Now is the time to act! Sign the petition!

Discussion in 'Fibromyalgia Main Forum' started by karinaxx, Jul 1, 2010.

  1. karinaxx

    karinaxx New Member

    I just saw the petition online, following the news of the CDC release of its negative study on XMRV and NIH/FDA withholding their paper on XMRV . Its posted on every major board and still there are only 200 and something signature until now.
    I am shocked and really outraged about how they, goverm. especially CDC, again, haveing serious research being ridiculed!


    Please, do not stand by and say nothing. Speak up and sign this petition!

  2. victoria

    victoria New Member

    do you have the url for the website to sign?

  3. quanked

    quanked Member

    need a link to sign petition.
  4. matieofleaves803

    matieofleaves803 New Member

    I went there using 2 diferrent search engines, but couldn't find it.
  5. quanked

    quanked Member

    the link worked and I signed.
  6. AuntTammie

    AuntTammie New Member

    if you can't get there via search engines, copy the link directly into your address bar

    the FDA/NIH study desperately needs to be published, otherwise the CDC will get away with spreading the lies from their pseudostudy around and further discrediting CFS
  7. victoria

    victoria New Member

    my signature was #293....

  8. quanked

    quanked Member

    I am going to start a another thread on this petition as it seems to be, thus far, overlooked.

    I hope you do not mind.
  9. karinaxx

    karinaxx New Member

    Thanks for posting the link.
    It was very late last night, when i wrote this post. My brain actually already shut down.

    When i woke up this morning the first thing I did, is to check out further new's on this topic.
    And what do i see, the CDC released their findings, what a scam !

    I saw online a reply of Suzann Vermon on the CDC puplication, but cannot find it any more. Maybe some body else can look for it; it was very well written.

    I have to go, busy day ahead

  10. victoria

    victoria New Member

    that the NIH/FDA paper(s) are being released after this. It will be interesting to see the NIH's response in particular to the CDC's study.

    From what I've read, NIH/FDA used a different definition of CFIDS than the CDC did, for starters.

  11. karinaxx

    karinaxx New Member

    Aussiewoman, your arguement is valid, but as i said, we need to keep the pressure on!
    There is now time anymore to let this issue idle away another 25 years!

    This is not a issue of research alone, but of politics, which has damaged millions of lives!

    It is not only to get further studies on XMRV funded, but it is time to attack the CDC in full force, for its shady handling of 25 years of fake and ridiculous "research studies"
    Now is the time where media attention is here, we do have to use it, to draw the attention to the huge mistakes being made and put an end to an area where bad politics and simple greed ruins so many lives!

    The CDC , plus the Robert Koch Institute, are still regarded as a leading authority in desease control. More so, it is so important to expose their failure to live up to their responsibility!
    They cannot even get their patient diagnosis right, and Suzann is right if she says the CDC study did not study ME/CFS patient, if the cohort has been taken from the Wichita Study! This are people which have been randomly picked with fatigue! Nothing else!

    Why are such Intuitions still being taken seriously and we do have to live or die of the consequences of their bad science and politics!

    None of us should keep their mouth shut and let pseudo science push as in a corner out of fear of being regarded as difficult patients. We are not difficult or lunies, we are pissed at the injustice done to us for over 25 years !

    And again, now is the time to use every chance we can get, to push our cause in to the media!

    [This Message was Edited on 07/02/2010]
  12. karinaxx

    karinaxx New Member

    thanks your doing a good job explaining the main point!

    There is no harm in signing the petition, in contrary, you are supporting that important studies, by very important scientist, will be released as soon as possible, without being censored by political and financial interested groups!

  13. karinaxx

    karinaxx New Member

    Dr. Racaniello called the decision by the DHHS to withhold two papers accepted for publication 'senseless' and charged that "they have compromised the entire peer reviewer process". He noted that the decision would raise suspicions in the CFS community about their motives (which it certainly has)
  14. karinaxx

    karinaxx New Member

    to what i said, this is a comment made on a site which was posted by glenp: naturecure

    For reasons that are beyond this writer, the CDC and its satellite phsycho-analyzers have a little trick they play with science. They take an important scientific discovery in Chronic Fatigue Syndrome and then they publish their own study to negate it. By selecting non-patients through their "research definition" they effectively screen out those with real Chronic Fatigue Syndrome. By doing this act of deception, they appear to outside observers as having conducted quality research. Their trick has always been in the patient selection process as there is no definitive test for Chronic Fatigue Syndrome.

    The problem isnt that those in the CFS research field don't know about this CDC trick but its that it harms the scientific process and destroys the ability of ethical scientist to receive funding to continue their important research. They CDC, lead by William Reeves, has been manipulating science since the very beginning of CFS research. The real question here is why?
  15. karinaxx

    karinaxx New Member

    site, which seems to have very smart people on it.
    sorry if i past here before asking, but this comment is just to good to not share.

    The CDC is looking awfully transparent imho. By holding back the NIH/FDA paper, they can slip in and state things about their paper, and how it differs from Alter's. For example, their cohorts in Kansas and Georgia. Their CDC definition and so on.

    Bill Reeves, a virologist by trade, was shuffled off as a senior advisor to the mental health section of the CDC.

    It's not surprising to see his name on the paper if:

    The CDC will distance themselves from XMRV/CFS associations, because those with XMRV will be 'excluded' from a CFS diagnosis given their neurological symptoms. This keeps their bread winning psychological treatments of CBT and GET intact, as well as their CFS policies and guildelines. Not to mention it keeps their lawyers happy.

    It gives them (the CDC) the 'CFS' brand, which can help them through those past sticky years of completely denying, and ridiculing a biological basis for CFS.

    imho, watch as the FDA/NIH paper is released and see how well the two will split the XMRV and CFS sets. Thereby putting those of us with a XMRV positive diagnosis into a brand New classification (ME or something all brand new. In fact, I'd be very surprised to see them use ME. It's too politically dangerous). This way the CDC can keep the 'CFS' branding, and their somatic hypothesis.

    Watch how the CFS moves into the mental health section of the CDC soon'ish.

    Anyone have Kenneth Feinburgs phone number?
  16. bakeman

    bakeman New Member

  17. bakeman

    bakeman New Member

  18. gapsych

    gapsych New Member

    Why is it shoddy research? I mean it could very well say this but if you take the conspiracy theory out of the equation you could also say the same thing about the WPI, or any other study.

    Ad far as DeFrietass, we just may never know. Science has come a long way since then.

    We don't even know what CFS is and until researchers can agree what the criteria is, we will probably keep getting mixed results.

    As far as the WPI, they got the 97% figure as it was 97% of the samples tested positive to one out of four different tests. So technically they had mixed results.

    Time will tell. Be patient.

    [This Message was Edited on 07/03/2010]
  19. gapsych

    gapsych New Member

    I agree, it's probably not worth a lot at first glance, but we learn from the negative as well as the positive studies.

    I feel the crux of the matter is the definition of people with CFS.

  20. karinaxx

    karinaxx New Member