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Herman J. Woltring
03-30-1991, 09:36 AM
Dear Biomch-L readers,

During a recent visit to a relative affected by Myalgic Encephalomyelitis,
I realised that this relatively unknown and all but rare affliction deserves
to be discussed on our list: in my mind, Biomch-L should not only be con-
cerned with Biomechanics and with neural or cognitive control, but also with
other aspects of movement and its problems.

Herman J. Woltring, Eindhoven/NL

oooooooooooooooooooooooooooooooooooooooooooooooooo ooooooooooooooooooooooooo

Getting tired is a normal experience, and may, perhaps, be viewed as one of
our most common complaints, whether we sit for hours behind a computer ter-
minal, or conduct more explicit, physical exercise. "However, the fatigue
experienced by individuals with the disease known as the Chronic Fatigue
Syndrome (CFS or ME - Myalgic Encephalomyelitis) is different from the type
of fatigue we experience in everyday life or after unusual physical activity.
The hallmark of this illness is severe fatigue that a) comes on suddenly, b)
is relentness or relapsing and c) causes debilitating tiredness often for no
apparent reason. A small amount of physical activity or emotional stress is
often sufficient to produce profound and long-lasting fatigue (...) that is
not relieved by rest or a good night's sleep." [1]. Furthermore, various
neurological (encephalitic) symptoms occur commonly, especially lack of
concentration, loss of memory, and perceptional disturbances. Sadly, the
disease is insufficently known among medical practitioners, and often dis-
missed as a purely hysterical or hypochondriac affliction without organic
substrate. In view of recent findings, it is, therefore, a good candidate
for dissemination of research results into medical practice as mentioned
on this list a few days ago.

The first documented, epidemic occurrence of ME/CFS was in 1934 in a Los
Angeles hospital. It is not a rare disease - conservative estimates suggest
that at least 1 person in every thousand has it. Thus, it has the same
incidence as Parkinson's disease, and a higher incidence than Multiple
Sclerosis. "Sixty to 70 percent of CFIDS patients will be significantly
ill for one to three years, but will be able to go back to work and continue
functioning within that time frame" (1989 journal quote from Paul Cheney MD,
Nall Clinic, Charlotte, NC, USA). A secure cure is not known at the present
time, but symptoms can be controlled through vitamin therapy, avoidance of
aerobic activity, and a number of drugs.

ME/CFS has been known under many other, sometimes inappropriate names;
various of them are country-specific:

- Acquired Neurasthenia (Kraepelin, 1891)
- Epidemic Neurasthenia
- Chronic Immune Dysfunction Syndrome (CIDS)
- Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
- Icelandic Disease (from an epidemic in Iceland, '48-'49)
- Royal Free Disease (from an epidemic in a London hospital, 1955)
- Postviral Fatigue Syndrome (incorrect: not specifically postviral)
- Chronic Epstein-Barr Virus Syndrome
- Yuppy Disease or Yuppy Flu (incorrect: not specific for "yuppies")
- Chronic Flu

While CFS is the most common name in the USA, the term ME seems prevalent
in the rest of the world.

Dr Byron Hyde (Ottawa, Canada), one of the organisers of the First World
Symposium on ME/CFS in Cambridge/UK, 9-12 April 1990, states in his summary
of the Proceedings [2]:

"Within the group of viral-immunological illnesses common to the temperate
world, ME/CFS represents a major world health and economic threat second only
to AIDS. Yet governments persist in turning their backs to this health dis-
aster. The majority of adult ME/CFS patients in all countries are teachers,
health care workers, clergy, flight attendants and their immediate families.
These individuals are involved in jobs of high contact with a potentially
ill public or a public recently vaccinated or immunized. They also represent
professions that receive more immunizations & vaccinations. We do not know
whether these relationships are real or coincidental. These patients tend to
represent expensively educated individuals, essentially employed in assisting
the public welfare. The cost of their unemployment represents a major loss
to the state and to their community, as well as to their families. It is
incredible that governments have not taken this threat more seriously. Yet
there is no national government that has contributed significant funds to
help solve this problem." (p. 12).

