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Time for the Big Talk. How's the CAA doing?

Discussion in 'General ME/CFS News' started by hvs, Oct 26, 2009.

  1. hvs

    hvs Senior Member

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    I suggest that we have a serious discussion about the CFIDS Association of America and their role at the dawn of the new XAND epoch.

    Because of both the general nature of its reaction to this new beginning, because of a number of statements that the groups made online, and because of specific statements from important CAA leaders, I am led in an unsettling direction: I am led to question the CAAs priorities in a number ways, I am led to wonder about the motivations of certain CAA personnel, and I left wondering what role it should play from here on out.

    I could mention the lackluster reaction of the CAA to the XMRV news (and compare it to the reaction of the European ME alliance). I could mention the weird Facebook postings that heralded failed replications of prostate cancer/xmrv studies (though later the CAA insisted they were trying to aid the CFS community). But the most worrying thing has been Dr. Vernon's reaction to the new XMRV era.

    To make my point, I refer to Hillary Johnson's most recent blog post. In this paragraph she imagines a conversation with William Reeves at the CDC.

    "Bill is so out of his league here, but thats hardly news.

    Heres another: Bill says he cant interpret the findings because Science didnt state the age and gender of the patients. Since when do viruses respect or differentiate between men and women, kids and grown ups? A person could only say such a stupid thing if they didnt believe XMRV existed, had gone fishin during Virology 101, or had some political agenda that might be characterized as propaganda. Bill also suggested the paper didnt mean much because he, Bill, didnt know how the patients were selected. The patients were clinically defined by every medical criteria, including the CDCs. What more does Bill want? Does he need to be assured theyre all overweight depressed women living in Wichita who Bill rounded up in a phone survey?"


    Alas, you could replace the name "Bill" in the paragraph above with "Suzanne." Vernon's reaction mirrored Reeves' in that she expressed strange doubts that don't fit science.

    ...

    I leave it to others to analyze why Vernon and the CAA are reacting like this. I don't think vast CAA-CDC conspiracies are necessary. I think we can argue from some basic principles about how threatened professionals and organizations react.

    In any case, thumbs up or thumbs down, I think we have some texts on which we can base a serious debate about the CAA's performance in the first few weeks of the xmrv era.

    I don't write to attack the CAA. It's arguable that when facing an ineffective CDC and a medical community that's always been incurious in the area of CFS/XAND we need to circle our wagons. But if we decide that the CAA is shooting inward there's no point in defending them.

    ******************************
    Vernon or the CAA has since edited the "Xplained" article to remove the section that mirrored Reeves.
     
  2. anne

    anne Guest

    I'm really glad you posted this as I've been wondering as well.

    Several years ago I wrote an essay on CFS for a magazine. I was trying to insert some of the political history of the disease and when I spoke to the CAA about it they told me, essentially, that they'd prefer I not bring those things up because they were trying to "move forward." A year or two later I did the media-training for the god-awful "Faces of CFIDS" exhibit and it directed us to refer people to the CDC website. Given the information on that website was actually HARMFUL (i.e. exercise) I said I was not comfortable with that. I was never asked to do any interviews.

    Nonetheless, I was bewildered by Hillary Johnson's attack on the CAA in her earlier blog post. But after their reaction to XMRV, I am starting to have doubts. I find Vernon's statements linked to above bewildering, and the weird posting of the German study without much context

    If they are so confused about the sample, why continue to hammer on it in public--thus raising doubts about the study?--and instead pick up the phone? And if the CAA is in conflict with the WPI, well, I trust the WPI.

    In the reactions to the XMRV, it seems those who have cast doubts on the study have been people who will suffer either financially or politically from it--Teitlebaum, the British psychologists, the CDC, "Natural News." The real CFS scientists, the one who have been laboring for us for years if not decades, have all been quite enthusiastic.
     
  3. hvs

    hvs Senior Member

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    I guess if the Association were worried that other labs were going to fail to replicate the findings they should have been laying the groundwork by educating their members why the WPI study was done carefully and letting them know what a poor replication study would look like.
     
  4. anne

    anne Guest

    The answer may simply be one, not of malevolence or greed, but of weakness and fear. People function politically in different ways--some aggressive and some cowardly. Theirs could simply be an instinct toward compromise, toward making everyone happy, the "big tent,"--trying to work with people like the CDC to the extent that they'll publicize their harmful treatment information . And then when something like this comes along, they talk about making a "tarp" big enough to protect everyone--their instinct is to echo naysayers instead of looking at the evidence with clear eyes, instead of taking a stand.
     
  5. Summer

    Summer Senior Member

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  6. dannybex

    dannybex Senior Member

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    The NCF

    While I don't have permission to reprint or repost the email, one of our group members got an email from the NCF, and initially at least, they're quite skeptical of the XMRV findings, especially compared to the CAA.

    Keep in mind too that the NCF's favorite hobby is bashing the CAA. Typically more than half their newsletter is spent bashing other groups, individuals, etc. They seem to thrive on feuds and grudges.

    And also, wasn't it the NCF that announced they had found THE cause about 2 or 3 years ago?

    IMHO, the CAA is just being cautious. As is this European ME organization:

    http://meagenda.wordpress.com/2009/10/22/revised-mea-statement-on-retrovirus-xmrv-and-mecfs/
     
  7. Nina

    Nina Senior Member

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    Hi everyone,

    I am not from the U.S. and therefore maybe this is not my place, but I really would like to understand what is going on. I have read both Suzanne Vernon's statement and the CAA's post about the German XMRV cancer study and I can't really understand why there is so much criticism.

    I know one researcher personally who is trying to reproduce the WPI results and says he is lacking some vital information that is not in the Science paper. Don't ask me what it is, this is beyond my grasp, but I know that this special person only has his patients' best interest in mind and he is totally excited about the whole XMRV thing and all the opportunities it opens up.

    Maybe you are right in saying that this shouldn't be discussed in public as it allows the old sceptics to downplay the hugeness of these new developments. But as excited and hopeful as I am that this will end all the "AIYH"-discussions, I also know there is a long way to go and we need to be sure each step is taken with the utmost carefulness.

    When I said I would like to understand what was going on, I really meant it. Is this to do with history as I have only known the CAA for less than a year? Up until now I thought the CAA was on "our side", and I would hate to support the wrong camp if you know what I mean :)
     
  8. Robin

    Robin Guest

    Andrea Whittemore-Goad posted this on the CAA's facebook page:

    The most important thing is we all come together and fight together . Focusing on the past gets us nowhere . I don't think negative comments ever help they only hurt . People don't realize every person on the board for CFIDS have a very very close person suffering with this disease .

    It couldn't have been said any better. It's a time for patients, carers, and professionals to stand together.

    Here's the biographies of the CAA's board of directors. I have no doubt every single of one of them wants the XMRV research to pan out and have a treatment or cure for CFS.
     
  9. Summer

    Summer Senior Member

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    Yes, all you say is true about the NCF, though I disagree with you on the CAA only being cautious. I think they have hurt us greatly.

    This article is presented for the historical facts of the actions of the CAA, only. I believe those are true, and I could not find a better source for this important aspect of their history. Hillary knows all of this, but I could not find it online anywhere to post. :)
     
  10. dannybex

    dannybex Senior Member

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    Hi Summer,

    I totally understand. I just think that dwelling forever on the past becomes at some point counterproductive. Better to look ahead...? :)
     
  11. Cort

    Cort Phoenix Rising Founder

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    I think the CAA is being cautious but so is just about every other professional group and many of them are mirroring each others questions.

    Its inevitable that this happens - the first study is always the preliminary study - it always opens up quite a few questions; can it be replicated, how many people will it apply to, what was not done in the first study that needs to be done now? Until the sciences built brick by brick I think the professionals will continue pointing out what next needs to be done.

    I'm going to post something for my website on the critical steps for XMRV. I can see at least four - all of which need to be met - for this to be the BIG THING.

    Seeing that Facebook page - its clearly they're be a little more cautious than everybody else. What I heard from the grapevine was that they were probably less convinced than most. I think that is probably Suzanne Vernon talking - she is the head of their Research effort. Honestly if she's not convinced yet then I think we should all take note of that. She's worked very hard on our behalf over the past couple of years. I think she is simply a careful scientist being careful.

    I know that can be a bit deflating during our time of apparent triumph but XMRV still has a long long way to go in the research community - many papers - before we can say that it's it. Hopefully we'll know fairly soon.
     
  12. hvs

    hvs Senior Member

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    I guess the idea I'm trying to introduce is that the CAA in the past month might have demonstrated that they are anchored in the past--past paradigms about the disease, past relationships with the CDC, past paradigms of who is qualified to profess about the nature of the illness.

    Indeed, we don't want to spend our energy administering litmus tests to our organizations. We don't WANT to, but I am suggesting that our hands might be forced here. Is the CAA coming with us into the era of XMRV/XAND?
     
  13. hvs

    hvs Senior Member

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    Hi, Nina. What I'm suggesting about the CAA posting of the German study is this: they put up the story about the German study's failure to find xmrv with the text:

    The Association has emphasized the need for replication studies to use similar laboratory methods and to select patients with characteristics similar to those in the WPI's XMRV study. Here's a cautionary tale about why this is so crucial.

    The implication of the text is, "don't buy what the WPI is selling until it's been replicated and there's evidence that it won't be."

    After some folks on Facebook took exception to this, the CAA said they'd misunderstood them. The CAA said they were trying to put a tarp over PWCs to protect them from disappointment and that they were preparing the community for the possibility that labs would fail to replicate the results (acting in good faith?).

    My argument and that of others is that the quality of the Science article speaks for itself.

    When Vernon comes back and states that she needs all kinds of data about the ill subjects and controls when we're dealing with a virus that recognizes neither it raises a red flag.
     
  14. Aftermath

    Aftermath Guest

    Association with Dr. Reeves?

    It's one thing to be cautious. Good scientists are. Anyone who thinks we are out of the woods at this point is in for a rude awakening.

    Still, I think she made a huge mistake making an issue out of patient demographics (the info that the Science editors deemed unnecessary for publication). If anything, the last thing that she should be doing is publicly agreeing with Dr. Reeves.

    Here is the real question....

    To date, has the CFIDS Association of America (CAA) publicly gone on record calling for Dr. Reeves resignation yet to date?"

    If not, it's unlikely that I will support them anymore.
     
  15. Cort

    Cort Phoenix Rising Founder

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    Here's the answer.

    They were the first organization to publicly call for Dr. Reeve's resignation. Everyone else - the IACFS/ME, CFSAC - hung back. In fact the CFIDS Association tried to get the CFSAC on board several months before that pivotal November meeting of last year but they refused to publicly criticize Dr. Reeves. The CAA was the only organization that dug into the CDC's records and document all that financial misconduct and poor productivity. They also called for the program to be moved into an entirely different branch of the CDC. They broke with CDC on the physician treatment program they created their own (more successful an accurate) physician treatment program.

    Check out these posts and blogs if you're interested about the CAA's relationship with the CDC.

    CAA Slams CDC

    CDC/CAA - the Rumble Continues

    CFID's Associations Critique of the CDC's Five Year Plan

    Registering Dismay -The CDC's Platinum Patient Registry - entire blog was derived from facts the CAA dug up

    Kim McCleary on the CDC's Five Year Plan

    That's just the beginning - there's a lot more than that. For some reason this has just not gotten across.

    Dr Reeves was elucidating a concern the other researchers as well as Dr. Reeves have had. She is her own researcher. We're in big trouble if the fact that something you say agrees with something Dr. Reeves says gets you in trouble. (I guess we're in big trouble :)) They are all researchers and there is at times some common ground.

    Litmus Test - There has been a litmus test for patients in past; its very simple - if you interact with the CDC at any time, if you don't publicly oppose everything the CDC is about, if you don't continually trash them - then you're suspect. The CAA's media contract with the CDC got them a lot of hot water with some patients.

    The fact is that the CDC, like any organization, has had its good points and its bad points. Early in the 2000's they had some good years with the Pharmacogenomics and CAMDA studies and supporting the Dubbo studies. During that period the CFIDS Association focused on the NIH. When the CDC program tanked (after Dr. Vernon left) the CAA focused on the CDC. I have been watching this from the beginning. They were the only ones to do any digging into the CDC program over past year.

    If want to know what everybody else was doing (and what it cost us) check out this blog:

    Missed Opportunities Dog Efforts at Change
     
  16. Koan

    Koan Be the change.

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    Respectfully,

    If you simply want to be cautious, your words are carefully chosen, neutral in tone and, well... cautious.

    If you want to discredit, you publicly state your criticisms... repeatedly.

    I don't see caution.

    one opinion,
    Koan
     
  17. Cort

    Cort Phoenix Rising Founder

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    Koan, since I know you are acting cautiously I'm going to hold you to that and ask you to demonstrate how the CAA has 'repeatedly' tried to 'discredit' the WPI's findings.

    And how they have repeatedly not used words that are not 'neutral in tone'.
     
  18. hvs

    hvs Senior Member

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    I have tremendous respect for your work, Cort. You are a very tenacious researcher and translator of the science.

    But I just have to respectfully disagree that the CAA's publicized displeasure with the CDC's 5-year plan and Reeves' productivity (did they really explicitly ask for him to be fired?) disproves my hypothesis that they've gotten an "F" for the past few weeks and are showing hints of irrelevance, at best. (And reasonable people are accusing them of worse than irrelevance.)
     
  19. Koan

    Koan Be the change.

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    Hi Cort,

    Choosing words cautiously here, I spoke generally about how one behaves when one wishes to be cautious since it was said that they only wished to be so.

    CAA has repeated their criticisms of the study publicly. They were, I admit, my inspiration for the observation that one does not repeatedly and publicly criticize when wishing only to be cautious.

    It would have been enough to voice cautious interest without pointing out what they see a flaws, wouldn't it? I think so.

    Surely, when being cautious, one does not plant seeds of doubt. One simply plants no seeds at all until one knows what one is planting.

    Peace to you,
    Koan

    ETA I wasn't going to look for evidence because I'm more than a little under the proverbial weather, and so on and so forth but, in case I have now misstated - as I have been incautious and made a direct statement - I will go in search. I don't expect to be too speedy but I don't want to be unfair. later.
     
  20. Advocate

    Advocate Senior Member

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    Hi Danny,

    So on the one hand you say that the NCF [National CFIDS Foundation] is skeptical of the XMRV findings. On the other hand you say that the NCF's favorite hobby is bashing groups, individuals, etc.

    Doesn't this suggest that if we are to be consistent that we should not give much weight to the NCF's skepticism?
     

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