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Dr. William Reeves dies

Discussion in 'General ME/CFS News' started by Sushi, Aug 3, 2012.

  1. Valentijn

    Valentijn Activity Level: 3

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    I'm sorry he's dead. I wish he was alive and suffering like we do. It's not nice, but it's how I feel.

    I hate him and the ones like him for the harm they've caused. Not just the direct and medical harm, but the subtler things happening downstream too. The crap he pulled has contributed to the ongoing psychologizing of ME, as well as the conflicts many of us have with family members.

    I hate seeing loving mothers brainwashed into torturing their children, because they're told it's the best way to help them get over their presumed mental problems. I hate seeing patients brainwashed into torturing themselves, because they've been told over and over that their ME will go away if they just push through the pain and OI and PEM for long enough.

    I hate what Reeves and his ilk have done to us as individuals and as a community, and I think the vestiges of that harm will remain long after a cure is found or we have a spontaneous remission and can live normal lives again. That distrust of psychologists, that wariness of doctors, and that pain of rejection by friends and family will linger.
     
  2. currer

    currer Senior Member

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    Regarding patient organisations -
    How do you explain the eagerness of the main advocacy organisation in Britain - Action for ME, to attack the Rituximab research?
    Rituximab is an outstanding medical breakthrough and would be adjudged such in any medical field, let alone one as much in need of proper research as ours.

    But their medical advisor was co-signatory on the first paper to attack Rituximab.

    http://www.plosone.org/annotation/l...id=CCB3D245BE4FCE7306B591F2E069F160?root=6147
    http://forums.phoenixrising.me/inde...more-research-needed-letter-in-plosone.12955/
     
    justinreilly and Min like this.
  3. floydguy

    floydguy Senior Member

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    Personally, I think a lot of these organizations should be audited as to whether they are truly non-profits and operating in a manner that fits with their stated goals. I would agree the tone of this letter seems to go well above scientific concerns.
     
    justinreilly likes this.
  4. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    By buying up via the backdoor or influencing "patient advocate groups" etc, you control and stiffle dissent.
    What, did folk think we were just getting so much crap because of a few scumbags?
    It's a broadscale prevention of us being heard, or of work being done on this illness
    See how similar crap was done on anti-smoking lobbies/groups/work/research etc, so this isn't "paranoia" it's based on historical precedent, which Today's scumbags have not only learned, but improved on.

    Long time ago, they (as in any type of elite scumbag) learned that censorship via assassination or obvious bribery etc caused too much problems
    ergo, nowadays, there are far far more subtle ways of unduly influencing things
    thus, see who owns many of the so-called "scientific peer review" journals (at least for pharmceauticals).

    Thus the "official" ME "groups" have been, shall we say....oh...a tad...cosy, with the "enemy", hm? ;)

    This post will be censored in 5...4...3...2...1...
     
    currer and Min like this.
  5. Cort

    Cort Phoenix Rising Founder

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  6. Cort

    Cort Phoenix Rising Founder

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    I understand alot of anger is directed toward Reeves but to say that he, himself was evil; ie he harbored ill intent toward people with CFS and tried to hurt them, is beyond the pale for me...I remember him saying 'we all want to be right' and who figures this out will win the Nobel prize or something like that" ; he like all the other researchers wanted to be right and he thought he was right....

    Reeves did what he thought would produce results...period...he may have been wrong...he may have done things that impeded progress (as well as a few (economic studies) that enhanced it) but he didn't have evil intent...He was simply wrong or ineffective or not up to the task or however you want to put it...he was the wrong man in the wrong position...

    ME/CFS needed someone in the CDC who could discern the profitable avenues of research already occurring and bring the research community together to work on them. Reeves did none of this; under his direction the CDC became isolated from the rest of the research community, the diagnostic issues worsened, no major research breakthroughs occurred on his watch.....

    Except for a short period of time Reeves never had a big research effort going....look at the papers they published and its not a lot...and many of them were on epidemiology and other issues. Reeves major impact was not on research, I don't think - I think the team made little impact there but with the Toolkit and its effect on how doctors treat and view ME/CFS.....and he had a very negative impact there, unfortunately...
     
    Tally and Sing like this.
  7. xchocoholic

    xchocoholic Senior Member

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    Cort,

    I could be wrong but it looks to me that you're saying he was incompetent (for lack of a better word) and we should forgive him for this.
    I don't understand why he didn't realize his limitations and resign. It's not like he didn't get the negative
    feedback needed to draw that conclusion. We all have our limitations.

    I don't know what to make of traditional doctors / researchers winning a nobel prize for resolving me/cfs.
    It seems to me they would've pooled their knowledge by now and figured this out if resolving cfs was their goal.
    Instead, they've become islands of disjointed great info .. Not having a "real" definition of me/cfs speaks
    volumes.

