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actions on CDC empirical definition

Discussion in 'Action Alerts and Advocacy' started by Finch, Sep 29, 2009.

  1. Finch

    Finch Down With the Sickness

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    There is an active petition to urge the CDC to stop using the "empirical" definition (also known as the Reeves 2005 definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS research.

    The petition is sponsored by Tom Kindlon, a patient with CFS for over 20 years. The petition currently has 1,687 signatures. You can sign your name and have the opportunity to leave a comment as well.

    Following is the link: http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/index.html


    Here's another chance to show how many of us disagree with Dr. Reeves and the direction the CDC is headed. Tom Kindlon gives updates indicating when he uses the petition in his advocacy efforts. He has included it in emails to the CFSAC and in submissions to the CDC. Obviously, the more signatures he gets, the greater will be the impact of his efforts.

    Please check it out and give consideration to signing if you haven't already done so!

    Finch
  2. bananaman

    bananaman

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    Bognor UK
  3. Dreambirdie

    Dreambirdie work in progress

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    N. California
  4. Cort

    Cort Phoenix Rising Founder

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    CAA on the CDC's Empirical Definition

    The CFIDS Association has posted an article on the empirical definition. They came out strongly against it this past year. You can say they were a bit late but so was everybody else. The IACFS/ME - who should have been leading the charge on this - didn't do anything. (They did allow Dr. Jason to print an article on their website but refused to take a stand on the definition - a very odd thing given that their Pediatric definition was miles different from the empirical definition. I asked Dr. Jason about this he said fairly large segment of the research community was just not interested! The patients however are very interested!) The only one who did anything as the man featured in this article - Dr. Leonard Jason. Thank goodness for Lenny Jason.

    Note how a stunningly high percentage of patients with major depression but not CFS were classified as having CFS in this study.

    There's a bit at the end on Suzanne Vernon and her role in the definition.

    http://www.cfids.org/cfidslink/2009/090203.asp


    Fortunately the definition appears to have been a complete flop for the CDC; not outside groups that I know of have used it in their research.

    ________
  5. Dolphin

    Dolphin Senior Member

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    Message is going in to CFSAC in next 48 hours so any signatures before then particularly welcome.
  6. zoe.a.m.

    zoe.a.m. Senior Member

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    Olympic Peninsula, Washington
    Signed...working on a letter as well! I think this is my first post here so please forgive any errors!
  7. Koan

    Koan Be the change.

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    I think I signed before -- how do I find out?

    Thanks,
    Koan
  8. Chris

    Chris Senior Member

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    Victoria, BC
    us Canadians...

    Koan, is it OK to sign as a Canadian? I ask not as accusation but in search of support--I live in Canada too! But I am a little hesitant to sign on a petition to a specifically US body. Help me to feel comfortable!
    Best, Chris
  9. Tony

    Tony Still working on it all..

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    Melbourne, Australia
    Sure! I'm in Aust, Tom K originated this in Ireland...we all sign...:)
  10. Dolphin

    Dolphin Senior Member

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    A large fraction (maybe half?) of the names are not from the US. Sometimes this is quite visible (e.g. a batch of Scandinavian names together).

    Research crosses borders.

    But the big thing is the person who set it up is from Ireland!
  11. Dolphin

    Dolphin Senior Member

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    Yes, you did. I'll PM your number.
  12. Dolphin

    Dolphin Senior Member

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    CDC research - chararcteristics of CFS patients as selected by their empirical defn

    The following paper uses the empirical criteria (Reeves, 2005) to define
    CFS:

    An evaluation of exclusionary medical/psychiatric conditions in the
    definition of chronic fatigue syndrome.
    Jones JF, Lin JM, Maloney EM, Boneva RS, Nater UM, Unger ER, Reeves WC.
    BMC Med. 2009 Oct 12;7(1):57. http://www.biomedcentral.com/1741-7015/7/57

    ---------

    If one goes to Table 6, and look at the "No" column (as in "no exclusionary
    conditions") one can see the characteristics of the patients the definition
    is selecting.


    One that stands out to me is SF-36 "Role emotional" 30.93 (SD: 39.03).


    This is a much worse score that scores for role emotional in CFS patients
    generally.


    -----------
    The SF-36 "Role emotional" subscale has three questions:

    (the underlinings are in the questionnaire):

    6. During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?

    (circle one on each line)

    a. Cut down on the amount of time you spent on work or other activities
    Yes No

    b. Accomplished less than you would like deleted
    Yes No

    c. Didn't do work or other activities as carefully as usual deleted
    Yes No
    -----------

    Remember that this asks about impairments "as a result of any emotional problems" (other questions ask about impairments but in other ways).


    If you answer Yes to two of these three questions, you would score 33.


    So an average of 30.93 means people with the CFS (empirical criteria) answer
    "Yes" to more than 2 out of these 3 questions on average.


    Tom K

    ========================================================
    Don't support the Reeves/empirical definition/criteria for CFS?
    Sign the petition at: http://CFSdefinitionpetition.notlong.com
    ========================================================
  13. Dolphin

    Dolphin Senior Member

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    Reeves' Criteria Petition update: Marly Silverman (Pandora) to bring petition print-out to CFSAC meeting

    Marly "Marla" C. Silverman, Founder of P.A.N.D.O.R.A. (Patient Alliance for
    Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc
    http://www.pandoranet.info) has been in touch to say that she will be
    bringing a print-out of the "entire petition" (i.e. the visible signatures
    and comments) to the CFSAC meeting at the end of October.


