As background for the remainder of the report, this chapter presentsa brief history of ME/CFS, a discussion of the terminology used for thisillness, and a summary of the burden it imposes in the United States.
HISTORY OF ME/CFS
As noted in Chapter 1,“ME/CFS” is an umbrella term that includes myalgicencephalomyelitis (ME) and chronic fatigue syndrome (CFS). For decades,clinicians and researchers developed separate case definitions anddiagnostic criteria for ME (Carruthers et al., 2011; Hyde, 2007; Ramsay,1988a) and CFS (f*ckuda etal., 1994; Holmes et al.,1988; Kitani et al.,1992; Reeves et al.,2005; Sharpe,1991), although the terms describe conditions with similar symptomsand unknown etiology. In the World Health Organization'sInternational Classification of Diseases, TenthRevision, which will be implemented in October 2015, both ME and CFS arecoded identically and classified as disorders of the nervous system (ICDG93.3). However “fatigue syndrome,” which clinicians may viewas synonymous with CFS, is classified under mental and behavioral disorders(ICD F48.0).1
More recent efforts to develop diagnostic criteria for this condition(s) haveused the term “ME/CFS” or “CFS/ME” (Carruthers and van de Sande,2005; Carruthers et al.,2003; Government of SouthAustralia et al., 2004; Jason et al., 2006b, 2010; NICE, 2007).However, there is still disagreement as to whether ME and CFS are separateconditions or are similar enough to belong under an umbrella term such asME/CFS (Jason et al.,2014).
Myalgic Encephalomyelitis
Beginning in 1934, a series of outbreaks of a previously unknown illnesswere recorded around the world (Acheson, 1959; Parish, 1978, 1980). The illness was initially confused withpoliomyelitis, but it was eventually differentiated and became known as“epidemic neuromyasthenia” (Parish, 1978). The term “benignmyalgic encephalomyelitis” was first used in the 1950s todescribe a similar outbreak at the Royal Free Hospital in London (Wojcik et al., 2011). Thedetails of each outbreak vary, but in general, patients experienced avariety of symptoms, including malaise, tender lymph nodes, sore throat,pain, and signs of encephalomyelitis (Lancet, 1955). Although the cause of thecondition could not be determined, it appeared to be infectious, and theterm “benign myalgic encephalomyelitis” eventually waschosen to reflect “the absent mortality, the severe muscularpains, the evidence of parenchymal damage to the nervous system, and thepresumed inflammatory nature of the disorder” (Acheson, 1959, p. 593). Thesyndrome usually appeared in epidemics, but some sporadic cases wereidentified as well (Price,1961).
In 1970, two psychiatrists in the United Kingdom reviewed the reports of15 outbreaks of benign myalgic encephalomyelitis and concluded thatthese outbreaks “were psychosocial phenomena caused by one of twomechanisms, either mass hysteria on the part of the patients or alteredmedical perception of the community” (McEvedy and Beard, 1970, p. 11). They basedtheir conclusions on the higher prevalence of the disease in females andthe lack of physical signs in these patients. The researchers alsorecommended that the disease be renamed “myalgia nervosa.”Although these findings were strongly refuted by Dr. Melvin Ramsay, theproposed psychological etiology created great controversy and convincedhealth professionals that this was a plausible explanation for thecondition (Speight,2013).
Over time, Dr. Ramsay's work demonstrated that, although thisdisease rarely resulted in mortality, it was often severely disabling,and as a result, the prefix “benign” was dropped (Ramsay, 1988a; Ramsay et al., 1977; Wojcik et al., 2011). In1986, Dr. Ramsay published the first diagnostic criteria for ME, acondition characterized by a unique form of muscle fatigability whereby,even after a minor degree of physical effort, 3 or more days elapsebefore full muscle power is restored; extraordinary variability orfluctuation of symptoms even in the course of one day; and an alarmingchronicity (Ramsay,1986).
Despite Dr. Ramsay's work and a U.K. independent reportrecognizing that ME is not a psychological entity (CFS/ME Working Group, 2002), the health carecommunity generally still doubts the existence or seriousness of thisdisease. This perception may partly explain the relatively limitedresearch efforts to study ME in fields other than psychiatry andpsychology.
