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CDC position on XMRV findings showing CFS might be caused by virus

Alan S. Russet, on Nov 3, 2009, 12:15 am

The CDC has called the new Chronic Fatigue Syndrome research exciting, but preliminary.

“If I don’t know the nature of the cases and controls, I can’t interpret the findings,” Dr. William C. Reeves, who directs public health research on the syndrome, told The New York Times.

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

Remember that Dr. Reeves & those at the CDC are among those who firmly believe that so-called chronic fatigue syndrome and fibromyalgia is a mental illness, a psychosomatic disorder, a hysteria of women.

Tags: , , , | Category: News | 13 comments - (Comments are closed)

  • Sharon Ann

    Dr. William Reeves of CDC/CFS MUST be removed now: Virus was first found in late 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. Please contact Senator Harry Reid (Nevada) and ask for investigations into the CDC and the CDC/CFS/Reeves. Senator Reid was involved in the 1999 CDC/CFS funding scandal and is well aware of the CDC’s issues with funding.

    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 university – 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. Elaine DeFreitas) at the Wistar Institute around 1990/91. The CDC delibertly damaged her research and her career was ruined – thus other researchers did not continue with viral research for fear they too would be damaged by the CDC. HAD the CDC bothered to do their job and really 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 CFIDS and 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. There is also the horrible fear that the XMRV virus is in the nation’s blood supply and this is terrifying. They already know that XMRV causes an aggressive form of Prostate cancer and probably some cervical cancers and Lymphomas/Leukemias too.

    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?

  • Sharon Ann

    This text is from the 1999 investigation into CDC/CFS funding problems. Reeves blew the whistle on his boss and covered his own butt as he too was involved. Reeves then took over the CFS program and used the money for psychiatric BS research, not real medical research. It is believed by many that he is possibly involved in more waste/fraud/abuse with his CDC contractors, Emory University/Mind-Body Program (where he acts as a contractor back to his CDC Contractors) and ABT Associates who have taken funding but provide little to nothing of value. ABT Associates have also been investigated for this same issue by another Federal organization. The 1999 GAO report is below. History has a tendancy to repeat itself – and may well hava again with the CDC/CFS under William Reeves.

    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.

  • Sharon Ann

    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.”

  • Sharon Ann

    THIS WAS THE ORIGINAL STUDY FROM THE LATE 1980′S THAT WAS KILLED OFF BY THE CDC AND NIH. DR. ELAINE DEFREITAS’ REPUTATION AND CAREER WERE DESTROYED BECAUSE OF THIS AND THIS TYPE OF VIRUS ALLOWED TO CONTINUE ON UNTIL THE WHITTEMORE-PETERSON INSTITUTE UNDER DR. DANIEL PETERSON AND DR. JUDY MIKOVITS TOOK OVER RESEARCH. Is this 1990 virus the same as the XMRV virus and did 20 years pass with people “living” and dying from CFIDS and maybe cancers (they know the aggressive form of Prostate Cancer) and other diseases? If yes, then those in the CDC and NIH must be investigated and prosecuted. This would be beyond criminal should this be the case and millions worldwide have been sick, disabled, and dead from this situation.
    =======================
    Scientific papers: The 1991 DeFreitas paper
    Abstract and Full text here: http://www.pnas.org/content/88/7/2922.full.pdf+html
    Proc. Natl. Acad. Sci. USA Vol. 88, pp. 2922-2926, April 1991
    Medical Sciences
    Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome (Epstein-Barr virus syndrome/infectious mononucleosis/myalgic
    encephalomyelitis/polymerase chain reaction/in situ hybridization) The Wistar Institute, 3601 Spruce Street, Philadelphia, PA 19104
    Contributed by Hilary Koprowski, November 13, 1990 ABSTRACT Chronic fatigue immune dysfunction Chronic fatigue immune dysfunction syndrome (CFIDS) is a recently recognized illness characterized by debilitating fatigue as well as immunological and neurological abnormalities [Straus, S.E. (1988) J. Inf. Dis. 157, 405-412]. Once thought to be caused by Epstein-Barr virus, it is now thought to have a different but unknown etiology. We evaluated 30 adult and pediatric CFIDS patients from six eastern states for the presence of human T-lymphotropic virus (HTLV) types I and II by Western immunoblotting, polymearse chain reaction, and in situ hybridization of blood samples. The majority of patients were positive for HTLV antibodies by Western blotting and for HTLV-II gag sequences by polymerase chain reaction and in situ hybridization.
    Twenty nonexposure healthy controls were negative in all assays. These data support an association between an HTLV-II-like virus and CFIDS.

