Controversies related to chronic fatigue syndrome
Chronic fatigue syndrome (CFS) is an illness with a long history of controversy. For years, many professionals within the medical community did not recognize CFS as a true condition, nor was there agreement on its prevalence. There has been much disagreement over the pathophysiology of chronic fatigue syndrome, how it should be diagnosed, and how to treat it.
The diagnosis is controversial, and its etiology is still not fully understood. Alternative names to describe the condition(s) have been used over time throughout the world. Patient groups have criticized the name "chronic fatigue syndrome," saying it trivializes the illness.
A major divide still exists as to whether funding should be directed towards biomedical or psychological research.
A 2007 article in The New York Times reported that patients prefer the terms myalgic encephalomyelitis or myalgic encephalopathy to "chronic fatigue syndrome". These patients believed the term fatigue trivializes the illness and discourages research into potential treatments.
According to a survey of medical trainees at a school in the United States, a condition described as "chronic fatigue syndrome" may be considered less serious than a condition described as "myalgic encephalopathy". In 2004, a paper reported that the majority of the CFS patients questioned in a survey wanted the name changed from chronic fatigue syndrome.
Cause, diagnosis and treatment
Historically, many professionals within the medical community were unfamiliar with CFS, or they did not recognize it as a real condition, and disagreed on its prevalence or seriousness. A 2005 study in the UK surveyed 811 general practitioners' attitudes and knowledge of CFS. 72% accepted CFS as a recognizable clinical entity, but 48% did not feel confident diagnosing it, and 41% did not feel confident in treatment. The CFS Advisory Committee (Part of the US Department of Health) in 2007 found that a survey of 1,500 US primary care providers showed that 90 percent believed CFS can impair quality of life, 20 percent strongly or somewhat agreed that CFS is only in the patient’s head, and 70 percent said not enough information is available to diagnose CFS. A 2008 Norwegian study that explored barriers quality care from experiences by patients suffering from chronic fatigue syndrome concluded, "current medical skepticism 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."
Training may influence attitudes to 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 CFS. In the UK, the 2002 Chief Medical Officer's report stated that all doctors should consider CFS as a serious chronic illness and treat patients accordingly. In 2006, the CDC launched a national program to educate the American public and health care professionals about CFS.
There has been much disagreement over proposed cause(s), diagnosis, and treatment of the illness. Contrasting viewpoints have been expressed by different CFS researchers. One influential 1993 Lancet paper argued that CFS was a form of neurasthenia to be classified as a psychiatric condition, and a subsequent 1998 paper concluded that behavioral, cognitive, and affective factors all played a role in perpetuating fatigue. More recently, a 2005 population-based study, which used a similar methodology to the earlier 1998 study, found important differences between CFS and psychiatrically explained chronic fatigue which could affect the development of therapy and explanatory models. They concluded that the 1998 model adequately represented chronic fatigue secondary to psychiatric conditions, but not CFS.
Contested causation may have serious negative effects on healthcare for individuals, as it may erode patient-provider trust, test the provider's self-assurance and capacity to share power with the patient, and raise problematic issues of reparation, compensation and blame.
PACE was a large trial investigating the efficacy and safety of four 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.
The trial generated considerable adverse 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)  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. One notable 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."
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.”. 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." 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."
Support for patients
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. Sufferers 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. This has resulted in an expensive and prolonged conflict for all involved.
In 1998 it became known almost 13 million dollars for CFS research had been redirected or improperly accounted for by the United States CDC. The agency stated the need 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.
Epidemic cases of benign myalgic encephalomyelitis were called mass hysteria by psychiatrists McEvedy and Beard in 1970, provoking criticism in letters to the editor of the British Medical Journal by attending physicians, researchers, and nurses who fell ill. The psychiatrists were criticized for not investigating the patients they described, and their conclusions have been refuted. In 1978 a symposium held at the Royal Society of Medicine (RSM) concluded that epidemic myalgic encephalomyelitis was a distinct disease entity.
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.
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."
Researchers who advocate classifying CFS as a psychosocial illness have been criticized by those who believe that their work draws attention and funding away from research into biomedical treatments. In 2012, several prominent UK researchers adopting the psychosocial perspective reported to the press that they had been verbally abused by patients, and one reported receiving death threats.
- Wallace PG (1991). "Post-viral fatigue syndrome. Epidemiology: a critical review". Br. Med. Bull. 47 (4): 942–51. doi:10.1093/oxfordjournals.bmb.a072522. PMID 1794092.
- Mounstephen A, Sharpe M; Sharpe (1997). "Chronic fatigue syndrome and occupational health". Occup Med (Lond). 47 (4): 217–27. doi:10.1093/occmed/47.4.217. PMID 9231495.
- Solomon L, Reeves WC; Reeves (2004). "Factors influencing the diagnosis of chronic fatigue syndrome". Arch. Intern. Med. 164 (20): 2241–5. doi:10.1001/archinte.164.20.2241. PMID 15534161.
- Hooge J (1992). "Chronic fatigue syndrome: cause, controversy and care". Br J Nurs. 1 (9): 440–1, 443, 445–6. doi:10.12968/bjon.1922.214.171.1240. PMID 1446147.
