Controversies related to ME/CFS

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A man with a large sign that reads "NIH/CDC Neglect ME/CFS Patients. BILLIONS on DISABILITY, PENNIES on RESEARCH. Research & Clinical Trials Now!"
A man at a healthcare reform protest, advocating for increased funding for ME/CFS research. (See #Research funding diversion at the CDC, below)

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness with a long history of controversy. Although it is classified as an organic disease, it was historically assumed to be psychological, and a minority of medical professionals still hold this view.[1][2] The pathophysiology of ME/CFS remains unclear, there exists many competing diagnostic criteria, and some proposed treatments are controversial.[3] There have been substantiated accusations of patient neglect and harm.[1][4] Many alternative names to describe the illness have been used over time throughout the world.

Naming[edit]

A 2007 article in The New York Times reported that patients prefer the terms myalgic encephalomyelitis or myalgic encephalopathy to "chronic fatigue syndrome". They believe the term fatigue trivializes the illness and discourages research into potential treatments.[5]

According to a survey of medical trainees at a school in the United States, a condition described as "chronic fatigue syndrome" is considered less serious than a condition described as "myalgic encephalopathy".[6] In 2004, a paper reported that the overwhelming majority of the CFS patients questioned in surveys wanted the name changed from chronic fatigue syndrome.[7]

In 2015 the National Academy of Medicine recommended changing the name to Systemic Exertion Intolerance Disease (SEID) in their report "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness"'.


Neglect and lack of awareness[edit]

Due to lack of education and awareness about ME/CFS many clinicians do not recognise it as genuine or underestimate its seriousness.[8][1][9] A 2020 literature review found that “a third to a half of all GPs did not accept ME/CFS as a genuine clinical entity and, even when they did, they lacked confidence in diagnosing or managing it.”[9] A 2008 Norwegian study that explored barriers to quality care faced by patients with chronic fatigue syndrome concluded, "Current medical scepticism and ignorance regarding CFS shapes the context of medical care and the illness experiences of CFS patients, who may feel they neither get a proper assessment nor management."[10]

Training influences attitudes towards ME/CFS. One study conducted a relatively brief seminar presenting factual information on CFS to a cohort of fourth year medical students. The authors concluded the information provided was associated with a more favorable attitude toward ME/CFS.[11]

Neglect of patients[edit]

A group of 15 people posing in front of a building. One person lays on a cot holding a sign that reads, "I'm Here...23 hrs a day"
Advocates presenting a petition to the Welsh Parliament requesting specialist care for people with ME/CFS and fibromyalgia

Governments, medical institutions, and the medical community have been criticised for neglecting people with ME/CFS.[1][12][13][14] [15]George Monbiot, a journalist for the Guardian, called the neglect and its consequences “the greatest medical scandal of the 21st century”.[16] A 2006 investigation by a group from the Parliament of the United Kingdom found there was not enough support in the UK for CFS patients in terms of access to government benefits and health care.[17] Individuals with the condition describe the struggle for healthcare and legitimacy due to what they consider to be bureaucratic denial of the condition because of its lack of a known etiology. Institutions maintain the exclusion of patient support by rhetorical arguments of the open-endedness of science to delay new findings of fact.[18][19]

Psychological theories[edit]

While ME/CFS is now recognised as a biological condition, it was historically seen as being perpetuated by psychological factors and a small minority of researchers still hold this view.[1][20] Many clinicians are unfamiliar with ME/CFS or believe it to be caused by psychological factors, due to being educated at a time where this was the dominant theory.[1] Clinicians holding psychological views on ME/CFS has serious negative effects on healthcare for patients, as it erodes patient-provider trust, tests the provider's self-assurance and capacity to share power with the patient, and raises problematic issues of reparation, compensation and blame.[21][1]

Biopsychosocial model[edit]

The biopsychosocial model is a tool used by psychologists and psychiatrists to investigate how psychological disorders occur. It investigates biological, psychological, and social factors. From the early 2000s to the early 2010s, before there was conclusive evidence that ME/CFS is a biological disease, this was the dominant theory behind ME/CFS, despite being considered as controversial.[22] The biopsychosocial model adequately represents chronic fatigue secondary to psychiatric conditions, but not ME/CFS.[23]

It was proposed in 1998 by Vercoulen et al.[24] It has been, and to a lesser extent still is, being used to advocate for the controversial and potentially harmful treatments: graded exercise therapy and cognitive behavioural therapy.[25][26] The model is still supported by some psychiatrists such as Simon Wessely and Micheal Sharpe. As a founding member of the Science Media Centre, Wessley has been accused of using his influence to promote media reporting of ME/CFS as a psychological illness, which is still common, despite ME/CFS being considered as biological by major health bodies.[27] The model is often considered a major cause of patient harm.[22][1]

Mass hysteria[edit]

Epidemic cases of myalgic encephalomyelitis were called mass hysteria by psychiatrists McEvedy and Beard in 1970,[28] provoking criticism in letters to the editor of the British Medical Journal by attending physicians, researchers, and nurses who fell ill.[29][30][31][32][33][34][35][36][37][excessive citations]

