Hillary Johnson's new blogpost April 3rd 2010

Kati

Patient in training
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Wow, that was heavy duty. I had to slow my reading right down in order to take in each words. Well done Hillary.
 

Navid

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wowza!!!!!

what a kick-ass writer

what a despicable little man

what a disgusting tragedy

thank you hillary for shining the light into the dark once again!!!!!
 

IntuneJune

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She came out swinging

Wow, she certainly came out swinging.

There are so many players in the game. I do want to understand how a federal agency whose mission it is to protect the American health could smother progress so.

And with the impending increase of health care costs in the future coming from the federal government, I am more worried, not just for our community's issues, but everyone.

June
 

IntuneJune

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Even though this is Easter Sunday and many active posters are engaged in other wonderful activities, I did think folks would be all over this thread!

June
 
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Here are some of the key points I knew nothing about before this article:

1. That these excellent research papers came out so long ago:

Buchwald,Komaroff, Cheney, Peterson et.al., “A Chronic Illness Characterized by Fatigue, Neurologic and Immunologic Disorders, And Active Human Herpesvirus Type 6 Infection,” Annals of Internal Medicine 116 (Jan. 15, 1992): 103-13.

And: Klimas et. al., "Immunologic Abnormalities in Chronic Fatigue Syndrome," Journal of Clinical Microbiology (June 1990): 1403-10.

Certainly, his attack dog response to the 1992 Annals of Internal Medicine paper on the disease stands out as perhaps Reeves’ first foray into the politics of destruction, especially considering the way this major research paper might have advanced the science of the disease down the court had it been allowed to stand unmolested by the CDC. One could say Reeves’ reaction to it was a point of demarcation and the beginning of the “Reeves era” in Atlanta. For anyone who was paying attention, it signaled that, rather than improve, the agency’s handling of the “cfs” epidemic was going to get worse.

The paper by Komaroff, Cheney, Peterson, et. al. was perhaps the best clinical research paper ever published about “cfs.” (Nancy Klimas’ June 1990 study of NK cell aberrations in “cfs” in the Journal of Clinical Microbiology, in which she posited that the array of immune defects she observed in patients “suggest CFS is a form of acquired immunodeficiency,” was perhaps the second most important. Unlike the Annals paper, however, Kilmas' study was ignored by the lay press, and maybe that's why Reeves ignored it, too.) The Annals authors, many of whom had worked to collect and analyze the data for more than five years, famously described the disease in 259 patients, still the largest cohort ever studied scientifically, as a “ chronic, immunologically mediated inflammatory process of the central nervous system.” They also wrote: “Enough cases occurred among family members, co-workers, and other close contacts to suggest the possibility of an infectious agent transmissible by casual contact.” [Buchwald et.al., “A Chronic Illness Characterized by Fatigue, Neurologic and Immunologic Disorders, And Active Human Herpesvirus Type 6 Infection,” Annals of Internal Medicine 116 (Jan. 15, 1992): 103-13. And: Klimas et. al., "Immunologic Abnormalities in Chronic Fatigue Syndrome," Journal of Clinical Microbiology (June 1990): 1403-10.]
2. To think that Reeves isn't the big monster; he's just a "hand puppet" of those above him setting policy

Certainly, when someone so callous, so indifferent to the facts of science, seems to be in control of a potentially fatal disease afflicting millions of people, he will tend to loom large and appear to be powerful. And yet, as a friend of mine commented on hearing the news of his new posting, “Another hand puppet bites the dust. Until we know what the game was we'll never fully understand any of these moves on the board.” The point being: as principal investigator, Bill Reeves was the front man for the Centers for Disease Control’s loony, wasteful and destructive policies on “cfs,” but to think he was acting without some degree of supervision is probably a mistake. In 1998, the misuse of the research money had the tacit, if not formal, approval of his superiors, for instance, and was even defended in the press by CDC director Jeffrey Koplan at the time.
3. I skipped quotes on Reeves involvement with stealing millions, then becoming a whistle-blower to stay in his job.

4. The idea that ME/CFS needs its own department, like HIV/AIDS

As Reeves’ predecessor, Walter Gunn, told me more than twenty years ago, “Chronic fatigue syndrome needs its own division at the agency, just like HIV-AIDS.” It’s possible that only unless or until that happens can the Centers for Disease Control ever be accused of taking this disease seriously
5. Hadn't put 2 and 2 together that the CDC did present on XMRV at the CROI , but only on prostate cancer, not ME/CFS.

