Tuesday, November 11, 2008

CDC research funding scandal 2.0

Some of you ME/CFS readers might remember that ten years ago the Centers for Disease Control (CDC) got caught misusing money Congress had appropriated specifically for CFS research by using it for other diseases instead. At the time, CDC employee/CFS researcher Bill Reeves blew the whistle on his colleagues and went on to take the lead in CFS research, including reallocating the misspent money for the research it was intended.

But, alas, it is now Reeves who has been apparently caught misappropriating money. And this time, instead of the money going to other research, it's simply going to a pet contractor.

Kimberly McCleary, president of the CFIDS Association, testified (hat tip: Co-Cure) before the Department of Health Human Services CFS Advisory Committee at the end of last month about her outrage at having to confront serious funding issues at the CDC regarding CFS research yet again.

Based on information we have obtained directly from CDC officials (thank you to Sarah, Mike and Steve for the improved transparency over the past 5 months) and available on public information sites, the “boom” of CFS research that occurred during the “payback” phase from 1999-2005 has eroded to a “bust” of shameful scientific leadership, zero accountability, invisible outcomes and millions and millions of dollars stuck in suspended animation, if not wasted. At least in the 1998 scandal, science was being conducted that would aid discoveries in other diseases. This time, only the government contractors seem to be benefiting from millions spent for which there are no worthwhile outcomes for American taxpayers, or CFS patients.

Infuriating? Yes. I think many of us patients who have been following the current research at the CDC have felt like it was simply stagnating, and now we know why and how.

But I think there are a few hopeful things here. I've been glad to see the CFIDS Association back away from its relationship with the CDC in the last year and now forcefully and publicly confront it.

I also feel hopeful because last time the funding crisis brought an infusion of money into ME/CFS research, as well as a change in personnel. Reeves getting caught being naughty just might be the means of getting rid of him and his view of ME/CFS as a "mind-body condition." Indeed a few months ago at the cfs_research Yahoo group I said something to the effect that Reeves getting caught in a 1998-like scandal would probably be the best thing we could hope for in terms getting new leadership and research at the CDC.

I just didn't think it would actually happen.

Update: This comment from the NIH representative, Dr. Eleanor Hanna, was music to my ears:
NIH does not have confidence in the new definition for CFS being used by CDC and that it had resisted using the higher prevalence figures in its materials for that reason. She conveyed her concern that the use of different definitions made it difficult to compare results from CDC-funded research and NIH-funded research, and that this would present greater problems as treatments are studied.
Drs. Lucinda Bateman's and Nancy Klimas's comments are also spot-on.

Unfortunately, it sounds like the CFS Advisory Committee, and in particular, its research committee, did not share the urgency and dismay of McCleary, Hanna, and various clinicians and patients.


Guess that means we gotta keep pressing the issue. And perhaps the recent election presents us with new opportunities.


Anonymous said...

It is well past time to have the CDC/CFS/Reeves program and his contractors, Emory University MIND-BODY PROGRAM and ABT Associates investigated for possible waste, fraud and abuse. ABT Associates has been investigated and penalized by the Feds for outright fraud in charging hours for non-existent workers. So charging the government for not working is not new to ABT Associates. Why they are allowed to compete on Fed contracts is beyond me. Why the heads of ABT associates are not in jail is beyond me.
Emory Univesity MIND-BODY Program is another massive waste of CFS funding. William Reeves has supported them as a contractor back to them, his own CDC contractors. He is also Adjunct professor for Psychiatry at Emory even though he is NOT a shrink. So, in the last almost 3 decades the CDC/CFS program has wasted over $100 MILLION DOLLARS and with ZERO returns on that money.
All of us CFIDS sick and taxpayers should request Congress, the GAO, and the Inspector Generals for HHS and the CDC to investigate Reeves and his relationship with these known slimey contractors. I have requested investigations from all of the above and everyone else should do the same. We MUST get rid of Reeves and his associates and contractors NOW. The CDC has no business dealing with CFIDS, they have proved over almost three decades that they can not/will not do anything of value for CFIDS/ME. So, move their money to another Fed organization or turn it into some form of grant funding for the Whittemore-Peterson Institute. But, get REEVES and the CDC OUT of CFIDS rsearch and be done with it.
See Hillary Johnson's great blog at www.oslersweb.com for updates on her research into the CDC/CFS scandal - it continues today has it has in the past when it was investigated by Congress back in the late 1990's. Nothing has changed - money is still wasted and no cause or cure found.
Be OUTRAGED at the CDC and the CDC/CFS/William Reeves, his associates and Emory Univesity MIND-BODY Program and ABT Associates. Be VERY ENRAGED and act on it - use the tools (Congress, GAO, IGs, media) to get rid of them now.