The psychiatrists were criticized for not investigating the patients they described,[38] and their conclusions have been refuted.[39][40][41] In 1978 a symposium held at the Royal Society of Medicine (RSM) concluded that epidemic myalgic encephalomyelitis was a distinct disease entity.[42]

However, the idea that CFS may be culturally mediated persisted in some quarters. In her 1997 book Hystories: Hysterical Epidemics and Modern Culture, literary critic and feminist Elaine Showalter argues that chronic fatigue syndrome is a "hysterical narrative", a modern manifestation of hysteria, a self-perpetuating "cultural symptom of anxiety and stress" historically assigned to women.[43]

Research related[edit]

Lack of funding[edit]

Governments and health organisations have been criticised for their lack of funding into ME/CFS research. ME/CFS is one of the most underfunded diseases compared to disease burden.[44][45] The funds are only approximately 3-7% of what comparable diseases are allocated.[44][45] Meanwhile the economic impact of ME/CFS is estimated at 149-362 billion USD in the United States alone.[45]

XMRV retrovirus[edit]

XMRV, a virus claimed to be associated with CFS in a paper that was later retracted

In 2009, the journal Science[46] published a study that identified the XMRV retrovirus in blood samples of a population of people with CFS. After the Science publication, media attention generated interest in the XMRV virus worldwide. Doubts over the legitimacy of CFS had long caused patient frustration about the marginalization of the debilitating illness, and persons with CFS and their support organizations were optimistic the cause of their symptoms had been found.[47]

Many countries reacted quickly to protect the blood supply from the XMRV retrovirus by banning persons with CFS from donating blood. The United States funded a 1.3 million dollar study to try to validate the findings, and some people with the illness started taking antiviral drugs in hopes of symptomatic improvement.[47] Organizations adopting these or similar measures included the Canadian Blood Services,[48] the New Zealand Blood Service,[49] the Australian Red Cross Blood Service[50] and the American Association of Blood Banks.[51] In November 2010, the UK National Blood Service permanently deferred ME/CFS patients from donating blood to prevent potential harm to the donor.[52]

Many studies failed to reproduce this finding,[53][54][55] and recriminations of misconduct from the various stakeholders grew angry and bitter.[47]

In 2011, the editor of Science formally retracted its XMRV paper[56] while the Proceedings of the National Academy of Sciences similarly retracted a 2010 paper which had appeared to support the finding of a connection between XMRV and CFS.[57] Studies eventually concluded that neither people nor the blood supply had been infected with the XMRV virus, and the origin of the virus was likely a lab contaminant in the supplies used by the polymerase chain reaction (PCR) process of the studies that found virus in blood.[58]

PACE trial[edit]

Two graphs showing that PACE trial participants reported lowered fatigue and modestly better physical functioning after undergoing GET and CBT
Outcomes reported by the PACE trial

PACE was a large trial investigating the efficacy and safety of three treatments adjunctive to specialist medical care (SMC): cognitive behavioural therapy (CBT), graded exercise therapy (GET), and adaptive pacing therapy (APT). The results were published in February 2011 and concluded that CBT and GET were each "moderately" effective compared to SMC alone, while APT was not found to be effective when added to SMC.[25]

The trial generated considerable criticism. Letters to the editor critiqued the definitions of secondary outcomes, questioned post-hoc protocol changes, and expressed concern over generalisability of the results. Patient groups and the IACFS/ME (an organization of researchers and health care professionals interested in CFS)[59] criticized the trial for over-simplified and exaggerated conclusions, for using a flawed psychosocial illness model that ignores biological evidence, for testing a non-representative version of pacing, and because the results seriously conflict with their member surveys which show that pacing is effective and CBT or GET can cause deterioration in many patients who use the treatments.[60][61][62]

One researcher submitted a 442-page letter to the Medical Research Council outlining his criticisms of the trial, and a shorter 43-page complaint to the Lancet. The MRC and the Lancet rejected the submissions. A Lancet editorial responded to the adverse criticism by suggesting that some critics could be part of "an active campaign to discredit the research."[63][64] In 2011, Lancet Editor Richard Horton defended the trial, calling the critics "a fairly small, but highly organized, very vocal and very damaging group of individuals who have, I would say, actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients."[65][66]

More recent criticisms of the trial have come from the scientific community. For example, biostatistician Bruce Levin of Columbia University described the study as "the height of clinical trial amateurism", and Ronald Davis of Stanford University wrote, "I'm shocked that the Lancet published it... The PACE study has so many flaws and there are so many questions you'd want to ask about it that I don't understand how it got through any kind of peer review".[67] In an analysis of the study's design, the mathematician Professor Rebecca Goldin wrote that "There were problems with the study on almost all levels... the flaws in this design were enough to doom its results from the start."[68] Professor Jonathan Edwards of University College London (UCL) has written that the PACE trial "is an unblinded trial with subjective outcome measures. That makes it a non-starter in the eyes of any physician or clinical pharmacologist familiar with problems of systematic bias in trial execution."[69]

The full research data for the PACE trial was requested by both patients acting as citizen scientists, and by other researchers but was initially denied until a 2016 tribunal ordered the data be released.[70] Several researchers published a re-analysis of the PACE trial data, but drawing the conclusion that the CBT and GET treatments were not effective and possibly not safe.[71][72][73][74] The full PACE trial outcome data showed that the treatments did not result in patients being able to return to work or study,[75] and that they were not able to walk significantly further after treatment.[74] This new information was one of several factors that lead to the UK deciding to complete a full review and update to its diagnostic and treatment guidelines for ME/CFS.[70] The 2021 guidelines no longer include GET or CBT as treatments.[76]

