wales that in the absence of a biomarker, it is difficult to say one set of criteria is more valid than another. The quality can be assessed based on how the case definition was created. In particular, to what extend it represented a consensus process and involved stakeholders such as patients, doctors and researchers. [20] : 47 

CDC 1994

A 2003 international CFS study group for the CDC found ambiguities in the CDC 1994 CFS research case definition which contribute to inconsistent case identification. [21] Different self-reported causes of CFS are associated with significant differences in clinical measures and outcomes. [22]

An examination of the CDC 1994 criteria applied to several hundred patients found that the diagnosis could be strengthened by adding two new symptoms (anorexia and nausea) and eliminating three others (muscle weakness, joint pain, sleep disturbance). [23] Other suggested improvements to the diagnostic criteria include the use of severity ratings. [24]

CDC "Empirical definition" 2005

A new "empirical definition" of the CDC 1994 criteria was published in 2005. [25] A 2009 evaluation of the 2005 empirical definition compared 27 patients with a prior diagnosis of CFS with 37 patients diagnosed with a Major Depressive Disorder. The researchers reported that "38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition." [26]

Related Research Articles

<span class="mw-page-title-main">Fatigue</span> Range of afflictions, usually associated with physical or mental weakness

Fatigue describes a state of tiredness, exhaustion or loss of energy.

<span class="mw-page-title-main">ME Association</span> UK charitable organization

The ME Association is a UK health charitable organization that provides information, advocacy, and services to persons and families affected by ME/CFS, and raises funds for research into ME/CFS. It has been reported to be one of the two largest UK charities for ME/CFS.

Clouding of consciousness, also called brain fog or mental fog, occurs when a person is slightly less wakeful or aware than normal. They are less aware of time and their surroundings, and find it difficult to pay attention. People describe this subjective sensation as their mind being "foggy".

<span class="mw-page-title-main">History of ME/CFS</span> Review of the topic

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has a long history with an evolution in medical understanding, diagnoses and social perceptions.

Management of ME/CFS focusses on symptoms management, as no treatments that address the root cause of the illness are available. Pacing, or regulating one's activities to avoid triggering worse symptoms, is the most common management strategy for post-exertional malaise. Clinical management varies widely, with many patients receiving combinations of therapies.

<span class="mw-page-title-main">Controversies related to ME/CFS</span> Controversies and issues related to ME/CFS

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness with a history of controversy. Although it is classified as an organic disease, it was historically assumed to be psychosocial, and a minority of medical professionals still hold this view. The pathophysiology of ME/CFS remains unclear, there exists many competing diagnostic criteria, and some proposed treatments are controversial. There is a lack of awareness about the condition, which has led to substantiated accusations of patient neglect and harm.

The Lightning Process (LP) is a three-day personal training programme developed and trademarked by British osteopath Phil Parker. It makes unsubstantiated claims to be beneficial for various conditions, including ME/CFS, depression and chronic pain.

Graded exercise therapy (GET) is a programme of physical activity that starts very slowly and gradually increases over time, intended as a treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Most public health bodies, including the CDC and NICE, consider it ineffective, and its safety is disputed. However, GET still enjoys support among a minority of clinicians and organizations.

David Sheffield Bell is an American physician who has done extensive research on the clinical aspects of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). He has also conducted evaluations and research in pediatric ME/CFS and written numerous articles about the condition.

Daniel Peterson is an American physician in private practice in the state of Nevada, and has been described as a "pioneer" in the treatment of chronic fatigue syndrome (CFS). He graduated from the University of Rochester School of Medicine, Rochester, New York, in 1976 and was an intern and resident at the University of Utah Medical Center from 1976 to 1979. In 1979, he became a diplomate of the American Board of Internal Medicine. He is president of Sierra Internal Medicine of Incline Village, established in 1981.

<span class="mw-page-title-main">Myalgic encephalomyelitis/chronic fatigue syndrome</span> Chronic medical condition

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating long-term medical condition. People with ME/CFS experience delayed worsening of the illness after minor physical or mental activity, which is the hallmark symptom of the illness. Other core symptoms are a greatly reduced ability to do tasks that were previously routine, severe fatigue that does not improve much with rest, and sleep disturbances. Further common symptoms include dizziness or nausea when sitting or standing, along with memory and concentration issues and pain.

Rosamund Vallings is a medical doctor, known as one of the leading authorities on Chronic Fatigue Syndrome (ME/CFS) in New Zealand.

<span class="mw-page-title-main">Post-exertional malaise</span> Worsening of symptoms with activity

Post-exertional malaise (PEM), sometimes referred to as post-exertional symptom exacerbation (PESE) or post-exertional neuroimmune exhaustion (PENE), is a worsening of symptoms that occurs after minimal exertion. It is the hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and common in long COVID and fibromyalgia PEM is often severe enough to be disabling, and is triggered by ordinary activities that healthy people tolerate. Typically, it begins 12–48 hours after the activity that triggers it, and lasts for days, but this is highly variable and may persist much longer. Management of PEM is symptom-based, and patients are recommended to pace their activities to avoid triggering PEM.

