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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Discussion of the NEW International Consensus Criteria

Discussion in 'General ME/CFS News' started by Nielk, Jul 21, 2011.

  1. Sasha

    Sasha Fine, thank you

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    Oh - I see the link that Suzy (thanks, Suzy) provided from the CAA answers my question about ratification:

    Whats Next?
    Acceptance for particular disease definitions may come by several different routes. The most common route is for an authoritative institution to lead and sponsor development, publication and circulation of a definition. The 1990 American College of Rheumatology criteria for fibromyalgia is one example. This ME publication was developed as an independent effort, free of sponsorship. The panel reflects diverse expertise and experience with CFS, ME/CFS and ME; however, none of the participants represent professional organizations, funding agencies or policy-making institutions like the National Institutes of Health and Centers for Disease Control & Prevention in the United States or the Medical Research Council in the United Kingdom. Such participation might have added clout that could influence more rapid acceptance and utilization at an institutional level, however it might have also resulted in a different product.

    While it lacks the implied institutional endorsement of the 1994 criteria for CFS led by authors at the CDC, this consensus report has a major advantage over the 2003 Canadian clinical criteria for ME/CFS with its publication in a journal with wide circulation in the medical community. (The Journal of Internal Medicine has an impact factor of 5.935, compared to the now-defunct Journal of Chronic Fatigue Syndrome that was never linked to PubMed.) The version published electronically on July 20, 2011 is a provisional paper, with the final version due out in print later this year. It will be interesting to follow formal responses that may be generated through Letters to the Editor and other commentary and analyses, particularly by those who have worked on earlier case definition efforts for CFS, ME and ME/CFS (CFS/ME). The next meeting of the U.S. Department of Health and Human Services CFS Advisory Committee will be a potential venue for discussion of impacts on funding and policy (including Social Security disability), with a recommendation that the U.S. federal agencies adopt ME/CFS as a replacement for CFS still under review by the Secretary of Health and discussion of case definition a regular feature of agency reports and discussion.

    It is hoped that this consensus report will be broadly viewed as a positive development in the effort to identify criteria that enhance patient care and research. The response so far reflects a mostly enthusiastic reception, although there is some disappointment about the lack of objective measures to support symptom criteria. The paper provides a theoretical construct, with no data provided to demonstrate whether application of this criteria set results in a more homogeneous patient population than other criteria. There is also some concern about the possibility that the following statement in the papers Conclusions might have the unintended effect of jeopardizing or impeding access to or payments from government and private insurance coverage systems that do not presently recognize ME: Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome. In the United States, most systems (including Social Security) utilize the 1994 CFS definition by Fukuda et al. rather than the 2005 empiric definition by Reeves et al., but the ambiguity about which one constitutes the present CDC definition gives rise to concerns about the impact of this statement when applied in the medical-legal context.

    The CFIDS Association considers the ME International Consensus Criteria to be an important publication with potentially far-reaching implications for research, policy and education. We are reviewing it closely and will be seeking input from our Scientific Advisory Board (three members of which are authors on the paper) and others about how this criteria definition might impact comparability with existing literature, funding, health care delivery, reimbursement, disability payments/applications, general awareness and understanding and a wide range of other practical issues.​
     
  2. Cort

    Cort Phoenix Rising Founder

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    I agree - this is a bold step - a very bold step. I had not conceived of anyone trying at this juncture to re-institute myalgic encephalomyelitis- and I think it took a lot of people by surprise. Any article with this many prominent authors must have meaning and its placement in what apparently is a significant journal is very important. That means, of the course, that the editors felt this was a subject that should be discussed and that the authors made valid points - which, however the attempt goes, is I think real progress.

    The CDC is supposed to convene an international workshop on the definition - that's was supposed to happen last year, I think. I assume it will happen at some point and it will be nice to have this definition on the table when that workshop begins.
     
  3. Cort

    Cort Phoenix Rising Founder

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    Thanks for pointing how the process went and how that may have effected who signed Sasha - an important point :). I see it is a provisional document and I imagine there will be changes over time.
     
  4. Cort

    Cort Phoenix Rising Founder

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    This was heartening.
     
  5. Ember

    Ember Senior Member

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  6. Ember

    Ember Senior Member

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    Are you sure about this, Sasha? According to Wikipedia's description, "The technique can also be adapted for use in face-to-face meetings."

    The International Consensus Panel was made up of individuals willing to volunteer their time to this project.
     
  7. Sasha

    Sasha Fine, thank you

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    I guess not, then - thanks for the clarification, ember. The reiteration and movement towards agreement are the key features and I suppose it's not necessary to be present but I would have though that remote participation would slow things up a lot, particularly with large numbers of participants.