- Tuller, D (17 July 2007). "Chronic Fatigue Syndrome No Longer Seen as 'Yuppie Flu'". The New York Times. Retrieved 15 June 2009.
- Jason LA, Taylor RR, Plioplys S, Stepanek Z, Shlaes J; Taylor; Plioplys; Stepanek; Shlaes (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.CS1 maint: Multiple names: authors list (link)
- Jason, L; 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.CS1 maint: Multiple names: authors list (link)
- Jason LA, Richman JA, Friedberg F, Wagner L, Taylor R, Jordan KM; Richman; Friedberg; Wagner; Taylor; Jordan (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.CS1 maint: Multiple names: authors list (link)
- Bowen J, Pheby D, Charlett A, McNulty C; Pheby; Charlett; McNulty (2005). "Chronic Fatigue Syndrome: a survey of GPs' attitudes and knowledge". Fam Pract. 22 (4): 389–93. doi:10.1093/fampra/cmi019. PMID 15805128.CS1 maint: Multiple names: authors list (link)
- Chair Oleske James M. (28–29 November 2007). Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting. Room 800, Hubert H. Humphrey Building, Washington, D.C. 20201: U.S. Department of Health & Human Services. Retrieved 18 April 2008.
- Gilje AM, Söderlund A, Malterud K; Söderlund; Malterud (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.CS1 maint: Multiple names: authors list (link)
- Friedberg F, Sohl SJ, Halperin PJ; Sohl; Halperin (May 2008). "Teaching medical students about medically unexplained illnesses: A preliminary study". Med Teach. 30 (6): 618–21. doi:10.1080/01421590801946970. PMID 18608944.CS1 maint: Multiple names: authors list (link)
- CFS/ME Working Group (11 January 2002). "A report of the CFS/ME working group: report to the chief medical officer of an independent working group" (pdf). London: Department of Health. Retrieved 26 May 2009.
- "Chronic Fatigue Syndrome Mission / Goals". Centers for Disease Control and Prevention. 11 May 2006. Retrieved 18 August 2009.
- Sharpe M (1996). "Chronic fatigue syndrome". Psychiatr. Clin. North Am. 19 (3): 549–73. doi:10.1016/S0193-953X(05)70305-1. PMID 8856816.
- Horton-Salway M (2007). "The ME Bandwagon and other labels: constructing the genuine case in talk about a controversial illness" (PDF). Br J Soc Psychol. 46 (Pt 4): 895–914. doi:10.1348/014466607X173456. PMID 17535450.
- Hooge J (1992). "Chronic fatigue syndrome: cause, controversy and care". Br J Nurs. 1 (9): 440–1, 443, 445–6. doi:10.12968/bjon.19126.96.36.1990. PMID 1446147.
- David A, Wessely S; Wessely (1993). "Chronic fatigue, ME, and ICD-10". The Lancet. 342 (8881): 1247–8. doi:10.1016/0140-6736(93)92234-K. PMID 7901572.
- Vercoulen, JHMM; Swanink CMA; Galama JMD; Fennis JFM; Jongen PHJ; Hommes OR; Van der Meer JWM; Bleijenberg G (1998). "The persistence of fatigue in chronic fatigue syndrome and multiple sclerosis: Development of a model". Journal of Psychosomatic Research. 45 (6): 507–517. doi:10.1016/S0022-3999(98)00023-3. PMID 9859853.
- 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.
- Engel CC, Adkins JA, Cowan DN; Adkins; Cowan (2002). "Caring for medically unexplained physical symptoms after toxic environmental exposures: effects of contested causation". Environ. Health Perspect. 110 Suppl 4 (Suppl 4): 641–7. doi:10.1289/ehp.02110s4641. PMC 1241219. PMID 12194900.CS1 maint: Multiple names: authors list (link)
- White, P.; Goldsmith, K.; Johnson, A.; et al. (2011). "Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial". The Lancet. 377 (9768): 823–836. doi:10.1016/S0140-6736(11)60096-2. PMC 3065633. PMID 21334061.
- "IACFS/ME Statement on the PACE Trial: The Issue of Illness 'Reversal'", 24 February 2011, The International Association for Chronic Fatigue Syndrome/ME (IACFS/ME), "Archived copy". Archived from the original on 18 July 2011. Retrieved 2011-08-03.CS1 maint: Archived copy as title (link)
- "PACE: 'surprising and disappointing'", 18 February 2011, Action for ME, http://www.afme.org.uk/news.asp?newsid=1047
- "ME Association press statement about the results of the PACE study", Tony Britton for the ME Association, 18 February 2011, http://www.meassociation.org.uk/?p=4607
- "Falling off the PACE", Kimberly McCleary, [undated (Retrieved 26 July 2011)], The CAA (CFIDS Association of America), "Archived copy" (PDF). Archived from the original (PDF) on 25 June 2011. Retrieved 2011-08-03.CS1 maint: Archived copy as title (link)
- [No authors listed] (Editorial) (May 2011). "Patients' power and PACE". Lancet. 377 (9780): 1808. doi:10.1016/S0140-6736(11)60696-X. PMID 21592553.