Anonymous said...

CDC plans $400 million expansion
Plan is to build two 10-story research buildings
By Craig Schneider The Atlanta Journal-Constitution
The Atlanta-based Centers for Disease Control and Prevention plans to offer up to a $400 million bump to the local construction economy, officials said.
CDC officials say they plan to spend up to $300 million to build two multi-story research buildings and expand parking lots at the agency’s Chamblee campus on Buford Highway.
Each building will be about 10 stories tall, and the existing parking decks will expand by about 700 vehicle spaces, said George Chandler, CDC director of buildings and facilities.
The agency has received partial funding for the project and expects to receive final word in the fall on additional money.
The buildings, each of which will hold about 250 employees, will not contain biolabs. They will conduct research on chronic diseases and birth defects.
In addition, the CDC recently started construction on a $93 million research support building at its Clifton Road facility in Atlanta.
The agency said the new building should be finished in 2011.
Referred to as the “Building 24 Project, “ it will have 12 floors plus a mechanical penthouse, and will house about 1,100 CDC public health workers. The anticipated move-in date is fall 2011, officials said.

Anonymous said...

Quote taken from Dr. Paul Cheney on the Virus History wrote:
” I contacted Elaine DeFreitas PhD at the Wistar Institute in Philadelphia at the University of Pennsylvania who ultimately found HTLV-II-like genes associated with CFS (1991)[vii]. Her work was unfortunately assaulted by the CDC that claimed either an endogenous RV sequence that lighted up in cases and controls using her primers (per Dr. J.W. Gow) or null responses to cases and controls (per CDC scientist).
Elaine argued that these two scientists with diametrically opposing results manipulated the magnesium concentration which affects the primer stringency and got whatever result they wanted, to make their opposite claims. Her proposal to fly CDC scientists to Philadelphia to run the assays side by side with the her in her lab to see if these results could be replicated was dismissed by the CDC based on “lack of funds to buy plane tickets” from Atlanta to Philadelphia. Dr. Gow would later publish his opinion (1992)[viii]. Left unfunded by senior administrators at the NIH and the CDC, the search for a retroviral link in CFS dissipated and was lost until Judy Mikovits PhD, operating out of the independent Whittemore-Peterson Institute, revived the long search. I congratulate her and the Whittemore-Peterson Institute.”

Dr. William Reeves of the CDC/CFS program did NOT want this study and its data released into the public. This study shows that all the time and money that the CDC/CFS program spent was wasted and millions of lives were affected horribly by REEVES greed and incompetance. It is in Reeve's best financial interests to keep CFIDS a "psychiatric disease" as he and his associates are involved in the psychiatric arena, and NOT the viral arena they SHOULD have been in these last three decades. This so-called "NEW" virus was discovered back in the early 1990's by Dr. Elaine DeFreitas. The data and findings were surpressed by the NIH/CDC-CFS people and her career ruined.

Anonymous said...

Dr. William Reeves of CDC/CFS MUST be removed now: Virus was first found in 1990 (and possibly as far back as the mid 1980's).