    I think that with any of these things, participating is not just a question of being willing to participate but able (i.e. not already booked for something crucially important) and also not being content to have one's view represented by someone you know thinks very much along the same lines as you in all important respects. It could be that not everyone from the same institute would attend, for example, if they were confident that their colleague was going to be there to represent their contribution.

    It's my hope that once this has moved into its final version there'll be lots of signatories who weren't part of the original process.
     
  8. WillowJ

    WillowJ Senior Member

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    I liked that it was published in a journal with wider access, too.
     
  9. Anne

    Anne Senior Member

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    I think this paper could be a major step forward and I'm pretty impressed with the line-up of authors, as well as with some of the stands they're taking (making PENE the hallmark symptom, calling the disease ME, etc). It is going to be so interesting to see how this is all recieved, particularly in the scientific community. I appreciated the CAA's post on it and look forward to hearing from their Scientific Board on the topic; they could give us an indication of the importance of this paper.

    I too am wondering about the absence of people such as Peterson, Komaroff, Vernon, Jason. (Montoya?) Does that mean anything? I guess time will tell.

    One big question in my mind is how the authors view the etiology implicated by the name ME. Encephalomyelitis means inflammation of the brain. Do the authors feel there is now enough evidence for that to use this term? Cort, if you are in touch with any of the authors, it would be great if you could ask about this.

    I am also curious as to how this relates to other developments. The CAA state:
    "The authors indicate that they are developing an International Consensus Symptom Scale and Physicians' Guidelines as well."

    Is this separate from the IACFS/ME Primer being developed? (which is to be presented at the Ottawa conference). This in an excerpt from an e-mail from IACFS/ME:

    "IACFS/ME Clinical Practice: A New Primer
    This session will present the highlights of a new CFS/ME primer for primary care physicians. The primer offers a quick, concise, and user-friendly reference to diagnose and provide effective care for patients with CFS/ME.

    GUIDELINES PANEL:
    Fred Friedberg, Ph.D.
    Rosemary Underhill, M.D.
    Rosamund Vallings, MNZM, MB BS
    Alan Gurwitt, M.D.
    Leonard A. Jason, Ph.D.
    Lucinda Bateman, M.D.
    Kenneth Friedman, Ph.D."


    So: some of the ICC authors are in on the IACFS/ME primer. Are two different guidelines being developed, or are they referring to the same document (under production)?

    I will follow this with huge interest and I can't wait to hear Cort's take on this.

    (PS. Thanks also, Cort, for stepping into the discussion and calling for calm. I agree with those who plead for more courtesy and understanding on the forum. Let's fight the psychiatrization people and not eachother! Otherwise we will only, as someone pointed out, just feed the psychiatrization lobby.)
     
  10. max

    max *****

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  11. SOC

    SOC Senior Member

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    Re: researchers who didn't participate.... I'm not concerned, yet, that some of the big names are not authors of this paper. Not everyone is in a position to volunteer their time at a specific time. If some of those people come out against this paper, then I'll worry.

    @Suzy: Thanks for all your wonderful help in the cause of better medical care for PWME. We need people who are not sick and brainfogged to help with detailed and complicated political matters.

    I have a suggestion for you, Suzy.... As I'm sure you know, very many PWME have brainfog to some degree or another. Your posts, while very informative, can be long and detailed, which may be difficult for some of us to process. We don't want to lose your valuable input, but I imagine many of us could follow you better if you found a way to break the long posts into several shorter topical posts that we could read a bit at a time. :D

    Thanks to those who contributed constructively to this conversation. Civil conversation allows us all to see more aspects of the topic than we might have otherwise.

    VERY big thanks to the mods for intervening to calm the conversation and get it back on topic. It's hard enough to follow a long conversation without having to sort through personal attacks and other unnecessary unpleasantries.
     
  12. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Post removed by Suzy Chapman
     
  13. jace

    jace Off the fence

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    We have a statement from Lydia Nielson, clarifying that NME/FMAN was not involved in the production of the ICC

     
  14. Cort

    Cort Phoenix Rising Founder

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    I assume Carruthers was the lead in getting this group together as in the Canadian definition. I looked at the two definitions; in this definition he was able to gather many more backers than before - 26 to 12. Jason wasn't involved in either one - neither was Komaroff. Peterson was in the CCC but not the ICC. Bell was not in the CCC I don't think but he was in the ICC and many more countries were represented in the ICC.

