Monday, July 12, 2010


Dr. Randy Schekman, editor-in-chief of the Proceedings of the National Academy of Sciences (PNAS), where the FDA/NIH XMRV ME/CFS paper had been accepted, gave CFS Central an update.  The NIH's Dr. Harvey Alter, one of the authors of the study, told Schekman that he'll be returning the paper to the journal "within weeks."  After that, the PNAS editorial board will consider the paper, which, Schekman says, is "standard procedure."  The FDA/NIH study found the retrovirus XMRV in the majority of ME/CFS patients that it tested.


  1. Woo hoo. I'm not exhaling 'til I see it in print, though.

    Did Dr. Schekman say the results were (still) positive, or is that from the original press release?

  2. Cinderkeys, Dr. Schekman won't comment on any unpublished study.

  3. I have heard 80% ME/CFS Positives & 7% healthy controls mentioned ;)

  4. Thanks for the update!

    "CFS Central" got a mention in one of our local papers here in (very tiny) Malta yesterday:‘all-in-the-mind’-health-division-to-reconsider-its-position-on-chronic-fatigue-sy

  5. Hi Mindy, how do you know that the FDA/NIH study found the retrovirus XMRV in the majority of ME/CFS patients that it tested?


  6. Thank you for keeping us up to date. This waiting is hard, but it's easier thanks to your vigilance.

    Patricia Carter

  7. "found the retrovirus XMRV in the majority of ME/CFS patients that it tested."

    Mindy, do you have a source for this, and if so what was the finding in controls

  8. Hey everybody there is one thing I know Mindy is an investigative journalist and cannot reveal her sources. Why would we want her too . She obviously has some great ones as CAA have been supporting her comments on their page as well. So let's just relax and let the paper come out . I'm sure if it isn't the same their are many that would cry foul. Don't forget you have Hillary Johnson, CAA, WPI, Vincent Rancainello , NIH, FDA watching this. Plus the entire angry ME/CFS community , It's in the public eye therefore the Scandal would not go unnoticed.
    The Wall Street Journal Amy Dockser Marcus has been writing about it too ehich makes me think major newspapers and scientists are watching this like a hawk.

  9. Dean and Anonymous, she has sources and she mentioned it before on other posts in this blog.

  10. To Nicky Reiss, Wow! Malta! How cool is that?

    To Dean E. and Anonymous, The FDA/NIH study found XMRV in the majority of patients and 3 to 7 percent of controls. Dr. Alter's slide presentation at the May conference had that info, which has been confirmed by additional sources and reported earlier on CFS Central.

  11. Anonymous, why don't you watch this news report on a retroviral cause and the situation on CFS/ME & CDC/NIH from 1996 and then refrain from telling people to "just relax".

    Hear of Reeves calling the whole town on Incline Village "hysterics", thus inferring that Drs Peterson and Cheney were too stupid to see what they saw.

    Hear/watch Strauss of NIH saying that his "research" shows that people with CFS get better no matter what he "gives" them, inferring we are all hypochondriacs &/or hysterics.

    It's been 14 years since this news came out and we are still at the very same place. All the same players are still around in this Shakespearean comic/tragedy...we've just aged 14 years...everything else is still the same.

    Deja vu all over again. The Band Plays On. Some of us know that this can happen again...The only changes in our situation remain POTENTIAL at this time....wonderful potentials, but not yet realized.

    For this reason, it is essential that bloggers keep blogging about this lapse in scientific ethics from the DHHS; that PWCs keep writing their political representatives and demanding not only the release of this paper but also parity in research funding; that the media get off their butts and report,report,report on the wool the CDC is again attempting to pull over the eyes of a public with a very short attention span.

    NOW is the time to keep this story alive and in the spotlight. It is NOT time to "just relax".

  12. Hi Mindy,

    This is Will from the UK, I have sent you a couple of emails recently, I hope you don't mind. Like I have said before, we don't have many people within the media aiding our fight, and your help is very precious.

    Have you seen the ME news story video recently posted on the PR forum? It's from 1996 and if you haven't seen it, it will blow you away. Take special attention to the US (former?) assistant health secretary's response to a question of what he believes causes ME:



  13. Thank you, Mindy, for your great work!

  14. ugh... i hope they are serious about this

  15. Hi William, Yes, I have seen the Primetime Live segment from 1996--I saw it live in 1996, and I've watched it since online. I remember Dr. Philip Lee, the former Assistant Secretary of Health, telling correspondent Dr. Nancy Snyderman that he believed CFS was caused either by a virus or retrovirus.

  16. Will Dr. Alter or the other scientist on the paper go to the XMRV conf in Sept? Can you go?
    Can we be allowed any patient representative/science advisor?
    Thank you for all your articles.


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