Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by CBS, Jun 29, 2010.

  1. dean


    "Although it's not unprecedented for government scientists to be on opposite ends of a scientific debate, two contradictory press releases on a flashpoint issue like CFS would look odd, scientists say. With publication deferred, "they want to find out what's going on first," says one researcher who says he has been briefed about the controversy."

    "look odd" ???? How about cause panic.....This CFS forum is not representative of the general public opinion. When AIDS was in its infancy there was chaos as "the media" reported the implications of " scientific findings", that the disease was spread by gay waiters in restaurants or sneezing in elevators etc. Many public health officials were being advised that the science dictated that isolation camps be readied for the infected......... I might add that on the other hand, sex industry representatives were quoting other "scientific findings" that said there was no relationship between activities at bath houses and AIDS so "come on down and f**k your brains out" actual advertisement at the time....

    Making policy based on science is political and in principal is based on dialogue and consensus. Public health officials need to have as much consensus as possible with and among the scientists before letting the media onboard.

    In my opinion, I think it is a good thing that someone is looking at the big picture before letting the media do it's thing.....
  2. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

    Matlock, Derbyshire, Uk
    Interactive Google Map for plotting XMRV +ve distribution

  3. Rrrr

    Rrrr Senior Member

    RIGHT! so i contacted the boston globe, the boston phoenix, the new yorker, the new york times, USA Today, NPR's boston station (WBUR). i wrote this:

    Here is my pitch. I hope xxx considers covering this story.

    This is a personal story that has huge consequences for the nation's health. And has a Boston link. It has already been covered by the New York Times, Wall Street Journal, NPR and other media. But only the WSJ has the most updated info, as of last night. (See link below.)

    Remember in the 1980s how the "band played on" as people with the newly discovered retrovirus called HIV were getting AIDS, getting sick and dying? The government ignored them for years. Well, the situation is repeating itself now with another retrovirus -- this one does not bring death as much as a living hell that never ends. And it is already in our blood banks, contaminating the nation's blood supply.

    There is an emerging story of the link between XMRV, a newly discovered human retrovirus, and Chronic Fatigue Syndrome (CFS). CFS is a devastating illness: It has left me near-bedridden and homebound for 20 years. It does not kill you, but it leaves you with a severely limited life. (How many years can you look up at your ceiling from your bed without feeling you are in hell?) The number of people with CFS is 1-4 million in the US and 17 million worldwide. Thousands of children have it.

    The Centers for Disease control have spent most of the past 20 years I have been sick ignoring those of use who live with CFS; and they continue to delegitimize and psychologize our illness to this day. Info about that is found in the NYTimes:

    The initial study linking CFS with this newly discovered retrovirus -- headed by Dr. Judy Mikovits of the Whittemore Peterson Institute -- was published in one of the most prestigious science journals in the country, Science (Oct 09).

    And it is now independently replicated by the FDA and National Institutes of Health. The Wall Street Journal reported on that last week.

    But suddenly, yesterday, just as the FDA/NIH study was about to publish this report confirming XMRV in CFS patients, the scientific paper was pulled from publication by a high up official at Health and Human Services. As was a separate CDC research paper also due to be published, this one disputing the link between XMRV and CFS. Here is last night's Wall Street Journal news piece about all this:

    This smells like politically motivated science. Or worse; a cover up.

    Canada, Australia and New Zealand have appropriately banned people with CFS from giving blood and putting others at risk by getting our blood. The US refuses to do this.

    Please consider covering this story.

    The Boston link? One of the world's top retrovirologists, and the single most noted XMRV expert in the world, is based in Boston: Dr. John Coffin of Tufts Medical School.

    Below is a photo of me (brown hair) in Oct 2009, at our "XMRV Celebration Party," when we first heard that we might finally know the cause of our 2 decade long illness, CFS.


    (anyone can feel free to use this letter for themselves)
  4. judderwocky

    judderwocky Senior Member

    AGreed.... ive heard many many times over the years, that every fax, phone call, email. .. etc.. is usually figured to be representative of a thousand constituents.... each one has a huge impact....

    you would be surprised how simply calling your elected officials can change the game... the next step would be to target the healthcare committee in the senate and house....