    Overall Carruthers has gotten much more support for this definition than for the CCC and its in a prominent journal. I really liked the CAA's take on it - we'll see over the next six months what kind of response the definition receives from the research community. (the worst thing would be no response I think :)

    It'll be interesting to see, as well, how ME/CFS orgs respond. The UK groups, the CAA, IACFS/ME and CFSAC - will they endorse the definition? I imagine a CFSAC acceptance is a necessary first step for it to move forward.
     
  15. Cort

    Cort Phoenix Rising Founder

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    Can you say anything more about this. I was glad to see Broderick's name listed near the top.
     
  16. Nielk

    Nielk

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    Suggestions by author of CFSNOVEL

    WWW.CFSNOVEL.COM/BLOG


    by carolinetanderson on July 25th, 2011




    "Here are some suggestions for making this new definition stick:

    Print out the definition and send it to every doctor you can think ofparticularly those that have treated you the worst. Explain that this definition was developed by the worlds experts in ME/CFS and that it reflects your personal understanding of your illness.
    Send this definition to every reporter and editor you can think of at every blog or newspaper you can think of. Use your imagination. Write a letter to the editor for your community or city newspaper or blog. Write something you are happy with and send it to dozens of people via email or Facebook. Tweet about it.
    Contact the CDC. Urge them to abandon their useless definitions, which have slowed progress into the understanding of this illness and demand they acknowledge the truth. Point out to them that the 1994 definition they use now is tainted by the involvement of Michael Sharpe and Simon Wessley both with known ties to disability insurance companies. Point out that much has changed since 1994 and the Reeves definition was useless from the start.
    Contact your Congressional representatives. Include the definition. Ask for a Congressional investigation into this widespread epidemic.
    Never refer to yourself has having Chronic Fatigue Syndrome ever again. You might say you have Myalgic Encephalomyelitis, the illness formerly known as Chronic Fatigue Syndrome.
    Myalgic Encephalomyelitis a name with some respectability. Now if we could only learn to pronounce it ."
     
  17. Cort

    Cort Phoenix Rising Founder

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    It seems to be an update of the CCC with Carruthers and some other major figures involved in the new definition (5 of the 12, I think it was, CCC co-authors are on the new definition). I have heard for awhile that an update of the CCC was in order but I didn't know they were actually working on it.

    Jason is kind of like the elephant in the room. He has been more involved in definition issues than anyone else and he has his symptom, I guess it was, survey going that should impact how to define ME/CFS. He wasn't part of the CCC either, though and the new definition certainly focuses on removing the major issue he had with the Fukuda and other definitions; the inclusion of non ME/CFS patients in it and it focuses on PENE - which I believe he believes is fundamental in ME/CFS.

    I will see if he will respond to an email.
     
  18. Nielk

    Nielk

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    I have read from some KDM patients accounts with him that he has been telling them that some major news is about to come out. Do any of you think that this is what he meant? Is it possible for one of his patients who is in contact with him to ask him about it? He is one of the authors of the paper. He might be able to answer some of the questions that people on this thread have been asking.
    If someone could do that, I would really appreciate it.
    Thanks,
    Nielk
     
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Sounds like you know abit more nielk, can you elaborate?

    cheers!!!
     
  20. Nielk

    Nielk

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    P.A.N.D.O.R.A. response to ICC

    International ME Consensus Criteria - A message from the Founder of PANDORA
    by P.A.N.D.O.R.A., Inc. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc. on Wednesday, July 27, 2011 at 6:56pm
    Dear Friends,

    As we have been asked about the recent International ME Consensus Criteria publication PANDORA would like to share the following:

    We are in the process of reading and evaluating this breakthrough publication in the ME/CFS and in the NeuroEndocrineImmune diseases (NEIDs) scientific community.

    We have been informed that there will be a session devoted to case definitions at the upcoming IACFS/ME Conference in Ottawa in September, hosted by the National ME/FM Action Network (Canada), where many of the scientists involved in the new definition will be attending. We look forward to learning more and participating in the overall discussion. We expect that by then, a greater consensus and understanding of such proposal will be shared.

    Dr. Bruce Carruthers is one of the invited speakers and will be speaking on the subject of the new, international case definition. Drs. Leonard Jason and Beth Unger are also invited speakers. The session will be chaired by Dr. Kenneth J. Friedman. Subsequent to the presentations, there will be an opportunity for discussion. For those not in attendance, a DVD of the conference will be available for purchase.

    We believe this publication is a historical one. It clearly sends a message to health government agencies in the U.S. and across the globe that it is time for a change and the time in now.

    In Good Health and In Beauty,
    Marly Silverman
    Founder
    P.A.N.D.O.R.A.
    www.p-a-n-d-o-r-a.org
     

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