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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. Sing

    Sing Senior Member

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    I think this is on to the point, Justin. This is the area which what we have seen falls into--that of shady businessmen, politicians, etc--with an eye towards avoiding consequences: legal, financial or career consequences. And this is exactly where I think they ought to be directly threatened and exposed. Here is our target.
    alex3619 likes this.
  2. Enid

    Enid Senior Member

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    Argue any way you like about this - the failure to recognise a disease process will forever cast them into "has beens" - got it wrong.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Ember, can you elaborate what you're asking pls?
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think that Straus was worse, but Reeves was there longer so he did more damage overall.
    Sing likes this.
  6. Ember

    Ember Senior Member

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    Like you, I see the CDC mission with respect to us as being that of making ME disappear. Among his mistakes, Dr. Reeves bungled the Reeves et al. (2005) definition to the extent that it “has found no support outside the CDC itself:”
    Now Dr. Under has embarked upon her own definition, and early evidence indicates that she too will blur and expand the disease boundaries.

    Unfortunately, I have to challenge your statement that “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.” If you and I are referring to the same statement, that link has been removed now, and the current CDC position subsumes ME under CFS, seeming to expand and blur its boundaries.

    Happily for Dr. Unger, she has the support of the Coalition4MECFS should she decide that ME and CFS are one disease, with differences being matters only of degree. Dr. Unger has managed her public relations carefully, meeting with advocacy groups individually and putting out such statements as:
    I value Dr. Unger's competence only to the extent that I value her goals. Hence my question: “Wouldn't Dr. Reeves' program, implemented without the obvious mistakes, be worse for us?”
  7. jimells

    jimells Senior Member

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    As a patient, what do *I* care what name is attached to the illness? I just want my life back, or even a tiny portion of it.

    Some of this stuff just seems like arguing over how many angels can fit on the head of a pin. By the way, did they ever come to a consensus on that?

    But what really came to mnd while reading this discussion was 'The Peter Principle", a book written by Dr Peter in 1969. The theme of the book is simple enough: "employees tend to rise to their level of incompetence." In a hierarchy, lots of people want to be promoted to positions of more power, control, and bigger salaries. When their work is satisfactory, that happens. When they are promoted just beyond their compentency, the promotions stop, and the organization is stuck with a marginally competent or even incompetent worker in that position. I suppose at that point the incompetent person feels a great deal of anxiety and devotes most of their effort to covering up their shoddy work. Perhaps bullying tactics are handy for covering up one's incompetence?

    I have worked in enough organizations to see these ideas in action, up close and personal. It's not a pretty sight.

    What happens when an organization is mostly populated with workers promoted to their level of incompetence? Would it be known as the CDC??
    GracieJ and xrayspex like this.
  8. Ember

    Ember Senior Member

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    Firestormm likes this.
  9. Andrew

    Andrew Senior Member

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    There's another possibility. The news show called Primetime reported that Reeves refused to appear on camera for an interview, but he did offer his opinion to them about the Tahoe outbreak. According to Primetime, Reeves said it was mass hysteria. And as you know, it was this case of "mass hysteria" to which the term "Chronic Fatigue Syndrome" was given. Walter Gunn was a scientist at the CDC back then, and according to interviews taken by Hillary Johnson, Gunn said it was generally believed at the CDC that CFS is not real. So they just took the money and spent it on other things. The money part was later confirmed in an investigation of the CDC. But instead of firing people for this, they shuffled them around. Reeves ends up in charge of an illness he believes is not real. So what does he do. If he admits he thinks it's hysteria, then he is in the hot seat for taking money dishonestly. So he plays along. He goes through the motions. Then he waters down the definition and starts citing studies done by UK psychiatrists who use a fatigue-only definition and call it a learned illness behavior.

    It strikes me that he was playing a chess game. He had no proof it was infection, but also no proof it was a mental illness. So he tries to shift the definition to fit his theory. And because he believes it's nothing but hysteria, he would see no underlying moral problem in doing this.
    camas, Tito, Nielk and 1 other person like this.
  10. Sing

    Sing Senior Member

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    Andrew, after reading your post, an impression intensifies that Reeves fancied himself as another Signmud Freud--who ironically not only lead the grand new movement of psychoanalysis, but also profoundly erred about the cause of distress in his predominately female patients, who were seen as suffering from "hysteria". While these women had complained of being sexually abused by their fathers and male relatives, Freud made the politically astute switch from believing them to interpreting their symptoms as a repressed desire for sex with their fathers! The patriarchal, sexist culture of the day found that much easier to accept. Blame the victim. Those with low social value must be to blame rather than those with high social value. Freud's doctrinaire position harmed women and women's causes for decades afterwards. So, even though Freud is still held up grandly as "the father" of psychotherapy--someone to emulate--his legacy was shameful and harmful too.
    jimells, camas, Tito and 3 others like this.
  11. MishMash

    MishMash *****

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    I couldn't agree more, jimells. I never understood the tremendous waste of energy and time about the "definition" of CFS. The "fukuda" the "canadian"...who cares. As the Supreme Court said about obscenity: "I can't define it, but I know it when I see it." That's the way most patients feel about CFS.

    Add to that, CFS for most patients is a constantly changing illness. I go from days where it hurts to lie in bed and breath. To days where I actually feel like I might be recovering. Sometimes exertion will result in an ungodly malaise, and other times I recover relatively quickly. And it changes from month to month, season to season. Why worry about the name, definition?