I found it notable that at the recent Conference on Retroviral Infection in San Francisco, the CDC's retrovirologist Walid Heneine presented the agency's XMRV findings in prostate cancer patients--(two positives out of 162 patients). Obviously, CDC's investigators believe they've got a reliable XMRV test, yet they failed to offer a scintilla about what they've found in CFS patients. Make of that what you will.
6. To start looking for who the puppet masters are, like a mid-level one, Anthony Fauci, the director of the National Institute of Allergy and Infectious Disease at NIH, and trying to work on that level or higher.

Lastly, if Reeves, however colorful, was little more than a functionary who successfully implemented a money-saving, face-saving, ideological policy on behalf of his institution, there is someone else patients seem oddly oblivious to, someone who--in marked contrast--has alone been remarkably influential in keeping “cfs” a largely unexamined, unresearched public health crisis. Anthony Fauci, the diminutive director of the National Institute of Allergy and Infectious Disease at NIH, is not a functionary. Fauci has maintained that post through five American presidencies, beginning with Ronald Reagan. His power largely accrues from his status as the American “AIDS Czar” and his institute has been the beneficiary of hundreds of billions of dollars worth of HIV funding from Congress. One National Cancer Institute scientist has accused Napoleon of having a “Fauci complex.” It was Fauci who personally persuaded Harold Varmus, then director of the NIH, to send “cfs” to the Office of Research on Women’s Health eleven years ago. (A note on Harold Varmus: Though he has been president of the Memorial Sloan Kettering Cancer Center for the last decade, Varmus is rumored to be named head of the National Cancer Institute by the Obama White House, replacing John Niederhuber, who has held the job for just three years.)
And, finally, a reminder that the new director of the CDC seems like one of the "good guys", and that we really have an opportunity here to get him to straighten things out.

If the new director Tom Frieden has any smarts--and given his performance as health commissioner of New York City, he has--then he is probably waking up to the fact that the agency is going to have to get back into the business of preventing and controlling infectious diseases. One can imagine the scene where Frieden was briefed on the agency's handling of "cfs" for the last 25 years:

Frieden, after a lengthy pause: "This is a joke, right? You are making this up?"

Functionary: "No, sir. We really did make them fill out a psychiatric questionnaire about their bed wetting histories as children."

Frieden: "And when the doctors in Nevada called you in 1986 to tell you about the lymphoma outbreak, and the MRI brain scan abnormalities--you decided not to investigate further because.....?"

Functionary: "Well, they were saying we did a lousy job and bad mouthing us in the press and we just didn't feel we could go back."

Frieden: "And in 1991 when the Wistar Institute invited you to Philadelphia to learn their techniques for isolating a retrovirus in chronic fatigue syndrome you refused the invitation because...?"

Functionary: "We decided we didn't have plane fare in the budget to send a virologist all the way from Atlanta to Philadelphia."
 

fred

The game is afoot
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"It’s interesting that the generals in this war, with some exceptions, have tended to be weasely, over-compensating men, here and in the UK."

My emphasis.

Who can she mean?
 

oerganix

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http://oslersweb.com/blog.htm?post=660837

Am in the middle of reading Hillary's new post but wanted to share it before I finished. She's back!!!
Thanks for posting this. I've really missed her perspective. Nothing ambiguous about her!

And, interestingly, Dr Vernon was there at CDC, putting her name on Reeves's papers, etc., for most of those years. Now she's at CAA and criticizing WPI....and defending the Dutch/Wessely clones for using the Oxford definition.
 

Roy S

former DC ME/CFS lobbyist
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It's great to see Hillary post a blog again. She didn't write much about the CAA and went very easy on them, and I'll bet it's because Cort has slammed her so much. No doubt she knows more than she wrote about and I'd like to know it. She even named Cort on her page about plagiarism and copyright violation.
http://oslersweb.com/work1.htm






 

gracenote

All shall be well . . .
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It's great to see Hillary post a blog again. She didn't write much about the CAA and went very easy on them . . .
Roy,

I think that's because this is an article about Reeves. It's titled: A Handpuppet Bites the Dust: A Chronicle in Eight Parts.
 

MEKoan

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I truly don't know what the landscape of this illness would look like without her but it would be bleak and it's not exactly a pretty vista as it is!

Once again...

thank you Hillary Johnson

for continuing to tell it like it is.
 
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Does anyone else think she has been behind the scenes gathering new info on the CFS story, perhaps we are about to get the next chapter.
 

Hope123

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Want to make that conversation with Dr. Frieden about CFS become reality? Write the federal CFS advisory committee addressed to Dr. Wanda Jones at cfsac@hhs.gov. Ask Dr. Jones if the committee can invite Dr. Frieden to the meeting May 10.