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Time for the Big Talk, II. Expectations and consequences.

Discussion in 'Action Alerts and Advocacy' started by hvs, Dec 31, 2009.

  1. fresh_eyes

    fresh_eyes happy to be here

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    It's complicated, Teej, but I think it's safe to say that there's some possibility in that direction. You (and everybody) can read an excellent, clear explanation by Dr Yes, now in the first post of the DSM/WHO thread.
  2. Ronan

    Ronan Senior Member

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    I tried sending a Private Message to hvs yesterday. I checked my sent PM folder but its empty so i was wondering if the PM's are working after the Forum upgrade? Anyone else having problems with them? I was suggesting that hvs might be interested in writing an article on this topic for my site as i think journalists will probably come across it when Googling XAND or XMRV so it might help to educating them on the real situation going on.
  3. starryeyes

    starryeyes Senior Member

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    That's great. :) I've been trying to follow it and it is really complicated. I bet they make it complicated on purpose huh?

    Good idea Ronan and yeah, I lost a PM.
  4. Robin

    Robin Guest

    Hi Ronan,

    With this version of VBulliten, you have to check a little box to tell it to save your sent PMs.

    I went to the Notification page and clicked on send new message then I scrolled down.

    Under the body of the private message, you'll see a bunch of checkboxes. Make sure you check the on the one that specifies you to save the message in the sent items folder.

    [​IMG]

    There might be a setting somewhere for this but that's beyond me. If you bring this up in the "Nuts And Bolts" forum, Kim and Cort can help you further. If you have any more technical questions that's the best place to post them.

    Hope that helps!
  5. Samuel

    Samuel Bedbound with NO DOCTOR

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    This disease is not an ordinary cause. Few people who are personally affected are going to just help themselves. I think that most people who are reading this will agree that they, personally, will advocate for others (for example).

    To me, Annette Whittemore has done everything right so far.
  6. jspotila

    jspotila Senior Member

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    Both the Association's Board and staff recognize the importance of a press strategy on XMRV replication studies. Some resources were reallocated to help with communications strategy in the short term. I agree that communications with the general public about XMRV replication studies, as well as communications with the CFS community, are very important and we are doing our best to get it right.
  7. mvwu

    mvwu Guest

    Thank you, Jennie. I'm glad the CAA is on this, and hope that the organization will use the guidelines proposed by hvs in putting together their response.
  8. hvs

    hvs Senior Member

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    ...And away we go.
    BBC headline proclaims recent claims for retrovirus behind CFS is false.
    1. Lazy reporter fails to find out exactly who Wessley et al studied (i.e., it was probably the bogus Oxford Criteria population)
    2. Lazy reporter fails to describe how Imperial College/Wessley findings were peer-reviewed; or, more, likely fails to inform reader that they have not returned from peer review at all
    3. Story implies that 0% tested positive for xmrv which makes study itself suspect.
    =
    Doesn't matter: a big institution like BBC has now implicitly put stamp on xmrv is bogus story.

    Time to swing into action, CAA. Write the BBC demanding answers for 1-3. Take preemptive action by contacting Denise Grady and others in the press. Take preemptive action by posting response on the front page of the CAA website questioning Imperial College/Wessley's subject population, questioning fi they used the same techniques as the WPI, questioning the peer review process, etc. etc. By explaining what's wrong with the Imperial College study and the BBC story, you can educate the press in advance of the CDC's inevitable failure to replicate.

    Too many un-answered stories reporting [bogus] failed attempts to replicate and it won't matter when legitimate replication attempts come in based legitimate CFS populations: the public and the medical community will only remember these headlines.
  9. anne

    anne Guest

    Yes. It's time to fight.
  10. fresh_eyes

    fresh_eyes happy to be here

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    Absolutely. Wessely is listed in the paper as having defined the cohort. Now is the time, CAA.
  11. hvs

    hvs Senior Member

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    CAA: unless I'm reading the study wrong, it looks like there were no healthy controls! Were they even capable of finding xmrv at all?? It looks like a psychiatrist was in charge of defining the patients studied! And it looks like people with EBV or other herpes-family infections were excluded--what if xmrv needs these to operate!?
  12. mvwu

    mvwu Guest

    CAA, you are up to bat. Time for your home run.

    It is time for your press release, CAA. (May I add -- if your response is wishy-washy it could do us more harm than good.)

    This is a quickly pulled together study which can't be called a replication because the subjects studied, unlike the WPI subjects, did not meet the Canadian Consensus Criteria. There are also plenty of other reasons, duly noted in the thread "The Fight is On," why the conclusions drawn by the authors are questionable.

    Go for it! Make us proud.
  13. _Kim_

    _Kim_ Guest

    XMRV Negative Results Emphasize Need for Robust Replication Study
    by Suzanne D. Vernon, PhD

  14. Robin

    Robin Guest

    That was such a great paper, Dr. Vernon. Thank you.
  15. mvwu

    mvwu Guest

    Thank you, Dr. Vernon. A speedy, firm response was called for and speedy and firm is what you gave us.
  16. anne

    anne Guest

    lock and load

    Now THAT is more like it! Good for them for getting in the arena. Keep it up.
  17. Dr. Yes

    Dr. Yes Shame on You

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    From Dr. Vernon's statement...
    Actually even that was not made entirely clear in their paper, as has been pointed out in the "Fight is On" thread; it may be that they were only using Fukuda selectively, for its psychiatric exclusions... This is a MAJOR question that the CAA and others have to confront Wessely with.

    If it turns out that the UK group excluded patients on the basis of physical findings then - right there - they have lost this particular battle.
  18. hvs

    hvs Senior Member

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    I'm having a hard time giving the Wessely et al paper any other way, Dr. Yes. The audacity is almost too shocking to believe.
  19. hvs

    hvs Senior Member

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    Way to go, Dr. Vernon, Ms. McCleary and other CAA staff and members. Dr. Vernon's letter was a good rapid response. I hope that you all are chatting the ears off any and all members of the press tonight highlighting, as Dr. Vernon stated, why the Wessely et al paper just doesn't stack up.
    Please do highlight the inappropriateness of their subject pool. It appears that those with ailments like herpes-family virus infections were excluded. It is definitely the case that the individual in charge of assessing their subjects, S. Wessely, is deeply distrusted by this community.
  20. anne

    anne Guest

    I think XMRV provides a perfect opportunity to begin talking about cohorts. Obviously it will be essential in these studies, but the fact of all the "science" coming from the UK and now the CDC on "CFS" people who aren't actually...you know...sick...is something we need to plant in doctors' minds. And we need to frame the issue for the next five SUPERAWESOME HASTILY DONE WE LOOKED FOR XMRV SO YOU DON'T HAVE TO studies.

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