Petition complaining about the CDC's/Reeves' CFS definition

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, May 20, 2009.

  1. QuayMan

    QuayMan Member

    I'm appending the text of a petition at:

    It's up to 874. It started in April before the CDC had the meeting on their draft plan.

    It'd be good to get up to 1000 by next Wednesday/Thursday when the CDC's research plan will be discussed at the CFSAC meeting.

    The petition
    We call on the Centers for Disease Control and Prevention (CDC) to stop using the "empirical" definition[1] (also known as the Reeves 2005 definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS research.

    The CDC claim it is simply a way of operationalizing the Fukuda (1994) definition[2]. However the prevalence rates suggest otherwise: the "empirical" definition gives a prevalence rate of 2.54% of the adult population[3] compared to 0.235% (95% confidence interval, 0.142%-0.327%) and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was used in previous population studies in the US[4,5].

    The definition lacks specificity. For example, one research study[6] found that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the empirical/Reeves definition.


    [1] Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L, Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome--a clinically empirical approach to its definition and study. BMC Med. 2005 Dec 15;3:19.

    [2] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome; a comprehensive approach to its definition and study. Ann Int Med 1994, 121:953-959.

    [3] Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia. Popul Health Metr. 2007 Jun 8;5:5.

    [4] Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003, 163:1530-1536.

    [5] Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR, McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37.

    [6] 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 2008, doi:10.1177/1044207308325995.

    Further reading:
    Problems with the New CDC CFS Prevalence Estimates
    Leonard Jason, Ph.D., DePaul University i.e.
  2. simpsons

    simpsons Member

    signed. this is so important how will they ever get anywhere without correct subjects to study

    major depressive disorder has its own budget
  3. AuntTammie

    AuntTammie New Member

    I wonder if it should suggest the Canadian definition, too, though....from everything I have read, it sure seems to be the most accurate
  4. skeptik2

    skeptik2 Member

    Having computer problems; who is this petition GOING to?

    IMHO, unless it's going to the President and the Sec. of HHS, it will die in it's own wake.

    p.s. If "Who Benefits"/bluebottle's post, were attached to it, it would help.

  5. QuayMan

    QuayMan Member

    People can always call for the Canadian definition by writing it as a comment.

  6. luckyman

    luckyman New Member

    Thanks for posting the link.
  7. QuayMan

    QuayMan Member


    I don't know how to make a hotlink from here, I don't think you can.

    If you type this shorter address, it will bring you to the petition.

    The http:// is optional - just delete that part if you have a problem.

  8. QuayMan

    QuayMan Member


    Sign the petition against
    CDC's new defintion of CFS!

    Tom Kindlon has set up a petition on the internet
    in order to stop CDC to use the new definition of
    CFS. At this time there are 636 signatures, and it
    would be wonderful if at least 1000 signatures
    could be achieved.

    Tom Kindlon from Ireland, has written comments to
    several research articles relating to the new
    definition of CFS made by Reeves et al. 2005, and
    adopted by the Centers for Disease Control and
    Prevention (CDC) in the USA. Tom Kindlon is one of
    the few knowledgeable about the CFS-Reeves

    Leonard Jason from USA has written articles
    about how the new CDC CFS definition is a flaw.

    The CFS-Reeves definition does not require malaise,
    mental fog and post-exertional malaise exceeding 24
    h, which make it hard to believe that it has
    something to do with ME/CFS as the patients know
    it. It does not even require the symtoms to be
    chronic, because it does not require the symtoms to
    have lasted for at least 6 months. It only looks 1
    month back in time.

    The CFS-Reeves definition lacks specifcity (<16%).
    Already the Fukuda definition was lacking specificity,
    and the expected way to go would to have increased
    specificity in order to speed up research. With the
    CFS-Reeves low specificity, the ME/CFS part will be
    dissipated in the stastistical data. As no meaningful
    scienfific results will be produced with the "Reeves
    illness melange", one can expect that CFS will cease
    to be exist as an interesting entity to study.

    I think all ME/CFS-patients are hoping for research to
    go forward, not to stop up and dissipate because a
    TOTALLY FLAWED DEFINITION is accepted and used
    by CDC.