Research funding diversions at the CDC[edit]

In 1998, William Reaves, a director at the Centers for Disease Control (CDC), alleged deceptive Congressional testimony was given by officials at the agency concerning CFS research activities conducted by the organization; specifically, funds for programs intended for CFS research were diverted to other projects and not reported. He also stated he was retaliated against by his superior, Brian Mahy, after he reported the irregularities.[77][78]

A Government Accounting Office (GAO) investigation disclosed almost 13 million dollars for CFS research had been redirected or improperly accounted for by the CDC. The agency stated the funds were redistributed in order to respond to other public health emergencies. The director of a U.S. national patient advocacy group charged the CDC had a bias against studying the disease.[77]

In response, the CDC pledged reforms to accounting practices to reduce misuse of funds earmarked for specific diseases. Additionally, the money diverted from CFS research was to be restored over a period of three years.[77][needs update]

Claims of harassment[edit]

In 2012, several UK researchers involved in the PACE trial, who adopted the controversial psychosocial perspective, reported to the press that they had been verbally abused by patients, and one reported receiving death threats.[64] The claims were pushed by the Science Media Center, which has a history of portraying ME/CFS as psychological and of which one of the founders, Simon Wessley, is a psychosocial researcher on ME/CFS.[79][16][80][81] This was criticised by patients and advocates as being a coordinated effort to dismiss legitimate concerns about the methodology behind psychological studied into ME.[79][16][14]

A tribunal judge investigated the claims of harassment in relation to the PACE trial. They ruled that the claims of harassment had been "wildly exaggerated by the trial authors and their expert witnesses".[70] Blease and Geragty found "no compelling evidence" the vast majority of ME/CFS patients or their advocacy organizations had adopted "militant political policies or behaviours", and reported ME/CFS activists used public discourse and scientific publications analogous to 1980s "AIDS" activists. They concluded the medical establishment's negative perceptions of persons with ME/CFS, and indifference to patient's opinions conceptualized the ME/CFS community's discontent.[70]

Harms to patients[edit]

Harmful treatments[edit]

Many of the treatments proposed based on outdated (bio)psychosocial views of the illness have been criticised for harming patients.[1][82][76][72]Reports of medical harm to patients resulting from the use of cognitive behavioral therapy (CBT) as a primary treatment and the use of graded exercise therapy (GET) have arisen.[83][72][84] A controversial clinical trial of the Lightning Process in children,[85] led to it being specifically forbidden in the NICE guidelines.[12][85] A number of publications have been corrected due to inaccurate ethics statements.[86]

Deaths and suicide[edit]

Studies show medical neglect, trivialisation, and psychologization have contributed to increased risk of suicide in patients suffering from ME/CFS.[87][88] In some severe cases, neglect by clinicians has led to complications of the disease which ultimately led to the death of the patient.[89][90] Some patients with severe and very severe ME/CFS are unable to swallow or properly digest[12], when this is neglected or misdiagnosed as a psychological condition (such as anorexia nervosa), malnutrition can follow, with a risk of death.[4] Proper care for patients with severe feeding problems stipulates total parenteral nutrition for short term cases and using feeding tubes for long term cases.[4]

A notable case is that of Maeve Boothby O-Neill, a 27 year old women who passed away from very severe ME/CFS in 2021. As her condition gradually worsened, she became too unwell to properly feed and hydrate herself. At first the NHS doctors gave her feeding aids, but insisted upon feeding her much more than her body could handle which exacerbated her condition through post-exertional malaise. The only feasible option left was total parenteral nutrition, but due to the doctor's belief that the patient’s condition was largely psychological, they refused this route. A month later, the patient died of malnutrition.[91][92][89] An inquest into Maeve Boothby O-Neill’s death was opened by the Exeter and Devon Coroners, and is currently ongoing. Dr. Anthony Hemsley, the director of the Royal Devon and Exeter NHS Foundation Trust, has testified that the NHS has no policy and no facilities for treating severe (housebound) or very severe (bedbound) patients anywhere in the United Kingdom.[93]

Misdiagnosis, under-diagnosis, and delays in diagnosis[edit]

Because of a lack of awareness and education about ME/CFS in the medical community delays in diagnosis and misdiagnosis are common.[12][94] A large proportion of ME/CFS patients are undiagnosed; its true prevalence is therefore unknown.[95] ME/CFS patients can be misdiagnosed with a wide variety of conditions, common ones include psychosomatic disease, depression, burnout, and neuresthenia.[13] It is common for diagnosis to take over 5 years, and visits to a large number of medical professionals.[96][13]

Involuntary psychiatric hospitalisation[edit]

There have been reported cases of forced psychiatric hospitalisation of ME/CFS patients.[97][98][99] In these cases clinicians assumed ME/CFS was of psychological origin, or misdiagnosed a mental illness.

