blow the whistle
$show the love

atlanta mainstream

Advocates: Where was CDC for milestone in chronic fatigue syndrome research?

 

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. Advocates have been pushing the Atlanta-based CDC for years to fund outside research into a possible viral explanation for the debilitating disease, which afflicts as many as 1 million Americans — maybe more. Most of them are adult women.

The agency’s role in CFS research could come under the spotlight Thursday, as a federal advisory committee begins two days of meetings where the retrovirus findings will be at center stage. Advocates have called for help in packing the meeting to signal the committee, which makes recommendations to Health and Human Services Secretary Kathleen Sibelius, that they want action now.

Reeves is a controversial figure in the CFS community, blamed by many for downplaying the severity of the disease and refusing to fund meaningful research into a viral explanation. Just Google him and see for yourself.

Without naming Reeves, the HHS advisory panel in May called for his ouster and for federal health officials to “establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.” Minutes show the committee talked about whether to name Reeves in its recommendation.

“We have heard from the IACFS/ME President, who represents the scientific CFS community, call for new leadership within the CDC’s CFS program. We also learned that a CFS patient group has over 1,000 signatures asking for a change in leadership at the CDC’s CFS program. Furthermore, we continue to hear complaints from patients during public testimony about a number of issues involving the leadership at the CDC. In addition, a number of patient organizations have called for a change in leadership at the CFS CDC program.”

The action came after the world’s largest group of medical professionals promoting CFS research made a similar recommendation — in somewhat blunter terms.

CDC’s research on the disease “needs … a progessive, open-minded and dynamic manager with a sense of urgency commensurate with the pressing needs of the CFS community,” wrote Dr. Fred Friedberg, president of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.

Friedberg called on the CDC’s new leadership to give CFS research the urgency it deserves as an “unacknowledged crisis.” He criticized the agency’s five-year plan for addressing the disease as lacking substance and detail and noted that CDC sponsors no prevention or clinical treatment research.

In Fact, Friedberg wrote, CDC’s top researchers didn’t even show up at his group’s annual meeting this year: “Noticeably absent from our 2009 meeting was the senior leadership from the CDC CFS research program.”

Advocates also planned to present an online petition calling on the CDC to stop using an empirical definition for the disease, also known as the Reeves 2005 definition, in its studies.

They contend that language is too vague, too subjective and prone to improperly including patients who actually suffer from depression or another mental disorder. As a consequence, they say, the CDC’s work is ineffective because it includes patients who have been misdiagnosed.

—————–

Atlanta Unfiltered relies exclusively on your financial support. If this article has value to you, why not make a  financial contribution to help us do our work? Use the handy “donate” button on the homepage, or contact us at editor@atlantaunfiltered.com if you wish to send a check. We’re not picky. Contributions are NOT tax deductible for now.

If you’d like your donation to benefit a particular one of our underpaid (OK — unpaid) correspondents, let us know so we can share the wealth.

 

###

 

 

Print Friendly, PDF & Email

 

79 Responses to “Advocates: Where was CDC for milestone in chronic fatigue syndrome research?”

  1. Sharon Stapleton says:

    This well researched and written article hits the nail on the head in regards to Reeves and his role in wasting millions of dollars in Federal research funding, time, and the devestating impact he has had on the lives of many terribly sick and disabled people.

    Yes, Reeves does have a lot of ” ’splaining to do” during the Department of Health Human Services/CFSAC meeting in Washington on 29 and 30 October. His answers should be most interesting as he will appear to be a rat caught in a trap, unable to remove himself from the problems that HE created for Chronic Fatigue/Immune Dysfunction sick using the CDC as his weapon against them for the past decade.

    With Dr. Daniel Peterson of the Whittemore-Peterson Institute in Nevada and one of the researchers to discover the new CFIDS-Cancer Virus and also one of two front line physicians during the initial Incline Village outbreak along with Dr. David Bell of the Upstate New York cluster of very sick children in a poor, rural area – Reeves will have an impossibe time trying to get any foolish, insulting and demeaning comments out of his mouth during the DHHS/CFSAC meeting. Reeves simply can not win against these two front line physicans/researchers as they have been taking care of the very sick for almost three decades while Reeves has been playing psychobabble games with his CDC contractors, Emory University Medical School/Psych Department (MIND-BODY PROGRAM) and ABT Associates.

    The CFIDS sick and advocates are looking forward to this meeting in Washington. The PUSH to remove Reeves will be front and center and like that trapped RAT, he will be unable to extract himself and run. Not this time. Finally.