Idiopathic chronic fatigue (ICF) or chronic idiopathic fatigue or insufficient/idiopathic fatigue is a term used for cases of unexplained fatigue that have lasted at least six consecutive months and which do not meet the criteria for Myalgic Encephalomyelitis/chronic fatigue syndrome. Such fatigue is widely understood to have a profound effect on the lives of patients who experience it.

Long COVID or long-haul COVID is a group of health problems persisting or developing after an initial period of COVID-19 infection. Symptoms can last weeks, months or years and are often debilitating. The World Health Organization defines long COVID as starting three months after the initial COVID-19 infection, but other agencies define it as starting at four weeks after the initial infection.

<span class="mw-page-title-main">DecodeME</span> Genetic study on ME/CFS

DecodeME is an ongoing genome-wide association study searching for genetic risk factors for ME/CFS. With a planned recruitment of 25,000 patients, it is expected to be the largest such study to date. Recruitment closed on 15 November 2023 and results are expected in 2024.

<span class="mw-page-title-main">2-day CPET</span> Medical test for post-exertional malaise

A 2-day CPET is a cardiopulmonary exercise test given on two successive days to measure the effect of post-exertional malaise (PEM) on a patient's ability to exercise. PEM is a cardinal symptom of myalgic encephalomyelitis/chronic fatigue syndrome and is common in long COVID as well.

Post-acute infection syndromes (PAISs) or post-infectious syndromes are medical conditions characterized by symptoms attributed to a prior infection. While it is commonly assumed that people either recover or die from infections, long-term symptoms—or sequelae—are a possible outcome as well. Examples include long COVID, chronic fatigue syndrome (ME/CFS), and post-Ebola virus syndrome. Common symptoms include post-exertional malaise (PEM), severe fatigue, neurocognitive symptoms, flu-like symptoms, and pain. The pathology of most of these conditions is not understood and management is generally symptomatic.

Andrew Melvin Ramsay (1901–1990) was a British physician, who is known for his research and advocacy on myalgic encephalomyelitis (ME), a chronic disease causing muscle weakness and cognitive dysfunction. Ramsay worked as a consultant at the Royal Free Hospital in London during a mysterious 1955 disease outbreak of what later became known as ME. He studied the disease and similar outbreaks elsewhere. Work by Ramsay showed that although ME seldom caused death, the disease could be highly disabling.

The PACE trial was a large and controversial trial which compared the effects of cognitive behavioural therapy (CBT), graded exercise therapy (GET), adaptive pacing therapy, and specialist medical care for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