A notable case is that of Sophia Mirza. Mirza was forcibly removed from her home and sectioned for two weeks by her doctors, who had come to believe her condition was psychosomatic, an action which her mother and sister claim severely worsened her condition, through post exertional malaise. Her health deteriorated after being released from the psychiatric unit, and two years later she died.[97][100] An inquest into her death revealed it to be due to "renal failure as a result of chronic fatigue syndrome".[101]

Disability compensation[edit]

A 2006 report by the UK Parliamentary Group on Scientific Research into Myalgic Encephalomyelitis stated that: "CFS/ME is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. Therefore, claimants are not entitled to the higher level of benefit payments. We recognise that if CFS/ME remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies." The Group called for investigation of what they called, "numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here."

The Secretary of State for Work and Pensions responded that "Entitlement to Disability Living Allowance depends on the effects that severe physical or mental disability has on a person's need for personal care and/or their ability to walk, and not on particular disabilities or diagnoses. The benefit is available to people with myalgic encephalomyelitis (which can have a physical basis or a psychological basis, or can be due to a combination of factors) on exactly the same terms as other severely disabled people, and they can qualify for it provided that they meet the usual entitlement conditions."[102] This runs contrary to current scientific evidence which shows ME/CFS is "unambiguously biological". [103]

References[edit]

