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The Bill Reeves thread

Discussion in 'Action Alerts and Advocacy' started by Cort, Sep 9, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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  2. Cort

    Cort Phoenix Rising Founder

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    CDC Grows More Isolated

    Its seems that the CDC has figured this disease out. How else to explain their absence at the 3-day CAA/NIH sponsored brainstorming session recently held at Cold Harbor (From Infection to Neurometabolism: a Nexus for CFS). Thirty researchers from across the US and Canada were there but not one showed up from the biggest CFS team- not one.

    This wasnt how it was supposed to be. Just 6 months ago Dr. Reeves was raked over the coals by the CFIDs Association of America, the IACFS/ME and the CFSAC for his inability to play well with others. In May, sitting before the federal advisory committee on CFS (CFSAC )(and his boss) Dr. Reeves acknowledged hed done a lousy job of communicating and collaborating and promised to turn over a new leaf. Since then hes reneged on a promised summer International conference on ME/CFS management and didnt send a single of his investigators to the first ME/CFS brainstorming session in years.

    Doesnt behavior like this raise a big red flag for CDC officials? Wasnt collaboration one of the key aspects of the new plan? Or has the CDC simply been blowing smoke throughout the review process? In the six months since the Dr. Reeves mea culpa the program has only gotten more isolated!

    Personal Issues Trump Results - The CDC has attempted to paint the patient outrage at the CDCs simply as a campaign engineered by the CFIDs Association and Dr. Reeves animus towards the CAA is well known His unwillingness to send a single researcher to the Cold Harbor conference suggests thats its not about the patients or the disorder anymore; its about Dr. Reeves versus the CFIDs Association. Nobody said it would be easy for Dr. Reeves to mend bridges . Nor did anyone say that Dr. Reeves, himself, had to appear at the meeting but not having anyone show up there is beyond the pale. This is the very opposite of the collaboration Dr. Reeves.

    One has to ask what the point of a program review is if nothing changes. It appears that very little has altered at the CDC over the past 10 years . Back then CDC officials transferred (stole) funds earmarked for ME/CFS and used them for real diseases. Now theyre just ignoring the programs failures and cutting its budget; different process - same outcome!

    A Slap in the Face
    - Allowing Dr. Reeves to so quickly go back to business as usual is basically a slap in the face of both patients and researchers. The CDC is essentially saying we dont care about your protests, we dont care about the problems in this program - you can holler all you want - we really dont care.

    Forcing Change - The ME/CFS Community will have to make the CDC care and they can; the CFSAC meeting on Oct 29th,30th will feature the top brass from the CDC , the unveiling of the CDCs plan and a concerted effort by patients, researchers and professional groups to exert change. Patients will be able to participate via e-mail, phoning in, video and by being there.

    We particularly need patients to show up in this meeting en masse to protest that they wont stand for this. This is our last and best chance.

    (A group called M.A.D. About ME/CFS has been formed to force change at the CFSAC meeting. To join the group register for the Phoenix Rising Forums (forums.ab outmecfs.org) and then click on the Community Tab and go to Social groups).
  3. Andrew

    Andrew Senior Member

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    I used to work for a large public agency, and Reeves behavior does not surprise me. It is a standard method of operation for some administrators. They just do what they want, even if it make projects fail, and promise to change when called into meetings. Then they go right back to what they were doing before. Disciplining them does no good, because it's all part of the game to them. Reeves and his boss need to be fired.
  4. Cort

    Cort Phoenix Rising Founder

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    Thanks Andrew for your insight. I have this very sickly feeling that that's exactly what's happening. I talked to Reeves boss, Dr. Miller, about their underfunding the CFS program and he was very nice - very polite, very understanding - and nothing happens.

    I think this is why we have to really embarrass them! Really put the stink on - I don't think there's any other way to make them change. They are never going to do anything substantial until we do. The flip side is that there's an enormous amount of federal funding for diseases out there; if we could just tap into a little bit of it - we'd have research all over the place:mad:
  5. hvs

    hvs Senior Member

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    I think both Andrew and Cort are correct.

    1. Reeves's behavior is typical for anyone in a well-entrenched position in a bureaucracy. He knows exactly who and who cannot enforce consequences on him within the system. CFS patients and even the CFIDS Assoc. cannot, so he ignores them (and even flaunts his ignoring). The trick for us to identify the person or people who actually can move him out (or more likely laterally to another office).