References

  1. 1 2 "Understanding History of Case Definitions and Criteria | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC". www.cdc.gov. 19 November 2019. Retrieved 3 July 2022.
  2. ↑ Davis, Hannah E.; McCorkell, Lisa; Vogel, Julia Moore; Topol, Eric J. (2023). "Long COVID: major findings, mechanisms and recommendations". Nature Reviews Microbiology. 21 (3): 133–146. doi: 10.1038/s41579-022-00846-2 . ISSN   1740-1534. PMC   9839201 .
  3. ↑ Jason LA, Corradi K, Torres-Harding S, Taylor RR, King C (March 2005). "Chronic fatigue syndrome: the need for subtypes". Neuropsychol Rev. 15 (1): 29–58. doi: 10.1007/s11065-005-3588-2 . PMID   15929497. S2CID   8153255.
  4. ↑ Jason LA, Taylor RR, Kennedy CL, Song S, Johnson D, Torres S (September 2000). "Chronic fatigue syndrome: occupation, medical utilization, and subtypes in a community-based sample". J. Nerv. Ment. Dis. 188 (9): 568–76. doi:10.1097/00005053-200009000-00002. PMID   11009329.
  5. ↑ "IOM 2015 Diagnostic Criteria | Diagnosis | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC". www.cdc.gov. 27 April 2021. Retrieved 3 July 2022.
  6. ↑ Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness (PDF). National Academy of Medicine. 2015. p. 210. ISBN   978-0-309-31689-7.
  7. ↑ "About CFS: What is Chronic Fatigue Syndrome?". National Institutes of Health. Archived from the original on 16 February 2013. Retrieved 27 June 2009.
  8. ↑ Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A (15 December 1994). "The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group". Ann Intern Med. 121 (12): 953–59. doi:10.7326/0003-4819-121-12-199412150-00009. PMID   7978722. S2CID   510735.
  9. 1 2 3 Wyller VB (2007). "The chronic fatigue syndrome – an update". Acta Neurologica Scandinavica. Supplementum. 187: 7–14. doi: 10.1111/j.1600-0404.2007.00840.x . PMID   17419822. S2CID   11247547.
  10. 1 2 Holmes GP; Kaplan JE; Gantz NM; et al. (March 1988). "Chronic fatigue syndrome: a working case definition". Ann. Intern. Med. 108 (3): 387–89. doi:10.7326/0003-4819-108-3-387. PMID   2829679. S2CID   42395288. Details Archived 29 November 2009 at the Wayback Machine
  11. 1 2 Sharpe MC; Archard LC; Banatvala JE; et al. (February 1991). "A report--chronic fatigue syndrome: guidelines for research". J R Soc Med. 84 (2): 118–21. doi:10.1177/014107689108400224. PMC   1293107 . PMID   1999813. Synopsis by "Oxford criteria for the diagnosis of chronic fatigue syn" . GPnotebook.)
  12. 1 2 Carruthers BM; et al. (2003). "Myalgic encephalomyalitis/chronic fatigue syndrome: Clinical working definition, diagnostic and treatment protocols" (PDF). Journal of Chronic Fatigue Syndrome. 11 (1): 7–36. doi:10.1300/J092v11n01_02. Archived from the original (PDF) on 16 December 2008.
  13. ↑ Shepherd, Charles (21 February 2011). "London Criteria for M.E. – for website discussion". The ME Association. Retrieved 4 July 2022.
  14. ↑ Howes, S; Goudsmit, E; Shepard, C. "Myalgic Encephalomyelitis (ME). Criteria and clinical guidelines 2014". Axford's Abode. Archived from the original on 14 July 2014.
  15. ↑ Jason, LA; Brown AA; Clyne E; Bartgis L; Evans M; Brown M. (December 2011). "Contrasting case definitions for chronic fatigue syndrome, myalgic encephalomyelitis/chronic fatigue syndrome and myalgic encephalomyelitis". Evaluation & the Health Professions. 35 (3): 280–304. doi:10.1177/0163278711424281. PMC   3658447 . PMID   22158691.
  16. 1 2 Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, Staines D, Powles AC, Speight N, Vallings R, Bateman L, Baumgarten-Austrheim B, Bell DS, Carlo-Stella N, Chia J, Darragh A, Jo D, Lewis D, Light AR, Marshall-Gradisbik S, Mena I, Mikovits JA, Miwa K, Murovska M, Pall ML, Stevens S (October 2011). "Myalgic encephalomyelitis: International Consensus Criteria". J Intern Med. 270 (4): 327–38. doi:10.1111/j.1365-2796.2011.02428.x. PMC   3427890 . PMID   21777306.
  17. ↑ Australian Guidelines (2002)
  18. 1 2 "Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE". www.nice.org.uk. Retrieved 3 July 2022.
  19. 1 2 "Diagnosis of ME/CFS". Centers of Disease Control and Prevention. 27 January 2021.
  20. ↑ National Guideline Centre (UK) (2021). Identifying and diagnosing ME/CFS: Myalgic encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management: Evidence review D. NICE Evidence Reviews Collection. London: National Institute for Health and Care Excellence (NICE). ISBN   978-1-4731-4221-3. PMID   35438857. Archived from the original on 19 February 2024. Retrieved 23 September 2023.
  21. ↑ Reeves WC; Lloyd A; Vernon SD; et al. (December 2003). "Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution". BMC Health Serv Res. 3 (1): 25. doi: 10.1186/1472-6963-3-25 . PMC   317472 . PMID   14702202.
  22. ↑ Kennedy G, Abbot NC, Spence V, Underwood C, Belch JJ (February 2004). "The specificity of the CDC-1994 criteria for chronic fatigue syndrome: comparison of health status in three groups of patients who fulfill the criteria". Ann Epidemiol. 14 (2): 95–100. doi:10.1016/j.annepidem.2003.10.004. PMID   15018881.
  23. ↑ Komaroff AL; Fagioli LR; Geiger AM; et al. (January 1996). "An examination of the working case definition of chronic fatigue syndrome". Am. J. Med. 100 (1): 56–64. doi:10.1016/S0002-9343(96)90012-1. PMID   8579088.
  24. ↑ King C, Jason LA (February 2005). "Improving the diagnostic criteria and procedures for chronic fatigue syndrome". Biol Psychol. 68 (2): 87–106. CiteSeerX   10.1.1.595.4767 . doi:10.1016/j.biopsycho.2004.03.015. PMID   15450690. S2CID   12601890.
  25. ↑ Reeves, William; Dieter Wagner; Rosane Nisenbaum; James Jones; Brian Gurbaxani; Laura Solomon; Dimitris Papanicolaou; Elizabeth Unger; Suzanne Vernon; Christine Heim (2005). "Chronic Fatigue Syndrome – A clinically empirical approach to its definition and study". BMC Medicine. 3: 19. doi: 10.1186/1741-7015-3-19 . ISSN   1741-7015. PMC   1334212 . PMID   16356178.
  26. ↑ Jason, Leonard A; Najar, Natasha; Porter, Nicole; Reh, Christy (2009). "Evaluating the Centers for Disease Control's Empirical Chronic Fatigue Syndrome Case Definition". Journal of Disability Policy Studies. 20 (2): 93–100. CiteSeerX   10.1.1.508.1082 . doi:10.1177/1044207308325995. S2CID   71852821.
This page is based on this Wikipedia article
Text is available under the CC BY-SA 4.0 license; additional terms may apply.
Images, videos and audio are available under their respective licenses.