The Bill Reeves thread

Cort

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CDC Grows More Isolated

Its seems that the CDC has figured this disease out. How else to explain their absence at the 3-day CAA/NIH sponsored brainstorming session recently held at Cold Harbor (From Infection to Neurometabolism: a Nexus for CFS). Thirty researchers from across the US and Canada were there but not one showed up from the biggest CFS team- not one.

This wasnt how it was supposed to be. Just 6 months ago Dr. Reeves was raked over the coals by the CFIDs Association of America, the IACFS/ME and the CFSAC for his inability to play well with others. In May, sitting before the federal advisory committee on CFS (CFSAC )(and his boss) Dr. Reeves acknowledged hed done a lousy job of communicating and collaborating and promised to turn over a new leaf. Since then hes reneged on a promised summer International conference on ME/CFS management and didnt send a single of his investigators to the first ME/CFS brainstorming session in years.

Doesnt behavior like this raise a big red flag for CDC officials? Wasnt collaboration one of the key aspects of the new plan? Or has the CDC simply been blowing smoke throughout the review process? In the six months since the Dr. Reeves mea culpa the program has only gotten more isolated!

Personal Issues Trump Results - The CDC has attempted to paint the patient outrage at the CDCs simply as a campaign engineered by the CFIDs Association and Dr. Reeves animus towards the CAA is well known His unwillingness to send a single researcher to the Cold Harbor conference suggests thats its not about the patients or the disorder anymore; its about Dr. Reeves versus the CFIDs Association. Nobody said it would be easy for Dr. Reeves to mend bridges . Nor did anyone say that Dr. Reeves, himself, had to appear at the meeting but not having anyone show up there is beyond the pale. This is the very opposite of the collaboration Dr. Reeves.

One has to ask what the point of a program review is if nothing changes. It appears that very little has altered at the CDC over the past 10 years . Back then CDC officials transferred (stole) funds earmarked for ME/CFS and used them for real diseases. Now theyre just ignoring the programs failures and cutting its budget; different process - same outcome!

A Slap in the Face
- Allowing Dr. Reeves to so quickly go back to business as usual is basically a slap in the face of both patients and researchers. The CDC is essentially saying we dont care about your protests, we dont care about the problems in this program - you can holler all you want - we really dont care.

Forcing Change - The ME/CFS Community will have to make the CDC care and they can; the CFSAC meeting on Oct 29th,30th will feature the top brass from the CDC , the unveiling of the CDCs plan and a concerted effort by patients, researchers and professional groups to exert change. Patients will be able to participate via e-mail, phoning in, video and by being there.

We particularly need patients to show up in this meeting en masse to protest that they wont stand for this. This is our last and best chance.

(A group called M.A.D. About ME/CFS has been formed to force change at the CFSAC meeting. To join the group register for the Phoenix Rising Forums (forums.ab outmecfs.org) and then click on the Community Tab and go to Social groups).
 

Andrew

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I used to work for a large public agency, and Reeves behavior does not surprise me. It is a standard method of operation for some administrators. They just do what they want, even if it make projects fail, and promise to change when called into meetings. Then they go right back to what they were doing before. Disciplining them does no good, because it's all part of the game to them. Reeves and his boss need to be fired.
 

Cort

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Thanks Andrew for your insight. I have this very sickly feeling that that's exactly what's happening. I talked to Reeves boss, Dr. Miller, about their underfunding the CFS program and he was very nice - very polite, very understanding - and nothing happens.

I think this is why we have to really embarrass them! Really put the stink on - I don't think there's any other way to make them change. They are never going to do anything substantial until we do. The flip side is that there's an enormous amount of federal funding for diseases out there; if we could just tap into a little bit of it - we'd have research all over the place:mad:
 

hvs

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I think both Andrew and Cort are correct.

1. Reeves's behavior is typical for anyone in a well-entrenched position in a bureaucracy. He knows exactly who and who cannot enforce consequences on him within the system. CFS patients and even the CFIDS Assoc. cannot, so he ignores them (and even flaunts his ignoring). The trick for us to identify the person or people who actually can move him out (or more likely laterally to another office).

2. After 2-3 decades of hearing it from the people he's failing (and, yes, injuring--because the longer you're sick with this the less likely you will recover) he is now more-or-less openly hostile to patients and practitioners.
 

Andrew

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The trick for us to identify the person or people who actually can move him out (or more likely laterally to another office).
I think that's an excellent idea. And if that person won't do it, identify who it is who can come down on that person.
 