    2. After 2-3 decades of hearing it from the people he's failing (and, yes, injuring--because the longer you're sick with this the less likely you will recover) he is now more-or-less openly hostile to patients and practitioners.
  6. Andrew

    Andrew Senior Member

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    I think that's an excellent idea. And if that person won't do it, identify who it is who can come down on that person.
  7. Aftermath

    Aftermath Guest

    Dr. Reeves

    Reeves is not just any bureaucrat.

    As you may know, he got the credit (rightfully or not) for exposing the fraud at CDC where research money was diverted to other illnesses.

    Because of this, he became eligible for "whistleblower" protection under federal law. Basically, this guy is untouchable right now. As Mary Schweitzer put it, this status is the equivalent of diplomatic license plates.

    The guy is basically untouchable right now

    Moreover, there seems to be some very credible evidence that he was not the whistleblower, but actually part of what was going on.

    In any cause, it's pretty clear that the promises regarding collaboration were nothing more than lip service.

    We are pretty much hosed for as long as this guy feels like staying.
  8. Dolphin

    Dolphin Senior Member

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    Reeves Must Go -Support the 500 Professionals of the IACFS/ME

    "Reeves must go" seems a good catchy line for anyone who can protest, get stickers, etc

  9. Jerry S

    Jerry S Senior Member

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    Amen! This guy has done enough damage. It's time for him to ride off into the sunset. I just hope he's not replaced by a clone.
  10. Dolphin

    Dolphin Senior Member

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    James (Jim) Jones has similar views so I'd like to see him go also.

    New people presumably wouldn't have existing regular contact with Peter White, Andrew Lloyd, Gijs Bleijenberg, etc.

    And they'd have a hard time justifying the empirical definition.
    So I think it would unlikely to be worse.
  11. Andrew

    Andrew Senior Member

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    I'd like to see the CDC take a leadership role in getting the name changed. They are the ones who caused the "name" problem, and if they really cared about the well being of others, they would fix the problem they caused.
  12. Dolphin

    Dolphin Senior Member

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    That would be good. But if the current team were going to do that, they would probably have done it before the big media campaign over recent years.
  13. The Phantom

    The Phantom Member

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    One of the most important reasons Reeves must go is the Reeves (2005) "empirical" definition. He's publishing research using this definition, even though it's unverified. The original paper introducing the definition is a scientific disgrace. Anyway there's still time before the CFSAC meeting (Oct. 29-30) to sign the petition against the Reeves definition. I sent out the following email to a number of friends & relatives and got 15 or 20 signatures. I added a personal note to each and then said:


    By the way, I'm emailing everyone I can think of to see if anyone is willing to sign a petition about the definition of Chronic Fatigue Syndrome (which I, along with many other people, call Myalgic Encephalomyelitis or ME/CFS). It's a pretty esoteric thing to have to have a petition about, but, unfortunately, it's important. Basically, since there's now a lot of data about infectious and other possible causes for CFS, in 2005 Dr. Reeves of the CDC decided to redefine it (CFS) so it would better fit his theory of a psychological cause. Dastardly! Anyway, there's an online petition against the definition. It's a bit of a slog to get through: there's the petition, then there are references, then there's an explanation, then there are a bunch of additional notices, then there's the place where you "sign". They do want your email address, but you can check a box saying you don't want to be notified about any additional related petitions, and I've never been spammed by them to my knowledge. You can also check a box if you don't want your name showing up on the internet. It only takes a couple of minutes.

    You may have heard about the new data that suggests that ME/CFS may be caused by a retrovirus called XMRV. Given that a retrovirus was suggested as the cause in the early 90's but rejected by the CDC, a lot of people think this is a good time to discuss why the science has been so bad. Hence, the petition. If you want more information before considering whether or not to sign, call, email or shout loudly and I'll be happy to explain further. If you know anyone else who might be willing to sign it'd be great to pass it along.

    Here's the link: http://bit.ly/nYHy5



    Please feel free to copy this statement, add to it, change it, use it in any way you want. But, if you can, please send it to anyone you think might sign. By the way, thanks to Tom Kindlon who wrote the petition, and no offense meant about it being a bit of a slog--it's a great petition with everything there people need. But it is an issue that's a bit difficult for people to understand if they're not directly affected by it. I just wanted to be sure people made it to the bottom and SIGNED.
  14. Dolphin

    Dolphin Senior Member

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    Great work, the Phantom.

    I'm quite happy for people to describe the petition and the page in derogatory terms if it helps gets signatures!

    I even tried to make a virtue out of it in my written pieces to this and the last CFSAC meetings, saying it wasn't exactly a very exciting petition so I was pleased with the amount of signatures I got, etc.