Chronic Fatigue Syndrome
In the mid-1980s, two large outbreaks of an illness in Nevada and NewYork resembling mononucleosis attracted national attention. The illnesswas characterized by “chronic or recurrent debilitating fatigueand various combinations of other symptoms, including sore throat, lymphnode pain and tenderness, headache, myalgia, and arthralgias”(Holmes et al., 1988,p. 387). The illness was initially linked to Epstein-Barr virus andbecame known as “chronic Epstein-Barr virus syndrome”(Holmes et al., 1988).In 1987, the Centers for Disease Control and Prevention (CDC) convened aworking group to reach consensus on the clinical features of theillness. This group recognized that CFS was not new and had been knownby many different names throughout history, “each reflecting aparticular concept of the syndrome's etiology andepidemiology” (Straus,1991, p. S2). Many of these names were gradually rejected asnew research ruled out various causes of the illness, includingEpstein-Barr virus. Therefore, the CDC group chose “chronicfatigue syndrome” as a more neutral and inclusive name, notingthat “myalgic encephalomyelitis” was the name mostaccepted in other parts of the world (Holmes et al., 1988). The first definitionof CFS was published in 1988, and although the cause of the illnessremains unknown, there have been several attempts to update thisdefinition (f*ckuda et al.,1994). Chapter 3provides more information on some of the most recent case definitionsand diagnostic criteria.
TERMINOLOGY
Although a variety of names have been proposed for this illness, the mostcommonly used today are “chronic fatigue syndrome,”“myalgic encephalomyelitis,”2 and the umbrella term“ME/CFS.” Reaching consensus on a name for this illness isparticularly challenging in part because its etiology and pathology remainunknown (CFS/ME Working Group,2002). For years, patients, clinicians, and researchers havedebated changing the name of the illness.
The term “chronic fatigue syndrome” has been the object ofparticular criticism from patients, as reflected in hundreds of comments thecommittee received from the public, both in person and electronically,during the course of this study (FDA,2013).3Surveys conducted by ME/CFS advocacy organizations have found that 85 to 92percent of respondents want that name to be changed (Jason et al., 2004). Their most commoncomplaints are that this name is stigmatizing and trivializing, causingpeople not to take the disorder seriously (Jason and Richman, 2008). Patients and advocatestold the committee that the name “chronic fatigue syndrome”leads others, including clinicians, to think that patients are malingeringand to ask whether the illness is “real.” Patients reportedthat many clinicians are dismissive, making such comments as “I feeltired all the time, too.”4 Many respondents objected specifically to the use of“fatigue” in the name because they do not believe fatigue tobe the defining characteristic of this illness.5 For example, the following comment wassubmitted to the committee:
I believe that the words “Chronic Fatigue” are the kiss ofdeath. Who in this over-wrought, stress-driven society isn't“fatigued” a good deal of the time? What peopledon't get is that this fatigue for people like me keeps me in bedfor days at a time and prevents me from doing everyday errands and evensimple house tasks on some days.6
In addition to difficult interactions with health care providers, patientshave reported several other ways in which the stigmatization of ME/CFSaffects them, including financial instability (such as job loss ordemotion), social disengagement, and feeling the need to hide their symptomsin front of others (Assefi et al.,2003; Dickson et al.,2007; Green et al.,1999).
Comments submitted to the committee also noted that other illnesses, such asParkinson's disease, are not named after their symptoms.7 Patients often pointedout that ME/CFS, which includes symptoms in multiple systems that occur foran extended period of time, involves much more than fatigue, a level ofcomplexity and impact not conveyed by the term “chronic fatiguesyndrome.” The term “chronic fatigue syndrome” also maybe difficult to understand in populations where English is not the primarylanguage (Bayliss et al.,2014). Many patients prefer “myalgicencephalomyelitis,” a term first used in 1956, because they believeit better reflects the medical nature of the illness (Jason et al., 2004; Ramsay, 1988b). However, there are patients andresearchers who maintain that ME and CFS are two different illnesses andoppose simply changing the name of CFS to ME (Twisk, 2014).8
Partly in response to the concerns that have been expressed about CFS and toa lesser extent ME, particularly by patients, the committee was asked torecommend whether new terminology for ME/CFS should be adopted, a requestthat is addressed in Chapter 7.As noted in Chapter 1, thecommittee uses the umbrella term “ME/CFS” to refer to ME andCFS throughout this report.