  1. ^ a b c d e f g h i Thoma M, Froehlich L, Hattesohl DB, Quante S, Jason LA, Scheibenbogen C (31 December 2023). "Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients". Medicina. 60 (1): 83. doi:10.3390/medicina60010083. ISSN 1648-9144. PMC 10819994. PMID 38256344.
  2. ^ Solomon L, Reeves WC (November 2004). "Factors influencing the diagnosis of chronic fatigue syndrome". Archives of Internal Medicine. 164 (20): 2241–5. doi:10.1001/archinte.164.20.2241. PMID 15534161.
  3. ^ Hooge J (1992). "Chronic fatigue syndrome: cause, controversy and care". British Journal of Nursing. 1 (9): 440–1, 443, 445–6. doi:10.12968/bjon.1992.1.9.440. PMID 1446147.
  4. ^ a b c Baxter H, Speight N, Weir W (14 April 2021). "Life-Threatening Malnutrition in Very Severe ME/CFS". Healthcare. 9 (4): 459. doi:10.3390/healthcare9040459. ISSN 2227-9032. PMC 8070213. PMID 33919671.
  5. ^ Tuller D (17 July 2007). "Chronic Fatigue Syndrome No Longer Seen as 'Yuppie Flu'". The New York Times. Archived from the original on 17 March 2015. Retrieved 15 June 2009.
  6. ^ Jason LA, Taylor RR, Plioplys S, Stepanek Z, Shlaes J (2002). "Evaluating attributions for an illness based upon the name: chronic fatigue syndrome, myalgic encephalopathy and Florence Nightingale disease". Am J Community Psychol. 30 (1): 133–48. doi:10.1023/A:1014328319297. PMID 11928774. S2CID 27350772.
  7. ^ Jason LA, Holbert C, Torres-Harding S, Taylor RR (2004). "Stigma and the Term Chronic Fatigue Syndrome". Journal of Disability Policy Studies. 14 (4): 222–228. CiteSeerX 10.1.1.486.4577. doi:10.1177/10442073040140040401. S2CID 72397898.
  8. ^ Jason LA, Richman JA, Friedberg F, Wagner L, Taylor R, Jordan KM (1997). "Politics, science, and the emergence of a new disease. The case of chronic fatigue syndrome". Am Psychol. 52 (9): 973–83. doi:10.1037/0003-066X.52.9.973. PMID 9301342.
  9. ^ a b Pheby DF, Araja D, Berkis U, Brenna E, Cullinan J, de Korwin JD, et al. (24 December 2020). "A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomic Working Group of the European Network on ME/CFS (EUROMENE)". Medicina. 57 (1): 7. doi:10.3390/medicina57010007. ISSN 1648-9144. PMC 7823627. PMID 33374291.
  10. ^ Gilje AM, Söderlund A, Malterud K (May 2008). "Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)-A case study". Patient Educ Couns. 73 (1): 36–41. doi:10.1016/j.pec.2008.04.001. PMID 18486415.
  11. ^ Friedberg F, Sohl SJ, Halperin PJ (May 2008). "Teaching medical students about medically unexplained illnesses: A preliminary study". Med Teach. 30 (6): 618–21. doi:10.1080/01421590801946970. PMID 18608944. S2CID 23465440.
  12. ^ a b c d "Overview | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE". www.nice.org.uk. 29 October 2021. Archived from the original on 4 December 2022. Retrieved 14 April 2024.
  13. ^ a b c Tschopp R, König RS, Rejmer P, Paris DH (4 January 2023). "Health system support among patients with ME/CFS in Switzerland". Journal of Taibah University Medical Sciences. 18 (4): 876–885. doi:10.1016/j.jtumed.2022.12.019. ISSN 1658-3612. PMC 9957780. PMID 36852237. Archived from the original on 15 April 2024. Retrieved 15 April 2024.
  14. ^ a b Chowdhury S (23 May 2023). "Freedom of Information Findings Report" (PDF). Action for ME. Archived (PDF) from the original on 14 December 2023. Retrieved 15 April 2024.
  15. ^ Hallmann, Geoffrey & Barclay, Jade & Coutts, Rosanne. (2021). ME/CFS Dependence on Social Institutions: Violence, Abuse, Neglect and Exploitation. 10.13140/RG.2.2.22117.12000/1.
  16. ^ a b c Monbiot G (12 March 2024). "'You don't want to get better': the outdated treatment of ME/CFS patients is a national scandal". The Guardian. ISSN 0261-3077. Archived from the original on 4 April 2024. Retrieved 15 April 2024.
  17. ^ Gibson I (February 2007). "A new look at chronic fatigue syndrome/myalgic encephalomyelitis". Journal of Clinical Pathology. 60 (2): 120–1. doi:10.1136/jcp.2006.042432. PMC 1860614. PMID 16935965.
  18. ^ Mounstephen A, Sharpe M (May 1997). "Chronic fatigue syndrome and occupational health". Occupational Medicine. 47 (4): 217–27. doi:10.1093/occmed/47.4.217. PMID 9231495.
  19. ^ Dumit J (February 2006). "Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses". Social Science & Medicine. 62 (3): 577–90. doi:10.1016/j.socscimed.2005.06.018. PMID 16085344.
  20. ^ Sweetman E, Noble A, Edgar C, Mackay A, Helliwell A, Vallings R, et al. (10 July 2019). "Current Research Provides Insight into the Biological Basis and Diagnostic Potential for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Diagnostics. 9 (3): 73. doi:10.3390/diagnostics9030073. ISSN 2075-4418. PMC 6787691. PMID 31295930.
  21. ^ Engel CC, Adkins JA, Cowan DN (2002). "Caring for medically unexplained physical symptoms after toxic environmental exposures: effects of contested causation". Environ. Health Perspect. 110 (Suppl 4): 641–7. doi:10.1289/ehp.02110s4641. PMC 1241219. PMID 12194900.
  22. ^ a b Geraghty KJ, Esmail A (1 August 2016). "Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?". British Journal of General Practice. 66 (649): 437–438. doi:10.3399/bjgp16X686473. ISSN 0960-1643. PMC 4979914. PMID 27481982. Archived from the original on 29 January 2023. Retrieved 15 April 2024.
  23. ^ Song S, Jason LA (2005). "A population based study of CFS experienced in differing patient groups. An effort to replicate Vercoulen et al.'s model of CFS" (PDF). Journal of Mental Health. 14 (3): 277–289. doi:10.1080/09638230500076165. S2CID 72869012.