Dr. William Reeves of the United States CDC/CFS program MUST be removed and replaced with someone acceptable to the CFIDS community NOW. The latest study on XMRV, the fourth human retrovirus recently discovered, provides further evidence that CFIDS is in fact a "real disease" and not a psychocrap illness that Reeves, his CDC associates, and his contractors can refute. Reeves and his associates should be prosecuted by the law and put in jail for their deliberate destructive activities during Reeves time as the head of the CDC/CFS program. Investigations have been under way by the Inspector Generals of the CDC, NIH and DHHS. We have also requested that Reeves and the CDC be investigated, yet again, for possible funding issues with the CDC/CFS contractors (Emory University Mind-Body Program and ABT Associates). We do expect that Congressional action will begin soon.
Reeves and his CDC associates MUST BE REMOVED NOW. Enough is enough. The damage that this greedy, stupid man has done to millions of sick people is beyond criminal. Reeves is directly responsible for thousands of deaths to heart disease, the cancers that are seen in high proportions in the CFIDS population, and the suicides of those that could no longer "live" a life of pain and despair. Those that took their own life were not weak or mentally ill. Instead, they were so sick and with no where to turn and no one to believe them or help them saw no choice but to end their own suffering. Thousands of deaths sit on the head of Dr. William Reeves.
If you have any extra money, please go to the Whittemore Peterson Institute website at http://www.wpinstitute.org and donate what you can so that REAL and effective research into CFIDS can continue. We can NOT depend on the CDC as they have done nothing but demean and damage the CFID sick over the last three decades. The CDC/CFS/Reeves have wasted millions of dollars (about $100 Million dollars!) and two generations of lives while the Whittemore-Peterson Institute has made massive progress in just two short years and with about one million dollars in funding from a small lab and office in a univeristy - their building is not yet finished. It is going to be outside research that provides the cure for CFIDS, NOT the CDC. Please donate to this wonderful research institute - one that was in fact started by a Mother because her daughter was so ill with CFIDS. When a Mother is involved in the health of her child (and other "children") you KNOW it will succeed - and the WPI HAS indeed succeeded brilliantly.
See Hillary Johnson's website on CFIDS and the damage done by the CDC from the very first outbreak in Incline Village, Nevada more than two decades ago. Yes, those people are still very sick and permanently disabled - many are dead from the cancers most commonly found with CFIDS sick. http://www.oslersweb.com/

You will also read that this virus may have been discovered by a reseacher (Dr. Elain DeFreitas) at the Wistar Institute around 1990/91. The CDC did nothing with this research and her career was damaged. HAD the CDC bothered to look into her work back in 1991, millions of people, both here in the US and worldwide, would NOT be so sick, disabled, and in too many cases - dead from those cancers associated with this new virus. Recognize that this virus is believed to be contagious and that means that anyone - everyone is a possible target for this disease. I have lived with CFIDS for 15 years and my life has been pretty miserable. I truly wish I had died 15 years ago from a quick, deadly heart attack rather than have had to live in this miserable CFIDS sick body. Says something doesn't it?

Anonymous said...

Inspector-General's Report: full text -- May 10 1999 http://www.cfs-news.org/scandal.htm
EXECUTIVE SUMMARY: This final report points out that of the $22.7 million charged to the Chronic Fatigue Syndrome (CFS) program during Fiscal Years 1995 through 1998, only about $9.8 million (43 percent) was actually spent on CFS program activities. The remaining $12.9 million (57 percent) was spent on non CFS activities ($8.8 million) or was not documented in sufficient detail for us to discern its applicability to the CFS program ($4.1 million). These questionable charges occurred because of deficiencies in the Center for Disease Control and Prevention's (CDC) internal control system regarding the handling of direct and indirect costs. As a result of this matter, CDC officials have provided inaccurate information to the Congress regarding the use of CFS funds, and have not supported the CFS program to the extent recommended and encouraged by the Congress. Officials of the CDC generally concurred with steps we recommended they take to assure funds are used for their intended purposes.
Senator Harry Reid (D-Nev.) requests a GAO investigation

Anonymous said...

DONATE TO THE WPI AT www.wpinstitute.org. This VIRUS affects ALL of us both here in the US and worldwide. It is far more critical than the media-hyped/CDC hyped Swine Flu virus that has shown itself to be even less deadly and far more milder than the normal seasonal viruses.
XMRV is possibly one of the greatest medical/scientific discoveries of this centuury and make well be the key to cancer as well as many other diseases.
DONATE!!!!!!! www.wpinstitute.org

Anonymous said...