A

Aftermath

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Dr. Reeves

I think both Andrew and Cort are correct.

1. Reeves's behavior is typical for anyone in a well-entrenched position in a bureaucracy. He knows exactly who and who cannot enforce consequences on him within the system. CFS patients and even the CFIDS Assoc. cannot, so he ignores them (and even flaunts his ignoring). The trick for us to identify the person or people who actually can move him out (or more likely laterally to another office).
Reeves is not just any bureaucrat.

As you may know, he got the credit (rightfully or not) for exposing the fraud at CDC where research money was diverted to other illnesses.

Because of this, he became eligible for "whistleblower" protection under federal law. Basically, this guy is untouchable right now. As Mary Schweitzer put it, this status is the equivalent of diplomatic license plates.

The guy is basically untouchable right now

Moreover, there seems to be some very credible evidence that he was not the whistleblower, but actually part of what was going on.

In any cause, it's pretty clear that the promises regarding collaboration were nothing more than lip service.

We are pretty much hosed for as long as this guy feels like staying.
 

Dolphin

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Reeves Must Go -Support the 500 Professionals of the IACFS/ME

"Reeves must go" seems a good catchy line for anyone who can protest, get stickers, etc

~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
>>>>> Help ME Circle <<<<
>>>> 25 October 2009 <<<<
Editorship : j.van.roijen@chello.nl
mail scanned by Comodo I. Security
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

From: RESCIND <rescindinc.org@gmail.com>

***Please distribute far and wide!***

Support the 500 Professionals of
the IACFS/ME - Reeves Must Go

On May 27th and May 28th, 2009, the Chronic
Fatigue Syndrome Advisory Committee (CFSAC)
convened in Washington, D.C. Among their
recommendations to the Secretary of Health and
Human Services was a call for new and progressive
leadership at the CDC's ME/CFS research division.

We, the public, need to back the IACFS/ME and the
CFSAC. Under Bill Reeves' regime, funding has
routinely decreased and increasingly broad
definitions which have ceased to have any clinical
meaning or research value have been implemented.

Under Reeves' direction the CFS program is being
slowly strangled.

A couple of weeks ago, Dr. Judy Mikovits, who is a
retrovirus expert at the Whittemore Peterson
Institute, released the results of a study which
provided overwhelming evidence that xenotropic
murine leukemia virus-related virus, or XMRV, could
very well be the third human retrovirus.

Mikovits found that in a study of 101 CFS patients,
67% were found to have XMRV in their cells, but this
is really not new news. In 1991 Dr. Elaine Defreitas
found retroviral DNA in 80% of her study's 30 CFS
patients. The CDC "replicated" her study, did not
follow her exact procedure, and ended the study
prematurely while ostracizing Defreitas.

What does Reeves say about Mikovits recent
discovery? Without doing any study or due diligence
Reeves dismisses the findings by saying that they
are "unexpected and surprising" and that it is
"almost unheard of to find an association of this
magnitude between an infectious agent and a
well-defined chronic disease, much less an illness
like CFS."

Deceit and incompetence have increasingly become
the order of the day. The money that Bill Reeves has
been receiving has been terribly mismanaged as he
desperately strives to forestall the slow but
inevitable pace of biomedical research.

Inappropriate management of funds prevents
collaboration with biomedical experts, as well as
collaboration with psychosocial experts who are not
trying to build a career in psychosomatic medicine.
Bill Reeves must be held accountable.

Inaccurate stereotypes persist because Bill Reeves
has not been accurately educating the public on the
seriousness of this disease.

CFS is not a disease of "feeling a little tired," no
matter what you call it; this is a severe neuro-
immune disease of among other things, debilitating
exhaustion completely out of proportion to exertion.
Patients may be too exhausted to even be able to
chew their food, leave their beds and much less even
work - and remain so year after year. Is that your
neighbor's experience of tired?

Perhaps you suffer from CFS, perhaps your patients
do, or perhaps a loved one does; your best interests
are not and have not been at the heart of the CDC's
program. What's at the heart of the program is job
security for Bill Reeves, his paycheck and
collaboration with his pals - not finding ways to
combat and track this horrible disease.

We need you now more than ever. Right now is the
first real chance that we have had in nearly 30 years
to fight Reeves in force; to fight for you, your loved
ones, or your patients. Everyone from researchers to
advocates are in agreement - Reeves must go. And
we must make it happen. No one will do it for us.

Join members of the IACFS/ME at the CFSAC's
October 29-30th meeting in Washington, D.C. Do not
let the hard work of other advocates and researchers
over the years be for nothing. We need to show that
we cannot be silenced and we will never give up.

