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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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CDC ME/CFS Chief, Dr. William Reeves Passes: A Look Back

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 6, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog
     
  2. Esther12

    Esther12 Senior Member

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    Where would he have been a good fit though?

    To me, he seemed like someone who ended up over-promoted and out of his depth. Not only did he waste lots of time and money, but with studies like his recent poorly designed ones with Nater, he ended up funding and publicising research which could never have generated useful data, and would inevitably serve to promote misleading prejudices about patients diagnosed with CFS. It's as if he was impressed by White and Wessely's work but didn't understand it well enough to copy it, never mind spot any problems with it. He should have never been in the position of power and authority he ended up in.
     
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  3. floydguy

    floydguy Senior Member

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    It was most likely not an accident that he was in so far over his head.
     
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  4. Cort

    Cort Phoenix Rising Founder

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    You were probably not going to get the best and brightest in any federal effort for CFS....You could get very competent people or people who wanted to make their name but I would be surprised if any 'stars' would show up there.
     
  5. richvank

    richvank Senior Member

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    Hi, Cort.

    Nicely written article. I think my most enduring memory of Bill is from the talk he gave at the CFS conference in Madison, WI in 2004. He was speaking about the origin of the CFS case definition, and he said something like, "There was a group of us sitting around in a smoke-filled room." And then he caught himself, and he said, "Well, we weren't really smoking, we were at the CDC." Overall the presentation gave the impression that there wasn't a great deal of scholarship or clinical observation that went into the process of developing the case definition. Big surprise to all of us, right?:)

    One thing I always noticed about Bill was that for a bureaucrat, he was not very adept at choosing his words. Maybe he was just too honest, in a certain sense. In a way, this was refreshing, and I never wanted to miss one of his talks, but I got the impression that the audiences of ME/CFS patients were not very amused or reassured.

    Best regards,

    Rich
     
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  6. Tito

    Tito Senior Member

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    In summary, a mediocre researcher with far too much power in his hands.
     
  7. Cort

    Cort Phoenix Rising Founder

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    Hey - he was a very evocative speaker - a pretty powerful personality...and he gave 'good presentations' - I always enjoyed those; unfortunately he didn't add much to the understanding of ME/CFS. I'm sure he was quite smart but I don't think he was an innovative researcher. I still can't imagine why the CDC never jumped on the repeat exercise studies and replicate them; what a huge boost that would have been...(then again, with their cohorts maybe it was better that they didn't)...
     
  8. Cort

    Cort Phoenix Rising Founder

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    I really do think he was over his head. It wasn't an easy task for sure but when you think of the research findings that made a splash it's hard to think of anything other than the early life stress findings -which did make a splash but the wrong kind...

    I think it was all set up by his insistence on random sampling...Here you had a vaguely defined illness and you start randomly sampling people? It just didn't make sense....he should have done it the other way around...since the definition is poor he should have gone to the places the real patients were - the ME/CFS physicians offices and studied them. Instead he studied these CFS-lite patients who drifted in and out of meeting the criteria...no wonder he couldn't find anything! No wonder he drifted into 'unwellness'....I think he made a fundamental mistake in the beginning and it went downhill from there.
     
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  9. Tito

    Tito Senior Member

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    I think it is the characteristics of mediocre people. They make mistakes (like anybody else) but instead of saying 'no, it is the wrong direction', no, they keep going dragging everybody else with them...
     
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Don't know if it is all him, but the main obstacle to CDC progress was their isolation from clinicians who worked with the patients and other researchers. Let this be a lesson. Even if you disagree with someone, it does not work to make them the enemy and isolate them, if they are in power.

    When he was removed from CFSAC, did that help to influence him? No.
    Be careful what you ask for.

    I don't agree with Unger on everything. I'm sure other researchers don't either. But, no progress will be made if everyone just stands across from each other throwing stones. Must be talking and doing research projects together in order to influence. CDC had no confidence in what everyone else was doing and in time, other researchers lost confidence in what CDC was doing.

    Tina
     
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  11. Cort

    Cort Phoenix Rising Founder

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    I agree...CFSAC and IACFS/ME seemed to be most upset by this in their 2010 call for Dr. Reeves ouster...and Dr. Reeves, with his small budget and big workload, really needed to collaborate to make a difference. The isolation from the messiness of the clinical environment may be a bit inbred in the CDC from what I read - they pride themselves on hard data - but with little hard data on ME/CFS treatment - the clinicians not the studies were where the CDC should have been looking....
     
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  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Cort, I think youre whitewashing Reeves crimes a bit.


    He was determined to wage war on patients and science from the beginning. When Prof. komaroffs landmark study was published in 1992, Reeves wrote an article in CDCs MMW journal that the subject of the study (the Tahoe outbreak) was "not CFS or any other clinical entity" and he told PrimeTime Live it was just "mass hysteria." And so on and so forth.


