Every person who suffers from CFS knows there is much more to the illness than just fatigue. The name of the illness reflects the one symptom that is common to all people with CFS, but it tends to trivialise the disorder. 'Chronic Fatigue Syndrome' quickly becomes 'chronic fatigue' in the media, and even in some articles in medical journals. This in turn creates a distorted public perception of the syndrome.
'Chronic Fatigue Syndrome' is the name given to the illness in 1988 by a group of researchers in the USA. This title quickly gained acceptance in the research fraternity, and was soon adopted by the Royal Australasian College of Physicians. No-one believes this label is adequate; one investigator has likened it to calling diabetes 'chronic thirst syndrome'. The name found acceptance because it was all-embracing: it did not imply a cause (as did postviral fatigue syndrome), and it did not include symptoms that were found only in some patients (as in the case of myalgic encephalomyelitis, which specifies myalgia, encephalitis and myelitis).
Fatigue in itself is not necessarily an unpleasant experience; yet Chronic Fatigue Syndrome is always unpleasant. One reason for this is the range of symptoms which accompanies the fatigue ñ symptoms which make the sufferer feel unwell, or uncomfortable. These additional symptoms vary between individuals, but can be extremely distressing and disabling.
frequently catalogued the symptoms and signs of their CFS patients.
Table 1 presents those experienced by a group of 164 patients with
postviral fatigue syndrome in Scotland. The table gives no indication of
the severity of the symptoms.
* From: Miller, N A, Carmichael, H A et al., 'Antibody to Coxsackie B Virus in Diagnosing Postviral Fatigue Syndrome', British Medical Journal 1991; 302:140-3. Data are for IgM negative patients.
As the illness recedes and patients recover, some symptoms occur less frequently or disappear. One study documented symptoms in three groups of CFS patients in the USA, all of whom at some stage met CDC diagnostic criteria: those with severe symptoms (Group A); those with moderate symptoms (Group B); and those with mild symptoms (Group C). As can be seen from Table 2, the frequency of symptoms varies greatly between groups of individuals when illness severity is taken into account.
(n=number of patients in group)
* From: Landay, A L, Jessop, C et al., 'Chronic Fatigue Syndrome: Clinical Condition Associated with Immune Activation', Lancet 1991; 338: 707-12.
#In most cases, onset of depression occurred six months after onset of illness.
Many of the patients in Group C have clearly moved outside research definitions of Chronic Fatigue Syndrome with the improvement in their health.
It is currently difficult to compare symptoms of CFS patients in different countries because researchers have not used uniform methods of obtaining and reporting this information. This problem should be overcome with the introduction of the diagnostic questionnaire, which has been tested in a multi-national collaborative study co-ordinated by the Sydney research team.
It is likely that more than one disease process can cause CFS, perhaps explaining the diversity of symptoms that are reported within large patient groups. Sub-groups of CFS may be identified in the future. For the time being, however, the medical profession will continue to use the term 'Chronic Fatigue Syndrome', at least until they are better able to define the illness(es) involved. Sufferers around the world will welcome the day when more accurate nomenclature is adopted, and when the phrase 'chronic fatigue' can no longer be used as a substitute name for this complex and devastating syndrome.
Reprinted from Emerge, September 1993.
I am NOT a medical professional.
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