Severity in ME/CFS: The Problems Examined
Jill
Booth Bsc
14 Nelson Street
Howick
Auckland
New Zealand
Telephone:
(64) 9 534 6392
Facsimile: (64) 9 262 3257
Email: jill@ihug.co.nz
It is only recently that published papers have addressed issues of severity
(Komaroff, 1996; Buchwald,1996) and quality of life (Schweitzer, 1995;
Anderson & Ferrans, 1997) of patients suffering from Chronic Fatigue Syndrome.
CFS appears to show continua in both illness severity and illness duration.
At the extreme end of both spectrums are the severely ill and longterm
cases. Hyde's (1992) monograph provides one of the few sources of descriptive
information about this group. Overall there is a paucity of documented
follow up about these patients. It is more than timely that this subset
of CFS patients be further explored.
The aim of this poster is to paint a picture of severely affected/longterm
cases of CFS. Severe and striking symptoms/problems will be given most
emphasis in the hope that clues may be elucidated in order to prompt further
enquiry. The intention is not to draw conclusions but to simply observe,
describe, question and bear witness to patients who have without doubt
suffered medical neglect as well as severe disease. It does not set out
to be a rigorous analysis, rather an illustration of a problem which requires
serious acknowledgement, urgent attention and further research.
Three severe/longterm cases of CFS gave consent to be involved with the
exploration. All three patients lived in the Auckland region of New Zealand.
All 3 patients satisfied the inclusionary CDC criteria for CFS (Fukuda
et al, 1994) It was assumed that the diagnosis of CFS had been made correctly
in each case. Severe is defined by this author as: - cases of longer than
10 years duration; inability to live independently of others; inability
to do any kind of work; symptom severity so bad that patients are mostly
bedridden (80% time) and where no other diagnosis has been forthcoming.
The author travelled to see each patient at least once to conduct the
following:
- Semi-structured interviews (which were tape recorded). Basic history was taken and noted, but emphasis was given to the symptoms and needs of the patients as presented in December 1997.
- A supplementary questionnaire was left with each patient which they returned by mail .
- Pulse and blood pressure measures were taken when lying prone, standing (if possible, sitting if not), and immediately prior to collapse from sitting/standing position. Relevent time measures were recorded.
A mixed media, pastiche poster (including descriptions, photographs, quotations,
raw data etc) will demonstrate the salient information gathered.
This will highlight the key problems faced by this group and identify
issues that need particular recognition and urgent attention.
Anderson JS & Ferrans CE. The Quality of Life of Persons with Chronic
Fatigue Syndrome. J of Nerv Ment Dis 185:359-367,1997
Buchwald D et al. Functional Status in Patients with Chronic Fatigue Syndrome, other fatiguing illnesses, and healthy individuals. Am J Med. 171 :364-370,1996
Fukuda et al. The Chronic Fatigue Syndrome: a comprehensive approach to its definition and study.Ann Intern Med 121:953-959, 1994
Hyde B The Clinical and Scientific Basis of Myalgic Encephalomyelitis, (Proceedings of the Cambridge Easter Symposium 1990) Nightingale Foundation, 1992
Komaroff A et al. Health status in patients with Chronic Fatigue Syndrome and in healthy population and disease comparison groups. AM J Med. 101:281 -290, 1996
Sweitzer R et al. Quality of Life in Chronic Fatigue Syndrome. Soc Sci & Med 41 :10,1367- 1372,1995
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