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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. Cort

    Cort Phoenix Rising Founder

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    CDC's mission is to crush us? ...

    Think of it this way...you're a career scientist - like anyone you'd like to garner acolades, promotions and more money.....so you....

    a) decide the crush the legitimacy of the very disorder you're working on - hoping your negative studies and mediocre research will propel you somehow to the top of the heap. That's how you're going to make you way? If that's what you think Reeves did - and you must since he was the leader of the group for over a decade - it sure didn't work for him when he got booted out of the program...
    b) you try to find an answer to a puzzling disorder that no yet has figured. You may be right, you may be wrong, you may be effective or ineffective but you're trying..

    I think the second is a bit more tenable. The difference in interpretation, though, is huge...one is some sort of government conspiracy to hurt people with a disorder; the other involves researchers with different opinions each of which is convinced they are right...

    Everybody has their viewpoints....the viral researchers, the cardiovascular, hormone, etc. researchers...they all think they have a piece of the puzzle and maybe they all do. I don't think trying to wrap some sort of conspiracy over a very difficult scientific puzzle is accurate..

    Reeves had a viewpoint and a way of doing things...that was not very successful......he's certainly not alone in that in our history. It's really, really too bad he was in charge of the biggest CFS program on the planet. I think we would have been much further along if somebody else was in there; I think he was a failed researcher...I can't think of any real breakthroughs on his watch - he produced a terrible Toolkit.....he couldn't get along with alot of people very well....but a conspiracy to destroy CFS.. not at all...for me its much more simple than that; he just wasn't up to the task.
    Tally likes this.
  2. Cort

    Cort Phoenix Rising Founder

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  3. Old Salt

    Old Salt Rowing the boat

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  4. Old Salt

    Old Salt Rowing the boat

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    If the cause of CFS is a common denominator in most all of the degenerative diseases, and is identified, it could/would eventually be devastating to the entire Medical Industry! Primarily, the drug manufacturing division. They are not stupid.
  5. floydguy

    floydguy Senior Member

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    Unfortunately, the actions of the CDC don't line up with your speculation. The "Dear Sir" letter is a fact and underscores from day one the CDC position on the illness.

    As mentioned before, Reeves was clearly over his head. A competent person who really wanted to make progress would have accomplished much more than Reeves did. IMO, it is total speculation that because one is a scientist they are trying to discover or make progress on what it is they are studying.

    In politics, there are frequent references to "useful idiots". The history of the CDC program demonstrates that such people have quite likely been assigned to the CFS program. They can't comprehend nor care about issues above their pay grade. They are happy to do nothing while making a nice government salary with nice benefits.
    Wayne and currer like this.
  6. Tito

    Tito Senior Member

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    If you are not a bully.
    But if you are a bully, you choose option a) and you ridicule the victims.

    I personally think that was the sort of individual he was. Once I was bullied. I read quite a lot to understand what it was, the purpose of it, etc. From what I read about this man, he seems to fit the description. I was like you Cort trying to see the rational aspect of the facts (this is the characteristics of a non-bully) and then I understood : a bully is a person who enjoys his victim's suffering and the power he has on his/her victim, and that joy is more powerful that any medal, acolade he can get as a mediocre person ('those who can, do; those who can't, bully').
    Wayne likes this.
  7. MDL

    MDL

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    Hi Cort--How are you? How hot is it in San Miguel?
    You asked for suggestions. Perhaps you could join this thread with the one on the same subject about Dr. Reeves in General ME/CFS news. I'd also suggest you include the slides I posted in the CDC Resource Center. They give first-hand information about how this disease was approached by the CDC under Dr. Reeves.
  8. caledonia

    caledonia

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    I don't necessarily believe in conspiracies, but there is evidence of collusion with disability insurance companies over the selection of the name "chronic fatigue sydrome" (see Osler's Web). Making the illness psychological means they can deny benefits or cut off benefits after two years. This saves them from having to pay benefits to the fastest growing category of illness, which usually lasts for a lifetime - a huge cost savings.

    Assuming methylation is the root cause of ME/CFS, nobody could have figured this out before the human genome project was completed in 2003. Even now, it's a science which is in it's infancy, and this explanation seems to be involved, but is not a sure thing.

    So this essentially leaves the CDC with no explanation. They are not going to admit they have no idea. They have their egos to protect, and they want to continue to have a job and milk it as long as they can. So they glom onto the nearest reasonable explanation - it's psychological. The psychological angle has been used for many physical diseases in the past, including MS and autism. This is a well-worn path. And, as explained above, for their own greedy reasons, the insurance companies, who apparently have influence over the CDC, would also like it to be known as psychological.

