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Chronic Fatigue Syndrome - 2nd to AIDS...

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  • Chronic Fatigue Syndrome - 2nd to AIDS...

    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

    "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:


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

    [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.