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FDA/NIH XMRV paper ON HOLD

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by CBS, Jun 29, 2010.

  1. caledonia

    caledonia

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    I signed the petition. It was very easy. It will also go to your Senators and Congressmen.
  2. LaurelW

    LaurelW Senior Member

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    When I got my blood drawn for these studies around the same date as CBS, Dr. Kathy Light told me that they expected I would get the results of XMRV + or - within two months. That was a month ago, and haven't been to Dr. B. lately to ask her if she knows what's going on. Am waiting with (literally) bated breath.
  3. glenp

    glenp "and this too shall pass"

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  4. Otis

    Otis Señor Mumbler

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    According to Mindy Kitei @ CFS Central the 80% and 7% numbers for the NIH study hold up with a New England cohort.

    and

    So the CDC nailed the negative controls.

    Discussion on her latest blog post is here.
  5. George

    George waitin' fer rabbits

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    Yeah, the same numbers are on Chris's blog CFS patient advocate. I don't know where they are getting them from though so I just list the numbers as rumor for now. Sure hope we get some more reliable news soon! WOOF! WOOF!
  6. muffin

    muffin Senior Member

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    Sorry guys but I am still quite convinced that this IS a conspiracy and now that we do have the Internet and the super-sonic fast moving news and openess it brings, the CDC bull$hit is finally out in the open for all to see. Remember, the CDC played games with CFIDS and Retrovirus research for 30 years - before the Internet and before they could really be caught and held out in public for all to see. So we are NOW finally begining to see what they have been up to for all those years. Only now. Wait until this really blows up on the CDC. I also expect the HHS/NIH to be caught in the cross fire as well.

    The CDC coming back with negatives when other highly regarded organizations come back with positives says they are still thinking they can get away with their game and cover-up. That's called stupidity and hubris where I come from! In the end, I bet my horse that the CDC has been covering something up on Retroviruses and maybe other things for themselves or other civilian and/or military organizations and that would include the frontmen sociopaths (Weasel, et al) in the UK.

    The CDC will be caught and their very, very dirty laundry will be out there for ALL to see. Say bye bye to the CDC for disabling/killing and covering up things they should have been dealing with or maybe NOT dealing with.
  7. muffin

    muffin Senior Member

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    DannyBex found the 2009 NIH "Virus Linked to CFS" (here in full, since I am shocked)

    October 19, 2009

    Virus Linked to Chronic Fatigue Syndrome
    Scientists have detected the DNA of a retrovirus in the blood of patients with chronic fatigue syndrome. The discovery raises the possibility that the virus may be a contributing factor in chronic fatigue syndrome.


    XMRV virus particles seen by transmission electron microscopy. Image courtesy of University of Utah Health Sciences Public Affairs.Chronic fatigue syndrome, or CFS, is a debilitating disease that affects millions of people in the United States. It's characterized by profound fatigue that doesn't improve with bed rest and can be exacerbated or re-kindled by physical or mental activity. A number of other symptoms are also associated with CFS, including cognitive deficits, impaired sleep, myalgia, arthralgia, headache, gastrointestinal symptoms and tender lymph nodes.

    No specific cause for CFS has yet been identified. However, patients with CFS are known to have some abnormalities in their immune system. Recently, scientists found evidence of a virus called xenotropic murine leukemia virus-related virus, or XMRV, in the tumors of patients with prostate cancer. Some patients with XMRV-positive prostate cancer were reported to have a specific immune system defect that was also seen in CFS patients. Suspecting a link between the virus and CFS, a team of scientists from the Whittemore Peterson Institute at the University of Nevada, NIH's National Cancer Institute (NCI) and the Cleveland Clinic set out to look for the virus in blood samples.

    The scientists identified DNA from XMRV in the blood cells of 68 of 101 (67%) CFS patients, as reported in the online edition of Science on October 8, 2009. In contrast, the blood of only 8 out of 218 healthy people (3.7%) contained XMRV. Blood cells not only contained XMRV DNA, but also expressed XMRV proteins and produced infectious viral particles.

    The researchers also found that XMRV stimulates immune responses in people with CFS. Plasma from 9 out of 18 CFS patients infected with XMRV reacted with a viral protein, whereas none of the plasma from 7 healthy donors showed a reaction.

    "These compelling data allow the development of a hypothesis concerning a cause of this complex and misunderstood disease, since retroviruses are a known cause of neurodegenerative diseases and cancer in man," says Dr. Francis Ruscetti of NCI, who worked on the project.

    Retroviruses like XMRV have also been shown to activate a number of other latent viruses. This could explain why so many different viruses, such as Epstein-Barr virus, have been associated with CFS.