    This is still no excuse for making fun of patients. Even mentally ill patients deserve to be treated with respect. I think "bully" is a good word for Reeves and why patients dislike him so much. His policies have also lead to patients being bullied by their physicians, friends and families.
    GracieJ, ahimsa, currer and 4 others like this.
  9. Tito

    Tito Senior Member

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    As mentioned before, I think we need to clearly identify two things:
    1. ME as an illness. Reeves was unable to help. He was incompetent. Okay.
    2. The mental (sometimes physical) abuse we've had to endure for years, because of what he said. I won't speak for others, but for me, that constant abuse led to a decrease of my quality of life at least similar to the illness itself. I think it's Dr Bell who once said that the majority of his patients were suffering of post traumatic stress disorder. It is appalling and it was entirely avoidable. We would not be cured from ME but we would have a better life without Reeves & co. This, more than anything else, pisses me off (sorry for the language but I don't know how to phrase this differently).
    GracieJ and currer like this.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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       I agree with everyone save except Cort.

    Cort,

    I was a psych major at Brown. OK, I'll wait for the laughter to die down...
    OK, so I'm not an expert, but I do know from trying psychological legal cases such as abuse and neglect and mental health incarceration cases that there are such things as bullies and antisocial/sociopathic people out there and not all of them are in prison where they should be. Most people who have anti-social personality disorder and are born into poor families wind up in prison. Most who are born into upper-middle class families manage to eke out a somewhat successful business or political career.

    the DSM-IV "clinical" features of Antisocial Personality Disorder : one must at least three of these characteristics:

    1. Failure to conform to social norms;
    2. Deceitfulness, manipulativeness;
    3. Impulsivity, failure to plan ahead;
    4. Irritability, aggressiveness;
    5. Reckless disregard for the safety of self or others;
    6. Consistent irresponsibility;
    7. Lack of remorse after having hurt, mistreated, or stolen from another person

    Dr. Reeves easily meets these criteria.

    Of course, as we all well know, such constructs as criteria for mental illness are not written in stone and are only, at best, approximations of the actual state of reality.

    My point is, as all of us know from living our lives, that bullies exist. Most people are not bullies and most scientists have noble and Nobel motivations, but when you see someone (eg Dr. Reeves) bullying someone else (us) he is probably a bully. A bully may value and enjoy tormenting others more than he does receiving academic or professional honors. The schoolyard bully spends time attacking others rather than doing homework. And Dr. Reeves spent more time tormenting us than laboring in the lab to win the Nobel prize.

    Bullies gravitate to jobs where they can bully people. We were and are sitting ducks because it is hard for us to fight back. I would speculate- and this part is of course speculation- that he relished how some of us, though no fault of our own, developed a kind of Helsinki syndrome where we tried to rationalize the actions of our abusers since we are to a great extent dependent on them (eg abusive parents or CDC whom we are dependent on for validation that we have a real disease and for their role in educating doctors and the public about our disease, as well as the research they do). We may not want to admit even to ourselves that we have been abused, because it is painful to do so. No one wants to feel like a victim. We also may not want to anger our abuses by speaking out about the abuse, if we are dependent on them because things may temporarily get worse. But pls remember that in the long run things get better.

    Ok the above may sound patronizing. I think we can all relate to a feeling of frustration when family members or doctors have sat us down and tried to get us to have a positive attitude and not focus on the "possibility" or "false cognition" that we are physically sick. So, of course, I don't know what is going on inside someone else's head. My guesses about what is going on inside the heads of those who feel Reeves and CDC are just mediocre or incompetent are just that, guesses. Maybe I shouldn't conjecture about such things. Just know I am really am not trying to be rude to anyone who thinks this. Sorry if anyone is offended.

    What I do know for sure is that reeves and especially Unger are bright people. Again it is implausible that they simply have a different innocently erroneous theory about what CFS is. It is very clear to anyone who has looked into it as long as they have that it is a specific neuroimmune disease, not hysteria, not any other psychological disorder, and not simply the low end of the spectrum of tiredness and functionality (which is the reeves definition). It is abundantly clear that Reeves, Unger and the Wessely school know exactly what they are doing.
    xrayspex, Roy S, currer and 4 others like this.
  11. Dreambirdie

    Dreambirdie work in progress

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    Hey Justin--You are a man after my own heart. ;) I have a psychology background too, and was thinking along the same lines as you in regard to Reeves psychopathology. I would speculate that some of his bully-like behavior patterns could certainly be indicative of someone with a Cluster B personality disorder, as most abusers, bullies, and criminals have traits from those criteria.... especially the narcissists and sociopaths. And there is NO shortage of either types in the business world, the government, the medical profession, and in positions of power in general.