    I also deliberated tried to make it factual and not to personal so people could have few excuses for not signing it. There may be a place for a petition such as "Reeves must go" or whatever but some people including probably many PhDs/MDs might be reluctant to sign that. I didn't want to lose any of my audience with this one.

    I was wondering whether to write to the CFSAC committee again before the next meeting - if I got 50 to 100 more I might do it (if it went over 2000 I would definitely do it). I did that last time when the number who had signed it jumped from 600-odd (when I sent in my testimony) to over 1000 i.e. I E-mailed all of the CFSAC members (except one whose address I couldn't find) to update them on the current total - they might not have got any other E-mails as their E-mail address aren't really given out (I just found them by searching). At the moment it has gone up from 1641 to 1745 but I'm not sure that is enough to justify another E-mail.
  15. greybeh

    greybeh Guest

    Bill Reeves - please give me background

    I'm working my way through Osler's Web, but I've been wanting to get more educated about Bill Reeves so that I can speak out.

    I did a websearch and found this fellow: http://www.universityofcalifornia.edu/senate/inmemoriam/williamreeves.htm

    Sure seems like this could be his father.... So, did he inherit his father's job?

    Help me understand what his role has been with relation to CFS, please.

    I'm a fibro patient and I'm here to learn.
  16. _Kim_

    _Kim_ Guest

    [​IMG] [​IMG] At least dad knew how to smile
  17. minimus

    minimus

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    Letter to CDC about Bill Reeves

    Below is the text of the letter I sent to the head of the CDC. I did not state that I was a CFS patient. I instead tried to make the point that Reeves speaks for the CDC and his comments were not in the interest of the public health or of CFS patients and he should be severely disciplined (fired, crosses fingers) for his comments.

    I am posting the text of my letter here in case others want a ready-made letter to the CDC that they can copy, paste into a word processor, edit or change, print out, sign, and mail.

    My letter is far from perfect. Still I thought it might be helpful to others who want to do the same but don't have the energy to start from scratch.

    -------------------------------------------------------------------------

    xxxx (My Name)
    ..... (My Address)


    November 10th 2009

    Thomas R. Frieden, M.D., M.P.H.
    Centers for Disease Control and Prevention
    1600 Clifton Rd
    Atlanta, GA 30333



    Dear Dr. Frieden,



    Bill Reeves should be severely disciplined for making ad hominem and dismissive comments to the media about the study linking the retrovirus XMRV to Chronic Fatigue Syndrome published on October 8th in the journal Science.



    According to an article in the New York Times published on October 12th:

    The study received a mixed review from Dr. William C. Reeves, who directs public health research on the syndrome at the Centers for Disease Control and Prevention. He called the research exciting but preliminary, and said he was surprised that a prestigious journal like Science had published it, because the researchers did not state the ages or sex of the patients and controls, or describe the duration of the illness or how it came on.

    If I dont know the nature of the cases and controls, I cant interpret the findings, Dr. Reeves said.

    We and others are looking at our own specimens and trying to confirm it, he said, adding, If we validate it, great. My expectation is that we will not.



    Do you believe that Bill Reeves knows more than the editors and reviewers of Science about whether a study is valid, is worth publishing, and contains all relevant information? Why would the CDCs spokesperson on CFS state that he does not expect that he and his colleagues will be able to replicate the authors findings?

    One can infer from Reeves comments that the CDC believes that the Science study is flawed. Is it your position therefore that CFS patients should continue donating blood despite this study? After reading Reeves comments, one can infer that the CDC sees no reason for CFS patients to stop donating blood if they are doing so.

    Clearly, Reeves statements to the media were not made in the interest of public health or of CFS patients. I urge you to take strong disciplinary action against Bill Reeves.



    Sincerely,




    --- My name
  18. _Kim_

    _Kim_ Guest

    Professor Reeves

    Hey Wildaisy - I found this on a 2006 Conference Announcement and it looks like Reeves already IS in academia (god help those unfortunate students at Emory).

    And for those who didn't see his MUPPET head on the other thread:
    [​IMG]
  19. SDD1244

    SDD1244 Guest


    OK... not judging (well maybe I am), but the first impression I get when I see that scary photo of Dr. Reeves is that he looks like a very angry person. Perhaps he could use some counseling ? :D
  20. Dolphin

    Dolphin Senior Member

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    Wheres Waldo? (Bill Reeves)

    Wheres Waldo?
    http://cfsuntied.com/blog1/2009/11/24/wheres-waldo/

    I thought this was a useful short summary of the views of the head of the CDC's CFS program, Bill Reeves.

    People can write comments below it if they like, or alternatively in this thread.

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