    The researchers cautioned, however, that while this study found an association between XMRV and CFS, further work will be needed to determine whether XMRV truly contributes to the development of CFS.

    "The discovery of XMRV in 2 major diseases, prostate cancer and now chronic fatigue syndrome, is very exciting," says Dr. Robert H. Silverman, a co-author at the Cleveland Clinic. If a role for XMRV is established, there could be new opportunities for prevention and treatment of these diseases.

    Related Links:
    Chronic fatigue syndrome:
    http://orwh.od.nih.gov/cfs/aboutcfs.html
  8. muffin

    muffin Senior Member

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    OTIS: Way good catch on this one to Hillary. I sent her the links and text this morning to ensure she saw it. You are one fast Dude!!!
    Let's see what Hillary says about this one.
    Has WPI said anything yet?
    What about CAA? Or have they not yet gotten out of bed with the CDC?
  9. muffin

    muffin Senior Member

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    Switzer was involved in research on two new retroviruses (2005) Curious

    May 16, 2005

    Two New RetrovirusesTransmitted from AnimalsIdentified
    in Humans

    http://www.jhsph.edu/publichealthnews/press_releases/2005/wolfe_htlv.html

    Nathan Wolfe, DSc
    Findings Demonstrate Need for Pathogen and Disease Surveillance of Bushmeat Hunters

    A team of researchers from the Johns Hopkins Bloomberg School of Public Health, the Centers for Disease Control and Prevention (CDC), and the Army Health Research Center (CRESAR) in Cameroon have discovered two new retroviruses among central Africans who hunt nonhuman primates. The viruses, which have been named Human T-lymphotropic Virus types 3 and 4 (HTLV-3 and HTLV-4), belong to a genus of viruses known to spread and cause serious illness in humans. The researchers believe the findings demonstrate the need to regularly survey those human populations known to be in contact with animals for new infectious diseases emerging from animals. The study, which was first reported at the 12th Conference on Retroviruses and Opportunistic Infections, is now published in the May 16, 2005, Online Early edition of the Proceedings of the National Academy of Sciences.

    The emergence of HIV from primate origins has cost millions of lives and billions of dollars. The discoveries of HTLV-3 and HTLV-4 show that, far from being rare events, retroviruses are actively crossing into human populations, said the studys lead author Nathan Wolfe, DSc, assistant professor in the Department of Epidemiology at the Bloomberg School of Public Health.

    The research team collected and examined blood samples from more than 900 people living throughout Cameroon. All the individuals studied reported some exposure to blood and body fluids of nonhuman primates, contact mostly due to hunting and butchering of bushmeat, and in some cases to keeping primates as pets. An analysis of the blood samples determined that multiple simian viruses had crossed over from primates to infect the study participants. In two hunters, the researchers identified HTLV-3 and HTLV-4, the two previously unknown viruses.


    HTLV-3 is similar to the simian virus STLV-3, and was most likely contracted through direct contact with a primate during hunting. HTLV-4 does not have a known primate counterpart and could have arisen through cross-species transmission from an animal carrying an unknown form of STLV. According to William Switzer who led the CDC laboratory team, researchers were surprised at the amount of HTLV diversity seen crossing into persons exposed to primates, as the identification of HTLV-3 and HTLV-4 essentially doubles the number of human viruses in this group. Switzer believes further research to understand the disease outcomes of these viruses and the potential for human to human transmission is also crucial.

    The current study follows an earlier one conducted by Dr. Wolfe and researchers from the Cameroon Ministry of Health and CDC, which described the discovery of another primate retrovirus in hunters, the simian foamy virus (SFV) in the March 20, 2004, edition of The Lancet. While it is still not known if SFV is harmful to humans or can be transferred from person to person, together with the current report, the results show clearly that hunting is an important bridge for the entry of novel retroviruses into humans.

    Ongoing collaboration with hunters in central Africa gives us the potential to predict and prevent disease emergence. Given the incredible potential costs of a new human retrovirus into the general population, the development of sentinel systems for forecasting disease emergencesuch as long-term surveillance of huntersshould be seen as a human health imperative, said Dr. Wolfe.

    Emergence of novel primate T-lymphotropic viruses among central African bushmeat hunters was written by Nathan D. Wolfe, Walid Heneine, Jean K. Carr, Albert D. Garcia, Vedapuri Shanmugam, Ubald Tamoufe, Judith N. Torimiro, A. Tassy Prosser, Matthew LeBreton, Eitel Mpoudi-Ngole, Francine E. McCutchan, Deborah L. Birx, Thomas M. Folks, Donald S. Burke and William M. Switzer.