    Tc .. X
     
    Tito and currer like this.
  8. Xandoff

    Xandoff Michael

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    May Dr. Reeves rest in peace. Although I felt about him as many with our condition feel I wish him no harm. Perhaps his passing will bring some good.
     
    barbc56 likes this.
  9. Alex Jones

    Alex Jones yea that thing over there

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    yea 1 less doctor seems a good thing to me.......had ME 20yrs , these idiots drs dont deserve their title their money or our respect. half of them should be in prison after all the abuse & ridiculous childish behaviour i`ve seen them practise. they think anything that isnt written down in front of them cant exist. they need a good SMACK
     
    justinreilly and Wayne like this.
  10. Wayne

    Wayne Senior Member

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    Hi Cort,

    With your post and article (which I appreciate), it seems the discussion regarding Reeves has turned a bit more toward the philosophical. I have to agree that calling him evil is beyond the pale for me as well. How can anyone know with certainty what motivates other people’s actions? The human condition seems to be that people often don’t even know (consciously) what motivates their own actions.

    I think you describe Reeves in a pretty generous (and gracious) way. You're willing to be critical of his work and tenure at the CDC, without resorting to personal attacks, and I have to commend you for that. To refer to him as simply being wrong or ineffective however, is a bit too charitable and a bit too generous for me.

    Without inferring that Reeves was evil, it seems clear to me that besides being wrong and ineffective, he could also readily be described as being grossly incompetent, arrogant, gruff, egotistically narrow-minded, resistant to constructive input, and (seemingly) callously indifferent to the plight of pwCFS who were so enormously effected by his “short-comings”. In short, he seems to have been a very small man inside. That may sound a bit harsh for some, but I think it’s still being fairly generous.
     
    Valentijn, currer, CJB and 8 others like this.
  11. Sing

    Sing Senior Member

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    Branching out, I want to remark upon on all the attention which people in our culture give to death. We are giving a lot of attention to Reeves and his history because he died. Scientific research and funding too goes towards illnesses which result in death. If our illness resulted in a quick death, it would be massively studied as an emergency situation. Instead, in many ways our experience is something of a death-in-life. We are more like a rust-belt town left to dwindle down into dire poverty than some area suddenly leveled by a tornado or wildfire which the Feds rush in to help, and TV news constantly shows.

    One of many research projects I wish would be occur is a study on longevity with ME/CFS--using the ICC definition. Our illness seems to be clearly life-shortening. People pay attention to death. Maybe if we had some solid data about the life-shortening effects of ME/CFS, we could have greater leverage for research funding.

    Now, that I have interrupted this thread slightly, we can return to the main topic--the death of Reeves.
     
    Tally, WillowJ, justinreilly and 2 others like this.
  12. Xandoff

    Xandoff Michael

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    I hope the passing of Dr. Reeves will open the door for a more compasionate and intelligent approach to ME CFS. Reeves was old school. We need new and brighter minds that can tackle this disease. One window closes and an other opens. Let the sunlight of new thinking prevail.
     
  13. Dreambirdie

    Dreambirdie work in progress

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    What Wayne said. Not harsh at all, and definitely generous.
     
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  14. SilverbladeTE

    SilverbladeTE Senior Member

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    What a whitewash!

    he was either:

    a) Grossly incompetant.
    b) Deliberately stiffling things at his government/insurance company masters' orders.
    c) A zealot who wouldn't open or change his mind.

    His actions have had vast, devastating harm.
    The "whistleblower" incident stinks and paints him in an even worse light.
    Trying to re-write that history is naive' at best and craps all over those who've suffered ever since Reeves sidelined things so, so very effectively: too effectively.

    Sympathy for his family and wish things had been different is no excuse for re-writing history.
    At the current rate of "viewing history through rose tinted glasses", I expect to see one day;
    "Stalin's health spas, the wonderful world of the Siberian vacation experience, millions enjoy healthy living and improved health via hard work! There's a gulag just for you, too!"
    /sacrasm off :sluggish:
     
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  15. MDL

    MDL

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    Whether William Reeves was a good fit or intelligent ( I think he was) is not what really matters. He was smart enough to know that, at least with respect to the CFS community, his words and actions mattered. In fact, they had broad, harmful consequences. Looking at the slides of a presentation he gave to a federal Gulf War Committee in 2005 (http://www.va.gov/RAC-GWVI/docs/Minutes_and_Agendas/Minutes_Apr2005_Appendix_Presentation04.pdf), which include images of someone crawling on the ground, pictures of a dark hole, and references to Tolkien’s Gondor, it is apparent he thought CFS was a laughable matter.


    Much has been written about his campaign to ignore the World Health Organization’s name “myalgic encephalomyelitis” in favor of the trivializing and derisive “chronic fatigue syndrome” label. He succeeded, with significant consequences.

    Then there was the 2009 study that cited childhood trauma, defined as sexual abuse and emotional mistreatment, as an underlying risk factor of CFS. Based on his methodologically-challenged Dialing for Donuts in Georgia study, Reeves noted that “CFS patients who were abused as children need to understand that their traumatic childhood experiences are common among other CFS patients.” This statement headlined the CDC news and its website and found its way into many papers. How many doctors, policy-makers and members of the public think that CFS is caused by childhood trauma? His statement had a stigmatizing effect, intentional or not. This is how taxpayer dollars are being used.