BURDEN OF ME/CFS
My personal experience of having ME/CFS feels like permanently having theflu, a hangover, and jet lag while being continually electrocuted (whichmeans that pain plays at least as much of a role in my condition asfatigue).9
As noted in Chapter 1, ME/CFSaffects between 836,000 and 2.5 million people in the United States (Jason et al., 1999, 2006a; Reynolds et al., 2004). It affects more womenthan men, and although many seeking care for ME/CFS are Caucasian, theillness may be more common in minority groups (Jason et al., 1999, 2009, 2011; Reyes et al.,2003). The average age of onset is 33, although ME/CFS may beginas early as age 10 and as late as age 77 (NIH, 2011). Symptoms can persist for years, andmost patients never regain their premorbid level of health or functioning(Nisenbaum et al., 2000;Reyes et al., 2003; Reynolds et al., 2004). Theduration of ME/CFS and the potentially debilitating consequences of symptomscan be an enormous burden for patients, their caregivers, the health caresystem, and society.
Disability and Impairment
Several ME/CFS symptoms—including fatigue, cognitive dysfunction,pain, sleep disturbance, post-exertional malaise, and secondarydepression or anxiety—may contribute to impairment or disability(Andersen et al.,2004; Tiersky et al.,2001). Patients with ME/CFS have been found to be morefunctionally impaired than those with other disabling illnesses,including type 2 diabetes mellitus, congestive heart failure,hypertension, depression, multiple sclerosis, and end-stage renaldisease (Jason and Richman,2008; Twisk,2014). Symptoms can be severe enough to preclude patientsfrom completing everyday tasks, and 25-29 percent of patients reportbeing house- or bedbound by their symptoms. Many patients feel unable tomeet their family responsibilities and report having to reduce theirsocial activities (NIH,2011). However, these data include only patients who werecounted in clinics or research studies and may underrepresent the extentof the problem by excluding those who are undiagnosed or unable toaccess health care (Wiborg etal., 2010). More information on disability in ME/CFS can befound in Appendix C.
Health Care Costs and Utilization
Patients with ME/CFS spend considerably more on health care than thegeneral medical patient population (Twemlow et al., 1997). They also see morephysicians and visit their health care providers more often relative tothe general medical patient population (Thanawala and Taylor, 2007; Twemlow et al., 1997). Manypatients report barriers to accessing health care as well, including thenature of their illness and financial considerations (Lin et al., 2009; Thanawala and Taylor,2007).
Household Income
ME/CFS symptoms often are so debilitating that patients are unable towork or attend school full-time (Crawley et al., 2011; Solomon et al., 2003; Taylor and Kielhofner, 2005; Twemlow et al., 1997). A review of 15studies conducted between 1966 and 2004 showed that unemployment ratesamong those with the disorder ranged from 35 to 69 percent in 13 ofthese studies (Taylor andKielhofner, 2005). ME/CFS was found to account for $8,554 inlost household earnings, 19 percent of which was attributable to lowereducational attainment (Lin etal., 2011). Another study, conducted among ME/CFS patients inKansas, found that ME/CFS resulted in reduced household and labor forceproductivity that caused individual income losses of approximately$20,000 annually (Taylor andKielhofner, 2005). Reductions in employment and productivityper hour resulted in a 37 percent reduction in household productivityand a 54 percent reduction in labor force productivity (Reynolds et al., 2004).
Economic Costs
As noted, ME/CFS often lasts for many years, and beyond lost income,inflicts substantial economic costs at both the individual and thesocietal level. In one study, annual direct medical costs per ME/CFSpatient ranged from $2,342 in a community-based sample (previouslyundiagnosed) to $8,675 in a tertiary sample (already diagnosed) (Jason et al., 2008). Anotherstudy found that individuals with ME/CFS incurred $3,286 in annualdirect medical costs (Lin et al.,2011). The direct and indirect economic costs of ME/CFS tosociety are estimated to be approximately over $18 to $24 billionannually (Jason et al.,2008).
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- 1
The World Health Organization's InternationalClassification of Diseases, Tenth Revision, can be accessedat http://apps
.who.int/classifications /icd10/browse/2015/en(accessed February 13, 2015). - 2
The most commonly used term around the world is “myalgicencephalomyelitis,” although a U.S. consensus group endorsed“encephalopathy” instead. The committee uses the formerterm throughout this report.
- 3
Personal communication; public comments submitted to the IOM Committee onthe Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic FatigueSyndrome for meeting 3, 2014.
- 4
Ibid.
- 5
Ibid.
- 6
Ibid.
- 7
Ibid.
- 8
Ibid.
- 9
Ibid.
