Going Mental: the ME/CFS Debate by Cort Johnson
There has been a great need to thwart the view, particularly outside the US, that CFS and/or ME is a psychological disorder. UK ME advocates, in particular, have played a valuable role in doing so. But some have used emotional distress as a kind of litmus test to distinguish CFS and ME patients. They suggest that a significant number of CFS patients have an undiagnosed psychological disorder. It’s true that the International (1994) definition of CFS may allow some patients with difficult to characterize emotional disorders entry into research studies. But it’s also true that CFS can, with its many other symptoms, affect both cognition and the emotions; the presence of emotional distress or an emotional disorder does not mean one doesn’t have the unique disorder called CFS”. The same is true with regard to myalgic encephalomyelitis.
One prominent ME advocate told me that in contrast to ME patients CFS patients are ‘nervous, anxious people’. This is not only unfair to CFS patients but completely at odds with the history of ME. Emotional disturbance has, in fact, played a much larger role in research reports of ME patients than they have in CFS patients. This may because ME symptoms were characterized during an era in which careful clinical descriptions of a disease frequently appeared in the scientific literature. Yet even the much derided 1994 Fukuda (International) definition of CFS convened under the auspices of an agency – the CDC – which some ME advocates accuse of fostering an psychiatric view of CFS does not make reference to emotional problems in CFS. In contrast the history of clinically reported emotional disruption in myalgic encephalomyelitis is a long one.
Emotional Distress in ME
In Acheson’s large 1959 overview he reports that ‘mental symptoms…. have been an almost constant feature of more recent outbreaks” Acheson directly quoted an Los Angeles Hospital outbreak researcher on the ‘perplexity’ physicians have felt in dealing with these symptoms.”The emotional upsets are difficult to interpret. They varied in degree fro relatively slight displays of irritability and impatience to violent manifestations of dislike…A common type of upset consisted of crying spells resulting from no known provocation.”
In the New York State (1954) outbreak ‘marked mental depression‘ was reported in the 11/19 cases. In the Adelaide outbreak ‘nervousness, unprovoked crying spells, difficulty in concentration, undue irritability and anxiety occurred in nineteen of twenty-six patients” The Punta Gorda outbreak of 1956 was ‘marked by fatigue, headache, pains in the back and limbs, pain the back and limbs, depression and instability“. In the Addington Hospital outbreak in Durban (1955) ‘mental symptoms were prominent, particularly in the severer cases and included defective concentration and memory, drowinesss, emotional instability and nightmares”
In one of the best reported outbreaks, the Royal Free Hospital outbreak (1955), among the many symptoms reported ‘hypsomnia, nightmares, panic states, uncontrolled weeping and amnesia were frequent symptoms in the acute stage. In six patients severe mental illness developed…”
While many of the troubling central nervous system symptoms such as paralysis disappeared early in the disease the emotional ones did not appear to. Acheson reported that ‘emotional lability, irritability, depression and lack of concentration appeared in convalescence and were extremely troublesome” Seven to ten months after the Akureyri outbreak “nervousness, fatigue and persistent muscular pains were common.” Six years later about 2/3rds of Akureyri patients still complained of ‘nervousness and tiredness’. Five months into the Punta Gorda outbreak ‘nervous tensions“ and”depression“ were common. Two years after the Alaska outbreak “emotional instability, tension, poor concentration and memory defects were extremely common“
Dr. Acheson will make a case against hysteria in ME by noting that “depression and undue emotional lability have been the rule” in this disease. He thought these symptoms were consistent with cerebral damage and noted that the mental symptoms of encephalitis could be confused with psychoneurosis.
In 1975 Dr. Ryll in Davis, California will note that “panic is common and can be severe” in his patients, and while he will take some pains to note that the depression seen was probably due to the difficulty of diagnosing, treating, etc. the disease, that it, too, was common. Ramsey noted that ‘encephalitic disturbances include depression, emotional lability and difficulty in concentration”
Later UK researchers will report that” Some patients developed an acute anxiety state, often accompanied by depression. (Fagan et. al. 1983) and that ‘The other predominant symptoms were those related to psychological health, and nearly all patients suffered from either anxiety or depression, but usually a combination of both” (Keighly and Bell 1983).
The 1994 “London Criteria’ developed by Dowsett, Goudsmit, Shepard et. al. coupled the cognitive problems in ME with ‘ other neurological and psychological disturbances such as emotional lability, nominal dysphasia, disturbed sleep patterns”, etc.
Conclusion. Along with its many other symptoms emotional problems have been a prominent and well documented feature of ME throughout its history and have played a larger role in delineating the disease than they have in CFS. Therefore degrees of emotional distress cannot and should not be used to separate the two diseases. ME advocates disavowal that psychology plays a prominent role in ME is understandable but does not obscure the fact that emotional distress is often part and parcel of the disease process in ME (and CFS)- something perhaps not surprising in a disease that effects the central nervous system.
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Acheson, E. 1959. The Clincal Syndrome variously called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia.
Erich D. Ryll, M.D.1975. Infectious Venulitis, Chronic Fatigue Syndrome and Myalgic Encepaholomyelitis.
Fegan K., Behan, P., and E. Bell. 1983. Myalgic encephalomyelitic -report of an epidemic. Journal of the Royal College of General Practitioners 335-337.
Keighly, B and E. Bell. 1983. Sporadic myalgic encephalomyelitis in a rural practice. Journal of Royal College of General Practitioners 339-41).
Ramsey, A., Dowsett, E., Dadswell, J., Lyle, W. and J. Parish. 1977. Icelandic Disease (benign myalgic encephalomyelitis or Royal Free disease). British Medical Journal 21 May, 1350/