  2. J Ayres says:

    There was a CFIDS study conducted by CDC this past winter, where they randomly recruited CFIDS and non-CFIDS individuals from the area (everyone was local) and did physicals, took blood, did interviews, etc.

    Has this study been mentioned/made public/ findings presented?

  3. Tom K says:

    I have no confidence that the CDC are studying “proper” CFS any more.

    They changed the criteria they are using to select patients.
    This meant the prevalence of CFS from their studies went from 0.235% to 2.54% i.e. the new criteria pick out 10.8 times as many people.

    There’s a petition against their usage of these criteria (Reeves, 2005) at:
    http://www.ipetitions.com/petition/empirical_defn_and_CFS_research – nearly 2000 people have signed it including some PhD, MDs, etc.

    In the past, other researchers have generally followed the definition the CDC came up with to study the illness but they haven’t in this case.

  4. Elsie O. says:

    ’bout time someone outside of the CFS/ME community brought this to light.
    Thanks very much!

  5. I Dunsmuir says:

    When will Reeves go on trial.

    Indeed, is there a legal proceedure even available for Medical malfeasance and corruption at the CDC ?

    Or will Mr Reeves simply be retired with full pension.

  6. TS says:

    The situation in the UK has been similarly desperate for CFS sufferers. For the past 25 years all taxpayers’ research and treatment funding has gone to members of the psychiatric profession, Peter White, Michael Sharpe, Simon Wessely, Trudie Chalder etc. who have insisted that CFS is ‘all in the head’. They have deliberately included a large number of people with mild mental disorders in their new definition of CFS, which is now nothing like the World Health Organisation’s.

    CFS sufferers here have been treated with neglect, abuse and cruelty by the medical profession.

    There is no sign of change. UK doctors are not allowed to prescribe antiretrovirals to CFS patients. The only available treatments either don’t work or worsen symptoms; they are cognitive behaviour therapy, graded exercise therapy and antidepresants by the bucketloads.

  7. johnny says:

    The CDC has shown it not only that it favors repeating the unfortunate “hysterical paralysis” stigma on CFS that some took in Multiple Sclerosis! They have overwhelmingly done more harm than good! I think its debatable but the lack of progress and patient persecution could very well fit squarely on the shoulders of the CDC. They need to be removed COMPLETELY from CFS research until they can find some honest,competent scientist to replace the current staff. I remember hearing one of them say a couple years ago that they tested for every single conceivable virus and found nothing out of the ordinary…opps! missed a few!

  8. Alice Preston says:

    The CFS “research” and treatment community seems to have far more than it’s share of dubios and shady characters I see Cheney is still making an uber fancy life off the suffering of CFS. I would Love to se an expose on his “research”. Every couple of years has a “breakthru” in some specialty tha nobody in that specialty has ever heard off – and business takes off for him again
    It will be interesting to see Who benefits from this discovery and if the findings can be duplicated by anyone else
    Hope does not turn out like Myhill where a “special new test” nobody else anywhere has ever run or coroberated or vidated the results for is heralded as a breakthru and Che-ching the money flows in
    Unless and until the results of this viral breakthru are duplicated by reputable researchers at other sites I will regard it as a possible contender as the Pltown Man of cfs for 2009

  9. Martin White says:

    “Advocates: Where was CDC for milestone in chronic fatigue syndrome research?”
    After today’s DHHS/CFSAC meeting on the new virus and on the anger directed at the CDC and Reeves, this article was quite timely and informative. I am glad I read this article before I watched the HHS/CFSAC live video feed today since it gave me the background I needed to understand all the undercurrents and battles.
    Thanks for an article that really gave a great background on this whole CDC/CFS/Reeves/new Cancer-CFIDS virus.

    Keep us up to date on the goings on with these people and the games they seem to be playing.

    Martin White

  10. Dr. RL Kugler says:

    Very interesting article. It did give the background many of us needed in order to understand the politics of the CFIDS disease and its history with the CDC and Dr. Reeves.

    I do belive that Health an Human Services Secretary Kathleen Sibelius must be the person that the HHS/CFSAC folks go to and not an assistant. In Washington, those below the Secretary really don’t do much other than hold he reins of the horse (horse holders) for the Secretary. They need to get to Sibelius or nothing will be done.