  24. ^ Vercoulen J, Swanink C, Galama J, Fennis J, Jongen P, Hommes O, et al. (1 December 1998). "The persistence of fatigue in chronic fatigue syndrome and multiple sclerosis". Journal of Psychosomatic Research. 45 (6): 507–517. doi:10.1016/s0022-3999(98)00023-3. ISSN 0022-3999. PMID 9859853.
  25. ^ a b White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, et al. (March 2011). "Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial". Lancet. 377 (9768): 823–36. doi:10.1016/S0140-6736(11)60096-2. PMC 3065633. PMID 21334061.
  26. ^ White P, Abbey S, Angus B, Ball HA, Buchwald DS, Burness C, et al. (1 December 2023). "Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis". Journal of Neurology, Neurosurgery & Psychiatry. 94 (12): 1056–1063. doi:10.1136/jnnp-2022-330463. ISSN 0022-3050. PMID 37434321. Archived from the original on 24 March 2024. Retrieved 15 April 2024.
  27. ^ Williams, Margaret. "The Media and ME". Invest in ME Research. Retrieved February 28,2019.
  28. ^ McEvedy CP, Beard AW (January 1970). "Concept of benign myalgic encephalomyelitis". British Medical Journal. 1 (5687): 11–5. doi:10.1136/bmj.1.5687.11. PMC 1700895. PMID 5411596.
  29. ^ Scott BD (January 1970). "Epidemic malaise". British Medical Journal. 1 (5689): 170. doi:10.1136/bmj.1.111.170. PMC 1699088. PMID 5370039.
  30. ^ Compston ND, Dimsdale HE, Ramsay AM, Richardson AT (February 1970). "Epidemic Malaise". British Medical Journal. 1 (5692): 362–363. doi:10.1136/bmj.1.5692.362-a. PMC 1699022.
  31. ^ Acheson ED (February 1970). "Epidemic Malaise". British Medical Journal. 1 (5692): 363–4. doi:10.1136/bmj.1.5692.363-b. PMC 1698971.
  32. ^ Gosling PH (February 1970). "Epidemic malaise". British Medical Journal. 1 (5694): 499–500. doi:10.1136/bmj.1.5694.499-b. PMC 1699452. PMID 5435167.
  33. ^ Purke GJ (February 1970). "Epidemic malaise". British Medical Journal. 1 (5694): 500. doi:10.1136/bmj.1.5694.500. PMC 1699458. PMID 5435168.
  34. ^ Hopkins EJ (February 1970). "Epidemic malaise". British Medical Journal. 1 (5694): 500–1. doi:10.1136/bmj.1.5694.500-a. PMC 1699426. PMID 5435169.
  35. ^ Galpine JF (February 1970). "Epidemic malaise". British Medical Journal. 1 (5694): 501. doi:10.1136/bmj.1.5694.501. PMC 1699416. PMID 5435170.
  36. ^ Poskanzer DC (May 1970). "Epidemic malaise". British Medical Journal. 2 (5706): 420–1. doi:10.1136/bmj.2.5706.420-b. PMC 1700311. PMID 5420612.
  37. ^ Parish JG (July 1970). "Epidemic malaise". British Medical Journal. 3 (5713): 47–8. doi:10.1136/bmj.3.5713.47-c. PMC 1700986. PMID 4316803.
  38. ^ Hooper M (May 2007). "Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research". Journal of Clinical Pathology. 60 (5): 466–71. doi:10.1136/jcp.2006.042408. PMC 1994528. PMID 16935967.
  39. ^ Evengård B, Schacterle RS, Komaroff AL (November 1999). "Chronic fatigue syndrome: new insights and old ignorance". Journal of Internal Medicine. 246 (5): 455–69. doi:10.1046/j.1365-2796.1999.00513.x. PMID 10583715. S2CID 34123925.[dead link]
  40. ^ David AS, Wessely S, Pelosi AJ (March 1988). "Postviral fatigue syndrome: time for a new approach". British Medical Journal. 296 (6623): 696–9. doi:10.1136/bmj.296.6623.696. PMC 2545306. PMID 3128374.
  41. ^ Stricklin A, Sewell M, Austad C (January 1990). "Objective measurement of personality variables in epidemic neuromyasthenia patients". South African Medical Journal = Suid-Afrikaanse Tydskrif vir Geneeskunde. 77 (1): 31–4. PMID 2294610.
  42. ^ No authors listed (June 1978). "Epidemic myalgic encephalomyelitis". British Medical Journal. 1 (6125): 1436–7. doi:10.1136/bmj.1.2791.1436-a. PMC 1604957. PMID 647324.
  43. ^ Showalter E (1997). Hystories: hysterical epidemics and modern media. New York: Columbia University Press. pp. 132. ISBN 978-0-231-10459-3.
  44. ^ a b Mirin AA, Dimmock ME, Jason LA (20 July 2020). Mooney A (ed.). "Research update: The relation between ME/CFS disease burden and research funding in the USA". Work. 66 (2): 277–282. doi:10.3233/WOR-203173. PMID 32568148.
  45. ^ a b c Mirin AA, Dimmock ME, Jason LA (3 April 2022). "Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications". Fatigue: Biomedicine, Health & Behavior. 10 (2): 83–93. doi:10.1080/21641846.2022.2062169. ISSN 2164-1846.
  46. ^ Lombardi VC, Ruscetti FW, Das Gupta J, Pfost MA, Hagen KS, Peterson DL, et al. (October 2009). "Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome". Science. 326 (5952): 585–9. Bibcode:2009Sci...326..585L. doi:10.1126/science.1179052. PMC 3073172. PMID 19815723. (Retracted, see doi:10.1126/science.334.6063.1636-a)
  47. ^ a b c Callaway E (March 2011). "Virology: Fighting for a cause". Nature. 471 (7338): 282–5. Bibcode:2011Natur.471..282C. doi:10.1038/471282a. PMID 21412308. S2CID 1416235.
  48. ^ "No blood from chronic fatigue donors: agency". CBC. 7 April 2010. Archived from the original on 11 April 2010. Retrieved 25 June 2010.
  49. ^ Atkinson K (21 April 2010). "Chronic Fatigue Set To Disqualify Blood Donors". Voxy.co.nz. Archived from the original on 24 April 2010. Retrieved 25 June 2010.
  50. ^ "Blood Service updates CFS donor policy". Australian Red Cross Blood Service. Archived from the original on 14 October 2013. Retrieved 7 July 2013.
