Correction on name change by co-cure

Discussion in 'Fibromyalgia Main Forum' started by Echos, Mar 17, 2003.

  1. Echos

    Echos New Member

    The following was corrected by co-cure and I wanted to correct myself. Seems both of us had jumped the gun. My apologies.


    [Moderator's Note: Dr. Jason sent the following message to Linda Searing,
    the HealthScoutNews reporter who wrote yesterday's article on the Name
    Change effort. See
    http://listserv.nodak.edu/scripts/wa.exe?A2=ind0303c&L=co-cure&F=&S=&P=1343
    for a copy of this article.]

    Dear Linda:

    Thank you for doing a story on the name change, and for showing your
    readers how serious this illness is. However, in your story, you mentioned
    that the Name Change Work group was recommending that the term
    Neuroendocrineimmune Dysfunction Syndrome (NDS) should replace the term
    CFS. This is not correct, as the NDS term is to serve as an umbrella term
    and under it will be several subtypes, of which ME is one of the these
    subtypes. The issue of subtypes is actually critical, and one of the most
    important aspects of this Name Change Work group document. For example, we
    wrote:

    "The NCW anticipates that the biomedical community will find that subgroups
    or subtypes of NDS provide useful nosology. Thus, the use of subgroup
    stratification offers flexibility and adaptability to the inevitable
    advances based on scientific research. This approach also promotes more
    accurate understanding of the illness when compared to the current name,
    chronic fatigue syndrome."

    And later we wrote:
    "Unfortunately, uncontrolled patient heterogeneity in empirical studies is
    a consequence of ignoring the issue of sub-classification (5,6). When
    unique patient groups are combined, any distinctions pertaining to specific
    subtypes of CFS become blurred. There has been a lack of consistency in
    such laboratory findings, which may be a function of combining distinctive
    groups of patients into a large heterogeneous group rather than analyzing
    them within subtypes. Researchers have begun to determine the validity of
    an approach that involves subdividing their patients into groups."

    I recognize that this issue might seem like a small one, however, I can not
    emphasize enough that it is actually a most significant and critical issue
    for the patient community.

    In addition, there is another incorrect statement, and that involves my
    membership on the CFS Advisory Committee. I was a member of the CFS
    Coordinating Committee, but that committee ended as of last fall. A new CFS
    Advisory Committee is being constituted, and the officials at HHS have not
    yet released the names of the members who will be on this Committee.

    If it is possible to insert these changes in the article or to publish a
    correction, I would be most appreciative.

    Sincerely,

    Leonard Jason, Ph.D.
    Director, Center for Community Research

    Echos