Tuesday, February 22, 2011


Stop hunting the puppets.
Hunt the puppet master.

“Nationwide—my God, they were frightened of Muskie and look who got destroyed.  They wanted to run against McGovern, and look who they're running against. They bugged, they followed people, false press leaks, fake letters, they canceled Democratic campaign rallies, they investigated Democratic private lives, they planted spies, stole documents, on and on.  Don't tell me you think this was all the work of little Don Segretti.”
  —Deep Throat to Washington Post reporter Bob Woodwood in All the President’s Men 
on why Nixon and his top aides were the Watergate masterminds, not lawyer Don Segretti, 
a foot soldier for the Committee to Re-Elect.

Frequently, I get emails from patients asking my advice on whom they should target in their protests, and I always say the same thing:  the higher up the better.  For instance, tremulous Dr. Beth Unger, who heads up “CFS” research at the Centers for Disease Control, has about as much power as the popcorn girl at my neighborhood movie theater.  In my view, pleading with Unger will have as much effect on ME/CFS policy as playing Barbies will have on instilling world peace.

To change anything, it's my view that you have to change the mindset of the people in charge and forget about the mid-level sump-pump bureaucrats with their cheap brown suits and Payless shoes who do as they're told.  And stop trying to make anybody in the government like you, like something out of Sally Field's "you like me" Oscar acceptance speech for Places in the Heart (watch it at the end of this post).

Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health (NIH), would be number one on the list of targets. He's incredibly powerful.  If ME/CFS patients could cause him enough grief, maybe the 70-year-old Fauci will cry uncle or just drop dead.

Fauci has been firmly in the psychobabble CFS camp for more than 20 years.  As evidence, on July 28, 1988, New York Times health reporter Jane Brody interviewed Dr. Stephen Straus, who headed up psychological CFS research at the NIH until his death in 2007.  Brody wrote that Straus said he and "his colleagues at the National Institutes of Health had demonstrated that many patients were psychologically 'different' long before they developed the syndrome. He described some patients as having been anxious and depressed with various neurotic symptoms for years before becoming ill. In other cases, patients were motivated, dynamic, driven individuals who were functioning at peak levels when stricken. Some may be under an undue amount of stress trying to maintain busy lives."

What does this have to do with Fauci?  After the piece appeared, journalist Hillary Johnson reported in Osler's Web and later on her blog that a dentist stricken with ME/CFS wrote an irate letter to Fauci, demanding that Straus be fired from the NIH because of his false statements to the press.

According to Johnson, Fauci responded to the dentist with a cordial letter that invoked the name Dr. Peter Manu, who agreed with Straus that neuroses and stress caused the disease. Fauci’s letter delivered Manu’s stinging supposition that 50 percent of CFS patients had an underlying mental illness and, Johnson wrote, Fauci provided the journal citation for that statistic and signed his “best regards.”
So when people ask why British retrovirologist and Simon Wessely colleague Dr. Myra McClure was appointed to the Center for Scientific Review Special Emphasis Panel, which approves NIH grants for ME/CFS, there is, ultimately, one reason why:  Anthony Fauci. 

Force Fauci to change his mindset about ME/CFS, and like a flip of a switch, the energy changes.  That's when quavering Beth Unger—and the rest of them—will see ME/CFS for the serious and sometimes fatal neuroimmune disease that it really is.  And that's not because Unger will have had a change of heart. It'll be because like all good government foot soldiers, she'll do as she's told.


  1. How much would a hit cost?

  2. I agree with approaching upper management in government with a ground swell of patient protest. It would be nice if ME scientific and professional communities would come on board and collaberate though. Maybe the lack of leadership in activism at top levels of government can be added to protest against CAA circulating on the internet??

    Perhaps the WPI represented by Annette Whittemore might consider activism with patients. I understand the need for WPI to distance themselves from poltics, but it would be great to have the clinic's founder direct support. Collaberation may be the key to turingin things around.

  3. Thank you, Mindy. You are saying what needs to be said. I think you are right about Fauci being the puppetmaster, and dealing with all the other people is simply distraction.

    Patricia Carter

  4. Your idea to go to the top is great. I'm skeptical that patient protests are going to change minds, but maybe they can help to change policy. Enlisting the aid our Congressmen/women may be one of the most effective ways, as they hold the purse strings.

  5. i agree that the higher up the better. to me that means congress. i don't fauci is going to change his mind at this point. though he did change his attitude or at least behavior toward AIDS after ACT UP protested at NIH. So i think ACTING UP, bothering him and embarassing him and the govt in public while lobbying congress is what we should be doing now.

    thanks, Mindy.

  6. My #1 target is the CDC website. If the CDC promoted a biomedical basis, we would have everything we need - validation, respect, brochure material, public relations to the world and to our docs and families, funding based on CDC criteria, physician education, etc. And it would work worldwide, as the world looks to this authority.

    We need a reversal at NIH, too, of course, but how long is Fauci going to be there? We need a protest today at the NIH meeting where Gill is going to tell the next generation at NIH that we are lazy and crazy. We have got to show our objection in ways that will shut him up. He got some emails yesterday, but the shrinks just use them as proof that we have false beliefs.

    And don't waste time stoning them to death with more popcorn (paper). We must ACT UP with embarrassing media events that will produce uncomfortable consequences to them. We must learn to attack rather than respond. I wish someone would convince Larry Kramer to lead us, as we must find healthy people to carry it through.

  7. I agree wholeheartedly, Mindy and you reminded me of something...

    Didn't Collins DIRECT Fauci to head up the effort to get Lipkin involved and get those 100 samples sent around for testing at four different labs? Seems to me, Fauci's boss is the person to target, as he can tell Fauci to either get to the root of this problem our retire. It's time for him to retire, long past, isn't it? I'm sure there are plenty to take his place.

