1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

WHERE ARE THE FDA AND NIH XMRV STUDIES? 5 August 2010 - It is TIME

Discussion in 'General ME/CFS News' started by muffin, Aug 5, 2010.

  1. Robyn

    Robyn *****

    Messages:
    180
    Likes:
    0
    Center for Disease Control, Well they sure have controlled this disease huh? Exactly how they wanted for 25 or so years. Let's hope their run at controlling it has come to an end.
     
  2. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    Based on what PNAS said (according to Mindy, who I think is very reliable), I think it could still be as long as a month before we see the paper. "In press" is a bit vague. I think that traditionally it means "with the publisher", which could mean there's still work (but not research or writing) to be done before it's made into a hard-copy journal. I wouldn't get too wound up until mid-Sep, but that's just me. :Retro smile:

    My best guess, though, is that we'll see it between 17Aug and 7Sep. [crossing fingers]

    Yeah, the paper was in galleys in early June, but thanks to the CDC (bless their nasty little hearts) that all went out the window. The paper had to be revised and reviewed and NEW galleys had to be made and reviewed, blah, blah, blah. It takes a couple of months. I have no doubt somebody at the CDC knew d@mned well that calling question at that point would delay the paper this long.

    Writing to Frieden at the CDC about WTH they're doing with ME/CFS/XMRV -- that sounds like a great idea!
     
  3. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    SickofCFS Said:
    "Writing to Frieden at the CDC about WTH they're doing with ME/CFS/XMRV -- that sounds like a great idea!"

    I don't know if it is a good idea, if he reads his emails, if he even KNOWS what is and has gone on with the CDC program. But, I figured I was doing HIM a huge favor by telling him to get the CDC to come clean on its own before we and media do it for them and then the damage will be out of control and credibility for the CDC gone for the next decade. I was being kind, actually - and truthful. Come clean on your own or we do it for you and that's not good.
    '
    Email these people. Fill up their mailboxes. Pound on them so that they know we are here and not going anywhere. I hope Freiden responds. I really hope he uses his brain and finds out what is going on with CFS at the CDC and does force clean up and come clean. We shall see.
     
  4. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    SEE MINDY KITEI'S POST: "IT'S OFFICIAL" - FDA/NIH PAPER in PRESS, by Mindy Kitei

    Mindy Kitei
    FDA/NIH PAPER in PRESS, by Mindy Kitei
    It's official.

    Mindy Kitei
    CFS Central
    http://www.cfscentral.com
     
  5. Grishnkh

    Grishnkh *****

    Messages:
    10
    Likes:
    0

    Would you be saying all this if you had tested positive for XMRV? Not just this but every other post you have made lately.
     
  6. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    That was not an appropriate comment. Also XMRV testing is still experimental.
     
  7. Grishnkh

    Grishnkh *****

    Messages:
    10
    Likes:
    0
    Negative attitudes towards the validity of the causation of XMRV in ME aren't very nice either considering many people's lives depend on it. Levi is one person on a forum belittling hope of many.

    I am not insinuating Levi is XMRV- I am asking whether his posts would be of the same opinion if he/she had tested positive for the virus.
     
  8. Levi

    Levi Senior Member

    Messages:
    188
    Likes:
    27
    Truth

    Grishnkh;110017,

    That's a fair comment/question. If I was XMRV+, I would probably be even more vigilant and reactive about possible treachery from the CDC. Look at their latest psych tome, it is viscious and downright mean and contemptuous of CFS/ME patients, even for them. I don't trust them and have seen them snatch victories from the outreached arms of the CFS community time and time again over the decades. You count your chickens before they are hatched with the CDC at your own peril.

    Since I have deleted most of the hundreds of other PR posts I made here from last year, it is forgivable to think I am trying to rain on CFS/ME patients parade if you look at my recent posts. There have been many discussions on PR about the possible coming "split" of the patients into XAND and "Reeves Disease" populations, and now would be as good a time as any to get IN FRONT of those issues. So your criticism of me will be a good thing if folks are inspired to face that problem in an organized and productive fashion. NOW.

    My position is that all patients with unexplained illnesses should have the presumption of sanity legally bestowed upon them, albeit only a rebuttable presumption. G.P.'s and M.D.'s should not be allowed to escape their duties by labeling patients with a personality disorder and discarding them just because they have no easy explanation for symptoms.

    If Y'all are right and XMRV is found in 80% (is that the latest?) of CFS patients, then that means 80% of all CFS patients will NO LONGER fit ANY existing definition of CFS, which REQUIRES the the illness be completely unexplained by definition, i.e., it is invariably a diagnosis of exclusion. Since ME has been destoyed as a distinct illness entity by the weasel and associates, and there are no clear ME cohorts to study, it will be a confused mess to sort things out.

    And that is the CDC's element, playing one group off another, muddying the waters, thriving on demonically inspired confusion. You think your problems are over now, but even if you are right, the existing problems you face are merely being traded one for another. That should cheer you up.

     
  9. Megan

    Megan Senior Member

    Messages:
    230
    Likes:
    13
    Australia
    Thank you Mindy! Good to hear from PNAS on this, I think.

    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 disturbing that he says he does not know when it will be published.

    If it comes out after that, it will look as though this was designed to happen. Surely the editor could have provided this reassurance?

    Once again, I say if pressure is to go anywhere, it is to go on to PNAS to get the publication out PRIOR to the XMRV conference.
     

See more popular forum discussions.

Share This Page