Tuesday, August 10, 2010

FDA/NIH PAPER in PRESS


"The Alter paper is now in press, but I don't know when it will go online and until then there will be a press embargo," says Dr. Randy Schekman, editor of the journal Proceedings of the National Academy of Sciences, where the FDA/NIH XMRV paper on ME/CFS patients had been accepted and then pulled by higher-ups in the department of Health and Human Services.  The NIH's Dr. Harvey Alter is the principal investigator of the FDA/NIH study and one of the discoverers of hepatitis C.  



On Monday I emailed the CDC press office about this question that Dr. Monroe didn't answer in our interview:  "One of the CDC slides from this week’s Blood Safety Advisory Committee meeting showed that the CDC tested 20 samples from CFS patients that the Whittemore Peterson Institute found to be positive for XMRV.  But, according to the slide, the CDC didn’t find any positives among those 20. Why was this piece of information—that the agency was unable to find positives in any of those 20 samples—left out of the CDC’s XMRV study?"  No word back.  

27 comments:

  1. Thank you Mindy. The wait is becoming unbearable.

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  2. Thanks Mindy!

    Does "in press" mean that it has gone out to newspapers etc but they cannot report on it until the embargo ends?

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  3. Thank you for pressing the CDC for answers, Mindy. With your help, the Dept. of HHS and the CDC will not be able to bury the research now, the way they did DeFreitas' research in 1992.

    Patricia Carter
    www.mecfsforums.com

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  4. Flopsy, "In press" means that the FDA/NIH paper is being printed and will then appear in the journal Proceedings of the National Academy of Sciences. Usually, the online version comes out first, but Dr. Schekman hasn't reported when that will be.

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  5. Bless you, Mindy, you're a hero.

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  6. It does not appear to be in this weeks issue :(
    http://intl.pnas.org/content/107/32.toc

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  7. Thanks for keeping us so well informed!

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  8. Continued excellent investigative journalism Mindy. Thank you so for the update from PNAS.

    And the tenacity at attempting to get Steve Monroe to answer the important question he deleted from the list of interview questions you sent him is necessary (and appreciated). The CDC needs to be accountable for its actions.

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  9. Fantastic! I look forward to your comments on the paper Mindy!

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  10. Many thanks, Mindy!

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  11. This will be one more reason to ask the CFSAC to be disassembled; we will then need the NIH to be the governing department for all who test positive for XMRV.

    If this happens, the CDC has no reason to be studying psychiatric issues and CFS will die at that incompetent,criminal,insurance connected level.

    Those who are sick and disabled by CFS but test negative can be part of the studies watching for the XMRV appearance in those so ill; at the least, testing for other pathogens will take place, and they may get answers to their illness also.

    I hope this changes what Dr. Illa Singh had to say on the This Week in Virology (TWiV)show: (paraphrased) It will take a long time, maybe years, to prove whether XMRV causes all these various illnesses, getting clinical trials set up and then getting it all out to clinicians.

    It will, unless we direct our efforts towards making the CDC's CFS program obsolete. That will be my statement to the CFSAC in October.

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  12. Thank you Mindy! That is welcome news after a 40 day wait. I hope the wait will not be much longer!

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  13. god bless America for leading the way with this!
    from the UK x

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  14. Great news. Many thanks, Mindy!

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  15. YAAAAAAAY! YAAAAAAAY! YAAAAAAAY!!!

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  16. YeeeHaaaaa .... that is the best news! Thanks for your efforts and persistence Mindy :)

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  17. Thanks a lot Mindy, that is very good news, I guess that means that it will be published before the first XMRV Workshop takes place in September, and therefore CDC will have to explain what they did wrong...and will push the rest of attendants to work on real replication studies... of course, always that the FDA & NIH printed study confirms the Lombardi group findings on XMRV and CFS, as we expect to see...

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  18. Thank you Mindy!

    By my calculations, if the paper is not out by the 31st August it will be too late for for the XMRV conference on 7th/8th September. I would think this would have a real impact on us in terms of slowing down the science. From this perspective it is concerning that he does not know when it will be published.

    Are you able to get confirmation from him that the paper will be out by 31st August?

    If it comes out after that, it will look as though this was designed to happen.

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  19. Thank you, Mindy, from Belgium, for your sound reporting! We try to direct people to your blog from our new FB-group 'ME/CFS - Evolving Science'. Carry on the good work!

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  20. Thanks for posting this. However I am extremely concerned it may not be the same result that should have come out in June/July. Otherwise why would there have been a delay and all the other issues with CDC???????????????????

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  21. xmrv is a total waste of time! here we all go again being led down the wrong path, in the mean time c.pn and along with mycoplasmas and ciguetera are all taken lightly by the cdc/nih and have never been taken seriously!mark my words xmrv a total waste of time! if this is the case then why do patients completely recover and now reports that a % of dr. lerner's patients are completely well and leading normal lives! this could never be the case with any cause or association with a retro infection! retros are for life and i have no faith in the cdc/nih or even now the fda! if it was not for these criminals we would not be having continued deaths or people still unwell! i will stick to the www.watercure.com website and far from these corrupt institutions!!god bless all of you who are not well! aidan walsh southampton...p.s. let us see soon the truth come out of egypt/israel and put a lid on those phyco-babbles once and for all and prove a physical illness and a serious one!!

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  22. After watching Annette and Andrea on Sam Shad's show today, I have a wonderful feeling that the NIH/FDA replication study confirming the Science paper will be announced at their Symposium this week! Wouldn't that be the right place to announce/discuss it?

    P.S. Wasn't Andrea Whittemore-Goad just radiant? Blessings on them both and the WPI work!

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  23. Folks, we're getting closer. Reno chronic fatigue findings confirmed by federal agency.
    Check out the story here:
    http://www.rgj.com/article/20100817/NEWS/8170338/1321

    For the first time in 25 years I actually have hope; real hope!

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