    Please, help to get more signatures by letting people
    know about this petition.

    Sign at the bottom of this page. Note: When you are
    urged to donate money to the site, you can simply
    skip that. Your signature will be registered anyhow.

    /Kasper Ezelius, Örebro, Sweden

  9. QuayMan

    QuayMan Member

    Well done to Kasper - there was only 636 when he sent out his message. Now there is 982. Looks like 1000 will be reached before the CFSAC meeting on Wednesday/Thursday
  10. skeptik2

    skeptik2 Member

    Don't know how I missed doing this already, but taking care of it today!

    Thank you so much for all this work and information that we can USE in order to effect change next week!

  11. Rafiki

    Rafiki New Member

  12. simpsons

    simpsons Member

  13. simpsons

    simpsons Member

  14. simpsons

    simpsons Member

  15. simpsons

    simpsons Member

  16. QuayMan

    QuayMan Member

    Well done to everyone who have signed and particularly anyone who has encouraged others to sign.

    The message below was posted on Co-Cure yesterday (Co-Cure has a public archive so unless people say otherwise, messages can be re-posted). I thought I'd post it anyone as it gives some info on why it's important, etc.

    We're close!

    The petition to kill the new Reeves definition for CFS now has 968 signatures - that means just a few more will put us over the top into four digits for the CFSAC meeting on Wednesday. 32 more people. We can do that!

    Go sign it now if you haven't. Ask your friends and families to sign it.

    What the petition is about: In 2005, with very little fanfare, the CDC researchers on CFS led by Bill Reeves changed the definition they had been using since 1994 (the Fukuda definition). They have replaced it with a definition that greatly resembles the psychiatric one used in England.

    What would be the result of that?

    Studies that show that we our physical malfunctions are due to "deconditioning" (from staying in bed "playing the sick role") and "cognitive behavior therapy" as the main treatment to offer, that would be the result.

    Research on biomarkers and real treatment would be stifled by the CDC's insistence on trying them out with this group of patients, most of whom don't have anything resembling what we have. The CDC would do a quick study and say - there's no evidence that biomarker is useful.

    It would hold back research for even MORE decades - and worse, it could lead to cognitive behavior therapy, Prozac, and graded exercise as the only treatments for CFS that private insurance or Medicare would pay for.


    This "new" definition, which was named in the best Orwellian bureaucrateze: "empirical" (as if they had actually studied the symptoms that we have, which they did not), would be an unmitigated disaster for all patients with a diagnosis of CFS - and it wouldn't do much for patients with depression who would find themseles misdiagnosed as having CFS, either.

    The reason we didn't hear much about the definition is that Reeves isn't selling the definition to the medical profession - he is selling the questionnaires, and suggesting that they would match the old CFS-Fukuda definition.

    But research by Dr. L. Jason suggests otherwise: when he tried the questionnaires out on patients from the Chicago study, he found that they omitted the sickest patients entirely. Even worse, 30 percent (about 1/3) of the so-called "CFS" patients diagnosed using the Reeves questionaire did not have CFS-Fukuda, but did have major depression. As Tom Kindlon has also noted, Reeves would only require one month of "fatigue" for the diagnosis - again, a shift in definition (from six months) that would make it easier for patients with other problems to be diagnosed as having CFS.

    The FIRST priority of the new CFSAC MUST BE to stop the distribution of those questionnaires, get rid of all references to the Reeves definition on the CDC's CFS website, and return to both the Fukuda definition and the Fukuda goal of defining subsets using objective measures and biomarkers. (An apology would be nice but I'm not holding my breath.)


    "CDC CFS research should not involve the empirical definition (2005)"



    Go sign the petition.

    Mary Schweitzer
  17. skeptik2

    skeptik2 Member

    kEEPING it on page one!
  18. skeptik2

    skeptik2 Member

    Keep it on page one, plz!

  19. skeptik2

    skeptik2 Member

    Let's keep the pressure on, and the educational efforts at the top of the page, PLEASE!

  20. skeptik2

    skeptik2 Member