The old comments from the CDC forum www.cdcchatter.net were taken down presumeably because of personal attacksn on William Reeves. To see those old comments go to the www.cdcchatter.net site and type CFS in the SEARCH box on the left hand side. Old comments will come up - not really interesting just CDC people complaining about the CFS sick and their jobs at the CDC. The idiots at the CDC STILL regard CFIDS/ME as a non-illness and are mad at Congress for forcing them to keep CFIDS at the CDC. And we wonder why funding for CFS at the CDC has dropped below the $3 Million mark? They are trying to kill it off by killing the funding and it's working. However, many of us CFIDS Sick believe that the CDC has NO business dealing with CFIDS and that money needs to go elsewhere and away from the CDC.
Email your Congresspeople, the GAO, and COMPLAIN and request investigations into the CDC/CFS/William Reeves for wasting over $100 MILLION DOLLARS only to line the pockets of those vested like Reeeves, Emory University and ABT Associates.

Anonymous said...

WE all must write our congress people, GAO, and the Inspector Generals of the DHHS and CDC and demand that investigations into the waste, fraud and abuse of funding for CDC/CFS program be taken. It is about $150 MILLION DOLLARS of waste now by the CDC on research for stupid things, NOT related to CFIDS. William Reeves must be investigated and put in jail. Those also involved during the last decades must also be punished for what they have done to millions of very sick people. AND, the possible damage done to cancer and othe disease research by thwarting Retrovirus research back in the 1980's. The blood supply in the US (and worldwide) is contaminated with the XMRV virus and who knows how many millions of people were infected with CFIDS, cancers and other, as of yet, unidentified diseases. All of this because of the stupidity and then cover-up of CFIDS by the CDC for about three decades.
Are you enraged yet? YOU SHOULD BE!
So hit Congress and the GAO and demand that the CDC/CFS/William Reeves be investigated and dealt with by the law.

Anonymous said...

Sorry about posting an "old" Testimony from Kim McCleary BUT, this testimony targets IN ON ABT Associates and Emory Mind-Body and the amounts of funding wasted, etc. TESTIMONY TO THE DHHS CHRONIC


K. Kimberly McCleary,President & CEO, The CFIDS Association of America October 28, 2008
My name is Kim McCleary and for nearly 18 years I have served as the chief staff executive of the nation's largest and most active organization dedicated to conquering chronic fatigue syndrome, the CFIDS Association of America. I had hoped to share with you ideas for strengthening public/private partnerships to advance CFS research and education,
based on successes for other complex health issues.

Instead, I feel I must use my time before the committee to inform you about a situation of deepening and widening concern to all of us at the CFIDS Association, including my colleague Dr.Suzanne Vernon, a former CDC staff scientist.

I regret that this testimony is necessary, as we have been here – here in this very room – before, talking about this very same topic. In spite of my calm demeanor, I am outraged that we are again forced to confront serious funding issues with the CDC research program, just as we were 10 years ago, in April 1998.

At that time, it was Bill Reeves who took the courageous step to provide evidence of funding irregularities in the CFS program; a year later the Inspector General confirmed that $12.9 million had been reported to Congress as CFS expenditures, but actually was spent by CDC on other programs between 1995 and 1998.
Now it is Dr. Reeves at the center of these problems as chief of the CFS program. The headlines on these Chronicles might be the same as they were in 1998. Only my hairstyle has changed.

Based on information we have obtained directly from CDC officials and available on public information sites, the "boom" of CFS research that occurred during the "payback" phase from 1999-2005 has eroded to a "bust" of shameful scientific leadership, zero accountability,invisible outcomes and millions and millions of dollars stuck in suspended animation, if not wasted.

At least in the 1998 scandal, science was being conducted that would aid discoveries in other diseases. This time, only the government contractors seem to be benefiting from millions spent for which there are no worthwhile outcomes for American taxpayers, or CFS patients.

You're all familiar with the infamous "Bridge to Nowhere." Let me introduce you to what I call the "Research to Nowhere."


Anonymous said...

Complain to Senator Tom Coburn about CDC's waste of CFS funds. See below for his SUBMITATIP address.
Senator Tom Coburn-Ranking Member of the Federal Financial Management Subcommittee

172 Russell Senate Office Bldg. Washington, DC 20510
Phone: 202-224-5754 Fax: 202-224-6008
As Ranking Member of the Federal Financial Management Subcommittee I am working tirelessly to conduct effective and rigorous oversight of the federal government. Reckless and unsustainable spending is inexcusable, especially at a time when our nation is at war, and when major entitlement programs like Social Security and Medicare are headed toward bankruptcy.

