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Kim McCleary: Getting "Right" and Giving Thanks

Discussion in 'General ME/CFS News' started by _Kim_, Nov 25, 2009.

  1. _Kim_

    _Kim_ Guest

    [note: I've bolded one part of this as it addresses some of the issues about the CAA's reaction to XMRV as has been discussed here over the past few weeks and days]

    November 25, 2009 CAA newsletter

    Getting "Right" and Giving Thanks

    Seven weeks ago, a consortium of researchers at the Whittemore Peterson Institute, Cleveland Clinic and the National Cancer Institute published results of a study linking XMRV, a human retrovirus, and CFS. XMRV had previously been linked to an aggressive form of prostate cancer.

    This Oct. 8, 2009 publication in Science continues to attract worldwide media attention and has ignited interest in CFS from many disciplines within the scientific community. As Dr. Daniel Peterson stated at the Oct. 29, 2009 meeting of the federal CFS Advisory Committee, "XMRV is a scientific stimulus package for the field of CFS research." We couldn't agree more. Congratulations to the team led by Dr. Judy Mikovits at the Whittemore Peterson Institute and inspired by the Whittemore family, especially Andrea Whittemore-Goad, who has suffered with CFS for 20 years since age 11.

    In recent weeks, the U.S. Department of Health and Human Services has formed an interagency task force that is meeting regularly to replicate the XMRV findings, address validation studies, develop appropriate screening and diagnostic tests, and address the safety of the blood supply. There has not yet been a formal statement from the Department about this interagency effort, but the National Cancer Institute (part of the National Institutes of Health) posted an informational question-and-answer page about XMRV on November 18, 2009. More information from the federal agencies is expected soon, especially on the topic of blood safety.

    Numerous follow-up studies are under way at academic centers and government labs in the U.S. and other countries. On November 11, the Cleveland Clinic hosted a meeting of researchers studying XMRV in prostate cancer, CFS and other diseases. Last week, the Medical Research Council of the U.K. held a meeting on CFS/ME at which XMRV studies were discussed. These investigators are proceeding cautiously to ensure that their results are comparable to the initial study based on the characteristics of patients and controls tested, and the laboratory methods and procedures utilized. Although it's tempting to pass along rumors about which groups might have found positive and negative results in samples they've tested so far, we will await published data from authoritative sources before posting updates.

    Response from the CFS community to the initial study, media reports and burgeoning online discourse has run the gamut from salvation to skepticism, from relief to fear, from euphoria to panic. These varied and dynamic reactions have created communications challenges, as organizations and individuals have tried to keep up with the latest news and separate data from opinion and rumor from fact. With the many channels by which people now receive information, new sites have sprung up and existing ones are busier than ever. We're using a combination of new and traditional media to keep our constituency informed. Content, tone and timing are all important and, at times, we acknowledge that we have gotten only one of the three completely right. And we recognize that these missteps have created some questions and strong feelings about our response to the XMRV study. Be assured that we share the hope and anticipation that these important findings will lead to immediate advances in diagnosis and treatment. And know that we're listening to feedback, shared both directly and indirectly, with us. We're constantly working to refine our messages to ensure that we deliver the factual, focused communications you count on.

    On this Thanksgiving eve, we express gratitude for the dedicated efforts of all researchers, professionals, and volunteers who seek to advance understanding of CFS, including the team led by the Whittemore Peterson Institute. We are most grateful for the sacrifices of donors at all levels who have sustained the CFIDS Association of America over the past 22 years and who share our relentless determination to make CFS widely understood, diagnosable, curable and preventable.

    For more information about the topics mentioned above, please visit http://www.cfids.org/XMRV/default.asp#info.

    With warm wishes for a peaceful Thanksgiving holiday,

    Kim McCleary
    President & CEO
  2. _Kim_

    _Kim_ Guest

    I found the following teaser to be out of place in this piece. Why say that you have some preliminary results but aren't going to share them? Just keep quiet if you don't intend to tell all.

  3. DSan

    DSan Guest

    Kim,

    Maybe what she is trying to convey (in the limited way that she can) is that preliminary results are positive. That was my take on it, but I agree with you, we don't need to be teased.

    DSan
  4. _Kim_

    _Kim_ Guest

    Oh, okay, you read that as a hint ;) - I hope you're right. I'm no good at reading between the lines.
  5. Kati

    Kati Patient in training

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    I am glad that CAA presented appologies. I certainly hope that from now on we can all play in the same sandbox without geting sand in the eyes. ;)
  6. hvs

    hvs Senior Member

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    1. I'd say they've often gotten none of the three right.
    2. Proof's in the pudding. Did they take the excellent opportunity presented by the publication of their newsletter to herald the fundamental flaws in the CDC/NIH "replication" study that doom it and doom us to suffering a serious blow when headlines tout that the WPI study is bunk?
  7. Marylib

    Marylib Senior Member

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    The teaser

    I read the teaser as a reminder that "CAA knows best. You kids can go back to bed cuz Daddy is looking after things..."