    It's interesting that you suspect Reeves to be a sociopath. Maybe..? But because he seemed to have a great concern for his image (as evidenced by his actions to become a whistle blower in order to save his own skin), as well as a grandiose sense of self-importance and entitlement, I would think he could be a narcissist. NPD is certainly a possibility. A lack of empathy is a trait of both disorders, so who knows...? One thing's for sure, Reeves was seriously lacking in the ability to reflect on his behavior, to admit when he was wrong, or to show any remorse about the hideous effects his actions had on such a huge population of very sick people. That's common to many with PDs.

    I also don't believe for a second that Reeves was incompetent. Just seriously flawed in character, and harmful to many because of it.

    Narcissistic personality disorder (NPD)
    1. Has a grandiose sense of self-importance (e.g., exaggerates achievements and talents, expects to be recognized as superior without commensurate achievements)
    1. Is preoccupied with fantasies of unlimited success, power, brilliance, beauty, or ideal love
    2. Believes that he or she is "special" and unique and can only be understood by, or should associate with, other special or high-status people (or institutions)
    3. Requires excessive admiration
    4. Has a sense of entitlement, i.e., unreasonable expectations of especially favorable treatment or automatic compliance with his or her expectations
    5. Is interpersonally exploitative, i.e., takes advantage of others to achieve his or her own ends
    6. Lacks empathy: is unwilling to recognize or identify with the feelings and needs of others
    7. Is often envious of others or believes others are envious of him or her
    8. Shows arrogant, haughty behavior or attitudes.
    xrayspex likes this.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    As for my saying their mission is to crush us: what I really mean is that their main mission is to disappear ME, to make it seem like it doesn't exist as a discrete serious disease. They seek to crush us, so that we can't make the reality widely known.

    Why? one reason we know for sure is in order to cover up their past misfeasance and nonfeasance re ME. Once they had misappropriated the ME budget and lied about it to Congress the first year, they couldn't go back and admit that ME is a serious physical disease, because then they would get in trouble. Things then snowballed from there. As the misdeeds and lies mounte, the stakes have grown ever higher, making it more necessary to continue the deception.

    There are other, additional plausible motivations. These include:
    1) cruelty, sadism and similar mental problems of CDC investigators, (and the related, historically more adaptive, natural desire of society to marginalize the chronically ill in order to avoid spending a lot of resources on us)
    2) sexism,
    3) a desire to satisfy health insurers including the biggest one in the world, HHS (Medicare, Medicaid, VA benefits etc), the same department that houses CDC and NIH,
    4) a possible desire to prevent some fact or facts coming to light, such as perhaps that vaccines may be involved, or that the government somehow otherwise contributed to the genesis or spread of the disease, etc, etc

    There are probably others that we can identify.

    I don't know why Unger is basically continuing on with Reeves program other than some minor positive changes. She seems like a very bright, competent scientist. She made the connection between HPV and cancer, I think. This makes me think that a lot of the impetus for CDCs method of operation re ME I s coming from above, that her career would be in substantial danger were she to do her job in a bona fide manner.
    xrayspex and currer like this.
  13. Esther12

    Esther12 Senior Member

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    I've not been able t keep up with this thread, but I think that a lot of the work around personality disorders is pretty weak, and the idea of diagnosing someone one has never met is a prime example of how they can be used to lend a false aura of legitimacy to personal and political attacks.

    I'm sure people could read this thread and then start claiming it indicates CFS patients have certain abnormal personalities or mental health problems... and it would be quackery.

    (This sounds harsher than I mean to be. Sorry about that! As chatty speculation, I know this sort of thing can be fun... but it just reminds me of the sort of things I dislike about how others treat CFS patients.)
    Firestormm likes this.
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I don't know enough about the topic to assess the science or lack of it behind the constructs of personality disorders.

    My point is we all know that
    1) some people act from immoral motives.
    2) William Reeves was one despite being a scientist working for the government.
    It seems Cort does not agree. I find it bizarre at this point to have to argue about such obvious points.
  15. Sing

    Sing Senior Member

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    One thing I wonder about is what the legal liabilities of the CDC or individuals therein, might be, were they to "admit" or reveal their malfeasance. My guess about them is that the glacial pace of their progress in a scientific direction, with regard to ME/CFS, has to do with this--how they don't want to create any clear distinctions or demarcations that anyone could draw which could have legal consequences between their policies and what becomes seen as valid. Am I being clear?