    Please use whatever resources you have access to (e.g. blogs, Twitter,
    Facebook, other social networking sites, newsletters, E-mail
    lists/discussion forums, etc) to highlight the existence of the petition.
    The petition also links to some critiques of the definition. Many people
    have also written interesting comments.


    Note: I have no intention of closing the petition site until the CDC stop
    using this flawed definition.


    I'm appending the text of the petition below with a link.


    Tom Kindlon



    http://CFSdefinitionpetition.notlong.com
    i.e.
    http://www.ipetitions.com/petition/empirical_defn_and_CFS_research


    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.

    References

    [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. Link: http://www.biomedcentral.com/1741-7015/3/19

    [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
    http://tinyurl.com/2qdgu4 i.e.
    http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx
  14. MEG

    MEG Senior Member

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    Asheville, NC
    Petition

    Tomk;
    I signed it, wrote a comment and donated money. Feel like writing any more petitions? We cannot let CDC, NIH, Reeves off the hook.
  15. Dolphin

    Dolphin Senior Member

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    That's very good of you.

    Note to others: you shouldn't feel you have to donate money. I donated a little (US$10) when I set it up.

    I agree to the latter point.

    Thanks for asking but personally I have a lot on my plate and should concentrate more on what happens in Ireland. Also I want to write more letters to the editor which are time consuming (I've started one on a CDC paper). And I've an incomplete article on CFS I want to finish and submit to a journal (I last looked at it last Christmas).

    So although there are lots of petitions I might like to set up, I don't think I will be doing one anytime soon.

    It might be good if people could suggest another petition site. For some reason, with this one, quite a lot of people's comments never came up (they were grey boxes). As well as frustrating in itself, I reckon this might have put these people off promoting the petition.
  16. Koan

    Koan Be the change.

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    Tom,

    You do so much! I hope something lovely happens. I hope you find out you are loved more than you could have imagined or that you have a bank account you'd forgotten all about or that your dog comes over and lays his head on your hand in a way that makes everything feel so much easier.

    Thank you for being Tom.

    Koan
  17. Dolphin

    Dolphin Senior Member

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    Thank you for those very kind wishes. :)

    Of course, with regard to a couple of those things I mentioned (letter, article), they haven't been published yet so I don't want any credit for them just yet (in fact, if I hear that lots of other people are writing letters in reply to a CDC letter and it means that if I send in a letter, theirs get in instead of mine, I won't be sad at all). Unfortunately, few people are writing letters in reply to CFS articles these days and I think some researchers know this and are taking advantage of it to write some rubbish.
  18. Koan

    Koan Be the change.

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    Very heartfelt wishes, Tom.

    I think we will hear a great deal of rubbish from those who feel they have been unseated by WPI and XMRV.

    Didn't I read somewhere here that 8 EU countries signed a document in support of the WPI research?! I hope Ireland was a part of that but we are awful slow to sign anything!

    The rubbish writers days are numbered.

    Take care of Tom.

    Koan
  19. Dolphin

    Dolphin Senior Member

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    Thanks Koan.

    I'm guessing you are referring to:

    The European ME Alliance (EMEA) wish to congratulate the
    Whittemore-Peterson Institute for the painstaking, professional and groundbreaking work which its staff have performed, along with the National Cancer Institute and the Cleveland Clinic, which has resulted in the publication of the findings of a novel virus XMRV in causing or influencing ME.

    The members of EMEA recognise that the staff at WPI are performing
    research of the highest quality.

    The publication of this research in Science magazine is itself an
    amazing achievement.

    This work has been achieved in an amazingly short period of time and
    the tenacity, dedication and sheer excellence of the WPI has brought hope to millions of people, patients, carers and friends, in Europe and further afield.

    EMEA announces its continued full support for WPI and hopes to be able
    to become a stronger partner in the future

    Signed by all members of the European ME Alliance

    Belgium - ME/CFS Association (Nieuwrode, Belgium)
    Denmark - ME-NetDK
    Ireland - Irish ME Trust
    Germany - Fatigatio e.V.
    Norway - Norges ME-forening
    Spain - Liga SFC
    Sweden - Riksfreningen fr ME-patienter
    UK - Invest in ME

    The European ME Alliance
    www.europeanmealliance.org


    This has one ME group from each of 8 countries. The Irish ME Trust are most likely the biggest financial supporters of it (as they have spare cash from a government grant they get as the sell scratch cards - and when the National Lottery scratch cards were set up here, a fund was set up for charities who lose out). So the group I help run wasn't invited to be involved and so couldn't sign.
  20. Dolphin

    Dolphin Senior Member

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    Yes it is good news, but when they publish population studies in our underfunded field, they can be influential. And the two studies using the definition have also be associated with a large quantity of papers - maybe 50 (?) papers between the Wichita 2-day study and the Georgia study. Certainly 30.

    There is a petition against the definition at:
    http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

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