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SIGN PETITION! XMRV: Allow Science To Progress

Discussion in 'Action Alerts and Advocacy' started by judderwocky, Jun 30, 2010.

  1. Dainty

    Dainty Senior Member

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    THis might just be brainfog, but I had thought hte Wall Street Journal article said that there was a study done by the NIH and a study done by the CDC, and both were being witheld from publication? The petition says or indicates that the article claimed there are two separate studies, one by the NIH and one by the FDA that are being witheld from publication, and mentions nothing about a CDC study.

    I might very well be the one confused, but in case not I thought i should post about the potential error.
  2. alex3619

    alex3619 Senior Member

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    Hi Dainty,

    That is my understanding also, but not from the WSJ. They keep refering to the FDA and NIH studies being reported as one paper.

    Bye
    Alex

  3. judderwocky

    judderwocky Senior Member

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    its seemed ambiguous in the first article... Alter said that they independently confirmed the findings...which suggested to me that the labs were working independently... it also seemed that the WSJ was only able to get ahold of the secretary at the NIH... without comment from the FDA.... which to me means there might be another "dangling modifier" hanging out there in limbo.. On the other hand, I admit that they have only discussed PNAS for the positive findings ... but I couldn't tell again if the PNAS statements only referred to comments from the NIH.... either way i think as long as we are requesting information from both agencies the amibguity really doesn't matter.... they know that we want the findings from the NIH/FDA... and THEY know , that WE know the gest of what that was.

    two things could happen... either they don't publish it... and we need our elected officials to remember that both agencies found the virus but weren't allowed to publish...

    or they do publish, and its one study with both agencies, or two separate studies published separately....

    but i might be completely wrong ....

    lol... who knows.. .maybe we could squeeze them for a bonus study!
  4. Min

    Min Senior Member

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    brilliant petition

    sorry I can't sign it 'cos I'm not in the US :-(
  5. cruzgirl

    cruzgirl

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  6. glenp

    glenp "and this too shall pass"

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    Is this petition still valid now?? to have the other possitive paper published???

    glen
  7. judderwocky

    judderwocky Senior Member

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    the petition doesn't even mention the CDC paper... all were pushing for with the Petition is that whatever the NIH and FDA found needs to be put out... whether its one study or two....

    im not letting off it until they are published. there are rumours that alter has made a statement... but until i see something official from him or the NIH, i'm not closing it.

    we still need people to tweet and email their friends about this
  8. muffin

    muffin Senior Member

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    USA!
    Sign the petition now!!!

    Bumped to keep this on top.
  9. judderwocky

    judderwocky Senior Member

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    need some help

    Ok... im gonna need help with something...i want to get the petition moved up with an article on change.org... none of their staff are responsive... the only people that can post articles are apparently the writers. ive only messaged a few but people are either too busy to get back to me or i dont know, maybe they just don't check their inbox on there regularly... anyway i need you all to help me pestering them into giving us a featured section or maybe an article... this would give us more visibility on the site and i think a lot of people would respond to the petition if we could get a bit more visibility in the "Health Care" Section... there are a number of other good causes in that section, but this is something I think they could claim a victory on... they love showing their petitions succeeding and I think with a little push we could drum up a lot more support...

    if you could just contact some of the writers and staff with a link to to the petition , and let them know you would appreciate their help... it would probably go a long way...

    the other petitions on change.org sometimes get hundreds of thousands of signatures... many of the ones on there right now have 20,000 or more... we NEED to tap into this.
  10. glenp

    glenp "and this too shall pass"

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    I am surprised at the negative response I am getting about the petition - seems most do not really care to sign it

    glen
  11. judderwocky

    judderwocky Senior Member

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    patients? or family members? i got my dad to sign it...some people seem really excited ... i think others are still kinda in shock from the whole situation and just are too stunned to think in those terms - and i understand that... this is all very surreal.... unfortunately i feel that we must be proactive right now and those of that can need to be extra vigilant :) ... thx to everyone helping....

    and please, if you can email / contact the change.org staff and beg/plead them to get us a featured section ... let them know how much we would appreciate it

    this could be a really good opportunity to make connections with their staff that could be valuable down the road!

    ALSO...

    IF anybody lives in Barbara Boxer's district, it would be great if you could call her about this... she should already be getting a lot of the petitions ... i can see weve been sending a lot there.. and i feel this is a message she would be open to... someone in her area is going to need to call her though and mention it.

    i plan on calling Bill Nelson (FL) since i'm in his area.... if you could take the time to call the offices it would reinforce the impact of the emails...

    as some of the areas get more petitions than others ill try to let people know what officials are getting a lot of the letters

    If you have a website of blog... this is the code for the cool looking widgets....

    <span id='change_BottomBar'><a id='change_Start' href='http://www.change.org/start_a_petition' target='_blank'><strong>Start a Petition &raquo;</strong></a></span><script type='text/JavaScript' src='http://www.change.org/widget_flash/SinglePetition/change_embed.js'></script><script>change_setup('300', '30988', '#1A3563')</script>
  12. Dainty

    Dainty Senior Member

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    According to one article, the paper is being witheld by the authors themselves and not the HHS:

    Though I'm as eager as anyone to see the results, I'm glad they're making sure all their t's are crossed and their i's dotted, especially with the controversy. The stronger science wins every time.
  13. judderwocky

    judderwocky Senior Member

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    ok. lets think about it. the original articles and statements by the researchers all said that it was ready for publication. now let me ask you something, if you were the DHHS and you were going to order one of your underlings to stop a journal proceeding would you do it by telling everybody you had stopped them, or by ordering them to make a press release saying they needed more time.
    They have gone beyond the scientific process.

    This is being orchestrated by the DHHS. Why is there no statement about this on their websites????? They are trying to hush this up. They are playing us.