    Dr. RL Kugler
    Washington DC

  11. Sandy Cooley says:

    My husband has been 98% bedridden for over 20 years!!!!!!!!!!!!!!!!!!!!! due to very severe CFS and Fibromyalgia both. His whole life has been taken away practically with no specialists to help him.

  12. PB says:

    The people selected by Reeves for his studies include some folk with real ME (CFS) but also includes a lot of people whose diagnosis is depression. Reeves is studying a cohort of patients that is terminally flawed. As someone said in today’s meeting, it is Reeve’s Disease that he is studying, not ME/CFS.

    Reeves needs to retire or go study paramecia found in jellyfish, or something equally important. Unless the CDC moves the study of anything ME/CFS related out of his reach, the CDC should just be written off as far as funding for this vital research is concerned. Reeves is a Flat Earther who has forgotten how to apply the Scientific Method, and who has been overly influenced by the CBT crowd in the UK. They love him over there – his journal article co-authorship proves it..

    Thanks for this article.

  13. Irene McLeary says:

    Great article. Please update us on the two day meeting and all the dirty details. Nice, clean English and not the medical stuff spoken at the HHS meeting today – that most of us don’t understand – would be greatly appreciated!!

    Really love this site!!! Keep up all the good work and dirty digging!! We have to stay on top of those idiots as they get away with murder as it is. Cheers.

  14. Susan Wenger says:

    Nice summary. Reeves has knowingly ignored research that could have led to the alleviation of suffering for so many. A lot of us won’t be satisfied if he is merely fired.

    But at the very least, he needs to go — and so do all of his followers at the CDC.

  15. Benjamin Flaherty says:

    Thanks for your article. As someone else suggested, I also hope you will write about what transpires at the meeting.

    There’s a side-note to this story — the NIH’s CFS Advisory Committee ( CFSAC) meetings, with which I believe Dr Reeves has been closely associated in the past, are, by law (specifically Section 504 of the Disability Act of 1973), required to be made accessible to people with disabilities. In 2004, a grass-roots organization in Massachusetts (“Mothers Against Myalgic Encephalomyelitis” – MAME) requested that the meetings be webcast so that people with CFS (most of whom cannot travel to Washington OR sit through 8-hour meetings) could see what is transpiring on their behalf. This request should have been handled routinely as a simple bureaucratic procedure (at the time several other NIH committee meetings were being webcast), but the CFSAC refused. This was illegal on their part, a violation of civil rights. MAME appealed through the Office of Civil Rights, which, curiously, buried their appeal in paperwork until this past April, when a new head of the CFSAC was appointed (Dr Wanda K Jones), who IMMEDIATELY did the proper thing, wrenched the paperwork from the OCR and made sure that the May 2009 meeting (as well as the current ones) were webcast.

    I can only speculate on why it took over 5 years for the CFSAC to comply with the law, to make their meetings accessible to the people who are most affected by the meetings’ outcome. That’s another story for investigative reporting.

  16. Samuel W says:

    Well done. You, Atlanta Unfiltered, are the first of the press to dig deeper.

    Care to block out a little time to read Osler’s Web? Read Hooper’s papers? Talk to a few advocates?

  17. Tammie says:

    Thank you for writing this article. More people need to be aware of the gross misappropriation of funds by the CDC and the ways in which they have harmed CFS patients.

    As to the current “study” being done by the CDC in Georgia that another person commented on, they are not even using the terribly flawed empirical definition for CFS. That definition is bad enough and has already been shown to include many patients who do not have CFS. However, they have even further watered down the criteria for inclusion to this “study”. In this grp, they are allowing anyone who has had one month of unexplained fatigue. They do not require the usual 6 months, nor do they add any of the other symptoms that truly define CFS. CFS is not even in the same ballpark as simply being tired for a month, but that is basically what they are now trying to say. IMO, this is the among the worst “research” they have done thus far.

  18. Anne says:

    Thank you for writing this. Might I suggest you look into one of their planned studies…Since their thesis is that CFS is caused by childhood stress (sex abuse, etc) they are going to do a study on wards of the state in Georgia. The ethics of using wards of the state to further their shoddy science seems dubious at best.

  19. TM says:

    Thank you for writing this article.

    The CDC has been missing at several prominent national/ international conferences this last year.

    Dr. Reeves needs to leave the CDC and a new director needs to be appointed. His definition of CFS patients are those who have been “unwell” with vague symptoms for a month, not myself and many others who came down with a flu-like illness and have been sick for years, if not decades. It’s like comparing people who’ve had a cough for a few days due to a cold to people who have had a persistent cough for years due to developing lung cancer. Apples and oranges. It’s not just a political thing, it’s simply bad science.