It seems that ME/CFS cannot be conclusively diagnosed, and that only by
eliminating other, better diagnosable diseases, ME/CFS remains as the only
possible alternative. At the same time, lack of familiarity among medical
practitioners seems responsible in part for a common misdiagnosis as a purely
psychiatric/psychological deviation; only in recent years, evidence has been
collected that other, immunology-related causes may be identifiable, and that
any "psychological disturbance is likely to be a consequence of, rather than
a antecedent risk factor to the syndrome" [3]. By contrast, the famous
European psychiatrist Emil Kraepelin, a pupil of Wundt's, wrote one century
ago:

"Acquired neurasthenia is characterised by a diminished power of
attention, distractability, defective mental application, difficulty
of thinking, an increased susceptibility to fatigue, and a greater
variety of physical symptoms, mostly subjective, including hypochon-
driasis." (1891, first published in 1907 [3]).

Research in ME/CFS is increasing; the present level of interest is apparent
from the existence of relatively young patient societies with their own
Newsletters, and by a small number of academic articles, PhD-theses, and
books [e.g., 4-6]. The recent book by Anne Macintyre, a British physician
and ME/CFS patient [6], can be recommended from a patient's point a view.

Research is ongoing at, a.o., The School of Medicine at the University of New
South Wales/AUS, at Nijmegen University/NL, at the Center for Disease Control
in Atlanta, GA, USA, and at the National Institutes of Health in Bethesda,
MD, USA. Dr A.R. Lloyd, who recently acquired a PhD on an ME/CFS study at
NSW [5], is currently continuing his research at NIH.


Some patient societies and foundations:

AUS & NZ: ANZMES (Australian & NZ ME Society) Inc., P.O. Box 35-429,
Browns Bay, AUCKLAND 10, New Zealand (various provincial Societies
in Australia).

B: AFZ ME, Predikherenstraat 2, B - 3000 LEUVEN, Belgium

CND: ME Association of Canada, 400-426 Queen Street, OTTAWA, Ont. K1P 5E4

N: Norges ME Foerening, Gullerasveien 14B, OSLO 3, Norway

NG: New Guinea ME Society, P.O. Box 44, Ukarumpa, Via Lac, Papua, New Guinea

NL: Myalgische Myoencephalomyelitis Stichting (ME Foundation),
P.O. Box 116, NL - 1120 AC LANDSMEER (Mrs Marion Lescrauwaet)

UK: (1) ME Association, P.O. Box 8, STANFORD-LE-HOPE, Essex SS17 8EX
(2) ME Action Campaign, P.O. Box 1126, LONDON W3 0RY (less imbedded
in the medical establishment)

USA: (1) CFIDSA (Chronic Fatigue & Immune Dysfunction Syndrome Association),
P.O. Box 220398, CHARLOTTE, NC 28222
(2) CFIDSS (Chronic Fatigue & Immune Dysfunction Syndrome Society),
P.O. Box 230108, PORTLAND, OR 97223

Apparently, French and Italian societies are being founded, too.


Some Newsletters:

AUS: ME and You Newsletter; Official Journal of the ME/CFS Society
of NSW Inc. (P.O. Box 449, CROWS NEST, NSW 2065, Australia) -- about
10 years old, circulation: 1450.

NL: MEdium, Journal of the Netherlands ME Foundation, P.O.B. 116,
NL-1120 AC LANDSMEER -- about 3 years old, in Dutch, circulation:
4000.


REFERENCES:

[1] D. Wakefield (1989), Documentation from the ME/CFS Society of NSW
Inc.

[2] B. Hyde (1990), The Cambridge Symposium on Myalgic Encephalomyelitis
(ME). ME and You -- Newsletter of the ME/CFS Society of NSW Inc.,
Vol. 36, pp. 12 - 15. [The complete Proceedings should be available
shortly; preprints are available by mail order from the ME/CFS Society
of NSW Inc., at A$ 5,00].

[3] I. Hickie, A. Lloyd, D. Wakefield & G. Parker (1990), The psychiatric
status of patients with the Chronic Fatigue Syndrome. British Journal
of Psychiatry 156, pp. 534 - 540.

[4] A. Lloyd, D. Wakefield, D. Boughton & J. Dwyer (1988), What is Myalgic
Encelophalomyelitis? Lancet 1988:1, pp. 1286 - 1287.

[5] A. Lloyd (1990), PhD-thesis (title unknown), Prince Henry Hospital and
School of Medicine, University of New South Wales, Australia.

[6] A. Macintyre (1988), M.U. -- Postviral Fatigue Syndrome -- How to live
with it. Unwin, Hyman Ltd, London/UK; ISBN 0-04-440318-6.
Dutch translation: A. Macintyre (1990), Leven met ME (revised and
adapted to the Dutch situation by M. Lescrauwaet). La Riviera & Voor-
hoeve / Kok, Kampen/NL.