  • Marissa Jamison

    I got it from the CDCchatter.net site and it is from the International Association for CFS/ME people. Dr. Jonathan Kerr, the doctor/researcher responsible for finding the first set of damaged CFIDS genes that has now grown to something like 88 known damaged and involved genes gave the quote. Hope it’s ok to post this. I think very highly of Dr. Kerr and so I wanted to put his quote out there for others to read and think about.
    Taken from the website of the International Association for CFS/ME
    http://www.iacfsme.org/Home/tabid/36/Default.aspx Distinguished UK scientist and geneticist, Jonathan Kerr, expressed the following:
    “Research output on CFS from the CDC in the last 5 years has been principally in the areas of gene expression and mutation. These studies used patients who did not attend CFS clinics and were not diagnosed by recognised CFS clinicians. A microarray was utilised which did not represent the entire human genome (yet such an array was available at the time). But, at no time were the microarray gene profiles confirmed using real-time PCR, a standard procedure in microarray studies because the arrays are very sensitive but not very specific. The findings of these papers do not lead anywhere and were not followed up by CDC. They do not provide insights into pathogenesis, nor do they indicate candidate treatment targets. The authors made no effort to explain their work in context of the available CFS gene expression literature.”
    I find it interesting that Miller said that both he and Reeves were working on the Swine Flu – can’t remember the correct word he used for moving people from one project to another – But, that does strike me that the CDC KNOWS that Reeves is a major public relations problem for them and he has to go, one way or another. That is, unless there is some very dirty stuff that Reeves knows about and the CDC must protect him otherwise the really dirty stuff gets out. Like maybe the fact that they KNEW about this virus back in the mid 1980’s and did nothing about it and now here we are, almost 20 years later, with millions sick with CFS, FM, cancers and maybe other terrible diseases. Reeves may know this and was part of a cover up using the psycho stuff to push off the real study of what causes CFS – and the virus the CDC knew or had a good idea about 20 plus years ago.
    There must be much more going on than just Reeves playing games with the psychiatric stuff and funding issues. CDC/CFS already got into big trouble with Congress and GAO in 1999 because of using CFS funds for other non-CFS projects. Reeves was the whistleblower on his boss Mahy, but it was common knowledge that Reeves was only protecting his own butt and did not care about misuse of funds – HE was in on it too.So he saves his behind, gets rid of his boss, and takes over the CFS project that he has mocked and was considered the worst offender of not believing the faker CFS people. But that doesn’t matter since he got his boss’s job and got to play shrink even though he is NOT a shrink.
    Too much going on that we don’t know about and the CFS stuff is the tip of the iceberg. Funding problems and research cover ups that may include possible cures for Cancer. Sounds crazy but after 30 years and over $100 Million for CFS, why has nothing been accomplished except that CFS people were sexually abused as kids???? We have to wonder what the real deal is at the CDC.

