Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Fukuda Flim Flam

Discussion in 'General ME/CFS Discussion' started by Andrew, Jul 4, 2013.

  1. Andrew

    Andrew Senior Member

    Los Angeles, USA
    The Fukuda definition is presented in The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study, Ann Intern Med. 1994;121:953-959. My purpose here is not to address the definition, but rather their justification for retaining the name "Chronic Fatigue Syndrome."

    They state: The name "chronic fatigue syndrome" is the final issue that we wish to address. We sympathize with those who are concerned that this name may trivialize this illness. The impairments associated with chronic fatigue syndrome are not trivial. However, we believe that changing the name without adequate scientific justification will lead to confusion and will substantially undermine the progress that has been made in focusing public, clinical, and research attention on this illness. We support changing the name when more is known about the underlying pathophysiologic process or processes associated with the chronic fatigue syndrome and chronic fatigue.

    This statement is worthy of the best double-talking politician because on the surface it seems to make sense, but it actually is not justified. Do a Google search on "syndrome" and take a look at how most syndromes are named. They are usually named for the researcher who first described them. There is no tradition in science that requires scientific understanding of underlying mechanisms to be applied to the naming of an illness.

    Now, what about the part that says "changing the name will lead to confusion and will substantially undermine the progress that has been made in focusing public, clinical, and research attention on this illness." The fact is, not changing the name has caused the very problem they were claiming they wanted to avoid. Because the "chronic fatigue" name sends a signal to researchers that all they have to study is a single symptom (fatigue), and not a multi-symptom syndrome. And it has gotten so bad that the practice of eliminating all symptoms except fatigue is even defended by the CDC as "the state of the science."

    So Fukuda et al were not really acting in the best interests of patients or science, at least with regard to the name.
  2. Allyson


    Australia, Melbourne
    Thanks Andrew,

    could not agree more.

  3. Sean

    Sean Senior Member

    I recall that Komaroff, who was involved in the initial re-naming to 'CFS', has since accepted it was a bad idea, with adverse consequences for research and patients.

    Don't have a link for that, but somebody here should be able to further enlighten us.
    Allyson and alex3619 like this.

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