    And people have died, some from unusual cancers. I hope the CDC realizes it has blood on its hands.

    I will be sending your article to our local news outlets and suggest others do the same.

  20. Sandy Cooley says:

    It seems pretty evident that not only does Reeves not care about the people who have been suffering for decades with severe physical symptoms and disability, but he also seems to be fighting against them, my husband included who has been 98-100% bedridden for over TWENTY YEARS now! Please do everything you can to get him out of there ASAP! Thanks for your help with this.

  21. if says:

    Congratulations. This is the best reporting I’ve seen on any aspect of ME/CFS, not only on Bill Reeves and the CDC. How refreshing to read an article written by someone who has done sufficient research to write an accurate informed article.

    I hope the author will continue to write on different aspects of ME/CFS. You’ve wetted my appetite for more good journalism.

  22. Ken Aldermann says:

    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.

  23. Ken Aldermann says:

    I hunted and found the Defreitas paper from 1990/91 that the NIH and CDC took funding away from. Is it possible that *this* study is the same virus as the XMRV or the beginings of finding this new virus? If it is the same virus and the WPI people can duplicate it as they said they would try to, then there is hard core proof that the CDC and NIH both knew a virus was out there and a possible cause of CFIDS.
    I got CFIDS in 1994. If they had been able to do their research and get to a reasonable point where the antivirals and HIV medicines could have been used on us sick to stop the spread of this virus, then I and millions will be furious. As far as the implications for cancer, like the aggressive prostate cancer that they know XMRV causes, would this old study on this virus also have been helpfull for cancer too? Is this what the person before me is aiming at?
    ———————————————————————————————————–
    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.

  24. Sarah McGroarty says:

    Wow. Just found this cdc link from Hilary Johnsons site. I read the comments from the old cdc chatter forum and i did not see any real personal attacks. i did see people unhappy about their work situation at cdc. I think these peope are mad and know that something is wrong with the cfs group people. I did see mean comments from cdc people about cfs. I guesss some of the cdc folks still think that cfs is not real. But how does a person explain the new virus that the Whitemore people found?
    My son is an internist and he watched Dr. Petersons presentation. He said that Dr. Peterson was on to something and that the cdc can not fight it. I hope this is true since my daughter has been sick in bed for 10 years and she was going to be a doctor to. Not fair to her since she worked so hard to go to medical school and then got sick. Thank the Good Lord that her brother could take care of her.

    I hoep that the people who did wrong things at the cdc get whats coming to them. Maybe jail.
    I am going to do what mrs. Whitemore said to do and have my son write letters to the president, congress and other top people so that they look inot the cdc and the cdc and cfs program and that evil reeves.

  25. Lena Jaworski Meehan says:

    I hope it is ok to put this out on this site. 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.”

  26. Lena Jaworski Meehan says:

    Again I hope I don’t get into trouble or do something wrong for cutting and pasting good quotes from top experts from other people’s sites. i don’t know the “rules” but figured it might be ok if I tell where I got the quote. So this quote is from Dr. Paul Cheney, one of the two doctors in Incline Village during the outbreak cluster that the CDC only played games at. I also have great respect for Dr. Cheney and all that he has done for CFIDS at expense of his health (heart transplant) and the financial dire consequences he got into for taking care of the very sick for 25 years. He is in Asheville, NC and people travel from all over the world just to see him. Hope I didn’t do wrong by cutting and pasting. Thanks – LJM.
    ============================================
    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.”

  27. Cort says:

    Thanks for doing this piece. The travesty that has been the CDC CFS program over the past couple of years bear investigation. The CDC spent more money simply enrolling patients into a study of theirs than the WPI spent discovering the XMRV retrovirus that could explain this disease.

    Despite every professional organization asking for new leadership and a new approach to this illness and the CFIDS Association of America documenting enormous waste in the program the CDC administration has not budged an inch or even attempted to make a reply to the complaints.

    The program is broken and it needs to be fixed and I hope, for the sake of all of us, that you can continue to help illuminate the problems over there.

    Thanks for the article.

  28. Cort says:

    Thanks for doing this piece. The travesty that has been the CDC CFS program over the past couple of years bears investigation. The CDC spent more money simply enrolling patients into a study of theirs than the WPI spent discovering the XMRV retrovirus that could explain this disease.