  • Marissa Jamison

    Again from Hillary Johnson’s blog at http://www.oslersweb.com (I love that woman’s writing and detective skills!). Ms. Johnson noted that UNUM stock took a tumble and maybe it was because stockholders saw the Op-Ed in the Times. As Ms. Johnson said: “Something made stockholders start dumping UNUM shares at about 3 pm Wednesday afternoon. UNUM is the largest disability insurer in the world, with ties to the shrink lobby in the UK and a 20-year commitment to making sure no one with “chronic fatigue syndrome” receives disability support…”Did any UNUM stockholders happen to read the Times op-ed today and notice the comment about the CDC’s desire in 1987 to protect disability insurers from making “chronic disbursements”?
    Now this gave my husband and I quite the jolt. We had long assumed that the CDC and NIH were somehow involved in the insurance industry to keep from having to pay out Long Term Disability (LTD) to those with CFIDS. The HIV/AIDS people were “good enough” to die quickly from their disease and not cost UNUM much money. But, those of us with CFIDS did not die quickly, we lingered for years and decades and that was just too costly. I know I applied for both private (self-employed) LTD and life insurance and was turned down flat for LTD but accepted for life insurance. At that point the only illness I had had was a very recently diagnosed CFIDS/FM. Until that point I was the picture of perfect health and did not cost the health insurance company very much except the occassional check-up, nothing more. But the insurance company got hold of the doctor’s file that stated I had CFIDS and it was all over. I would be sick forever but would not die for some time. That was in 1993 and the insurance companies KNEW that CFIDS was an almost forever disease and one that would destroy their balance sheets if they paid out on it. So they didn’t.
    NOW, where am I going with this? IS it not time to investigate the relationship between the disability insurance companies and the CDC and NIH?? Sounds like a big odd conspiracy theory, but, if someone can explain to me why companies like UNUM can get away with murder in not paying for the CFIDS sick but pay out for all other diseases including the life-time disabling, then offer up a good answer.
    Again, more possible illegal activities with the CDC/NIH and MONEY. Not just for funding as was shown in the above, but also the public insurance companies. Do the idiot Brit shrinks who are buddies with Reeves have something to do with this? Does Reeves and others going back to the late1980’s have something to do with this? Could they be smart enough to keep this game up this long???
    Just more food for thought. JM

  • Sue

    Thank you for this information. I will be very interested to see researchers find that the virus discovered by Dr. DeFreitas is the same as that found by the researchers at Whittemore-Peterson Institute, National Cancer Institute & the Lerner Research Institute.

  • http://www.cdcchatter.net Rick K

    Want to see something interesting????
    go to http://www.cdcchatter.net and go to the section titled: “New progressive leadership needed for CFS at CDC”
    Posted by: Anonymous on Tuesday, September 29, 2009 – 12:00 AM.
    Calls for new progressive leadership in CDC’s Chronic Fatigue Syndrome (CFS) program and a more appropriate location in the CDC organization, as well as concerns about use of CDC funds for CFS.
    The HHS Scientific Advisory Committee for Chronic Fatigue Syndrome and the International Association for CFS/ME have formally recommended a change of leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education. They recommend “that the CDC needs to identify a CFS program leader who is a progressive, open-minded, and dynamic manager with a sense of urgency commensurate with the pressing needs of the CFS community.” Based on estimates of increasing prevalence and the poor track record after 25 years of effort, the IACFS/ME is highly critical of the proposed 5 year strategic plan and urges that the CFS program be relocated to the National Center for Chronic Disease Prevention and Health Promotion which “contains the necessary expertise and leadership critical to establishing interventions to detect, control and prevent CFS.”

    Also at issue is the possible misuse of funds. Formally testifying before the CFSAC, Kim McCleary, President and CEO of the CFIDS Association of America, detailed concerns about the management of CDC funds allocated for CFS research.

    Minutes of the DHHS Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, October 2008

    Testimony of Kim Mcleary October 2008

    CFSAC recommendations, May 2009

    IACFS/ME’s recommendations on CDC’s 5 Year Strategic Plan for CFS Research, July 2009

    11/2 UPDATE – Looks like the CDC’s chronic fatigue syndrome research group, led by Dr. William C. Reeves, may have some ’splaining to do in Washington. A possible research breakthrough – the discovery of a correlation between CFS and a retrovirus related to the AIDS virus – has fired up the medical community in recent weeks. “This is going to create an avalanche of subsequent studies,” Dr. William Schaffner, an infectious disease expert at Vanderbilt University, told the New York Times this month. But will the Centers for Disease Control and Prevention play a role in that research? It hasn’t so far.

