ME/CFS Skeptic
Senior Member (Voting Rights)
2) Case definitions of ME/CFS should require the presence of post-exertional malaise
Post-exertional malaise (PEM) or a marked symptom exacerbation after minimal exertion is considered to be the hallmark symptom of ME/CFS and should therefore be a mandatory requirement in diagnostic criteria for this illness.
For several decades, PEM has been described as the characteristic symptom of ME/CFS. In 1985, Behan et al. emphasized that all of the 50 postviral fatigue syndrome patients in their study had “the same primary symptom that of gross fatigue made worse by exercise.” [1] Thirty years later, an influential report by the National Academy of Medicine described ME/CFS as a systemic exertion intolerance disease, noting there to be “sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS from other conditions.” [2] PEM helps to differentiate ME/CFS from related conditions such as depression [3], multiple sclerosis [4] or chronic idiopathic fatigue [5] and is predictive of a poor prognosis [6].
Some of the characteristics of PEM may be unique to the ME/CFS patient population. An in-depth investigation of PEM by researchers at Stanford University concluded:
We therefore recommend that diagnostic criteria for ME/CFS require the presence of PEM. The most commonly used case definition, the so-called Fukuda-criteria [8], do not meet these standards and should therefore be amended or retired.
References:
[1] Behan PO, Behan WM, Bell EJ. The postviral fatigue syndrome--an analysis of the findings in 50 cases. J Infect. 1985 May;10(3):211-22.
[2] Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, D.C.: The National Academies Press, 2015.
[3] Hawk C, Jason LA, Torres-Harding S. Differential diagnosis of chronic fatigue syndrome and major depressive disorder. Int J Behav Med. 2006;13(3):244-51.
[4] Cotler J, Holtzman C, Dudun C, Jason LA. A Brief Questionnaire to Assess Post-Exertional Malaise. Diagnostics (Basel). 2018 Sep 11;8(3). pii: E66.
[5] Maes M, Twisk FN, Johnson C. Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Chronic Fatigue (CF) are distinguished accurately: results of supervised learning techniques applied on clinical and inflammatory data. Psychiatry Res. 2012 Dec 30;200(2-3):754-60.
[6] Taylor RR, Jason LA, Curie CJ. Prognosis of chronic fatigue in a community-based sample. Psychosom Med. 2002 Mar-Apr;64(2):319-27
[7] Chu L, Valencia IJ, Garvert DW, Montoya JG. Deconstructing post-exertional malaise in myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross- sectional survey. PLoS One. 2018 Jun 1;13(6):e0197811.
[8] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med. 1994 Dec 15;121(12):953-9.
Post-exertional malaise (PEM) or a marked symptom exacerbation after minimal exertion is considered to be the hallmark symptom of ME/CFS and should therefore be a mandatory requirement in diagnostic criteria for this illness.
For several decades, PEM has been described as the characteristic symptom of ME/CFS. In 1985, Behan et al. emphasized that all of the 50 postviral fatigue syndrome patients in their study had “the same primary symptom that of gross fatigue made worse by exercise.” [1] Thirty years later, an influential report by the National Academy of Medicine described ME/CFS as a systemic exertion intolerance disease, noting there to be “sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS from other conditions.” [2] PEM helps to differentiate ME/CFS from related conditions such as depression [3], multiple sclerosis [4] or chronic idiopathic fatigue [5] and is predictive of a poor prognosis [6].
Some of the characteristics of PEM may be unique to the ME/CFS patient population. An in-depth investigation of PEM by researchers at Stanford University concluded:
“There exists no medical condition the authors are familiar with where exertion or emotional distress causes immune/ inflammatory-related symptoms like sore throat, tender lymph nodes, or flu-like feelings, yet 60% and 36% of our subjects, respectively, reported these symptoms with either stimuli and about a quarter experienced all 3 with exertion.” [7]
We therefore recommend that diagnostic criteria for ME/CFS require the presence of PEM. The most commonly used case definition, the so-called Fukuda-criteria [8], do not meet these standards and should therefore be amended or retired.
References:
[1] Behan PO, Behan WM, Bell EJ. The postviral fatigue syndrome--an analysis of the findings in 50 cases. J Infect. 1985 May;10(3):211-22.
[2] Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, D.C.: The National Academies Press, 2015.
[3] Hawk C, Jason LA, Torres-Harding S. Differential diagnosis of chronic fatigue syndrome and major depressive disorder. Int J Behav Med. 2006;13(3):244-51.
[4] Cotler J, Holtzman C, Dudun C, Jason LA. A Brief Questionnaire to Assess Post-Exertional Malaise. Diagnostics (Basel). 2018 Sep 11;8(3). pii: E66.
[5] Maes M, Twisk FN, Johnson C. Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Chronic Fatigue (CF) are distinguished accurately: results of supervised learning techniques applied on clinical and inflammatory data. Psychiatry Res. 2012 Dec 30;200(2-3):754-60.
[6] Taylor RR, Jason LA, Curie CJ. Prognosis of chronic fatigue in a community-based sample. Psychosom Med. 2002 Mar-Apr;64(2):319-27
[7] Chu L, Valencia IJ, Garvert DW, Montoya JG. Deconstructing post-exertional malaise in myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross- sectional survey. PLoS One. 2018 Jun 1;13(6):e0197811.
[8] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med. 1994 Dec 15;121(12):953-9.
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