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!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

Conflicting Papers on Hold as XMRV Frenzy Reaches New Heights

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by charityfundraiser, Jul 2, 2010.

  1. charityfundraiser

    charityfundraiser Senior Member

    Messages:
    124
    Likes:
    21
  2. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    I hadn't even thought about the fact that Science would be getting on this. Seems kind of obvious now that I think about it.

    This is a good crew to have on board.

    "XMRV Frenzy"....in 'Science'!!

    .....oh yeah...here we go, it's gonna kick of now baby!
     
  3. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    Please somebody post the full text
    :cool::cool::cool::cool::cool::cool::cool::cool::cool::cool::cool:
     
  4. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    Check out the front page of the Science website.

    http://www.sciencemag.org/

    Judy Mikovits!!! Top of the news of the week section!!! Front Page!!!

    This is the journal that asked WPI to remove 'CFS' from the title of their paper.

    Now we're front page news!!
     
  5. ahimsa

    ahimsa Senior Member

    Messages:
    1,079
    Likes:
    989
    Oregon, USA
  6. CBS

    CBS Senior Member

    Messages:
    1,376
    Likes:
    300
    Western US
    Its a two-page editorial comment:

    Sounds like Science thought the Alter paper had been accepted and was pulled back.
     
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,388
    Likes:
    201
    Clay, Alabama
    Seems that is the case. If I have it right:

    submitted, reviewed, approved.

    DHHS asked to be held back. Was. PNAS got nervous, asked for more review. Got it. Some recommendations to do a few more things. FDA and NIH are.

    Tina
     
  8. CBS

    CBS Senior Member

    Messages:
    1,376
    Likes:
    300
    Western US
    Nothing else that I haven't seen before. It's actually about a full page in length.

    Somewhat telling that there aren't any comments by names like Coffin, etc. I suspect that they would rather wait and see what comes of the FDA paper. Still, nothing about the withdrawal of a paper after acceptance being unusual (although we've heard from others that it is quite unusual).
     
  9. CBS

    CBS Senior Member

    Messages:
    1,376
    Likes:
    300
    Western US
    Then they'd take away my account.
     
  10. xanadu

    xanadu

    Messages:
    63
    Likes:
    1
    The article continues

     
  11. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    936
    Likes:
    104
    London, UK
    Why is "Wilhelmina Jenkins" giving that ridiculous quote? What scientists exactly does she feel "sorry" for? Maybe she should reserve her sympathy for the patients who have been so badly let down not only by their governments, but also by their so-called advocacy organizations. Myra McClure is a big girl. She can take care of herself. Rather than focussing on patient-anger I suggest that "Wilhelmina Jenkins" focus on the reasons why some patients might be angry.
     
  12. jspotila

    jspotila Senior Member

    Messages:
    1,074
    Likes:
    609
    Ms. Jenkins and her daughter are both patients, and she is well acquainted with why the patient community is so angry. She made very powerful remarks at the public meeting on the CDC's five year strategic plan last year, telling CDC that all we're asking for is that they do their jobs.
     
  13. akrasia

    akrasia Senior Member

    Messages:
    164
    Likes:
    216
    Idiot Compassion

    "I feel bad for the scientists, because it's true, we are a very angry community," says Wilhelmina Jenkins, a physicist living in Atlanta who has had CFS since 1983.





    Larry Kramer, one of the founders of ACT UP and Gay Mens Health Crisis, wanted an apartment in a co-op where Ed Koch lived. The former mayor of New York refused clean needles to drug abusers, even when it was clear that this would save lives. Koch consented to Kramer's bid on the condition that he wouldn't speak to him, even going so far as to take out an order of protection stipulating this.

    Well, one day they found themselves in the mailroom, with a couple of other tenants. Kramer had been walking his maltese. He scooped him up, turned toward Koch, and addressing the dog said, "This is the man who killed daddy's friends."

    That was the spirit that animated ACT UP, whose successes are now legend. McClure's behavior was despicable. She took advantage of her 15 minutes of fame to slime the character and work of one of the champions of this illness. I think she got off lightly.

    To even entertain the idea that the expression of anger by patients had anything to do with the obscene failure to address this disease is grotesque. The CAA, under the leadership of Kim McCleary up until just a short time ago colluded with the CDC and their board rubber stamped it.

    Simon Wessely always whines about patient anger, threatening to leave the field because of it. A consummation devoutly to have been wished.

    What was done to us is a crime against humanity and our primary advocacy organization never understood this. How can you not be angry?
     
  14. Athene

    Athene ihateticks.me

    Messages:
    1,135
    Likes:
    155
    Italy
    What Akrasia said.
     
  15. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    936
    Likes:
    104
    London, UK
    Brilliant post Akrasia! I always knew Ed Koch was a complete scumbag, but had never heard this story before.

    McClure did indeed get off lightly, not least because apparently she is a bit of a dragon herself. Certainly not the shrinking violet she portrays herself to be. Feelings hurt by an anonymous email? I don't think so. She got out because she made a mistake and rather than backtrack, she took the easy way out.

    I totally agree with you about the CAA. They and their UK counterparts sold us down the river a long time ago.
     
  16. shannah

    shannah Senior Member

    Messages:
    848
    Likes:
    179
    Exactly!!!!

    There's a posting this morning on CFSMEx that another one of our long termers succumbed recently to this dreadful disease. She also was waiting for all this XMRV stuff to straighten out. There is an urgency here for many of us and these political maneuverings causing delays and smoke screens are infuriating.
     
  17. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    154
    Essex, UK
    McClure's comments are merely ad hominem of the patient community-by-numbers. It's almost like it was read from a manual... "How to construct CFS patients and advocates as angry, dangerous morons".
     
  18. KnightofZERO

    KnightofZERO

    Messages:
    69
    Likes:
    1
    Wilhelmina Jenkins was a former CAA board member if I am not mistaken. I hope her quote was taken out of context, or clipped, or she was questioned in a leading way.

    It ought to have (and hopefully did) at least mentioned that with such a horrific illness that isn't funded for research except in the most minuscule terms... where Federal Scientists seemingly have a right to slander patients as "Mercedes driving nut-jobs" as Straus put it (from memory), in which some people either lose all independent capacities or even die while the very people put in place to deal with this sort of situation sit back and do nothing (or move research backwards), of course people will be (rightfully) angry and anytime a large group of people are angry that anger will get misdirected to some extent.

    Of course when a large enough group of people is angry, with very genuine grievances in this case, there is a very good chance a few of them will step over the line from legitimate criticism to personal attacks. It's unfair to judge any group past or present in this way.

    Edit: This reminds me of the sort of thing where people are saying CFS patients are taking antiretrovirals like candy whereas only a few (three I think?) out of the thousands in this forum are taking them at all and certainly not before serious consideration.

    I think actually more people (still probably not more than a few times that three) would be taking them if we didn't already know that there would be those who would try to push this "narrative" and cast us as misinformed and over-medicated dupes. Patients have shown a huge amount of restraint in my view.
     
  19. jspotila

    jspotila Senior Member

    Messages:
    1,074
    Likes:
    609
    Can anyone with access to the full article (different from what was posted free on the Science website) provide context for the quote? It won't answer the other questions about how she was questioned, etc., but would at least give us context of the article itself.
     
  20. xanadu

    xanadu

    Messages:
    63
    Likes:
    1
    The short version is just about the same, but the two paragraphs before the last were removed.

     

See more popular forum discussions.

Share This Page