    I find it patronizing and manipulative.

    If the CAA want to do something right -- get proactive about the CDC replication studies. Turn that tarp into a torpedo.
  8. anne

    anne Guest

    While I'm glad she's cognizant of the dissent, I wonder which part, exactly, she thinks they've gotten right.
  9. _Kim_

    _Kim_ Guest

    I wondered the same thing.

    Why is this newsletter so cryptic? Had I not been following the threads posted here this week about the CAA, I would be completely baffled by this statement. As it is, I've been reading about this and am still confused.

    The other Kim's not a great communicator, I guess.
  10. anne

    anne Guest

    I think these things need more direct addressing, frankly. First of all, the leaking of the WPI study? How did this happen, why did this happen, how do they feel about this happening, and what steps have they taken to make sure its never happens again?

    I also think this sort-of admission of error should not have come as the wrapping for the last paragraph. It could easily read as, "We're sorry you got upset! Donate to us! We've been here for a really long time!" Tenure is not necessarily a virtue in advocacy groups.
  11. Cort

    Cort Phoenix Rising Founder

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    I heard before the paper was relleased that the problem was that the CAA sent out a message that a major study on CFS was coming out in the next edition of Science. That's all I heard.

    The XMRV finding was an open secret; it was being discussed in the Prohealth forums and Prohealth was asked to remove an XMRV paper they had posted to their site. It was widely discussed at the WPI's fundraiser shortly beforehand.

    This talk about the CAA endangering the XMRV paper is just hearsay at this point based on something no one appears to have any data on. Until the WPI clears it up - and I hope they will - it's all unsubtantiated rumor. I think we should be careful about it.
  12. Cort

    Cort Phoenix Rising Founder

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    I saw this as an apology and their extending an olive branch to the WPI and particularly to Andrea. No they're still not jumping up and down about XMRV but they're adjusting their response.

    Content, tone and timing are all important and, at times, we acknowledge that we have gotten only one of the three completely right.

    And we recognize that these missteps have created some questions and strong feelings about our response to the XMRV study. Be assured that we share the hope and anticipation that these important findings will lead to immediate advances in diagnosis and treatment. And know that we're listening to feedback, shared both directly and indirectly, with us. We're constantly working to refine our messages to ensure that we deliver the factual, focused communications you count on.

    I thought the CAA's content was mostly good - I think it was their way of expressing it and their lack of enthusiasm about it that knocked people for a loop. They were out of step with the patients excitement and that's problematic when you're a patient support organization. If they had had equal parts excitement and caution I think they would have done much better. Instead they turned off some people and it made them appear out of touch - which they were. Since there were negative perceptions of them anyway it just reinforced those opinions. That's problematic for them. They should have publically embraced XMRV more fully.

    In their own way they did very well with this communication, though, I thought - not perfect but good.
  13. Marylib

    Marylib Senior Member

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    What "cryptic" is for...

    Aren't people usually cryptic when they are trying to maintain the illusion that they are really really special and important, when in reality they have been caught with their pants down?

    (I am reminded of the final scene of the Wizard of Oz)
  14. anne

    anne Guest

    On another note, I am hoping that the decidedly less cautious tone here means they know that preliminary studies are showing good results.
  15. starryeyes

    starryeyes Senior Member

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    Yeah, I felt like I was being sung to sleep.

    I want the CAA to take on the HHS and demand that the CFSAC recommendations are addressed ASAP. Thank you. I'll believe in them as soon as they start doing this. They only have millions of us ready to help as soon as they say "Go!"

    tee
  16. fresh_eyes

    fresh_eyes happy to be here

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    While I understand the need to wait for publication before reporting DATA, I agree with those who say this is all unnecessarily cryptic. After all, Wanda Jones gave us some useful info (what agencies are involved in the new HHS XMRV task force, how assays are being standardized) in a quick email - on Thanksgiving day no less! Without leaking any sensitive info, we could, for example, hear how many studies are underway (5? 100?), what facets of the disease they're looking at (transmission? antiretroviral treatment?), a ballpark on when results are expected. For god's sake, don't tell us there are "rumors" but you won't tell us what they are! After all we've been through, we're unlikely to trust that Mommy and Daddy have it all taken care of.

    I have no history with the CAA and nothing against them, but in the internet age - when we will probably have heard the "rumors" ourselves already! - this style of communication is just not going to fly. They sound irrelevant at best.
  17. Marylib

    Marylib Senior Member

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    I have an honest question, not rhetorical

    Cort, anyone,

    I honestly want to know something, I want to understand:

    If CAA meant this as an olive branch to the WPI and/or Andrea, why did they not just come out and say so?

    What shame is in that? What have they got to lose?

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