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EVALUATING EMERGING INFECTIOUS DISEASES (EIDs) FOR TRANSFUSION SAFETY: TRANSCRIPTS

Discussion in 'XMRV Testing, Treatment and Transmission' started by hidlyn, May 30, 2010.

  1. hidlyn

    hidlyn

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    It's not looking good that anyone in power is taking XMRV seriously enough in this country to do something about the blood supply. The quote below if from the published transcript of a recent meeting with the FDA.
    http://www.fda.gov/downloads/Biolog...ts/WorkshopsMeetingsConferences/UCM214030.pdf


    UNITED STATES FOOD AND DRUG ADMINISTRATION CENTER FOR BIOLOGICS EVALUATION AND RESEARCH

    EMERGING INFECTIOUS DISEASES: EVALUATION TO IMPLEMENTATION FOR TRANSFUSION AND TRANSPLANTATION SAFETY (DAY 1)

    EVALUATING EMERGING INFECTIOUS DISEASES (EIDs) FOR TRANSFUSION SAFETY

    The Hilton Washington D.C. North/Gaithersburg 620 Perry Parkway Gaithersburg, Maryland 20877

    Tuesday, May 11, 2010


    Starting on page 111

    Just infuriating!!

    p. 126
    Keep reading folks. It just gets better and better.
  2. Robin

    Robin Guest

    This is annoying but it's really unsurprising. Look at the perception of this illness and the utter lack of funding for research. Most people have no idea how bad it is until they or a loved one gets it. We're not dying in droves like AIDS patients -- and they got brushed off initially.

    They will be unwilling to do anything until there's rock solid evidence (not just from the Science study.)
  3. Patience

    Patience Guest

    Evidence ? How much more evidence do you need. Red Cross Japan, Germany, WPI, CC, NCI, Abbot Disgnostics, Ila Singh, Bateman, Van Der Meer and his lying team, Jonathon Kerr. Hello???? Canada is the only smart people in this. Oh and the othervquote I love from this paper well we coukd lose a lot of donors !!! Our government is literally out of their head on this one. I for one will be sending this to my representatives explaining to them these are the people you Hire to protect our world from infectious disease. Oh pulezzz if this had been found in MS or Lupus patients you think we'd still be yelling and no one listening . This is the old fashioned Bias of we say we believe CFS is serious but shhh we don't really . How stupid do they really think we are ? Perception Emergency !!!! The NIH will roast them . I cannot wait for the new studies.
  4. Kati

    Kati Patient in training

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    p118

    They're worried about creating panic. Just like HIV created panic in people because the government didn't want to talk about a gay men disease.
  5. Kati

    Kati Patient in training

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    p 122


    They are trying to decide which bug they should focus on, babesia or XMRV. They're thinking XMRV will cost them a lot of money. Sheesh- They haven't got the disease, so hey, let's flip a coin. Clap clap clap.


    p.125, Q &A for Dr Dodd:

    So are they going to answer the serious threat of XMRV and fund CFS or are they gonna try to shut us up?
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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    prophesying and then fulfilling it themselves by the decisions they make.
  7. Kati

    Kati Patient in training

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    p126 Still Mr Dodd talking:

    So it's where he's at, managing people's reactions. Gag them CFS people, they're making too much noise. :tear: (sarcastic)

    Question/comment from a different speaker:

    No respect for the silent. There is no respect.
  8. Kati

    Kati Patient in training

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    p 144-146 Dr Susan Stramer, American Blood Bank

    So now they're trying to find excuses not to test for yet another retroviruses.
  9. Kati

    Kati Patient in training

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    p 341-343, Discussion

    Maybe there is hope?
  10. V99

    V99 *****

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    It's the reactions of the general population they should be worried about. CFS patients are already sick, and less likely to panic. Can't catch something you already have.

    As for the causal issue, well no ones has got to that stage yet, so why would you know. Everyone is too busy trying to see if there is an association.

    In the meantime they need to stop stalling, or is it their fear/panic that we may gain more resources to the CFS issue?
  11. Mithriel

    Mithriel Senior Member

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    Blood products are a very tricky area as without them people die, simple as that. They can't be stored so there is no next month's operations depend on this month's donations. If they stop everyone donating who has ever felt fatigued there will not be enough blood available.

    The dodgy definition of CFS which mean just being tired makes you qualify is confusing the issue. Until there is a validated test so blood can be screened how much blood do you reject on the off chance it is infected?

    The balance of risk is very hard to decide and if some people get infected in the meanwhile they won't die immediately and there may be a treatment soon anyway. If people are terrified to get a transfusion they could die.

    Also, legally, there is no liability if you get an infection from a transfusion unless the services had a test available but didn't use it. And there will always be someone who will sue if they refused a transfusion, got sicker and it turned out that XMRV did not pass on in blood.

    Mithriel
  12. V99

    V99 *****

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    Another interesting quote on pages 115/6

  13. VillageLife

    VillageLife Senior Member

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    what does that mean?
  14. bullybeef

    bullybeef Senior Member

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    I just been having this debate with my cousin. He seems to think I am of the opinion that XMRV may become like 'I am Legend'!

    I actually replied XMRV may not be proven a life ending disease, like HIV, but more like a life sentence disease. The problem there is, if a disease kills everyone, there's no one to pick up the bill, and it costs the countries of the world nothing.