  51. ^ "Recommendation on Chronic Fatigue Syndrome and Blood Donation". American Association of Blood Banks. 18 June 2010. Archived from the original on 25 June 2010. Retrieved 25 June 2010.
  52. ^ NHS Blood and Transplant (5 November 2010). "ME/CFS sufferers permanently deferred from giving blood". Archived from the original on 28 November 2015. Retrieved 9 October 2011.
  53. ^ Erlwein O, Kaye S, McClure MO, Weber J, Wills G, Collier D, et al. (January 2010). Nixon DF (ed.). "Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome". PLOS ONE. 5 (1): e8519. Bibcode:2010PLoSO...5.8519E. doi:10.1371/journal.pone.0008519. PMC 2795199. PMID 20066031.
  54. ^ Groom HC, Boucherit VC, Makinson K, Randal E, Baptista S, Hagan S, et al. (February 2010). "Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome". Retrovirology. 7 (1): 10. doi:10.1186/1742-4690-7-10. PMC 2839973. PMID 20156349.
  55. ^ van Kuppeveld FJ, de Jong AS, Lanke KH, Verhaegh GW, Melchers WJ, Swanink CM, et al. (February 2010). "Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort". BMJ. 340: c1018. doi:10.1136/bmj.c1018. PMC 2829122. PMID 20185493.
  56. ^ Alberts B (December 2011). "Retraction". Science. 334 (6063): 1636. Bibcode:2011Sci...334.1636A. doi:10.1126/science.334.6063.1636-a. PMID 22194552.
  57. ^ Lo SC, Pripuzova N, Li B, Komaroff AL, Hung GC, Wang R, et al. (January 2012). "Retraction for Lo et al., Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors". Proceedings of the National Academy of Sciences of the United States of America. 109 (1): 346. Bibcode:2012PNAS..109..346.. doi:10.1073/pnas.1119641109. PMC 3252929. PMID 22203980.
  58. ^ Johnson AD, Cohn CS (October 2016). "Xenotropic Murine Leukemia Virus-Related Virus (XMRV) and the Safety of the Blood Supply". Clinical Microbiology Reviews. 29 (4): 749–57. doi:10.1128/CMR.00086-15. PMC 5010753. PMID 27358491.
  59. ^ "IACFS/ME Statement on the PACE Trial: The Issue of Illness 'Reversal'". The International Association for Chronic Fatigue Syndrome/ME (IACFS/ME). 24 February 2011. Archived from the original on 18 July 2011. Retrieved 3 August 2011.
  60. ^ "PACE: 'surprising and disappointing'". Action for ME. 18 February 2011. Archived from the original on 25 February 2011. Retrieved 3 August 2011.
  61. ^ Britton T (18 February 2011). "ME Association press statement about the results of the PACE study". ME Association. Archived from the original on 27 July 2011. Retrieved 3 August 2011.
  62. ^ McCleary K. "Falling off the PACE" (PDF). The CAA (CFIDS) Association of America. Archived from the original (PDF) on 25 June 2011. Retrieved 26 July 2011.
  63. ^ [No authors listed] (Editorial) (May 2011). "Patients' power and PACE". Lancet. 377 (9780): 1808. doi:10.1016/S0140-6736(11)60696-X. PMID 21592553. S2CID 32809857.
  64. ^ a b Hawkes N (June 2011). "Dangers of research into chronic fatigue syndrome". BMJ. 342: d3780. doi:10.1136/bmj.d3780. PMID 21697226. S2CID 27301336.
  65. ^ "Comparison of treatments for chronic fatigue syndrome - the PACE trial". ABC Radio National. 15 April 2011. Archived from the original on 12 December 2019. Retrieved 24 May 2020.
  66. ^ Rehmeyer J (13 November 2015). "The Debate Over Chronic Fatigue Syndrome Is Suddenly Shifting". Slate Magazine. Archived from the original on 15 August 2019. Retrieved 24 May 2020.
  67. ^ "An open letter to Dr. Richard Horton and The Lancet". www.virology.ws. 13 November 2015. Archived from the original on 20 April 2016. Retrieved 2 May 2016.
  68. ^ Goldin R (21 March 2016). "PACE: The research that sparked a patient rebellion and challenged medicine". Sense About Statistics. Archived from the original on 21 December 2016.
  69. ^ Edwards J (August 2017). "PACE team response shows a disregard for the principles of science". Journal of Health Psychology. 22 (9): 1155–1158. doi:10.1177/1359105317700886. PMID 28805520.
  70. ^ a b c d Blease C, Geraghty KJ (September 2018). "Are ME/CFS Patient Organizations "Militant"? : Patient Protest in a Medical Controversy". Journal of Bioethical Inquiry. 15 (3): 393–401. doi:10.1007/s11673-018-9866-5. PMID 29971693. S2CID 49677273.
  71. ^ Vink M (August 2017). "PACE trial authors continue to ignore their own null effect". Journal of Health Psychology. 22 (9): 1134–1140. doi:10.1177/1359105317703785. PMID 28805519. S2CID 206713549.
  72. ^ a b c Vink M, Vink-Niese A (8 October 2018). "Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review". Health Psychology Open. 5 (2): 2055102918805187. doi:10.1177/2055102918805187. PMC 6176540. PMID 30305916.
  73. ^ Twisk FN, Maes M (2009). "A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS". Neuro Endocrinology Letters. 30 (3): 284–99. PMID 19855350.
  74. ^ a b Wilshire CE, Kindlon T, Courtney R, Matthees A, Tuller D, Geraghty K, et al. (March 2018). "Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT". BMC Psychology. 6 (1): 6. doi:10.1186/s40359-018-0218-3. PMC 5863477. PMID 29562932.
  75. ^ Vink M, Vink-Niese F (September 2019). "Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies". Diagnostics. 9 (4): 124. doi:10.3390/diagnostics9040124. PMC 6963831. PMID 31547009.
  76. ^ a b Vink M, Vink-Niese A (12 May 2022). "The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS". Healthcare (Basel, Switzerland). 10 (5): 898. doi:10.3390/healthcare10050898. ISSN 2227-9032. PMC 9141828. PMID 35628033.