    I have worked in PR ... in the health field... and i see what they are doing.

    I will cease the petition when, and only when, we have the studies.

    "It is senseless to block publication because the two papers reach different conclusions. If both manuscripts were subjected to proper peer-review, and were deemed acceptable by the referees, then they should be published. The journal editorial offices must respect the opinions of the reviewers. By overriding their decisions, they have compromised the entire peer reviewer process.

    Blocking publication also sends the wrong message to CFS patients, to the public, and scientists. Not only does this action raise suspicions about their motives – are they trying to publish only the result they believe is correct? – but it ignores the very important fact that science is self correcting. Scientists are humans, and they make mistakes. But eventually the right answer will come to the surface. And that is why PNAS and Retrovirology should respect peer review, publish the XMRV papers, and let science correct itself." - Vincent Racaniello Ph.D., Professor of Microbiology at Columbia University Medical Center --- somebody completely unrelated to any of this controversy...
  14. judderwocky

    judderwocky Senior Member

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    UPDATE::::

    I have updated the petition with the new article information, and have updated our demands to reflect the new information :)


    NEW PETITION TEXT:

    I am writing today to request your action on a public health concern. Recently a link has been found to the debilitating disease Chronic Fatigue Syndrome (CFS), and a retrovirus, X-MRV. X-MRV has also been implicated by recent research in the development of aggressive prostate cancer. Since the original findings published in the prestigious journal Science, several groups have produced conflicting results. The Wall Street Journal has reported however, that the NIH and FDA were able to confirm the findings (underneath the direction of the NIH scientist who discovered the Hepatitis C virus, Harvey Alter). The Wall Street Journal has also reported the studies are being WITHHELD and subjected to additional tests due to the failure of the CDC to come to similar conclusions. No statement has been made as to the extent or nature of these additional procedures and tests.

    Tell the DHHS to allow the NIH and FDA to publish their papers without undue procedures and hurdles. Preventing these papers from being published diminishes the trust of CFS Patient groups in the CDC and its willingness to deal honestly with this disease. To allow CFS patients and those with Prostate Cancer the best hope of fighting their illness, we must have the best scientific information that our government is capable of producing. Allow the findings to be released with all speed and tell the DHHS to stop playing politics with science.

    Thank You,

    Also.... the "Description" has been updated with the following:
    ** UPDATE: The NIH states, on behalf of Alter, that it is subjecting the paper to additional scrutiny and tests. Yet questions remain - if the paper was good enough the first time, why does it suddenly need additional procedures and scrutiny (not applied to the CDC paper)? It is still unclear what pressure is being forced on this paper outside of the peer review process (specifically from the DHHS and CDC), and until that is made clear we must continue to press our elected officials to direct the studies to be released. Undue burdens placed on the NIH and FDA paper must not be allowed to circumvent the self-correcting nature of the scientific process.
  15. judderwocky

    judderwocky Senior Member

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    307 signatures so far.

    pleas help me contact change.org staff to get an article and a featured spot... this will help us drive more signatures.
  16. Jerry S

    Jerry S Senior Member

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    Sent emails to my family this morning, Judder. Thanks for your hard work!
  17. muffin

    muffin Senior Member

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    USA!
    SIGN PETITION! XMRV: Allow Science To Progress

    SIGN PETITION! XMRV: Allow Science To Progress

    http://healthcare.change.org/petitio...ce_to_progress


    It would be fantastic to see this petition blow past 500 and really beat on all the people and organizations that Judderwocky has had it sent to.

    Please sign this petition. Judder has covered the waterfront on everyone that must be notified. I am blown away by the huge number of people/orgs that he has included.

    Sign, get your family, friends, others to sign and post on all other CFIDS forums/websites/blogs.
  18. judderwocky

    judderwocky Senior Member

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    If anybody has the distribution lists for a support group... please pass the petition on to them.... also, if you have signed the petition, please give your elected officials a call just to make sure they got the messages, and press them for action! !!!

    We have about 390 sigs at this point.... keep it up :)
  19. judderwocky

    judderwocky Senior Member

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    WE broke 500

    The petition has now obtained over 500 signatures, I am now going to be boosting the target up to 1000!!!

    Great work everyone. I have called Bill Nelson and Barbara Boxer's offices... they say they are still processing emails and don't appear to have any idea what is actually in their inbox. If you could call thepeople we have been sending this messages to, it would go a long way. A lot of them are overrun with a whole bunch of issues, and we need them to hear ours. So call call call and twitter your faces. :p

    Great work!
  20. Hope123

    Hope123 Senior Member

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    I got my family to sign it. Great work, Judderwocky! Keep it up everyone.

    Also called Barbara Boxer's office and talked to a legislative aide. I would suggest people call the local offices of their reps. Reinforce message with follow-up e-mail.

    Boxer: http://boxer.senate.gov/en/contact/offices/index.cfm
    To find your Senators: http://www.senate.gov/general/contact_information/senators_cfm.cfm
    To find your Reps: http://www.house.gov/htbin/zipfind

    Think about what you want to say beforehand. Ask them what they know about CFS first -- they might not have heard of it, may already know a lot about it, have misconceptions about it, etc. You can engage them this way and also correct them mildly. I didn't want to overwhelm the aide with too much info so I gave a short spiel about CFS (at least 1 million affected; severe illness striking old and young people; sick for years- decades; no good treatments/ tests) emphasized more that 1) I wanted NIH/FDA paper to be published (i.e. say you want to see both positive and negative results) 2) blood supply issues need to be resolved. I gave Dr. Howard Koh's name as the person to contact at DHHS since he is the link to Secretary Sibelius for us. I then got the aide's name/ e-mail and told her I would e-mail more info later with links.

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