    Funding was provided in part by grants from the U.S. Military HIV Research Program, the National Institutes of Health Fogarty International Center, and AIDS International Training and Research Program. Additional funding was provided by the National Geographic Societys Committee for Research and Exploration and the Johns Hopkins Bloomberg School of Public Health Center for AIDS Research.

    Public Affairs Media Contacts for the Johns Hopkins Bloomberg School of Public Health: Tim Parsons or Kenna Lowe at 410-955-6878 or paffairs@jhsph.edu.
  10. kurt

    kurt Senior Member

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    Well, I have worked in a government lab, and in fact what is happening is exactly how science works in government sponsored labs. Getting any paper published is tortuous when you are a government scientist because there several added layers of review. You basically have to get everything approved through the journal reviewers and editors, and also send it up the chain of command to your agency's scientific review board (SRB), and also there is often an administrative and still another internal editorial review. If there are ANY issues that are complicated and will reflect on the agency, the paper will be sent to other offices, and the whole process is like playing ping-pong where your opponent is a team of rotating players.

    There does not need to be any conspiracy for what is happening, this is ordinary, how science works in government research labs.

    Nope, this is very believable, in fact it is business as usual. The only reason we are surprised in the CFS world is that we are new at this, have not had this level of attention to studies related to CFS before. There is NOTHING unusual going on here. When you have multiple labs working for different agencies and a parent agency gets involved, this is just how things play out. In fact there are far too many players involved here for any type of rational conspiracy to be in operation, just would never work. Too many differing opinions.

    I find this easy to believe, do you know the size of these organizations? The CDC has an enormous campus in Atlanta, CDC groups don't necessarily even know what other CDC groups are doing, let along other agencies like the FDA. Even WPI says they had NO IDEA that the FDA study was going on, the first they heard of it was this leak. I expect it was when the papers went up the approval chain that someone at HHS connected the dots, or possibly researchers from both groups were in a working group together and only after the papers were submitted did one of the groups 'reveal their hand'.

    Not true, the CDC group involved is the retrovirology group, they are not connected in any way to the CFS group, and in fact the retrovirology group would love to find XMRV in CFS patients. They have no reason not to find XMRV, they will report what they found, and I have heard they ran a LOT of different tests on multiple sample groups.
  11. George

    George waitin' fer rabbits

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    Kurt, sweety, sometimes I think you make things up. Either that or you worked on a whole different planet. (grins) But I love ya Woof!
  12. kurt

    kurt Senior Member

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    No, this is not being made up and in fact, the govt lab I worked at was in south-central Texas, not far from you probably, PM me and we can chat about that. These govt groups are not sitting around saying 'how can we continue to hinder progress in CFS research?'

    However, don't get me started on incompetence, I could go on all day about that problem in the govt.

    The fact is that the real science here may be in conflict, meaning there are some things the researchers just do not know yet. Some of this is very hard to explain for those who are actual experts in the field.
  13. Revday

    Revday

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    I cut my political teeth during the Vietnam Conflict, so I have what y'all might call A History.
    Question: Do government officials lie? Answer: Are you kidding me? Where have you been for the last ten -thirty years? Although I am too sick to join in fully I needed to say that.
    What I know for sure is that this roller coaster ride is too stressful and that Yes Virginia, the government will and does lie to We the People. In spades. Without rational or clean justification. So what ever one says about cooler heads and reason, history has shown that politics trumps truth. Unless, we sit our wheelchairs and wait for government officials to do the Right Thing?

    Would be ROTFLMAO if I didn't have to go throw up. God I'm so sick.
  14. Sean

    Sean Senior Member

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    What Kurt said.

    That is how it really works.

    There is no need to get all worked up over unproductive conspiracy theories.
  15. VillageLife

    VillageLife Senior Member

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    These are strange days, days we will all look back on one day!!

    It's all a journey.........

    It's being reported now that 80% is the figure we're looking at with the NIH/FDA study - it's a real hopeful result! They will have to tell all those 80% there results, so this isn't going away!
  16. alex3619

    alex3619 Senior Member

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    Hi Sean

    But this doesn't mean we shouldn't be applying public pressure. Business as usual can still be challenged.

    Bye
    Alex

  17. Melodie

    Melodie Guest

    re: possible letter to the Australian Health Minister

    Hi Alex

    You must have been up all night drafting this?!! Overall IMHO I think this is basically very good and that it should have its own thread as it is likely to be overlooked here. I have read it only once and can barely read at the moment let alone critically so am not in a position to make any constructive comments.