If you cannot personally attend, find someone to
attend in your place. Ask your parents, your children,
your spouses or friends to attend in your place. Ask
your elected officials to have aids attend.

The answer is always no if you don't ask - we must
make it happen - none of us can live with the
alternative.

Reeves must go.

~~~~~~
 

Jerry S

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Amen! This guy has done enough damage. It's time for him to ride off into the sunset. I just hope he's not replaced by a clone.
 

Dolphin

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Amen! This guy has done enough damage. It's time for him to ride off into the sunset. I just hope he's not replaced by a clone.
James (Jim) Jones has similar views so I'd like to see him go also.

New people presumably wouldn't have existing regular contact with Peter White, Andrew Lloyd, Gijs Bleijenberg, etc.

And they'd have a hard time justifying the empirical definition.
So I think it would unlikely to be worse.
 

Andrew

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I'd like to see the CDC take a leadership role in getting the name changed. They are the ones who caused the "name" problem, and if they really cared about the well being of others, they would fix the problem they caused.
 

Dolphin

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I'd like to see the CDC take a leadership role in getting the name changed. They are the ones who caused the "name" problem, and if they really cared about the well being of others, they would fix the problem they caused.
That would be good. But if the current team were going to do that, they would probably have done it before the big media campaign over recent years.
 
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One of the most important reasons Reeves must go is the Reeves (2005) "empirical" definition. He's publishing research using this definition, even though it's unverified. The original paper introducing the definition is a scientific disgrace. Anyway there's still time before the CFSAC meeting (Oct. 29-30) to sign the petition against the Reeves definition. I sent out the following email to a number of friends & relatives and got 15 or 20 signatures. I added a personal note to each and then said:


By the way, I'm emailing everyone I can think of to see if anyone is willing to sign a petition about the definition of Chronic Fatigue Syndrome (which I, along with many other people, call Myalgic Encephalomyelitis or ME/CFS). It's a pretty esoteric thing to have to have a petition about, but, unfortunately, it's important. Basically, since there's now a lot of data about infectious and other possible causes for CFS, in 2005 Dr. Reeves of the CDC decided to redefine it (CFS) so it would better fit his theory of a psychological cause. Dastardly! Anyway, there's an online petition against the definition. It's a bit of a slog to get through: there's the petition, then there are references, then there's an explanation, then there are a bunch of additional notices, then there's the place where you "sign". They do want your email address, but you can check a box saying you don't want to be notified about any additional related petitions, and I've never been spammed by them to my knowledge. You can also check a box if you don't want your name showing up on the internet. It only takes a couple of minutes.

You may have heard about the new data that suggests that ME/CFS may be caused by a retrovirus called XMRV. Given that a retrovirus was suggested as the cause in the early 90's but rejected by the CDC, a lot of people think this is a good time to discuss why the science has been so bad. Hence, the petition. If you want more information before considering whether or not to sign, call, email or shout loudly and I'll be happy to explain further. If you know anyone else who might be willing to sign it'd be great to pass it along.

Here's the link: http://bit.ly/nYHy5



Please feel free to copy this statement, add to it, change it, use it in any way you want. But, if you can, please send it to anyone you think might sign. By the way, thanks to Tom Kindlon who wrote the petition, and no offense meant about it being a bit of a slog--it's a great petition with everything there people need. But it is an issue that's a bit difficult for people to understand if they're not directly affected by it. I just wanted to be sure people made it to the bottom and SIGNED.
 

Dolphin

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By the way, thanks to Tom Kindlon who wrote the petition, and no offense meant about it being a bit of a slog--it's a great petition with everything there people need. But it is an issue that's a bit difficult for people to understand if they're not directly affected by it. I just wanted to be sure people made it to the bottom and SIGNED.
Great work, the Phantom.

I'm quite happy for people to describe the petition and the page in derogatory terms if it helps gets signatures!

I even tried to make a virtue out of it in my written pieces to this and the last CFSAC meetings, saying it wasn't exactly a very exciting petition so I was pleased with the amount of signatures I got, etc.

I also deliberated tried to make it factual and not to personal so people could have few excuses for not signing it. There may be a place for a petition such as "Reeves must go" or whatever but some people including probably many PhDs/MDs might be reluctant to sign that. I didn't want to lose any of my audience with this one.