    In other words, it isn't safe for them to say, "Oh sure, we've been wrong. Let's correct that and begin by changing the case definition and name immediately, then admit the validity of the research which has already been done, and pursue more right where it leaves off." No, they have to be obscure, indirect, tangential and pursue yet more irrelevant work--albeit in the realm of genetic minutiae and the like, rather than psychiatric ones, while creeping at an absolute snail's pace towards a different approach to our illness (if, indeed, they ever get there).That is my impression. I see them as involved in a a rear-guard, face-saving operation, which is about more than prestige, it may very much be about legal liability. Anybody who knows the applicable laws want to comment? Bring in the lawyers!
    WillowJ, xrayspex and currer like this.
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Sing,

    Yeah, I basically agree. You know, I don't know exactly what liability would "attach" to whom under what law. Generally the government is immune except for under the federal tort claims act. I don't know if it would apply here.

    But, yes generally, if you can "manufacture doubt" about what you don't want people to know, then you are 95% to where you want to be if you are a shady businessman, politician, insurance company or viral exanthems researcher. Their whole job now is manufacturing doubt about "CFS". If they can muddy the waters then no one can say you have definitely abused your office and hurt people and so youre fired, or you are guilty beyond a reasonable doubt, or you have to pay damages to those you hurt (or if you are an insurer- "you have to pay for treatment").
    Sing and currer like this.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Sing,

    Yeah, I basically agree. You know, I don't know exactly what liability would "attach" to whom under what law. Generally the government is immune except for under the federal tort claims act. I don't know if it would apply here.

    But, yes generally, if you can "manufacture doubt" about what you don't want people to know, then you are 95% to where you want to be if you are a shady businessman, politician, insurance company or viral exanthems researcher. Their whole job now is manufacturing doubt about "CFS". If they can muddy the waters then no one can say you have definitely abused your office and hurt people and so youre fired, or you are guilty beyond a reasonable doubt, or you have to pay damages to those you hurt (or if you are an insurer- "you have to pay for treatment").
    Sing likes this.
  18. Wayne

    Wayne Senior Member

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    I don't have a lot of energy tonight, but thought I would mention just a couple of things.

    1) I've long thought that the CDC felt a MAJOR embarrassment when they were forced to admit back in the '80s that they were wrong on CEBV being the cause of CFS. So much that followed that was so detrimental to pwCFS resulted from that early CDC mistake, with a lot of it feeling to me like retribution.

    2) If during Reeves' tenure at theCDC, he would have just gone in and sat in a closet doing nothing all day, we would all be far better off today. But I suspect Reeves was just a product of the CDC attitude toward us back then. And if he hadn't done what he did, the CDC would likely have found somebody else who would generally have done pretty much the same thing.
  19. MishMash

    MishMash *****

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    Who did more damage to the CFS effort: Stephan Straus or Reeves? Straus was at NIH and headed up the CFS research effort in the nineties. After deciding that he was not going to be the next Anthony Fauci, and get a Nobel Prize, for discovery of "extreme EBV infection" as a source of CFS, he effectively checked out. And decided it was all in our heads and washed his hands of us.

    At that time, I think NIH had more gravitas as a medical adjudicator than the CDC. As I have mentioned before, the CDC is primarily geared toward simple epidemiological analyses. "Okay, everbody, make sure you get your flu shots. Make sure you use sun block." etc etc. They are bureaucrats first, doctors and scientists second. All you have to do is look at that absurd "Toolkit". If you can possibly manage it: ignore the CDC.

    As for Straus, his peers at NIH thought he was the bees knees. Fauci wrote his obituary. Everybody said he was the very paradigm of the "good scientist", highly intelligent, and a real humanitarian. Such a nice guy, kicking us to the curb. I think this speaks to the nature of medical education in the country, which highly emphasizes mutual competition, and avoidance of looking stupid or powerless at all costs. An MS patient friend of mine said that in 1994 a disbelieving neurologist at Georgetown dragged her down the hall, when she could barely walk, scolding her for malingering. MRIs became widespread right about then, and the neurologist later claimed "he knew all along" she had MS. Doctors wonder why they become unpopular with the patients.

    The same ambition that drives a Straus or a Reeves to become a "respected physician" first, then head of *something* (god help us) in the medical bureaucracy also gives them the callousness to step on PWCs without a care in the world. Getting those high MCAT scores and getting that A in Organic chemistry means you must know everything. It's the patient to be blamed if he can't be cured. PWCs, for now anyway, I say get your own playbook and work the system to your benefit, cos even now very few docs are going to take you any more seriously than Reeves or Straus.
    xrayspex, camas, Wayne and 1 other person like this.
  20. Ember

    Ember Senior Member

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    Wouldn't Dr. Reeves' program, implemented without the obvious mistakes, be worse for us?

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