1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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Dreambirdie's video is on ireport.cnn.com!

Discussion in 'Action Alerts and Advocacy' started by muffin, Aug 26, 2010.

  1. muffin

    muffin Senior Member

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    USA!
    http://ireport.cnn.com/docs/DOC-484879

    CFS Patients Address the CDC
    August 24, 2010 | Santa Cruz, California | Vetting explained Posted by:
    all2true




    CNN producer note

    iReport http://www.youtube.com/watch?v=y7VdXX9P58w
    I made this youtube video and have no other way to download it other than to provide a link.

    Chronic Fatigue Syndrome (CFS) is a serious debilitating neuro immune disease, that is known to affect 4 million Americans, and 17 million people worldwide. CFS has been ignored and dismissed for decades, by both the medical community, and by the government agencies, that we have entrusted with our health. Because of the widespread ignorance regarding CFS, patients with this condition are often reduced to psychiatric cases, mis-treated by doctors, and not given the appropriate treatments that they need and deserve.

    The October 2009 discovery of the XMRV virus, in the blood of 68 of 101 CFS patients tested by researchers at the Whittemore Peterson Institute, is a revolutionary finding. It is giving many CFS patients hope for better treatments for this devastating disease, and possibly even a cure.

    The recent confirmation of XMRV in CFS subjects tested by researchers at the NIH and FDA needs to be taken seriously by the CDC, which has had a history of failing those who are ill with CFS far too predictably, and for far too long.
    Tags: te, patients, cdc, cfs, address
    Posted in Assignment: Health care reform and you
    ======================
    WAY TO GO DREAMBIRDIE FOR THE VIDEO AND TINA FOR THE BIRMINGHAM NEWSPAPER!!!!!!
    GREAT JOBS GUYS!!!
  2. Sasha

    Sasha Fine, thank you

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    Well done, Dreambirdie! Your video is brilliant and what a good idea to put it on this spot of the CNN site. Hope it gets lots of views - is there any way to tell how many?
  3. Dreambirdie

    Dreambirdie work in progress

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    I posted it yesterday, after many struggles to figure where and how.

    Please post a comment on the CNN page. Enough comments might inspire them to do a story. Thanks.
    http://ireport.cnn.com/docs/DOC-484879
  4. Otis

    Otis SeƱor Mumbler

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    DB,

    Left a comment for ya. Got on a bit of a soapbox. :Retro wink: Freaking tired of stories about "chronic fatigue" and photos of cute little harmless mice. The world needs to know this group of viruses are HUMAN viruses.

    Otis
  5. Dreambirdie

    Dreambirdie work in progress

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    Thanks Otis--

    Pass that link along to all you know who can leave comments.

    Wouldn't it be great to get a story about CFS/XMRV/Annette & Judy on CNN!
  6. SickOfSickness

    SickOfSickness Senior Member

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    Someone needs to post this to the relevant facebook groups.
  7. Gemini

    Gemini Senior Member

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    DB,

    Yes, a CNN story would be great.

    Also, would you consider submitting your video
    to the upcoming CFSAC meeting in October?

    Gemini
  8. Dreambirdie

    Dreambirdie work in progress

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    Sure, I can submit the video, but I thought they wanted personal stories at the CFSAS meeting... Mine doesn't exactly fit that category.
  9. Gemini

    Gemini Senior Member

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    Your video speaks for so many ME/CFS patients too ill to
    travel to DC to testify in person or to sit at a computer and
    type up their testimony.

    Submit on behalf of a group of patients to get its content
    in the official record? Just an idea...it's such an excellent
    piece of work!

    Gemini
  10. Dreambirdie

    Dreambirdie work in progress

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    Thanks Gemini, I will do it and see if they accept it.
  11. shrewsbury

    shrewsbury member

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    Thanks for persisting to get this oniCNN db. Like Otis - I got on a bit of a soapbox too.

    Hope more join in commenting; it only took a few mintues to register with iCNN, have them conforim registration via email, and then to be able to comment.

    http://ireport.cnn.com/docs/DOC-484879
  12. Dreambirdie

    Dreambirdie work in progress

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    Thanks for posting your comment, SB. I really hope more people do this.

    The media needs to know there is interest in doing a story about CFS... and they won't know unless we TELL them.

    Your comment does not need to be long. Here's a simple one.
    SAMPLE NOTE TO CNN:


    I have been ill with CFS for ______ years. I feel very ___________ (pleased, relieved, thrilled) to see the PNAS research paper has finally been published, replicating the earlier WPI study. Please do an in depth story about this. Thank you.
  13. ballard

    ballard

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    I posted a short comment. Please, let's get lots of comments. The fabulous media coverage that we have been getting is great!!!!
    Let's keep it coming.
  14. JMK

    JMK

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    Go Dreambirdie!!!!! Outstanding job on the video and all of your advocacy efforts!! I left a comment, too!!! Keep em' coming guys!!!!
  15. Dreambirdie

    Dreambirdie work in progress

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    Hi Ballard--

    I'm not sure if your comment got posted...? Take a look and see. Make sure you are registered beforehand, and don't put any links in your post or it will be rejected.
  16. ballard

    ballard

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    Hi Dreambirdie,
    My comment got posted under CFS16yrs. Thanks for checking.
    Ballard
  17. dannybex

    dannybex Senior Member

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    I posted a comment and hope others will too. it only took a minute to register. Now if only I could think and write faster...!
  18. Dreambirdie

    Dreambirdie work in progress

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  19. Finch

    Finch Down With the Sickness

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    An Excellent Idea!

    Thanks once again, Dreambirdie, for another excellent idea. I have registered and submitted a comment and urge anyone else reading this to do so.

    Gee, I've never been one to speak out like this before, and I think I'm kind of starting to enjoy it! Hmm...

    Gotta love the Internet and email. It gives a voice to those who've never had one before. