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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 agree with a lot of what you say, but you can't really expect the CAA to raise money based on the XMRV discovery after they've cast doubt on the study?

    Also, I trust you know that the CAA has only very recently gotten into the business of directly funding research at all.

    I would love to see the CAA accomplish just what you say, but for the moment donors have every reason to think that their money is more likely to go to xmrv research by donating directly to the WPI. (If they give to the CAA, the money might go to advocacy stuff like the "Faces" display.)
     
  2. anne

    anne Guest

    I want to see how the CAA reacts to the news that the CDC is going to use the Witchita sample. Since they've come out against this sample before I hope they come out now. I want them to prepare the media for the inevitable inability to replicate the WPI study. I want them to start protecting us from the CDC, not the WPI.
     
  3. PoetInSF

    PoetInSF Senior Member

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    LOL, now we are dissing even CAA for possibly disagreeing with WPI study? I have no idea what you find objectionable in Vernon's writing. If anything, it puts Johnson's credibility in question by dissing what appears to be a healthy skepticism. Like everybody else, I'd like WPI study to be true for most CFS patients. But you guys need to take a deep breath and let the scientists do their work. Believing so much in WPI study and dissing everybody who question it will only hamper the progress.
     
  4. anne

    anne Guest

    Hey, Poet, the "LOL's" not necessary.
     
  5. hvs

    hvs Senior Member

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    Among other things, Vernon appears to be politically naive. If she doesn't understand the political implications of mirroring her former boss's public statements, her public statements need to be vetted by someone at the CAA with more savvy.

    ...But thanks for the tip to take a deep breath. Hadn't been patronized yet today.
     
  6. anne

    anne Guest

    Poet, one thing that's really important here is the credibility of the WPI study. They didn't just do it, make a zine of the results and mail it to people. They, very astutely, got very prestigious backing and worked to get it published in the most prestigious journal possible.

    It's not just the credibility of the WPI here, or he said/she said. It's the backing of the institutions that replicated it (and the Cleveland Clinic is no friend of CFS) and of the journal that published the study.

    Dr. Peterson said something today like, when questioned about the sample, "I think Science speaks for itself." And the room seemed to agree. That's the point, here.

    We can read Dr. Vernon's words and disagree. But it's important that you understand the credibility this study has, because the authors obviously worked very hard to make it unimpeachable.
     
  7. Cort

    Cort Phoenix Rising Founder

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    In their critique of the CDC's five year plan the CFIDS Association came out strongly against the empirical definition and they are not using it in any of their studies.

    The CFID's Association appears to be very worried that the CDC will use the wrong kind of patients to replicate the WPI's results. They're worried that the CDC will use patients diagnosed according to the empirical (Georgia) definition and that will dilute the findings. That's my assessment of what their statements mean - not that they're dissing the Science paper.

    In my opinion Hilary Johnson is just way off base here. Later in the article she tries to link Suzanne Vernon to the sexual abuse studies. Suzanne Vernon did not author either of those studies! (But she did work for the CDC so I guess she's tainted?). For whatever reason Hilary hates - I think hates is not too strong a word - the CAA. I don't know why that is. I sat right in front of her at the meeting. I turned around and said to her that I don't understand your feelings regarding the CFIDS Association and I'd love to talk to you about them sometime and she wasn't interested in doing that. I'd site really like to know what happened. My sense is is that it all started a long time ago.

    The CAA has been funding research for as long as they've been in existence I believe. I remember research grant to Paul Cheney. They also funded the DeFreitas study. They revamped their research program couple of years ago but they were funding research prior to that.
     
  8. hvs

    hvs Senior Member

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    So we need the CAA to come out strongly in reaction to the news that the NIH is using the Wichita people to"replicate."
     
  9. Advocate

    Advocate Senior Member

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    I've lost track of what part the CAA played in the "Faces" display and the media advertising. I have not seen the display but I did see one ad, and it just didn't make sense to me.

    The ad told people to go to their doctors, (my opinion follows) who wouldn't have a clue about what was wrong or what to do, and might well expose the person to verbal abuse. When the XMRV connection becomes more widely established, I think we are going to see an outpouring of anger over the verbal abuse.
     
  10. Koan

    Koan Be the change.

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    This cannot be emphasized enough!

    Thank you, Anne.
     
  11. Koan

    Koan Be the change.

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    Cort,

    With all due respect, and much respect is due you, speculating publicly on your take on Hilary Johnson's thoughts is unwise and unfair.

    Commenting on her willingness to discuss her thoughts with you is immaterial to the discussion.

    Thanks,
    Koan

    ETA: I think it is fair to say that Hilary Johnson has done more to further the cause of awareness of ME/CFS/CFIDS, as one individual, than the entire CAA with all its member over the entire course of its existence. Credit where credit is due.
     
  12. Roy S

    Roy S former DC ME/CFS lobbyist

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    Cort, when did you talk to Hillary?
     
  13. Advocate

    Advocate Senior Member

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    Hi dkesh,

    There was a time when I would have agreed with you.
    But right now I'm longing for a national organization that is more in touch with what the sickest patients are thinking, feeling and wishing for. I long for a national organization that will speak for them.

    For example, has the CAA written any letters to the editors of major newspapers that capture the excitement that many patients are feeling about XMRV? Have they pointed out that the WPI study had built-in XMRV replication by the Cleveland Clinic and the National Cancer Institute? Have they publicly and forcefully expressed outrage that Reeves Disease criteria (that was one of my favorite moments in yesterday's hearing) may be used to try to replicate the XMRV results?

    I long for an organization that will use patient outrage at how they've been treated to get a congressional hearing on the unscientific and malevolent CDC and NIH psychiatric approach to CFS.

    I really don't want the CAA to fail, but I think they are missing the boat. And then what will we do?
     
  14. Roy S

    Roy S former DC ME/CFS lobbyist

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    Good point Advocate. I left out talking to editorial boards in my long article because it was getting too long. The Washington Post needs to be cattle prodded and the people that could do it are there for the CFSAC meeting. Everybody in Washington reads the WP, and it has influence.
    But Kim McCleary's salary last year was only$177,517.00. We shouldn't expect too much.
     
  15. Koan

    Koan Be the change.

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    I thought I was too exhausted, too spent and too fried to laugh.

    I'm not! Thanks for that!

    Laughing ruefully...

    koan
     
  16. Aftermath

    Aftermath Guest

    Cort's Overture

    Koan,

    As much as I agree with you that Hillary Johnson has done a tremendous amount to advance our cause, Cort's overture was by no means improper.

    Hillary Johnson's disdain for the CFIDS Association is not something that Cort is inferring or otherwise speculating about. I can't see how anyone could read her August 7 post on Osler's Web entitled "Inside the Labyrinth" and come away with any other conclusion.

    Moreover, considering the fact that Hillary and Cort have engaged in public debate over the efficacy of the CFIDS Association (see Cort's reply piece entitled "Headhunter on the Prowl"), his attempt to extend an olive branch and open a face-to-face dialogue is appropriate and laudable, not immaterial or unfair.

    Again, at the end of the day, healthy, public debate is good for all sides of an issue.
     
  17. Cort

    Cort Phoenix Rising Founder

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    Koan you are ignoring or don't know of a considerable history of Hillary Johnson bashing the CAA that dates back at least 18 years. The CAA funded her while she finished Osler's Web. More importantly they got her access to the CDC documents she used to research her book. They were astounded to find the CFID's Association's integrity questioned and their reputation trashed - as I was told - when the book came out. They thought they had nothing to hide.

    Yes, Hillary Johnson did a big service to CFS when she published that book but she also painted a very black/white, us vs them world which I wonder how helpful to us it is at times. My frustration at the research world has never, until quite recently been aimed at individual researchers. but at the administrations nickel and diming us for over 20 years. I have meet some CDC researchers (and I'm not including Bill Reeves) - and honestly they seem like researchers anywhere else - they're genuinely interested in this disease, this is a career they're in right now and, like anyone else, they want to find the answer to this disorder. Quite frankly I cringe at Hilary's portrayal that suggests that anyone associated with the CDC is 'bad' or ignorant or whatever. I think she frequently goes far to far at times in her attempt to ‘demonize’ the ‘opposition’ - that's my personal opinion.

    Suzanne Vernon: Her attempt to do so has now extended to Suzanne Vernon. This researcher with this rather amazing intellect - as is clear if you ever speak with her - whom I last saw at the Reno Conference - hair askew, obviously on the edge of exhaustion - is now painted by Hilary as another 'Bill Reeves' and is credited with the working on the sexual abuse paper - which she had nothing to do with.

    Skin Crawling Hilary's most recent comment about Kim McCleary was that it makes her 'skin crawl' to see her represent CFS patients. Kim McCleary is married to a man whose mother - at one time a powerful advocate - has had ME/CFS for over 20 years. She accused the CAA of planning the next ME/CFS 'pogrom'. She belittled the CFSAC calling it 'that little committee'.

