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Britain and the USA Fail to Agree
Guidelines on ME/CFS for Physicians

by Dr EG Dowsett

Both the British Royal College of Physicians(1) and the USA Public Health Service(2) have recently issued documents with the stated aim of providing information for doctors on the epidemiology, recognition and management of ME/CFS. There the similarity ends!

Whereas the British document was compiled by a committee of college nominees, 50% of whom are psychiatrists and presents a consistent bias against an organic basis of the illness, the American counterpart, which was commissioned from Public Health scientists allied to NIH, takes a broader view of recent research and has much to recommend it.

The British publication is lengthy, comprising 58 pages and 256 references, 50% of which refer to psychiatric or psychological sources, including 9 not yet published and 3 merely "submitted". The American version is admirably succinct in 16 pages and provides reference to 5 official reviews and definitions, as well as signposting the extensive bibliography held at the World Wide Web of the American Association for CFS (a membership organisation for clinicians, research and health care professionals engaged in CFS activity(3)).

There are few similarities between the two documents. The British guidelines are turgid and have been described as inaccurate, biased and unhelpful to patients and physicians(4)(5). The American version provides easy reading for busy doctors and includes helpful boxed summaries and highlighted comments for individual paragraphs together with tables and algorithms to aid investigation and diagnosis.

Important points of contention between the two sets of guidelines include:

  1. The name of the illness. British doctors are advised to discard "Myalgic Encephalomyelitis" in favour of "Chronic Fatigue Syndrome" without delay, while Americans find that "Chronic Fatigue" trivialises the illness, does not reflect the underlying pathological process and is confusing in comparing research findings. An American Commission has already been charged with finding a substitute!
  2. Epidemiology. Estimations of the incidence of ME/CFS vary widely in different settings depending on whether British, American or Australian case definitions are used. It follows, from this, that the incidence of ME/CFS in the UK has been greatly overestimated by the British College of Physicians and underestimated in the USA - a problem which is unlikely to be corrected until a common terminology and case definition is agreed world-wide.
  3. Management of Children and Adolescents. The Americans readily acknowledge that this aspect has been inadequately studied and a new scale for diagnosis and measurements of disability in this age group is urgently required. The Britsh Guidelines unfortunately give highly inappropriate advice, rejecting Home Tuition in favour of early return to school and progressive activity, while the American physician is cautioned about care in diagnosis, limiting class time and the use of Home Tuition prior to a gradual return to normal activity.
  4. Medical and Social Support. The British document declares boldly that it has no resource implications, discounts the value of support groups and advocates discharge of patients to primary care, whereas Americans advise support groups and stress the valued medical art of guidance and compassion with reasonable treatment options and regular follow-up visits if disconcerting new symptoms or findings occur. Moreover, the American guidelines direct attention to the care which must be taken to avoid inappropriate remedies or drugs to which patients in this category are especially sensitive. British guidelines, to their shame, suggest trials of antidepressant drugs in patients who are depressed as well as those who are not.
  5. Research. Whereas recent neurophysiological research relating to hypothalamic dysfunction is welcomed on both sides of the Atlantic, Neurospect demonstrations of metabolic disturbance in the brains of both adults and child patients are described as "unconfirmed" despite similar findings having been reported by research groups in Canada, USA and the UK since the mid 1980s. The American guidelines, however, give generous space to other research findings including certain immunological features and to recent studies linking ME/CFS to disturbances in blood pressure control (neurally mediated hypotension) which are overlooked in the British version.
  6. A Link with Infection Although both reports are biased in favour of psychiatric rather than organic triggers for this illness and are extremely weak in knowledge relating to infectious agents, the American version scores in its recognition that ME/CFS occurs in clusters which affect families, communities and the workplace and in its recommendation that such events should be reported to State health officials for early investigation. This is a powerful endorsement of the likelihood of an environmental trigger which, if it relates to infection, renders the conventional delay of 6 months in diagnosis (so commmon in research conventions) a serious barrier to finding a cause, a diagnostic test and a means of prevention.

To summarise. American physicians have been well served with guidelines which are readable, of reasonably wide scope and economical to obtain, while the alternative, at the cost of £10 per copy is very unlikely to be popular with British doctors

References

  1. REPORT OF A JOINT WORKING GROUP OF THE ROYAL COLLEGES OF PHYSICIANS, PSYCHIATRISTS AND GENERAL PRACTITIONERS
    Chronic Fatigue Syndrome. October 1996/ER 54.
    Royal College of Physicians Publications Unit
    11 St Andrews Place, London NW1 4LE
    Price £10. ISBN/86016 046 8
  2. CHRONIC FATIGUE SYNDROME - INFORMATION FOR PHYSICIANS
    National Institute of Allergy and Infectious Diseases
    Public Health Service
    US Department of Health and Human Services (1996)
  3. AMERICAN ASSOCIATION FOR CHRONIC FATIGUE SYNDROME, SAN FRANCISCO, CALIFORNIA
    TO ORDER VIDEOS OR AUDIOTAPES OF RESEARCH CONFERENCE OCT 13-16, 1996 CALL INFO MED IX TOLL FREE MONDAY-FRIDAY 8am - 5pm PST mentioning PROGRAM NUMBER AJ209
  4. LEADING ARTICLE, LANCET (1996) 348 971 (12/10/96)
  5. HEDRICK T. The Royal Colleges Report on CFS: Insidiously biased and potentially harmful: The CFIDS CHRONICLE 10 (1) Winter 1997
    THE CFIDS ASSOCIATION OF AMERICA INC. PO BOX 22039A
    CHARLOTTE NC 28222 - 0398 USA 

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