    Thanks

    Melodie
  18. Lesley

    Lesley Senior Member

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    From the CAA on Facebook:

    ETA: Note that according to the WSJ article, the spokesperson for the journal says it was accepted for publication. The Science article also indicates it was accepted for publication.
  19. muffin

    muffin Senior Member

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    And AGAIN...

    The CDC and who ever else is involved were doing this stuff going back 30 plus years. And now the dirt is coming out via the Internet.

    YES, the government does lie to us. Yes! Our government does do experiments on us without our knowledge or consent. Can we say Tuskegee Syphilis Experiment?? So, for those too young to remember or know about this one, here it is for your reading displeasure.
    ======================================================

    The Tuskegee Syphilis Experiment http://www.infoplease.com/ipa/A0762136.html

    The United States government did something that was wrongdeeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens. . . . clearly racist.
    President Clinton's apology for the Tuskegee Syphilis Experiment to the eight remaining survivors, May 16, 1997

    For forty years between 1932 and 1972, the U.S. Public Health Service (PHS) conducted an experiment on 399 black men in the late stages of syphilis. These men, for the most part illiterate sharecroppers from one of the poorest counties in Alabama, were never told what disease they were suffering from or of its seriousness. Informed that they were being treated for bad blood,1 their doctors had no intention of curing them of syphilis at all. The data for the experiment was to be collected from autopsies of the men, and they were thus deliberately left to degenerate under the ravages of tertiary syphiliswhich can include tumors, heart disease, paralysis, blindness, insanity, and death. As I see it, one of the doctors involved explained, we have no further interest in these patients until they die.

    Using Human Beings as Laboratory Animals
    The true nature of the experiment had to be kept from the subjects to ensure their cooperation. The sharecroppers' grossly disadvantaged lot in life made them easy to manipulate. Pleased at the prospect of free medical carealmost none of them had ever seen a doctor beforethese unsophisticated and trusting men became the pawns in what James Jones, author of the excellent history on the subject, Bad Blood, identified as the longest nontherapeutic experiment on human beings in medical history.

    The study was meant to discover how syphilis affected blacks as opposed to whitesthe theory being that whites experienced more neurological complications from syphilis whereas blacks were more susceptible to cardiovascular damage. How this knowledge would have changed clinical treatment of syphilis is uncertain. Although the PHS touted the study as one of great scientific merit, from the outset its actual benefits were hazy. It took almost forty years before someone involved in the study took a hard and honest look at the end results, reporting that nothing learned will prevent, find, or cure a single case of infectious syphilis or bring us closer to our basic mission of controlling venereal disease in the United States. When the experiment was brought to the attention of the media in 1972, news anchor Harry Reasoner described it as an experiment that used human beings as laboratory animals in a long and inefficient study of how long it takes syphilis to kill someone.

    A Heavy Price in the Name of Bad Science
    By the end of the experiment, 28 of the men had died directly of syphilis, 100 were dead of related complications, 40 of their wives had been infected, and 19 of their children had been born with congenital syphilis. How had these men been induced to endure a fatal disease in the name of science? To persuade the community to support the experiment, one of the original doctors admitted it was necessary to carry on this study under the guise of a demonstration and provide treatment. At first, the men were prescribed the syphilis remedies of the daybismuth, neoarsphenamine, and mercurybut in such small amounts that only 3 percent showed any improvement. These token doses of medicine were good public relations and did not interfere with the true aims of the study. Eventually, all syphilis treatment was replaced with pink medicineaspirin. To ensure that the men would show up for a painful and potentially dangerous spinal tap, the PHS doctors misled them with a letter full of promotional hype: Last Chance for Special Free Treatment. The fact that autopsies would eventually be required was also concealed. As a doctor explained, If the colored population becomes aware that accepting free hospital care means a post-mortem, every darky will leave Macon County Even the Surgeon General of the United States participated in enticing the men to remain in the experiment, sending them certificates of appreciation after 25 years in the study.

    Following Doctors' Orders
    It takes little imagination to ascribe racist attitudes to the white government officials who ran the experiment, but what can one make of the numerous African Americans who collaborated with them? The experiment's name comes from the Tuskegee Institute, the black university founded by Booker T. Washington. Its affiliated hospital lent the PHS its medical facilities for the study, and other predominantly black institutions as well as local black doctors also participated. A black nurse, Eunice Rivers, was a central figure in the experiment for most of its forty years. The promise of recognition by a prestigious government agency may have obscured the troubling aspects of the study for some. A Tuskegee doctor, for example, praised the educational advantages offered our interns and nurses as well as the added standing it will give the hospital. Nurse Rivers explained her role as one of passive obedience: we were taught that we never diagnosed, we never prescribed; we followed the doctor's instructions! It is clear that the men in the experiment trusted her and that she sincerely cared about their well-being, but her unquestioning submission to authority eclipsed her moral judgment. Even after the experiment was exposed to public scrutiny, she genuinely felt nothing ethical had been amiss.