    US Senate Committee On Health Education Labor and Pension, Subcommittee on Health

    Democrats by Rank

    Tom Harkin (IA)
    Christopher Dodd (CT)
    Barbara A. Mikulski (MD)
    Jeff Bingaman (NM)
    Patty Murray (WA)
    Jack Reed (RI)
    Bernard Sanders (I) (VT)
    Sherrod Brown (OH)
    Robert P. Casey, Jr. (PA)
    Kay Hagan (NC)
    Jeff Merkley (OR)
    Al Franken (MN)
    Michael Bennet (CO)
    Republicans by Rank

    Michael B. Enzi (WY)
    Judd Gregg (NH)
    Lamar Alexander (TN)
    Richard Burr (NC)
    Johnny Isakson (GA)
    John McCain (AZ)
    Orrin G. Hatch (UT)
    Lisa Murkowski (AK)
    Tom Coburn, M.D. (OK)
    Pat Roberts (KS)

    Energy and Commerce, Subcommittee on health:

    John D. Dingell, MI John Shimkus, IL, Ranking Member1
    Bart Gordon, TN Ralph M. Hall, TX
    Anna G. Eshoo, CA Ed Whitfield, KY
    Eliot L. Engel, NY John B. Shadegg, AZ
    Gene Green, TX Roy Blunt, MO
    Diana DeGette, CO Steve Buyer, IN
    Lois Capps, CA, Vice Chair Joseph R. Pitts, PA
    Jan Schakowsky, IL Mike Rogers, MI
    Tammy Baldwin, WI Sue Wilkins Myrick, NC
    Mike Ross, AR John Sullivan, OK2
    Anthony D. Weiner, NY Tim Murphy, PA
    Jim Matheson, UT Michael C. Burgess, TX
    Jane Harman, CA Marsha Blackburn, TN
    Charles A. Gonzalez, TX Phil Gingrey, GA
    John Barrow, GA Joe Barton, TX (ex officio)
    Donna M. Christensen, VI
    Kathy Castor, FL
    John P. Sarbanes, MD
    Christopher S. Murphy, CT
    Zachary T. Space, OH
    Betty Sutton, OH
    Bruce L. Braley, IA
    Henry A. Waxman, CA (ex officio)
  5. bullybeef

    bullybeef Senior Member

    North West, England, UK
    Why did two government institutions not collaborate? Simply because they have two different agendas.

    I believe if the CDC was to find XMRV, they would incriminate themselves for how they treated ME for years. Their negative study gives them plausible denial: "But we didn't know, and we couldn‘t even find it!"

    However, the FDA/NIH would have to be seen to be concerned about a new human retrovirus possibly within 3-7% of the donor population. They aren't too concerned about ME, just the big picture based on these percentages. Notice there was only a tiny mention of ME in Dr. Alters quotes and slide.

    My guess is the CDC will and agree to disagree with the FDA/NIH for the sake of the blood supply. The FDA/NIH will 'show' them how to find XMRV, and the CDC will be appeased for not being able to find it, giving them a plausible reason as to why they didn't know.

    If the media obtains any proof that the CDC knew about a retrovirus within ME patients prior to the XMRV/ME discovery last October, the outcome would be very interesting.
  6. judderwocky

    judderwocky Senior Member

    i agree... i think the CDC is out to cover themselves... we need to put pressure on them to release the studies now
    thats why i want the senators and reps involved...
  7. muffin

    muffin Senior Member

    My husband just sent Dr. Freiden (CDC) a rather terse email

    When I get back from another stupid doctor's apt. I will start hitting everyone, everywhere with this one. The CDC is NOT getting away with this game again. Not again. Time to hit the President and at the very highest levels of the US government. Hit congress, hit the media (local, major), and keep hitting - the CDC can NOT be allowed to get away with this again. NOT AGAIN.


  8. Cort

    Cort Phoenix Rising Founder

    What a great idea. We could embed one on the Forums and on the Buzz page :)
  9. Lesley

    Lesley Senior Member

    Southeastern US
    A hopeful perspective

    Remember that the leadership of all of these federal agencies has changed over the last year or so. Because of the implications for the blood supply, this will be big news, and these new leaders will be called upon to explain any contradictory findings by different branches of the same federal agency.

    Even with the best of intentions, the new administration is unlikely to have rooted out all of the problem areas in these departments. Perhaps the conflicting results will bring the shameful history of CFS and the CDC to the attention of those who can do something about it.
  10. julius

    julius Watchoo lookin' at?

    someone else mentioned a global distribution map. Maybe that with the counter would go well together.
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    Poor Obama, last thing he needs is another national crisis.

  12. Cort

    Cort Phoenix Rising Founder

    This really is a very strange situation...I think Dr. Yes's observation that nobody knew they had conflicting findings until after they submitted their papers (and until after Alter gave his presentation?) is an apt one.