  77. ^ a b c Dove A (August 2000). "GAO reports on CFS funding controversy". Nature Medicine. 6 (8): 846. doi:10.1038/78579. PMID 10932206. S2CID 1431198.
  78. ^ Mays P (6 July 1999). "CDC Diverts Chronic Fatigue Funds". AP NEWS. Archived from the original on 25 June 2020. Retrieved 25 June 2020.
  79. ^ a b Tuller D (1 February 2016). "Trial By Error, Continued: A Few Words About Harassment | Virology Blog". Retrieved 15 April 2024.
  80. ^ Science Media Centre; Fox, Fiona (October 31, 2013). "SMC - malicious use of FOI against researchers". Science Media Centre.
  81. ^ Science Media Centre; Blithell, Claire (February 2013). "Supporting experts targeted by extremists" (PDF). Science Media Centre. p. 10. Archived from the original (PDF) on April 18, 2016.
  82. ^ Marks DF (6 January 2023). Treatment Harms To Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Report). doi:10.32388/xug3pt.2.
  83. ^ Kindlon T, Goudsmit EM (February 2010). "Graded exercise for chronic fatigue syndrome: too soon to dismiss reports of adverse reactions". Journal of Rehabilitation Medicine. 42 (2): 184, author reply 184–6. doi:10.2340/16501977-0493. PMID 20140417. Retrieved 17 July 2020.
  84. ^ Geraghty KJ, Blease C (January 2018). "Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent". Journal of Health Psychology. 23 (1): 127–138. doi:10.1177/1359105316667798. PMID 27634687. S2CID 31832147. Archived from the original on 27 August 2021. Retrieved 25 August 2021.
  85. ^ a b Coyne JC (27 September 2017). "Parents should have been warned about unprofessional providers in Esther Crawley's SMILE trial". Coyne of the Realm. Archived from the original on 18 July 2020. Retrieved 18 July 2020.
  86. ^ Tuller D (13 December 2019). "BMJ should retract flawed paper on chronic fatigue syndrome". STAT. Archived from the original on 28 October 2020. Retrieved 18 July 2020. Unfortunately for BMJ, in addition to the mess over the Lightning Process study, Crawley was also directed earlier this year to correct the ethics statements in eleven other published papers – five of them in BMJ journals.
  87. ^ König RS, Paris DH, Sollberger M, Tschopp R (23 February 2024). "Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study". Heliyon. 10 (5): e27031. Bibcode:2024Heliy..1027031K. doi:10.1016/j.heliyon.2024.e27031. ISSN 2405-8440. PMC 10907781. PMID 38434357. Archived from the original on 15 April 2024. Retrieved 14 April 2024.
  88. ^ Chu L, Elliott M, Stein E, Jason LA (25 May 2021). "Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Healthcare. 9 (6): 629. doi:10.3390/healthcare9060629. ISSN 2227-9032. PMC 8227525. PMID 34070367.
  89. ^ a b Sandeman G (22 September 2022). "Chronic fatigue syndrome patient told: 'You're making it up'". The Times. ISSN 0140-0460. Archived from the original on 9 December 2023. Retrieved 14 April 2024.
  90. ^ "Emily didn't 'only' have ME". The Telegraph. 23 June 2013. Archived from the original on 8 December 2023. Retrieved 14 April 2024.
  91. ^ "Daughter's death 'could have been avoided'". BBC News. 19 December 2023. Archived from the original on 21 March 2024. Retrieved 14 April 2024.
  92. ^ Tuller D (27 January 2023). "When the doctor doesn't listen". Coda Story. Archived from the original on 28 December 2023. Retrieved 14 April 2024.
  93. ^ Correspondent Will Humphries, Southwest (14 April 2024). "Hospitals have no services for most severe ME cases, coroner told". The Times. ISSN 0140-0460. Archived from the original on 30 January 2024. Retrieved 14 April 2024.{{cite news}}: CS1 maint: multiple names: authors list (link)
  94. ^ Bateman L, Bested AC, Bonilla HF, Chheda BV, Chu L, Curtin JM, et al. (1 November 2021). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management". Mayo Clinic Proceedings. 96 (11): 2861–2878. doi:10.1016/j.mayocp.2021.07.004. ISSN 0025-6196. PMID 34454716.
  95. ^ Araja D, Berkis U, Lunga A, Murovska M (July 2021). "Shadow Burden of Undiagnosed Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) on Society: Retrospective and Prospective—In Light of COVID-19". Journal of Clinical Medicine. 10 (14): 3017. doi:10.3390/jcm10143017. ISSN 2077-0383. PMC 8303374. PMID 34300183.
  96. ^ 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. Washington (DC): National Academies Press (US); 2015 Feb 10. PMID: 25695122.
  97. ^ a b "Real life: The long goodbye". Irish Independent. 8 March 2010. Retrieved 15 April 2024.
  98. ^ "Karina Hansen is Finally Home (sort of...)". Daily Kos. Retrieved 15 April 2024.
  99. ^ "Family push for daughter's removal from hospital". BBC News. 12 April 2024. Retrieved 15 April 2024.
  100. ^ "I never imagined my sister would die". The Irish Times. Retrieved 15 April 2024.
  101. ^ Hooper R. "First official UK death from chronic fatigue syndrome". New Scientist. Retrieved 15 April 2024.
  102. ^ "Inquiry into the status of CFS/ME and research into causes and treatment". United Kingdom Parliamentary Group on Scientific Research into Myalgic Encephalomyelitis. 1 November 2006. Archived from the original on 24 June 2010. Retrieved 25 June 2010.
  103. ^ "Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'". Science Alert. 24 March 2024. Archived from the original on 4 April 2024. Retrieved 13 April 2024.

Further reading[edit]

  • Johnson H (1996). Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. Crown Publishers, New York. ISBN 978-0-517-70353-3.