    One of the most chilling aspects of the experiment was how zealously the PHS kept these men from receiving treatment. When several nationwide campaigns to eradicate venereal disease came to Macon County, the men were prevented from participating. Even when penicillin was discovered in the 1940sthe first real cure for syphilisthe Tuskegee men were deliberately denied the medication. During World War II, 250 of the men registered for the draft and were consequently ordered to get treatment for syphilis, only to have the PHS exempt them. Pleased at their success, the PHS representative announced: So far, we are keeping the known positive patients from getting treatment. The experiment continued in spite of the Henderson Act (1943), a public health law requiring testing and treatment for venereal disease, and in spite of the World Health Organization's Declaration of Helsinki (1964), which specified that informed consent was needed for experiment involving human beings.

    Blowing the Whistle
    The story finally broke in the Washington Star on July 25, 1972, in an article by Jean Heller of the Associated Press. Her source was Peter Buxtun, a former PHS venereal disease interviewer and one of the few whistle blowers over the years. The PHS, however, remained unrepentant, claiming the men had been volunteers and were always happy to see the doctors, and an Alabama state health officer who had been involved claimed somebody is trying to make a mountain out of a molehill.

    Under the glare of publicity, the government ended their experiment, and for the first time provided the men with effective medical treatment for syphilis. Fred Gray, a lawyer who had previously defended Rosa Parks and Martin Luther King, filed a class action suit that provided a $10 million out-of-court settlement for the men and their families. Gray, however, named only whites and white organizations in the suit, portraying Tuskegee as a black and white case when it was in fact more complex than thatblack doctors and institutions had been involved from beginning to end.

    The PHS did not accept the media's comparison of Tuskegee with the appalling experiments performed by Nazi doctors on their Jewish victims during World War II. Yet in addition to the medical and racist parallels, the PHS offered the same morally bankrupt defense offered at the Nuremberg trials: they claimed they were just carrying out orders, mere cogs in the wheel of the PHS bureaucracy, exempt from personal responsibility.

    The study's other justificationfor the greater good of scienceis equally spurious. Scientific protocol had been shoddy from the start. Since the men had in fact received some medication for syphilis in the beginning of the study, however inadequate, it thereby corrupted the outcome of a study of untreated syphilis.

    In 1990, a survey found that 10 percent of African Americans believed that the U.S. government created AIDS as a plot to exterminate blacks, and another 20 percent could not rule out the possibility that this might be true. As preposterous and paranoid as this may sound, at one time the Tuskegee experiment must have seemed equally farfetched. Who could imagine the government, all the way up to the Surgeon General of the United States, deliberately allowing a group of its citizens to die from a terrible disease for the sake of an ill-conceived experiment? In light of this and many other shameful episodes in our history, African Americans' widespread mistrust of the government and white society in general should not be a surprise to anyone. BB

    1. All quotations in the article are from Bad Blood: The Tuskegee Syphilis Experiment, James H. Jones, expanded edition (New York: Free Press, 1993).
  20. Otis

    Otis Señor Mumbler

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    I can completely understand the fact that the left hand and right hand are completely disconnected and the gauntlet one must run to get a paper published. I'm not unfamiliar to being a cog in the machinery of government programs - I did it for decades myself.

    But when I get queasy is when the show goes on the road to DC and the autocrats start playing power games and deciding the fate of discrepancies rather than letting the science work itself out.

    I would find it hard to believe that it's typical for the DHHS to be the place where the music stops. To quote the WSJ "In an email between scientists familiar with the situation, viewed by the Wall Street Journal, a researcher said the two teams were asked to put their papers on hold because senior public-health officials wanted to see consensusor at least an explanation of how and why the papers reached different conclusions, said the people familiar with the situation." Consensus comes from 10 or more papers not two. Do they expect to distill this all down to something the President can understand in a 5 minute briefing? WTF, Over?

    "Senior public health officials" aren't going to make any meaningful scientific decisions, nor should they.

    For a typically understated vet of the government and scientific circles like John Coffin to say "It's fair to say it's not a usual kind of thing" this is not just the review process as it normally works.

    Sorry, not buying it.

    Let my papers go!

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