    Snooze Fest - Hilary also most recently called the "Banbury Conference' - 35 researchers gathered in an intimate setting for three days - basically living together - in the first real ME/CFS brainstorming session in ages - a 'snooze fest'. Why did she do that? It was certainly no snooze fest - it was apparently a very dynamic meeting. Why call it a snooze fest? The only thing I can think of is that it was because it was organized by the CAA. She then went take the Banbury conference to task for stating that there was no retrovirus in chronic fatigue syndrome. Unfortunately the Banbury Conference occurred well before the Science paper came out.

    Honestly we could go on and on. This is ugly stuff! Its not fair.

    I want to note that I just found that Hillary has removed her comment that Kim McCleary made her skin crawl from one post. I objected to her implying that Suzanne Vernon was involved in the sexual abuse studies - and she removed that as well. She also removed the comment that suggested that her and Bill Reeves were just alike. She seems to have removed many of the really inflammatory comments from a few of her blogs.
     
  18. Cort

    Cort Phoenix Rising Founder

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    CAA / Hilary Johnson

    As to the suggestion that Hilary Johnson has accomplished far more than the CFIDS Association lets take a look at what Hillary Johnson accomplished. Yes she alerted chronic fatigue syndrome patients and others to the terrible reception by the federal agencies to this disease when it exploded on the scene some 25 years ago. Besides being a scintillating read it's provided CFS patients a good backdrop to their illness.

    Besides that its hard to say that it's had any direct effect on the research environment or government policies or ? That's not its fault - there's a limit to how much a single book can accomplish. That book accomplished alot.

    What has the the CFID's Association accomplished?

    • They were critical in exposing the first CDC scandal that emanated from some $12 million dollars in CFS funding used for other diseases.
    • They were critical in getting a Social Security disability ruling specifically for chronic fatigue syndrome. Its quite rare by the way for a single disease to get a specific Social Security disability ruling.
    • Its safe to say that the CFSAC meeting many people watched recently never would have happened if not for the CFIDS Association. They played a critical role in getting its precursor, the CFCC going, and then in getting it upgraded to a full federal advisory committee. When the government wanted to get rid of the committee several years ago they fought hard to keep it going. (No one else did - theres no else to do that).
    • They have funded numerous research projects throughout their history; they funded Paul Cheney's initial work early in the annals of CFS. They funded Elaine DeFreitas work with retroviruses. They funded John Martin's work - which was later discredited. Without their funding and we have no repeat exercise studies to talk about; they the sole funders for the Pacific fatigue lab's repeat exercise studies. They recently funded work into endogenous retroviruses that the NIH later picked up. They're co-funding Dr. Lights enormously intriguing muscle receptor studies. They just funded a package of four excellent research studies. They just got 35 researchers together for three-day brainstorming session at Cold Harbor. They are building an international network of researchers that will require them to share samples, shared data, use standardized samples, etc.
    • They cajoled the CDC into funding its first ever media campaign on a disease.
    • They exposed the recent financial misconduct at the CDC. Doing that helped galvanize the CFSAC and IACFS/ME; two organizations that have never taken a stand on the CDC to finally take a strong stand on the CDC. I can't imagine them doing so without the substantial push provided by the CFIDS Association. The CFIDS Association earlier tried to get the CFSAC on board to take action against Dr. Reeves and they refused.
    • They recently created a Medscape physician education program created by ME/CFS physicians that has in its first six months educated 28,000 physicians.

    This is all off the top of my head. I'm sure I could come up with more if I took more time.
     
  19. Robin

    Robin Guest

    who else would want the job?

    To be fair, it's not unusual for executives at nonprofits to be well compensated, even more so than Kim. Some of them bring home over $1 million a year, which is truthfully a fraction of what many could earn in the private sector. Running a non-profit requires a particular skill set, and, someone with comparable years of experience probably wouldn't work for much less than Kim does. Whether or not you think she's good at her job, her salary is not unreasonable.

    Clinical and research physicians have intimated that working with CFS is pretty much a career killer, I imagine the same would be true for nonprofit and it would be difficult to find someone to replace Kim.

    I love Hillary Johnson but she's a bit of a sh*t disturber. CFS is such a badly maligned and mismanaged illness, inciting the patient community into divisiveness isn't constructive.
     
  20. Eucalypta

    Eucalypta Guest

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    lala-land
    Neither is using millions designated for research to furnish offices and pay high salaries for a non-profit CEO.

    I fully share Hillary's disdain wrt the CAA.
     

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