M.E. vs. CFS: Med Students Responses Depends on Name

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Nov 15, 2006.

  1. mezombie

    mezombie Member

    From today's Co-Cure email:

    Why the Name of an Illness is Important
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    Leonard A. Jason
    DePaul University

    Judith Richman
    University of Illinois at Chicago

    Nicole Porter
    DePaul University

    Mary Benton
    Wichita State University



    Despite itĀ¹s chronicity and severity, CFS remains highly
    controversial (Richman, & Jason, 2001). A particularly high
    percentage of patients with this illness have experienced
    disrespect and poor treatment by the health care system. Below,
    we review an issue involving the name given to this illness, which
    may have contributed to the diagnostic skepticism and stigma
    that those with this illness encounter.

    The name selected to characterize an illness, such as CFS, can
    influence how patients are perceived and ultimately treated by
    medical personnel, family members and work associates. The
    term chronic fatigue syndrome was coined by scientists in 1988
    (Holmes et al., 1988).

    The syndrome had previously been referred to by various
    names, including Myalgic Encephalomyelitis. In 1955, there was
    an outbreak of Myalgic Encephalomyelitis at the Royal Free
    Hospital in Great Britain, which was described by Ramsay, the
    medical consultant in charge (Hyde, Goldstein, & Levine, 1992).

    Later, Ramsay (1981) published a definition of this disease
    under the name Myalgic Encephalomyelitis. The most prominent
    of these criteria included:

    (1) fatigue after minimal exertion (not daily fatigue) and delay of
    recovery of muscle power after exertion ends,

    (2) one or more symptoms that indicate circulatory impairment,


    (3) one or more symptoms that indicate central nervous system
    involvement (cerebral problems), and

    (4) and fluctuating symptoms.


    Because fatigue was considered to be one of the primary
    symptoms of this syndrome, in 1988, a group of researchers,
    many of whom were at the Centers for Disease Control and
    Prevention (CDC), coined the name CFS and developed a new
    case definition (Holmes et al., 1988).

    Patients believed that the term CFS trivialized the seriousness
    of this illness, as the illness is typified by many severe symptoms
    in addition to fatigue, and fatigue is a common symptom
    experienced by many otherwise healthy individuals in the
    general population (Taylor, Friedberg, & Jason, 2001).

    In addition, CFS is frequently confused with chronic fatigue,
    which is a symptom of many illnesses, including some
    psychiatric disorders. The negative stigma associated with CFS
    may be partially due to the trivializing name that has been given
    to this disorder in 1988.

    Two studies explored whether alternative names for CFS (e.g.,
    chronic fatigue syndrome, Myalgic Encephalopathy) do influence
    attributions by medical trainees (Jason, Taylor, Plioplys et al.,
    2002), and college undergraduates (Jason, Taylor, Stepanek, &
    Plioplys, 2001) regarding this syndrome.

    Participants were randomly assigned to two groups, with the
    difference between groups involving the type of diagnostic label
    given for a case description of a patient with prototypic
    symptoms of chronic fatigue syndrome.

    Results showed that participantsĀ¹ attributions about CFS varied
    on the basis of the different diagnostic labels used to
    characterize it. The Myalgic Encephalopathy label was
    associated with the poorest prognosis, and this term was more
    likely to be associated with a physiological rather than a
    psychological cause to the illness.

    Many patient groups believe that changing the name from
    Myalgic Encephalomyelitis to CFS was thus a major contributing
    factor to the stigmatization of this illness.




    References

    Holmes, G.P., Kaplan, J.E., Gantz, N.M., Komaroff, A.L.,
    Schonberger, L.B., Strauss, S.S., Jones, J.F., Dubois, R.E.,
    Cunningham-Rudles, C., Pahwa, S., Tosato, G., Zegans, L.S.,
    Purtilo, D.T., Brown, W., Schooley, R.T., & Brus, I. (1988a).
    Chronic Fatigue Syndrome: A working case definition. Annals of
    Internal Medicine, 108,387-389.

    Hyde, B.M., Goldstein, J.A., & Levine, P. (1992). The clinical and
    scientific basis of Myalgic Encephalomyelitis/Chronic Fatigue
    Syndrome. Nightingale Research Foundation. Ottawa, Ontario,
    Canada.

    Jason, L.A., Taylor, R.R., Plioplys, S., Stepanek, Z., & Shlaes, J.
    (2002). Evaluating attributions for an illness based upon the
    name: Chronic fatigue syndrome, Myalgic Encephalopathy and
    Florence Nightingale Disease. American Journal of Community
    Psychology, 30, 133-148.

    Jason, L.A., Taylor, R.R., Stepanek, Z., & Plioplys, S. (2001).
    Attitudes regarding chronic fatigue syndrome: The importance of
    a name. Journal of Health Psychology, 6, 61-71.

    Ramsay, M.A. (1981). Myalgic Encephalomyelitis: A baffling
    syndrome with a tragic aftermath. The ME Association.

    Richman, J.A. & Jason, L.A. (2001). Gender biases underlying
    the social construction of illness states: The case of chronic
    fatigue syndrome. Current Sociology 49, 15-29.

    Taylor, R.R., Friedberg, F., & Jason, L.A. (2001). A clinician's
    guide to controversial illnesses: Chronic fatigue syndrome,
    Fibromyalgia, and Multiple Chemical Sensitivities. Sarasota, Fl.:
    Professional Resource Press.

    [This Message was Edited on 11/16/2006]
  2. mezombie

    mezombie Member

  3. findmind

    findmind New Member

    Hi, mezombie!

    Yes, I read this years ago; can't believe it is just now on Co-Cure. Maybe it's a re-run, LOL.

    The only problem? The CDC will not allow CFS to be taught as being ME!

    That's all, folks...
    findmind
  4. mezombie

    mezombie Member

    I know what you mean, it's an old study. I don't know why Co-Cure posted it yesterday.

    But I do think it points out the dire need to change the name. I don't know how this will be done, but I want to give Rich Carson as much support in his efforts as possible.
  5. Clay2

    Clay2 New Member

    I've experienced this kind of thing. When I tell a nurse that hospitals give me panic attacks, I get this 'yes, lots of people get nervous, but there's nothing to fear, so relax' kind of answer. When I say I have post traumatic stress disorder that is triggered by hospitals, they get quiet and very respectful.

    It's the difference between dismissal and concern.