    Despite every professional organization asking for new leadership and a new approach to this illness and the CFIDS Association of America documenting enormous waste in the program the CDC administration has not budged an inch or even attempted to make a reply to the complaints.

    The program is broken and it needs to be fixed and I hope, for the sake of all of us, that you can continue to help illuminate the problems over there.

    Thanks for the article.

  29. Cecelia Blair says:

    Thank you, atlanta unfiltered! I have suffered with CFS for many years—not Depression, which Reeves and his ilk have promoted. For me, the main hopelessness and despair associated with CFS has been the lack of effective research, interest and validation, all of which have their main source and ongoing feeding from Reeves and the CDC. Please continue to follow this story!

    Commenters and readers, I hope we will spread this news far and wide until there is finally good, scientific leadership at the CDC. With all their public money and institutional resources, and their mission of protecting the public health, the CDC led by Reeves has not been able to achieve in decades what a private group could do successfully in a small fraction of the time. What has been the difference? The will to achieve the goal: What is the cause and mechanism of CFS? How can we test for it, in a standardized way, and how can we treat it? The scapegoating of this patient population and projection of your own hopelessness onto us has been what Reeves and his ilk deserve to receive. Take back your own despair, own it, and hit the road, Jack!

  30. Marissa Jamison says:

    The stats below were taken from http://cfidswatch.blogspot.com/2009/10/horror-statistics-from-us-government.html – which I found reading Hillary Johnson’s great blog at her site http://www.oslersweb.com and then followed the link to this great site. Hope the smart person who did this research doesn’t mind me putting your work out here for others to see. Made me want to vomit and cry. Thank you for the research and analysis!.

    Saturday, October 31, 2009
    http://cfidswatch.blogspot.com/2009/10/horror-statistics-from-us-government.html
    Horror Statistics from the US Government
    From the CDC and NIH web sites:
    http://cfidswatch.blogspot.com/2009/10/horror-statistics-from-us-government.html

    Horror Statistics from the US Government
    From the CDC and NIH web sites:
    Number of people in the US with HIV or AIDS, diagnosed or undiagnosed: 1.1 million
    Number of new Lyme cases reported in the US between 1990 and 2008: 328,128
    Number of people in the US with CFS: 1+ million (tens of millions more have “similar fatiguing illnesses” but don’t meet the CDC’s strict “research” criteria)
    NIH money to be spent on HIV/AIDS research in 2010: $3 billion
    NIH money to be spent on Lyme disease research in 2010: $23 million
    *******NIH money to be spent on CFS research in 2010: $3 MILLION (yes, you read that right. One thousand times less than HIV/AIDS!)**********
    Number of categories getting more research money than CFS: 209
    Number of categories getting less research money than CFS: 2
    And yet…

    Dr. Nancy Klimas told the New York Times:
    My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

    I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. [emphasis added]
    I don’t mean to pick on HIV/AIDS and Lyme disease. (I was recently diagnosed with Lyme disease myself.) For perspective, here are some other examples of NIH funding categories for 2010:

    hay fever, $6 million
    Tourette Syndrome, $9 million
    Carcot-Marie-Tooth Disease, $13 million
    homelessness, $13 million
    methamphetamine, $70 million
    Small Pox, $98 million
    violence research, $191 million
    influenza, $212 million
    health effects of climate change, $300 million
    nanotechnology, $326 million
    tobacco, $326 million
    depression, $418 million
    obesity, $687 million
    networking and information technology R&D, $950 million
    drug abuse, $1 billion
    substance abuse, $1.8 billion
    health disparities, $2.7 billion
    bioengineering, $2.9 billion
    biotechnology, $5.5 billion
    What’s wrong with this picture?

  31. carla-nl says:

    One would think the HIV/AIDS drama would not repeat itself…

    The way patients with poorly understood complaints are treated around the WORLD is down-right criminal.

    If the CDC doesn’t step up and take it’s responsibility, it could take years for further progress to happen.

    Patients have already been suffering for years, if not decades! Enough is enough !

    Carla-NL

  32. Marissa Jamison says:

    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

  33. Tina Pi says:

    Thank you so much for this article!

  34. Kati D says:

    Thank you so much for your article. Patients with Chronic Fatigue need advocates just like you. Reeves and the CDC CFS department needs to be dismantled and replaced by people that will use exact scientific techniques, non biased opinions and accountable of the money they receive from government.