    Spending that much time leading the federal effort on "CFS" there's no way he did not know that it was not simply tiredness. Putting out the Reeves criteria, which defines a cohort almost entirely of depression and idiopathic chronic fatigue, is just one example that shows he intentionally obfuscated and misdirected research and doctor and public education. less than three years ago, a warning was posted very prominently on the CDC CFS web page that patients should be suspicious of anyone claiming there is pathology or pathological processes in "CFS"


    He knew exactly what he was doing. He was much worse than just a "poor fit." As the late internist Paul Lavenger, MD said in an interview in a New York newspaper, CDC "is winning the war on ["CFS"] patients."
     
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  13. Sing

    Sing Senior Member

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    Going back to "the smoke-filled room", he never got a strong definition or understanding of this illness. For that, he/the CDC, needed the most experienced clinicians for their advice and direction--they weren't there, as far as I have heard. It would have been different if a single bug could have been isolated right away as "the cause". Then the CDC could have been off and running on their research without so much input from the doctors who knew the illness. But without "the cause", he/the CDC, were and are dependent on the views of the most knowledgeable doctors--and at this point, the most accurate research that has already been done. I feel that the CDC will continue to compound the inadequacies of his leadership and legacy until they adopt the CCC or ICC, with reviews and updates as better and more research clarifies the picture.
     
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  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    But Cheney and Peterson, for example, made huge efforts to try to educate and involve CDC and were met with derision, incompetence and intentional failure. CDC intentionally cut themselves off from the clinicians. Patients have put an incredible amount of effort into trying to guide CDC and they dont listen. CDCs mission is to crush us. We can only work so much with our enemies before it becomes destructive to us.
     
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  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Reeves and Unger are not stupid. They came up with and continue to use the Reeves criteria precisely because it is meaningless and does not define ME. The Reeves criteria are so patently invalid and arbitrary, there can be no other conclusion.
     
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  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The CLE produced by CDC and CAA and heavily pushed by CDC still says That "CFIDS" and "ME" are invalid names for "CFS" because the first implies an immune dysfunction and the second implies neurological involvement and "CFS" involves neither. Res Ipsa Loquitor, these things speak for themselves. It is implausible that this type of misinformation is caused merely by incompetence. This stuff was proven decades ago. They know this. They are intentionally deceptive. It is clear as day.
     
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  17. HowToEscape?

    HowToEscape? Senior Member

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    Reeves was in charge when the "Dear Sirs, I am SICK" insult was posted at a CDC office, as seen by reporter Hilliary Johnson. It remained posted for more than one year, not a day or two.
    I'm unsure of the policy here re links, but if one googles "CDC CFS Dear Sirs I Am Sick letter" enough hits will surface.
     
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  18. taniaaust1

    taniaaust1

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    Maybe they really never wanted to prove this illness real and that would of been an area which showed promise.

    (I personally often wonder if there is an actual conspiratory to keep our illness hidden as much as possible. It certainly wouldnt surprise me from the actions of the CDC).
     
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  19. Jessica L.

    Jessica L.

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    I must say I agree with Justins viewpoint on this one. I know anger does no good for us, but the removal of Reeves from the CDC was long overdue from all that I have read. It is a shame he passed away, but I think it was fitting that he was removed prior to his death. Was he a skapegoat? perhaps, but that being said he was part of the problem for us and his legacy and continuation of ignorance is something we pay for still....of course this is just my opinion,and I realize others may not agree. I guess its important to just try to look positively to the future, there are alot of great researchers out there like Peterson,Cheney,Komaroff and Klimas, Hyde ,Bell to name a few...we need to focus on their efforts and the new primer looks promising as an option to cdc toolkit [which is a joke]
    ....I think the conspriracy idea is disturbing but possibly holds some validity ,only as I hear there are many documents kept hidden from public view, Id like to know why is this? why the secrecy...? but here again, its probably not the best way to move forward as it just makes us look paranoid....I don't think we should put too much trust or faith in the cdc as long as it is continuing to misinform the public [ie "toolkit"=bad joke.] well, thats my opinion, foe what its worth. I've had this for 6 years, it is "not in our minds". as in we can wish it away, yeas, we can be proactive and adapt our whole life around "IT' to survive and improve but thats what it takes just to get by and it would be just great if the CDC would help at least with public understanding regarding the illness....oh,well...I will try to stay optimistic ,while not expecting to much and hope others can do the same. There is some promising research, thats where i hold my hope, and doing whatever I can to improve what I can.
     
  20. currer

    currer Senior Member

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    I dont like to bang on about a single subject but - it all makes so much sense!!!!
    Just suppose - the real motive to block research into ME is because it sometimes follows / is triggered by vaccines?
    Now we know not all ME cases follow vaccination - but real research into immune dysfunction and ME might throw up some expensive/embarrasing facts best kept hidden in the interests of mass immunisation protection programmes that the CDC itself is responsible for, and has to fund and implement

    What has the CDCs record been on Gulf War illness - another disease linked to experimental vaccines?
    Autism? ? ?
     
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