    But if XMRV goes on to be proven to infect vast numbers of people, costing millions in job cuts, debilitating the welfare, disability, health and insurance systems, who's going to pay for all that? Therefore, XMRV may be a global economical disaster, rather than a doomsday scenario.

    Global economical collapse could probably be worse than everyone dropping dead. With the paranoia surrounding global warming (however true that maybe), the fact weve already coming out of a global recession, and the lack of natural resources, would this mean the human race could be on the brink of returning to the dark ages?
  15. kit

    kit

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    "The doomsday scenario of course is the one that provokes a lot of concern that the virus causes a dread disease or diseases. That it has an extended incubation period, that it spreads rapidly by common routes, that it's already widespread. And perhaps there has been or there will be a viral mutation event. This is -- this I think is something that has to concern us."

    You bet your @ss it is something to concern you. "A dread disease. . . that is already widespread." Congratulations, Roger Y. Dodd, you're getting warmer. Hi patience, welcome to the forum!
  16. VillageLife

    VillageLife Senior Member

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    Some quotes from the meeting, which was attended by:

    C.D. ATREYA - Associate Director for Research

    HIRA NAKHASI Director, DETTD, CBER

    CAROLYN WILSON Associate Director for Research CBER

    JAY EPSTEIN Director Office of Blood Research and Review CBER

    JAMES HUGHES Professor of Medicine and Public Health Emory University

    MATTHEW KUEHNERT Director Office of Blood, Organ, and other Tissue Safety CDC

    MARTA GWINN Medical Epidemiologist Office of Public Health Genomics CDC

    STEVEN KLEINMAN Senior Medical Advisor, AABB Clinical Professor of Pathology University of British Columbia

    Roger Y. Dodd Vice President, Research and Development Holland Laboratory American Red Cross

    SUSAN L. STRAMER Executive Scientific Officer Biomedical Services American Red Cross

    PETER R. GANZ Director Center for Biologics Evaluation Health Canada

    MARK WALDERHAUG Associate Office Director for Risk Assessment Office of Biostatistics and Epidemiology CBER

    JERRY A. HOLMBERG Senior Advisor for Blood Policy HHS Office of the Secretary

    HARVEY ALTER Chief of Clinical Studies Associate Director for Research Department of Transfusion Medicine NIH

    RAYMOND P. GOODRICH Chief Science Officer CaridianBCT Biotechnologies

    CLARK TIBBETTS Executive Vice President TessArae, LLC

    DAVID ASHER Chief, Laboratory of Bacterial, Parasitic, and Unconventional Agents OBRR, CBER

    PAUL A. MIED Deputy Director Division of Emerging and Transfusion Transmitted Diseases OBRR, CBER



  17. bluebell

    bluebell Guest

    And this is how loud we are with absolutely no energy. I can imagine they are really scared that some of us might become well again. Hell hath no fury like millions of people scorned for decades...
  18. Robyn

    Robyn *****

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    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Without a test, there is no danger of losing 4% of population of donors. When test for XMRV is available at local doctor's office, then a ban on XMRV positive people might make you lose a lot of donors. But honestly, why would a healthy person ask to be tested, well, if they have a relative who has CFS and tested positive.

    Either way, I agree that such a question and deferment of CFS patients will not do a whole lot to protect blood supply from XMRV. Most people who have CFS would answer no to the question since they haven't been diagnosed. If you are severely ill, then you likely have the diagnosis but you also won't answer yes to the question of "are you feeling well now?" And the question will do nothing to stop the 4% of healthy people with the virus from donating.

    Still, I think a very quiet change to asking the question and deferring CFS patients is the way to do. I disagree that there has to be a lot of red tape to this. Simply put out some new forms that add the question, "Have you ever been diagnosed with chronic fatigue syndrome?" Heck, you can print it out on some labels and have the people attach them right as people come to fill out the form.

    Why do that if it won't make a huge difference in XMRV level in blood supply and it isn't known for sure if it causes disease?

    Because, while the evidence is not conclusive at this time, there is enough evidence that there is a strong possibility people with CFS are infected with XMRV, a retrovirus that has been shown to infect immune system cells.

    If it turns out to be a bust, throw the labels away and go back to previous policy. No harm done. No big announcement.

    Even if the news media asks, you can say, "The evidence is not clear on XMRV, but we value the safety of our blood supply, so we are taking this step at this time to protect blood transfusion recipients based on the knowledge we have now. We want the public to trust that every day we do all we can to ensure the safety of blood transfusions."

    And if it does turn out to cause CFS, or cancer, and you know that you had reason to believe it could cause the illness but you did nothing, can you look in the mirror and say, "But I didn't know for sure"?

    Sometimes we have to take safety measures based on probabilities. It's a risk / effort / consequences of action and consequences of no action assessment. Do you really want to wait until the hurricane hits before you measure the probability of damage coming to your house? When your neighbors are evacuating and you see storm clouds overhead and the wind is blowing and the weather man reports there is a 67% chance of the hurricane hitting your house? Will you just play in your band in your house until you know for sure?

    The hurricane of which I speak of is not just the possibility of more people being infected and it leading to disease, but the public outcry that you did nothing when you should have been proactive, putting safety first.

    Tina
  20. Rrrr

    Rrrr Senior Member

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    what a great thread. deserves to be bumped up!

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