    Research into such a bizarre illness is going to be trial-and-error and anecdotal, not strictly "scientific." Best exemplified by the Norwegians who are now acting on a hunch, not on recommendations from some irrelevant bureaucracy. And your comments about getting ahead in bureaucracies are spot on.
    GracieJ likes this.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Ember,
    You're right, I was mistaken. The link to the medscape CLE is dead. Great news! I haven't been following the news for the past few months, so I missed it. Maybe I should hold off commenting until I check such things. Thanks for catching it.

    The new CLE is much better on the definitions, but reading your comments, I too am concerned about her repositioning definitions as being solely based on study data. This is obviously the only way to negate the CCC and ICC. I think we all can bet they have some tricks up their sleeves in producing skewed, arbitrary and invalid data to animate their new "objective" definition(s).

    I do agree, especially now seeing the changed CLE that Unger is so far clearly better than Reeves was, though still really bad. let me read your posts again and think about it all.
    GracieJ likes this.
  13. GracieJ

    GracieJ Senior Member

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    As I follow these threads, one thought keeps coming back to me again and again: Are we seeing a pandemic big enough and bad enough that if fully recognized and proven, it would break the economic back of nations already on the brink? It has already been noted what a takedown like that would do to Big Pharma. Let a few million people die with their relatives believing they are crazy and lazy, cover up the real history, then get on with the same social experiments again in a few decades. Wouldn't be the first time in history. Read your Marx lately?

    Cover-up fits.

    I don't think it is too farfetched to believe that parts of this are coming from botched germ warfare experiments. Nor is it too farfetched to think it is coming from deliberate experiments. A huge population makes great guinea pigs. Think me silly and conspiracy paranoid. Moving on to the toxic load in the environment which is totally real... who really knows what full combination of factors are taking us down and wiping out our lives one decade at a time?

    I feel completely frustrated for Drs. Cheney and Peterson and others for their efforts to bring this to light. In my mind, they are the heroes in this story, and I hope history sees them that way. They are the Semmelweis figures of our day. Bravo to the long list of doctors and researchers whose names I see over and over as I catch up after 20 years of drugged brain fog.

    As for Reeves, I didn't know him by name until now. All I knew was that every time the news had information and quotes from the CDC about this non-illness that was destroying my own life, it was not good news. (During the 90s, listening to my first husband derisively say, "See??") I do feel anger now, of course. It is anger I want to direct as I get the background information into place better, and can begin writing halfway lucid, halfway intelligent letters to people who could shake this up politically. I do not want to see another Reeves in this story ever again. Yeah, yeah, I know... likely we will see several.

    Personally, I do not see a remedy or cure coming, one size fits all. But recognition, symptoms management and quality of life issues could be addressed in ways that would give us back our dignity and physical comfort.

    Our first line of defense is personal responsibility.
    CJB likes this.
  14. GracieJ

    GracieJ Senior Member

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    jimells, your explanation of the Peter Principle in relationship to the CDC made me laugh.

    Fukuda, CCC, ICC, abc... who cares? I do. I've just spent decades without family or friends on board with this issue. The next four -- or five -- decades would loom large indeed if I had not found the Fukuda information a few years back. It was a life boat of sanity to me. I no longer care if family or friends get it as long as there is a community out there that does.
  15. CJB

    CJB Senior Member

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    Welcome back, GracieJ:hug:
  16. alex3619

    alex3619 Senior Member

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    Hi Sing, its worse than that for Freud. Freud interpreted every little thing his female patients said as though it were connected to sexual abuse. In some cases it might have been, but from my reading in most cases he would twist and distort patient's words to suit his ideas.

    Freuds mistake was in constructing everything to suit his theory and not test his theory. I think modern psychobabble does the same - and that includes any theory about hysteria, which is a made-up unsubstantiated illness.

    Bye, Alex
    Sing and currer like this.
  17. Cort

    Cort Phoenix Rising Founder

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    I think Reeves big mistake - the decision to use random sampling to essentially define ME/CFS - lead to many of his later problems. Once he did that he couldn't find anything positive because the group was so amorphous - so he naturally tended to label this disorder as 'unwellness' and more of a behavioral problem than anything and began doing studies like the immune study -which looked at only 3 factors.

    He should have done the opposite; he should have concentrated on patients in ME/CFS doctors clinics and tried to find subsets within that group. If he had done that I think he would have found some really interesting stuff.
    Sing and GracieJ like this.
  18. Cort

    Cort Phoenix Rising Founder

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    This is interesting from his obituary

    I wonder what this is...Its too early for the CFI Lipkin study. It's clearly not the XMRV study..It could be the BSRI CDC study. The CAA has a similar study underway...
  19. Sasha

    Sasha Fine, thank you

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    I thought the Lipkin study had been expected for June 30 so isn't that overdue?
  20. alex3619

    alex3619 Senior Member

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    On using spin, Public Relations and dubious psychiatric inuendos and diagnoses to create doubt, aside from Magical Medicine I am finding that Walker's Skewed is looking at this very issue. A lot of it is on MCS, I have not gotten to the part where he discusses ME yet. Bye, Alex

    PS I typed PR instead of Public Relations, had to change that for obvious reasons.:eek:

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