    More, Reeves need to be held accountable for his actions for many, many people have litterally lost their lives, disappeared from society, or even committed suicide because there has been no access to health care for them, or they were treated as psychiatric patients. I have hope that a class action suit occurs to provide some compensation for the patients and also criminal charges are pressed for Reeves for misuse of money, and refusal to see farther than his navel.

    Elaine De Frietas’ s study back in 1991 proved the contribution of a retrovirus in CFS. Should the CDV have used the exact same technique than she employed, all these sick people would have been in a better place today and research would have been this much farther.

    Please keep on digging for the truth- we need you

  35. Deborah A. Heard says:

    I want to say thankyou for this article. I cannot begin to thankyou properly. I have lost almost all of my sense of self to this illness inappropriately named CFIDS/ME.

    I was a national merit scholar, studied with the principal flutist of the Houston Symphony for 10 years, tested higher on the English portion of the entrance exam than had anyone in the history of the university where I was accepted, the very university from which I never graduated. I lost my husband, my default career as a journalist… to this illness apparently intentionally and heinously trivialized by the likes of Reeves, the CDC and others who are intentioanlly or otherwise complicit. Even more than the faltering of my own self-respect, my single greatest trauma is that I could not be a good mother to my children.

    I’ve endured much emotional trauma and physical torture, unnecessary and damaging medical treatment due to the fact that I’ve been dismissed as a malingerer. In order to even get disability status, I had to have an ‘exploratory’ craniotomy so that the medical community could say, “Hey, yeah: we gave her a head injury and subsequently, no, we can’t say that there really IS nothing wrong with her…”. I had sought help at a teaching hospital and believed them when they said I needed this surgery. Now, I know that I did not. I know that many doctors ‘just wanna have fun’. This discovery can make you stop breathing for a moment, until survival instinct makes you inhale.

    Now, I have a neurologist who says he wants nothing to do with me, but he alone has been honest with me per his experience with his own CFS clients. He said in parting comment, ” All we know is that these patients ( CFS patients) do not heal properly, so don’t have back surgery”. In fact, what he was saying is that standard medical procedures that completely disregard a serious pathology, a pre-existing physiological illness can have significant, life altering, permanent effects. And yet, medicine as practiced is fine, more than fine, with crippling me and adding to my suffering.

    Physicians, first, do no harm.

    We need help out here.

    So again, thanks: “Noticeably absent from our 2009 meeting was the senior leadership from the CDC CFS research program.”

    I look forward to Reeves censure and removal, and to the total restructuring /renaming of the CDC CFS progam . The possibility of a retrovirus in the blood supply may be motivating. We can only hope.

    An appropriate response to the findings per XMRV is imperative.

    For more info: wpinstitute.org

    Sincerely, Deborah A. Heard ( aka bluebird )

  36. Marian Smartt says:

    Brilliant, easily understood article of the corruption at CDC. Reeves is a criminal. While over a million of us have lost our very lives. We want our lives back. Thank you for exposing the truth. Please keep writing to help us.

  37. Jackie says:

    Thank you for writing this. Please do not stop holding CDC feet to the fire. Too many have been sick for too long and the answers must be found. Keeping a lid on this research and what it represents continues this government’s criminal cover-up of what these chronic disorders could be or really are.

    When is someone going to really open the Pandora’s box and look at how these viruses entered the human population in the 50’s and what some vaccines are still doing.

    Look at this too…

    http://articles.mercola.com/sites/articles/archive/2009/11/03/What-We-Have-Learned-About-the-Great-Swine-Flu-Pandemic.aspx

  38. Sarah says:

    Thanks for writing this. Reeves and the CDC need to be exposed.

  39. Libby Boone says:

    Please keep it up! The ME/CFS community needs the support of enthusiastic journalism. Long live a truly free press that is not tied to the apron springs of vested interest.

  40. Keith Baker says:

    William reeves has done nothing bit hurt people with CFS greatly. As a sufferer of 22 years I have watched his close-minded and biased aproach to CFS destroy the CDC research effort and wast the largset sum of money in the world devoted to the study of CFS. I believe he spent over a million dollars just to find cases for a study with a revised case definition that is so watered down it includes people who do not eveb have the illness! He is now studying depressed patients as much as he is studying our disease. He refuses to look at viruses in CFS and refuses to listen or collaborate with outsude researchers. He needs to be removed now!

  41. John says:

    Where was CDC you ask? I’ll tell you where.

