Reeves criteria - Congratulations to all those who put the issue on the map

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Nov 8, 2009.

  1. QuayMan

    QuayMan Member

    (From Co-Cure)

    [This doesn't have much new information in it, except to point out that the CFSAC criticised the CDC's empiric definition in one of its recommendations. Tom]

    As many people will be aware, at the CFSAC meeting at the end of October, the committee passed a motion along the lines of the following:

    "Recommendation 3:
    The CFSAC objects to CDC's continued use of the inadequate and inappropriate 2005 "empiric" research definition for CFS. It recommends that CDC abandon the empiric case definition and the fundamentally incorrect conceptualization of chronic unwellness as being equivalent to CFS incorrect." (source: ).

    (I was going to wait till the last recommendations officially came out but
    I've to put my head down now for a couple of weeks to work on a newsletter)

    As people may or may not be aware, the CDC have used these criteria for
    dozens of studies since the end of 2005: All the studies from the Georgia
    cohort and all but one from the Wichita 2-day study*. This includes the
    Pharmacogenomics studies in 2006 and also the CAMDA studies.

    This issue has largely been ignored by the research community until recently. I'm open to correction but I believe that the only two references in the literature are two studies involving Prof. Lenny Jason:

    Jason LA, & Richman JA ( 2008). How science can stigmatize: The case of CFS. Journal of Chronic Fatigue Syndrome, 14, 85-103.

    Jason LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease
    Control's empirical chronic fatigue syndrome case definition. Journal of
    Disability Policy Studies. 2009.

    So well done and thanks to those five individuals for their work in the

    But in the last 6-7 months, I believe there has been a much greater
    awareness of the issue.

    I would like to think that is partly due to the petition that was set up last April after I heard the CDC was putting together a 5-year plan:
    "Petition CDC CFS research should not involve the empirical definition
    (2005)" i.e.

    This petition would probably win prizes in a category for "most obscure"

    But over 2000 people signed it and I think this has helped to build momentum
    to challenge the definition.

    So thanks to everyone who signed it and particularly anyone who signed it and who also encouraged other people to sign it or supported it in some ways e.g. linked to it. It's probably bad to mention names as people will be left out but two people who got behind the petition early were Mary Schweitzer and Kasper Ezelius - they had both previously recognised problems with the criteria as of course had some other patient advocates. (I know others in more recent times have plugged the petition heavily on some forums but full names were not given)

    One thing that probably focused a lot of minds on the criteria the CDC were
    using was the XMRV research so thanks to everyone who brought that
    breakthrough about.

    Thanks to Marly Silverman of PANDORA ( who submitted the petition to the CFSAC:
    ( at around 4.24)

    "I am delivering to you a petition by Tom Kindlon, a CFS patient advocate.
    As of today, there are 1893 signatures in this petition. The comments are an
    eye-opening account of the diversity found within the patient community. It
    could be a tool for potential CFS research"

    Thanks to all those who testified. Unfortunately I have not seen or heard
    all the testimonies but I know Dr Joan Grobstein brought the issue up in her
    memorable testimony: where she coined the phrase, "Reeves Disease", to describe those who satisfy the Reeves (or "empiric") criteria but not other CFS or ME/CFS criteria. Staci Stevens gave a two-paragraph statement from Dr Eleanor Stein (psychiatrist) criticising the definition:

    And thanks to the members of the Patient Care Committee for highlighting the
    issue as well of course as everyone on the CFSAC.

    Fingers crossed that with enough pressure no new studies by the CDC will be
    produced using the definition and that eventually the criteria will be so
    discredited that any studies using the definition will have low status. But
    we're not there yet.

    Bye for now,

    Tom Kindlon

    * It looks like for the Tilt Table study "Orthostatic instability in a population-based study of chronic fatigue syndrome" (Jones JF, Nicholson A, Nisenbaum R, Papanicolaou DA, Solomon L, Boneva R, Heim C, Reeves WC. Am J Med. 2005 Dec;118(12):1415 published the same month empiric definition came out) that they called the patients CFS patients if they had been diagnosed with CFS in 1997-2000 but didn't mention that at the time of the tilt table testing, most of the individuals didn't satisfy the CFS criteria (they talk about more than 43 patients which is more than any of the other studies)]
  2. Khalyal

    Khalyal New Member

    for everything you do.

  3. simpsons

    simpsons Member

    tom thank you for all the hard work that you tirelessly do and the great information that you provide

    you are an inspiration to us all

    battle by battle we will win this war.

  4. wendysj

    wendysj New Member

    Hi Tom,

    Thank you for all you do. It must be tiring and frustrating but you're work is greatly appreciated. For those of us who don't have the energy to fight - you fight for us. That makes you a very special person.

  5. Spinetti

    Spinetti New Member

    We can't thank you enough for what you're doing.

  6. QuayMan

    QuayMan Member

    Thanks Spinetti, wendysj, simpsons and Khalyal for the kind words and encouragement.

    Thanks for what you do.