    Read the Atlanta Unfiltered article Officials Advocates: Where was CDC for milestone in chronic fatigue syndrome research?

    ***COMMENTS ON THIS STORY HAVE BEEN TURNED OFF AS THEY VEERED TOO MUCH TOWARDS PERSONAL ATTACKS***
    —————————————————————————————————–
    This site is meant for CDC people (and outsiders if they know about it but most don’t) to talk about CDC issues. There were so many negative comments about the CDC/CFS program under Reeves BY THE CDC STAFF and some comments that the webmaster considered personal attacks against Reeves, that the 36 comments were removed. The webmaster allowed an update that takes you to another site with an article written about the CDC and its CFS scandal. But, if you want to see the comments from the CDC staff themselves that were removed, go to the SEARCH box on the bottom of the page on the left side and put in CFS . This will bring up all the comments that were removed fro public viewing. Very interesting to hear the CDC staff complain about the CDC/CFS/Reeves. You don’t need to be a CDC staff member, but most of the public did not know this site exsisted. It does not belong to the CDC but they must allow it according to law, the CDC people just can’t go to the site on CDC time or using their computers. http://WWW.CDCCHATTER.NET -

  • Sarah

    NeW at http://www.cdcchatter.net – post on the disaster going on at the CDC for the last how many decades? Also a comment regarding the “hot spotlight” that got shown on the new XMRV study by the WPI people.

    So it is not just the CDC/CFS/Reeves problem for the CDC but the whole of the CDC that has been in trouble with a ton of major issues including loss of senior researchers – what they call Brain Drain, low morale, over spending on new buildings that don’t have labs and have stupid expensive things for the staff but not related to any sort of real research, funding “issues”, and the problems keep coming on down there in HOTlanta.

  • Martin White

    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.

    http://cfidsresearch.blogspot.com/2009/11/modus-operandi-of-xmrv-pt1.html

  • Martin White

    I would not bother with http://www.cdcchatter.net. When you read comments on it, the fire fights and nasty comments back and forth just blow your mind. There are some very sick, immature CDC people putting out really nasty, deameaning stuff on that site. They take the cheapest shots I have ever read anywhere on any topic that they don’t like to hear about including well known issues that Congress has/is investigating, management problems that THEY complain about but take shots at others for noting, and of course, the CFIDS sick. One idiot stated that s/he wished the CFS program were removed from the CDC (WE DO TOO) and it seems that the CFIDS sick have enough energy to complain, etc.
    Something very wrong all the way around at the CDC and NOT just with the CDC/CFS/ William Reeves program. House cleaning and dead-wood trimming are in need there.
    So many nasty, stupid comments! Don’t bother reading, not worth your energy loss.

  • http://crmfghtr@yahoo.com Scott

    Sharon Ann you said my thoughts exactly. I have said many times I wish I would have gone swiftly 16 years ago, this is just absurd living like this.

  • Sharon

    Scott: I think many of us wish we had died quickly when we were first sick with CFIDS had we KNOWN what was ahead of us. But, most of us can’t do this because we have family, friends, animals, etc. that need us in almost any manner they can have us.

    I fervently believe that William Reeves and his staff of morons and his contracting thieves have NEVER seen a real, sick CFIDS person. Once you have seen a few of us sick, you can spot us a mile away – and I HAVE spotted people with CFIDS (that they were hiding to protect their jobs) and shocked them by asking them if they had CFIDS. You can tell who is sick, so why can’t the unethical CDC/CFS people? Guess that money must cancel out any sort of ethical behavior. A good pint of our CFIDS blood were serve them all what they deserve.

    One pint of blood and then we sick get to sit back and watch the cryiing and misery – that we have lived with for years and decades.

    WILLIAM REEVES: WANT A PINT OF MY LOVELY BLOOD?????