    While the WPI was busy collaborating with the Cleveland Clinic and the NCI on the discovery of an infectious retrovirus, CDC’s CFS program head Dr. Reeves was at government advisory committee meetings(1,2) and appearing on Georgia public tv(3) saying that CDC viewed CFS to be an ‘illness'(specifically differentiated from disease), which affects the ‘female gender'(again, specifically differentiated from female sex, which is known to be more prone to autoimmune disease, Multiple Sclerosis, etc.) and which possibly occurs ‘because women are treated differently than men in society’.

    Dr. Reeves and the CDC CFS program were also planning Cognitive Behavior Therapy and Graded Exercise Therapy(CBT/GET) trials, with the CBT portion being employed in an effort to change the patient’s ‘abnormal illness beliefs'(ie the patient’s belief that they actually are ill as opposed to suffering from the behavorial disorder the CBT therapist believes them to be) and the GET being used to rid patients of their ‘phobic avoidance of exercise’. No matter that several dozen studies have shown CFS patients to suffer a wide range of abnormal effects due to exercise, with decreased blood flow to the brain, increased complement activation and abnormal muscle membrane excitability among the many documented abnormalities shown, according to CDC it’s all due to the patient being a worrywort!

    It is worth noting that proponents of CBT for ME-CFS say that it is used in many other physical illnesses. However Dr. Charles Shepard, medical advisor to the ME Association, calls this argument ‘disingenuous’, stating- “I think there’s a certain degree of empire building going on here amongst the psychiatric and psychological professions. CBT seems to be sort of moving into all kinds of illnesses…It is used for physical things and this is perhaps the argument that NICE would make – that it’s used sometimes with the management of cancer and serious physical illnesses like Multiple Sclerosis. But I think this argument is disingenuous, it’s not a primary form of treatment there as is being recommended for people with ME CFS and if you went along to a cancer specialist and were just offered CBT as the primary form of treatment you’d be quite horrified, in fact you’d probably think you were being treated with medical negligence.”(4)

    These and other ‘faulty illness beliefs’ held by CDC might be due in part to their longstanding relationship with Peter White, a UK psychiatrist who is similarly despised by English ME-CFS patients. It was Prof. White who CDC CFS Research Program chose to be on a recent peer-review panel which gave CCRP a glowing review, despite Dr. Reeves’ previously stating that CDC already had plans on collaborating with Prof. White on these upcoming CBT/GET trials. Nice touch, eh? You scratch my back, I’ll scratch yours. It is also worth noting that the Scottish Parlimentary Cross Party Group on ME had the following to say about Prof. White’s ongoing PACE trial in the UK- “PACE Trial – The CPG expressed considerable concern regarding the expense, effectiveness and scientific validity of this trial.”(5) Hmmm, questions about wasted money, lack of effectiveness and even fundamental scientific validity- what CFS program have I heard these questions about before…?

    1.http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac070516min.html

    2.http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac071128min.html

    3.http://www.gpb.org/georgiaweekly/2007/12/30
    http://sacfs.asn.au/news/2009/09/09_26_transcript_dr_reeves.htm

    4.http://www.bbc.co.uk/radio4/youandyours/transcripts_2007_45_wed_03.shtml

    5.http://www.healthscotland.com/uploads/documents/9715-Report%20-%20National%20Consultation%20Final.pdf

  42. Marsha Cohen McGee says:

    Guys: I know we are all living pretty close to the edge financially. When I got sick my family lost 60% of our income and that money was not for trips or big screen TVs or lavish foolishness. That income was for the house payments, the car, food, clothes, school supplies – the basics of life. My kids have suffered and they do fear that if something happens to their Dad’s job, we could be in the street. That’s not fair to kids to fear living in the streets or shelters. The only other place we might be able to go is to my mother’s tiny home in a state that is about 600 miles away from our current home and friends. Better than the streets but too much uprooting for kids.
    Anyway, we cut back on some things, used more coupons, bartered for things, and saved up some money to send to the Whittemore-Peterson Institute because we felt that if we did not donate to them they would not have the resources to continue to make magic. And we need magic now to get better. So, if possible, donate what you can. However little the amount these people seem to do a great deal with very little money, which we can’t say for the CDC and the $100 million they wasted (or stole, who knows).
    Go to the WPI site and donate whatever you can http://www.wpinstitute.org/ . The more they get, the quicker we can get tests and cures and protect our children, grandchildren and all the others that will be getting ME – or cancers and terrible diseases, as some of the research is pointing at.
    Anyway, thank you for putting this info out for all of us. Please continue to dig up dirt on the CDC and help all of us sick to get rid of William Reeves and change the course of the CDC’s research – big time.