    It's hopeful that Lipkin and Mikovits will be speaking together at that meeting (which one? Can't remember? Apr 7-8? Today?) I would bet money that Lipkin has been "converted" by Judy after he visited her lab.

    A major reason to meet with Unger is to get it on the record: the record will be important when the Congressional Hearing happens. One cannot make charges and prove them without a record. Also, when any of these buffoons who "shrink" us makes a mistake, we can capitalize on it royally.

    Thanks so much for all your hard work. I am so grateful to all you bloggers who keep us on track and in the fray with your inspirational and instructive posts. Onward...and, as you say, Upward!

  8. While the sentiment is understandable, I disagree with the language used.

  9. Yes, you go for those at the top, but they derive much of their power from those down the chain and others who entrust them. The more an operation is bogged down, the lower that trust becomes, the more they become a liability.

    We shouldn't expect Fauci or Collins to easily flip a switch either. If Fauci let ACT UP change the way DHHS dealt with HIV, why hasn't the lesson carried over? There are rea$on$ they act as they do, and are hardly alone at the top. That doesn't mean we don't try, up and down and around the whole apparatus.

  10. we will never ever change their attitudes...the only way doctors and scientists start to believe in the illness is when they start getting the symptoms...then they become world class researchers...it happens all the time... www.watercure.com and www.watercure2.org is everyone's only hope...defy all of them and stop taking their useless toxic medications and get well naturally...if everyone put these idiots out of business and stopped buying their useless meds it will put them completely out of business...there is over 20 years of watercure research by dr.b and some very overwhelming science...stop buying their drugs and let the world know about watercure and that will send useless 'fucky'fauci to his grave...

  11. Fauci has a terrible history when it comes to retroviruses. He was one of the voices at the NIH strongly in opposition of anti-retroviral treatment trials for HIV. Too dangerous, he said, whilst people were dropping dead.

    I suspect that we'll very likely see more of the same in regards to XMRV.

    I trust him half as far as I can fling him and given my current levels of PEM that's not very far.

  12. www.facebook.com/shelleysf8February 22, 2011 at 8:25 PM

    ACTUP? i'm ready, even if it results in my death - it's coming anyway and i'd rather die helping this cause. again - i think we need to set a date and begin working towards civil action; while some are targeting dc, we can also target local state capitals - something, anything, so when they succeed in bringing about my death, it makes a difference. the press is picking up what they're being told to pick up - all the stories planted casting doubt on a cause for cfs, and backing behavior modification and exercise. get and pace will kill us for sure.

  13. i've been thinking about "act up me" for a while now, years. originally, i didn't think we could do it; now i don't think we can't. many of us have friends and family who have seen and heard enough and are as angry as we are.

    like anonymous above, while i understand the anger, i too take exception to some of the language, which comes across as tea partyish. it's your blog, of course, and bloggers are free! but i was a government worker, a claims adjudicator for the va, when i got sick with me and had to retire, and i never worked so hard in all my life. it's the people at the top who set policy and make everyone's life miserable, including "mid-level sump-pump bureaucrats with their cheap brown suits and Payless shoes who do as they're told". (i was more the goodwill designer-label bureaucrat who argued with my superiors for better service to our clients.) at the top, it's politics as usual, where everyone knows everyone else and pats each other on the back.

    other than that, it's all good. i'm ready to act up to the best of my ability. (still the rabble rouser!) :>>)) ~laura tattoo

  14. rea$on$

    YES. No matter what, it is about money and as long as we keep quiet, we are invisible.
    THANKS, Mindi

  15. I don't think you can ever change a mindset. To me,Political Action is not about changing a mindset; but rather about getting funding to get us tested, diagnosed and treated.

    I believe these folks ALREADY KNOW exactly what XMRV is and that it exists. They already KNOW it is insidious and that the horror of XMRV plus HHV-6 plus other pathogens has reached a pandemic stage.

    This issue will only be funded with Political Action, not with "making someone understand." (BTW...Who already understands but is pretending not to.)

    Political Action =
    1)Grassroots Advocacy
    2)On The Streets Campaigning
    3)Political Power (Lobbying, Ballott Measures, Legislation).

  16. Cui bono? Who benefits? Those who benefit the most from psychologizing a viral illness are the disability insurance premium collectors and reinsurers. Unum and MetLife are the two worst abusers of disability claimants. They do many of the things quoted from Deep Throat at the top of this post.

    See this court case of a CFS patient who had the money to fight and win: http://scholar.google.com/scholar_case?case=3736254457285322723&hl=en&as_sdt=2&as_vis=1&oi=scholar

    The judge's list of 13 illegal tactics these disability insurers use against the disabled is particularly chilling.

    If you watch for them, you will encounter little references to disability claims, little slips of the tongue from health bureaucrats in the US. It is already known that Unum is paid to "advise" the Dept of Works and Pensions, similar to the SSA, to "limit liability", a code word for deny claims for disability in UK. Wessely, Sharpe and the other UK psychobabblers are all in the fold for the insurance industry. They speak at conferences and "teach" at the Unum-financed college of "psychosomatic medicine" at Cardiff College. Their stated goals in UK include "reeducation" of those physicians who agree a claimant is disabled. In the US, they have the policy, revealed by those who have worked for them, to harass doctors until they drop patients with disability insurance.

    Click "The Money Trail" here for more: http://mysite.verizon.net/vze16suma/id7.html

    I agree we need to avoid hunting the puppets and get the puppet masters. I believe the puppet masters are the disability insurance companies. See the blog of a fomer Unum claims adjuster who now works for claimants: http://lindanee.wordpress.com/2011/02/27/whats-unum-up-to-now-a-new-mantra-again/


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