    For me, the defining Reeves moment came a couple of years ago when he presented slides to the Federal CFSAC Committee on his study of cortisol levels in people with CFS. As he neared the part of his presentation where he explained the methodology of inducing stress in people with CFS through some sort of intimidating card game played with men in white coats, his spirits heightened. I could see the extraordinary glee on his face as he described the process, and I felt a chill go through me. His delight just didn’t seem right.

    No doubt there are people who loved him for who he was as a person, but that is a different subject. This is about his actions with respect to the CFS/ME community, and while it can be harsh, the truth, for the record, needs to be told.
     
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If reeves starts a graded exercise routine he may return??
     
  17. Dreambirdie

    Dreambirdie work in progress

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    Deborah Waroff via CO-CURE (my bolds) writes:


    "On the death of Dr. Reeves we need to remember and mourn how all his superiors at CDC and HSS have joined in his lack of empathy, caring and duty to our country. Not one CDC head has ever taken any interest in our fate or in managing the departments they are charged with managing. It is understandable that Dr. Unger, as his long-time colleague and subordinate, has been slow in pulling away from Dr.Reeves' ill-conceived orthodoxy. It is for that reason that after Dr. Reeves was promoted sideways due to researchers' and patients strong complaints, we all petitioned Secretary Sibelius, Dr. Francis Collins, Dr. Thomas Frieden, Dr. Koh, and others to name a new chief for "CFS" at CDC instead of acting chief Dr. Unger. It is not that Dr. Unger is not intellegent or capable. It is that the entrenchment of Dr. Reeve's intellectually corrupt regime over 25 years required that change be executed by a person who was entirely free of ties with it. We deserved someone with a strong background in biomedical sciences, a record of research achievement, and some prior success in management of pioneering research. A serious head-hunt should have been conducted, scouring places such as the Rockefeller Institute, Cleveland Clinic, university medical centers,etc. It really wasn't fair either to us or to Dr. Unger that she should have had to be lumbered with cleaning up a mighty mess made by a progenitor she had worked so closely with and who, until the other day, remained in the same institution. We needed someone fresh and bold.

    Let us remember that Dr. Reeves has left undone essentially all important work that needs to be done on the disease that struck Incline Village in 1984-85, and struck many others elsewhere, before and since.
    He shirked his duty to his country.
    He did not do the job he was paid to do.
    Nor did those before him, who misappropriated the moneys Congress allocated.
    CDC has yet to do any real epidemiology on the disease. Their prior gestures have been something out of Road Runner cartoons by Warner Bros.
    The relationships with Abt and Emory are too monopolistic and exclusive have yet to produce anything serious and important. They should be ended, pronto.

    Basically there has been no real management evident at CDC for as long as I've been ill, which is 23 years now. That helped Reeves to get away with his negligence and distortions. Under Bush Julie Geberding squandered millions on architecture and interior design. Now she is Merck's head of vaccines, and is doing a brilliant job of maintaining support for their vaccine products from CDC. Under Obama Tom Frieden made an initial effort to get rid of the excess interior bling she left, but seems not to have followed with the needed management overhaul. His accomplishments in New York and so far in Atlanta have been the broad strokes of preventive public health such as banning smoking in our New York bars and restaurants; he seems less interested in delving into tangled mysteries like our disease or undertaking management restructuring.

    Now let us pray:
    For statistically very significant epidemiological study, including all biological dimensions, of the seriously ill bedbound, housebound, and near-housebound patients with "CFS"or M.E.
    For equivalent major epidemiological study of the wider cohort of patients beginning at north Nevada and the other five major outbreaks of the 1980s and working up to a national distribution from there. This must be extensive, in person from the start, and relying biological parameters. No telephone surveys and no unrepresentave skews like Reeve's Georgia-only studies.
    For an immediate re-write of the CDC web material so that it cites work on biomarkers and symptoms (immune,viral,genetic,neural, gastrointestinal) and at the same time eliminates harmful and disproven recommendations for CBT and GET.
    For CDC guidelines on "CFS" and ME patient precautions before and after surgery.
    For overhaul and removal of key NIH personnel who have blocked research and funding for the past 25 years, wrongly exiling "CFS" from NIAID. (It is now the only disease common to men that had to find refuge under "Women's Health")
    For the epidemiological studies to result in thoroughly documented and well-defined name or names.
    For at least $150 million per year in research grants for biomedical research, including biomedical treatment and cure."

     
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  18. Sing

    Sing Senior Member

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    MDL, the slides of the presentation you shared a link to and the anecdote about the game he played for cortisol testing made me sick. I was struck with nausea. This sort of behavior and approach was totally inappropriate for the CDC given its mission statement, role and public funding. I am appalled that not only he behaved this way, but that the other people working with him gave him a pass or good marks .
     
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  19. MDL

    MDL

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    Sing, I hope you won't let it get to you for very long. I agree with your comments about good marks and giving him a pass. That is why it is important to present the facts, as unappealing as they may be.
     
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  20. CBS

    CBS Senior Member

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    Reeves.jpg
    Looking back at the impact Reeves had on all of us fills me with disgust. Unger, the CAA and others ought to use this time to consider how they will be remembered.
     

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