I was wondering whether to write to the CFSAC committee again before the next meeting - if I got 50 to 100 more I might do it (if it went over 2000 I would definitely do it). I did that last time when the number who had signed it jumped from 600-odd (when I sent in my testimony) to over 1000 i.e. I E-mailed all of the CFSAC members (except one whose address I couldn't find) to update them on the current total - they might not have got any other E-mails as their E-mail address aren't really given out (I just found them by searching). At the moment it has gone up from 1641 to 1745 but I'm not sure that is enough to justify another E-mail.
 
G

greybeh

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Bill Reeves - please give me background

I'm working my way through Osler's Web, but I've been wanting to get more educated about Bill Reeves so that I can speak out.

I did a websearch and found this fellow: http://www.universityofcalifornia.edu/senate/inmemoriam/williamreeves.htm

Sure seems like this could be his father.... So, did he inherit his father's job?

Help me understand what his role has been with relation to CFS, please.

I'm a fibro patient and I'm here to learn.
 
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Letter to CDC about Bill Reeves

Below is the text of the letter I sent to the head of the CDC. I did not state that I was a CFS patient. I instead tried to make the point that Reeves speaks for the CDC and his comments were not in the interest of the public health or of CFS patients and he should be severely disciplined (fired, crosses fingers) for his comments.

I am posting the text of my letter here in case others want a ready-made letter to the CDC that they can copy, paste into a word processor, edit or change, print out, sign, and mail.

My letter is far from perfect. Still I thought it might be helpful to others who want to do the same but don't have the energy to start from scratch.

-------------------------------------------------------------------------

xxxx (My Name)
..... (My Address)


November 10th 2009

Thomas R. Frieden, M.D., M.P.H.
Centers for Disease Control and Prevention
1600 Clifton Rd
Atlanta, GA 30333



Dear Dr. Frieden,



Bill Reeves should be severely disciplined for making ad hominem and dismissive comments to the media about the study linking the retrovirus XMRV to Chronic Fatigue Syndrome published on October 8th in the journal Science.



According to an article in the New York Times published on October 12th:

The study received a mixed review from Dr. William C. Reeves, who directs public health research on the syndrome at the Centers for Disease Control and Prevention. He called the research exciting but preliminary, and said he was surprised that a prestigious journal like Science had published it, because the researchers did not state the ages or sex of the patients and controls, or describe the duration of the illness or how it came on.

If I dont know the nature of the cases and controls, I cant interpret the findings, Dr. Reeves said.

We and others are looking at our own specimens and trying to confirm it, he said, adding, If we validate it, great. My expectation is that we will not.



Do you believe that Bill Reeves knows more than the editors and reviewers of Science about whether a study is valid, is worth publishing, and contains all relevant information? Why would the CDCs spokesperson on CFS state that he does not expect that he and his colleagues will be able to replicate the authors findings?

One can infer from Reeves comments that the CDC believes that the Science study is flawed. Is it your position therefore that CFS patients should continue donating blood despite this study? After reading Reeves comments, one can infer that the CDC sees no reason for CFS patients to stop donating blood if they are doing so.

Clearly, Reeves statements to the media were not made in the interest of public health or of CFS patients. I urge you to take strong disciplinary action against Bill Reeves.



Sincerely,




--- My name
 
K

_Kim_

Guest
Professor Reeves

It has been suggested to me as an alternative that Dr. Reeves should be offered a job in academia. If he can be kept away from students and serious research where he can do real harm, such as that he has done to us, then I think that would be a good idea.
Hey Wildaisy - I found this on a 2006 Conference Announcement and it looks like Reeves already IS in academia (god help those unfortunate students at Emory).

Dr. Reeves is currently Chief Viral Exanthems and Herpesvirus Branch for the CDC in Atlanta, GA. He is an adjunct professor of psychiatry at Emory University, a member of Winship Cancer Center at Emory, and a clinical assistant professor of gynecology and obstetrics at the Emory University School of Medicine. In 2003, Dr. Reeves was awarded the La Orden de Manuel Amador Guerrero Medal by the President of the Republic of Panama, the highest honor that Panama awards in the field of science. In 1995, he was elected as Fellow by the American Association for Advancement of Science for leading contributions to understanding the role of human papillomavirus in cervical cancer through international studies. Dr. Reeves's current interests include research of chronic viral diseases, primarily chronic fatigue syndrome (CFS) and diseases associated with human papillomavirus (HPV).
And for those who didn't see his MUPPET head on the other thread:
 
S

SDD1244

Guest

OK... not judging (well maybe I am), but the first impression I get when I see that scary photo of Dr. Reeves is that he looks like a very angry person. Perhaps he could use some counseling ? :D