- Hawkes N (June 2011). "(Editorial) Dangers of research into chronic fatigue syndrome". BMJ. 342: d3780. doi:10.1136/bmj.d3780. PMID 21697226.
- "An open letter to Dr. Richard Horton and The Lancet". www.virology.ws. Retrieved 2016-05-02.
- "PACE: The research that sparked a patient rebellion and challenged medicine", Sense About Statistics, 21 March 2016 http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/
- Edwards, Jonathan (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.
- Gibson I (February 2007). "A new look at chronic fatigue syndrome/myalgic encephalomyelitis". J. Clin. Pathol. 60 (2): 120–1. doi:10.1136/jcp.2006.042432. PMC 1860614. PMID 16935965.
- Dumit, J. (8 August 2005). "Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses". Soc Sci Med. 62 (3): 577–90. doi:10.1016/j.socscimed.2005.06.018. PMID 16085344.
- Dove, A. (August 2000). "GAO reports on CFS funding controversy". Nat. Med. 6 (8): 846. doi:10.1038/78579. PMID 10932206.
- McEvedy CP, Beard AW; Beard (1970). "Concept of Benign Myalgic Encephalomyelitis". British Medical Journal. 1 (5687): 11–5. doi:10.1136/bmj.1.5687.11. PMC 1700895. PMID 5411596.
- Scott BD (January 1970). "Epidemic malaise". Br Med J. 1 (5689): 170–175. doi:10.1136/bmj.1.111.170. PMC 1699088. PMID 5370039.
- Compston N. D., Dimsdale H. E., Ramsay A. M., Richardson A. T.; Dimsdale; Ramsay; Richardson (February 1970). "Epidemic Malaise". Br Med J. 1 (5692): 362–363. doi:10.1136/bmj.1.5692.362-a. PMC 1699022.CS1 maint: Multiple names: authors list (link)
- Acheson E. D. (February 1970). "Epidemic Malaise". Br Med J. 1 (5692): 363–4. doi:10.1136/bmj.1.5692.363-b. PMC 1698971.
- Gosling PH (February 1970). "Epidemic malaise". Br Med J. 1 (5694): 499–500. doi:10.1136/bmj.1.5694.499-b. PMC 1699452. PMID 5435167.
- Purke GJ (February 1970). "Epidemic malaise". Br Med J. 1 (5694): 500. doi:10.1136/bmj.1.5694.500. PMC 1699458. PMID 5435168.
- Hopkins EJ (February 1970). "Epidemic malaise". Br Med J. 1 (5694): 500–1. doi:10.1136/bmj.1.5694.500-a. PMC 1699426. PMID 5435169.
- Galpine JF (February 1970). "Epidemic malaise". Br Med J. 1 (5694): 501. doi:10.1136/bmj.1.5694.501. PMC 1699416. PMID 5435170.
- Poskanzer DC (May 1970). "Epidemic malaise". Br Med J. 2 (5706): 420–1. doi:10.1136/bmj.2.5706.420-b. PMC 1700311. PMID 5420612.
- Parish JG (July 1970). "Epidemic malaise". Br Med J. 3 (5713): 47–8. doi:10.1136/bmj.3.5713.47-c. PMC 1700986. PMID 4316803.
- Hooper M (2006). "Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research". J Clin Pathol. 60 (5): 466–71. doi:10.1136/jcp.2006.042408. PMC 1994528. PMID 16935967.
- Evengård B, Schacterle RS, Komaroff AL; Schacterle; Komaroff (November 1999). "Chronic fatigue syndrome: new insights and old ignorance". J. Intern. Med. 246 (5): 455–69. doi:10.1046/j.1365-2796.1999.00513.x. PMID 10583715.CS1 maint: Multiple names: authors list (link)[dead link]
- David AS, Wessely S, Pelosi AJ; Wessely; Pelosi (March 1988). "Postviral fatigue syndrome: time for a new approach". Br Med J (Clin Res Ed). 296 (6623): 696–9. doi:10.1136/bmj.296.6623.696. PMC 2545306. PMID 3128374.CS1 maint: Multiple names: authors list (link)
- Stricklin A, Sewell M, Austad C; Sewell; Austad (January 1990). "Objective measurement of personality variables in epidemic neuromyasthenia patients". S. Afr. Med. J. 77 (1): 31–4. PMID 2294610.CS1 maint: Multiple names: authors list (link)
- No authors listed (3 June 1978). "Epidemic myalgic encephalomyelitis". Br Med J. 1 (6125): 1436–7. doi:10.1136/bmj.1.2791.1436-a. PMC 1604957. PMID 647324.
- Showalter, Elaine (1997). Hystories: hysterical epidemics and modern media. New York: Columbia University Press. pp. 132. ISBN 978-0-231-10459-3.
- "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. Retrieved 25 June 2010.
- Hawkes, N. (22 June 2011). "Dangers of research into chronic fatigue syndrome". BMJ. 342 (jun22 1): d3780. doi:10.1136/bmj.d3780. PMID 21697226.