  43. Amy Kritz says:

    The history of this disease is one of shocking and disgraceful medical malfeasance. The fact that the single most common symptom in all medicine was actually used as a purported description of it, and that it has continued to be trivialized with the name ‘Chronic Fatigue Syndrome’ for more than two decades, is almost unbelievable.

    Reeves and others of his ilk — Wessely, Manu, etc. — have managed to ignore thousands of peer-reviewed medical journal articles that document the numerous organic abnormalities of this disease, e.g., low natural killer cell function. For a time, I had NO natural killler function at all, zero, zip, nada — and nearly died of opportunistic infections. And yet I have had to read about ‘illness perceptions’, and listen to snickering about malingerers.

    For many of us, our prime working years, the years in which we might have had a family, have been devoured by this disease while the very federal agencies that are charged with protecting us shrugged off an epidemic.

    Thank you so much for this excellent article.

  44. Susan Magowitz says:

    Thank you for covering this story. Many of us believe that there is no rational explanation for the CDC’s CFS “research” over the last 20 years. Reeves and the CDC must be investigated again for possible illegal activity with CDC/CFS contractors (Emory University’s Mind-Body Program and ABT Associates). Reeves most recent attempt to prove CFS patients are genetically deficient “somatizers” precipitated a spending spree of millions of taxpayer dollars. Many people wonder how much Reeves himself has benefited from these government contract awards. Reeves also may have connections with the insurance industry, medical and/or disability, that motivates his desire to cover-up the physical markers of CFS. Or, it could be a cover-up of the cancer causing retrovirus let loose in the nation’s blood supply and perhaps first discovered in 1991? The public can’t know what is behind the CDC’s inaction because the media has not covered the story.

  45. Alyson says:

    Thank you for this article! Keep up the great work.

  46. Wolf says:

    Finally someone is telling the truth. You have scooped all the major papers. This is only the very tip of the iceberg. Please dig deeper and expose the full picture of the CDC’s neglect. Millions of people have become infected with a virus likely to cause a terrible illness because of the CDC’s failure to deal with reality. They have caused this discovery to be delayed by almost twenty years.

  47. Patricia says:

    This is a scandal of epic proportions, and Bill Reeves and his friends at the CDC are the perpetrators. Because they have spent CFS research time and money irresponsibly, they have caused CFS sufferers like me 20 years of our lives, and now we are discovering that they have put the blood supply in the US in jeopardy of transmitting XMRV virus to many millions of people. Blaming the sufferers has not done away with the disease and never will.

    Something needs to be done to Bill Reeves and the CDC, and it needs to be done NOW!

    Thank you for writing this article.

  48. W4TC says:

    THANK YOU for writing this!!! Reeves absolutely must go, and should be held accountable for his actions, or lack thereof, as head of the CFS program. He has done absolutely nothing to further genuine biophysical research in the many years he’s been at the CDC, and sits idly as the lives of many of us are lost.

  49. Alana says:

    Patricia noted that this is “a scandal of epic proportions, and Bill Reeves and his friends at the CDC are the perpetrators.” I could NOT agree more! I also think that we may also see that this XMRV virus turns out to be one of the major medical discoveries of this decade or even, dare I say, century. This virus may be the key or as Dr. Bell calls it “The Puppet Master” for all or many cancers, major diseases, and of course – CFIDS. NOW that would be a massive medical and scientific find. I hope it turns out that this virus is the key to the CFIDS lock and also the key to other cancers and diseases.
    We would have to put the Whittemore family, Dr. Peterson, Dr. Mikovits, and the rest of the smart people at the NCI and Clevland Clinc — as well as Dr. Cheney, Dr. Bell, Dr. Klimas, Dr. Kerr, Dr. Rowe and several other doctors/researchers who have been in this game for a long time and taken massive hits personally, physically, financially to HELP US. God bless them for being the Saints Among Us.
    See Hillary Johnson’s great blog at http://www.oslersweb.com and also the CDC website for screaming about the CDC BY the CDC people at http://www.cdcchatter.net.
    Great reporting – thank you for this. Alana and Ron and 8 cats!

  50. Maxine Weldman says:

    Thank You, Thank You, Thank You, Thank You, Thank You

    Maxine