    I'm trying to figure out how the DHHS could do this in the first place. We know that these researchers are not using grant funds to do their research - none of them have received grants for XMRV. If that was happening I imagine they would have been insulated from this kind of interference. I imagine they are institutional researchers employed directly by the DHHS.

    The DHHS is directly overseeing one major project but its apparently not directly overseeing several other projects including the CDC's project and the FDA/NIH projects. It appears to have had little idea of all work was going on by other researchers it employs. You would guess that knows about the CDC's work but the Alter publication hit them by surprise. I would guess that because they directly employ Alter and the researchers working with him they could do that - all at the last minute. I

    In some ways the decision to hold the papers is understandable...this is not Mayo clinic researchers versus Cleveland clinic researchers. This is the FDA and NIH (whatever that means) vs the CDC - these are government agencies with decidedly different findings....a house divided.

    I agree that it looks terrible, though. Better for us if the two papers have been published and the researchers worked it out afterwards. If the negative paper wins out and the reason it wins out is not explained satisfactorily it'll feed conspiracy theories for a long time.

    I imagine the research community would also very much like the papers to be published - they want to see everything aired in the clear light of day. I don't know how they're going to resolve this satisfactorily. I imagine that we'll never see one of those papers! We're not going to see exactly what they did -the procedures they went through....I imagine the research community is appalled to see this happen....

    However I think it is simply a disagreement and I think they'll get to the bottom of it in the end. I don't think you can hide XMRV. There's too much interest - too many eyes on this prize. I think that there are too many stakeholders who want to find this pathogen - the retrovirology community and the drug companies come to mind right off.

    Plus we have so many other studies going on.....for one there is the DHHS study that Dr. Mikovits is overseeing herself!..... the truth will out.

    It does, again indicate how difficult this little bugger is to find; these are two or three presumably very competent research groups that have had lots of time to look at it and they're still coming to different conclusions. Its a remarkable situation.
  13. Sasha

    Sasha Fine, thank you

    I think we'll see both papers. Both are in the publication pipeline and both are now known about, internationally, in the XMRV science community. That community seems to be not just CFS researchers but HIV researchers who are well connected, well funded and not used to being messed around or having stuff supressed (not in 2010, anyway!).

    I really don't think that the Alter paper can be the dud because you can't find a false association between XMRV & CFS unless you have faulty blinding, which isn't conceivable in this study (not after the fuss about it in the Lombardi paper). So we'll see the Alter paper. I also don't think the CDC can now afford not to publish a paper - but I think it will be a paper that either finds XMRV using new techniques and backs up the CFS/XMRV association or a paper that fails to find it because its study population doesn't really contain classic CFS and they will have to say so.

    I really don't see non-publication as an option for either group and I agree that there are too many important eyes on this now for a cover-up, even if that was the intention (and it seems more likely that it's the US govt wanting to prepare itself properly for a major public communication about XMRV).
  14. judderwocky

    judderwocky Senior Member

    maybe... they could just want to give the CDC time to replicate the findings themselves... but thats still delaying the publications for no reason other than pr.... that doesn't apply to any ethical standard i can think of.

  15. jimbob

    jimbob ME/CFS84-XMRV+

    myrtle beach, s.c.
    the CDC is like the energizer bunny, they just keep screwing us and screwing us and screwing us......
  16. V99


    We need both papers, they will both be valuable in this situation. The positive for obvious reasons, the negative because it could explain all the other negative studies.
  17. V99



    What are we then, cheap brands own?
  18. serenity

    serenity Senior Member

    i'm with the pups on this one, George & Parvo have it right in my opinion.
  19. Mark

    Mark Former CEO

    Sofa, UK
    I can conceive of no such explanation that would be satisfactorily believable by any but the most credulous. This is all just trying to put a cat back in a bag. Or finding oneself in a hole and trying to dig one's way out.

    If this happened, and assuming the reported FDA/NIH findings are correct, I would consider the suppression of these papers an evil act, and - due to its now-public nature - one verging on a declaration of war by government on its people, a moral crime against humanity, and a potentially catastrophic blow for humankind. Surely the Obamas can overrule this?

    We cannot afford to play these ostrich games any longer. "What you don't know can't hurt you" and "There is no train" won't solve the problems we face. To move forward quickly we need to be more open, not more closed, and that clock continues to tick...
  20. V99


    I don't trust them, so I will only be happy when they publish both papers.

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