I welcome feedback and suggestions from Americans and anyone around the world who interacts with the Federal government. You may contact my office by phone, fax, mail, or by email.
I display the “Principles of Accountability” at all of the hearings to remind the audience and my fellow senators that taxpayers deserve nothing less than a government that is accountable for its actions and spending. The following principles guide my oversight work in the U.S. Senate.

Tom Coburn, M.D.


JUNE 2007
CDC OFF CENTER-CDC Off Center - Dr. Coburn issues 100+ page oversight report on public health agency - The First in a Series of Oversight Reports on Federal Agencies
--- A review of how an agency tasked with fighting and preventing disease has spent hundreds of millions of tax dollars for failed prevention efforts, international junkets, and lavish facilities, but cannot demonstrate it is controlling disease.



Anonymous said...

Dr. William Reeves – Another Mark Whiteacre? Criminal Negligence Perhaps?
Tuesday, November 3, 2009

For those of you who don’t know, Mark Whiteacre was a biochemist at Archer Daniels Midland, who is most famously remembered as one of the highest level corporate whistleblowers in the history of corporate America. He got the inside scoop on a price fixing scandal on Lysine and other products, and got his bosses in trouble, while he himself had his own embezzlement scheme going on within the company. A similar thing can be said about Dr. Reeves at the CDC – he blew the whistle on his bosses, and yet he continues to be hypocritical to the extreme by stating that the retroviral program at the CDC was taking the lead in an attempt to replicate the WPI XMRV results.

Reeves acted unethically by stating to the press that he did not expect the agency (CDC) to replicate the WPI findings of XMRV in ME/CFS patients. He acted unethically in that he pre-judged someone else’s findings, before doing any research of his own. He put his credibility, and quite possibly his career on the line – and he will be watched very closely. Falsifying data won’t go over this time.

But why would the CDC engage in such sinister behavior? Their mission is to protect the public from emerging infections, and in this case they’ve failed miserably. The pharmaceutical companies rely on them to lay out their research roadmaps for the future – if they put out junk science, how is the pharmaceutical industry to develop new treatments? And why would they want to intentionally try and deny scientific facts???

It’s certainly not in the interest of the drug companies, CFS/ME/FM/Gulf War Syndrome patients. It seems the CDC’s motto is if it isn’t a deadly disease, then feed them Thorazine, Zyprexa, and Amitriptylline, and keep them so sedated they can’t think straight – something that’s already difficult enough for these patients – now we’ll turn them into living zombies! For the drug companies this would only represent five or six dollars a day – so it wouldn’t contribute much to their bottom lines – Amitryptilline and Thorazine are off patent and cheap. But anti-retrovirals would be a potential goldmine for the pharmaceutical industry – rather than sell just to HIV patients, now they could quadruple their sales to CFS/ME/FM/Gulf War Syndrome patients.

So who would not want that? The first that come to mind are HMO’s PPO’s, publicly funded health plans. Having to pay $1000 or more for XMRV treatments for an indeterminate period of time is something they would not take sitting down. The second that comes to mind is blood banks – now they’ve got to worry about tainted blood on an unprecedented scale – making HIV and Hep C look like child’s play. Then comes the issue of liablity and lawsuits – like in Canada after the Canadian Red Cross was found negligent. If they can keep it as a neuropsychiatric illness, then they can keep putting off liability. It’s criminal negligence at it’s finest – the CDC knew of a viral link for twenty years, and they failed to act on it, and thousands more people became ill!

Dr. Timothy Luckett. I hold an undergraduate degree in Biochemistry from Newcastle Unversity, an Msc in Biochemistry from University of Alberta, PhD in Cellular and Molecular Biology from Cambridge University, and I have worked for the CDC as a postdoctoral fellow, and worked for Orchestra Therapeutics, until their insolvency last year. My research interests is retroviruses – which was an area of active research at Orchestra Therapeutics. The recent discovery of XMRV as a potential link to Chronic Fatigue Syndrome has become very much of a research interest of mine, as my younger sister is has struggled with the disorder since the age of 19.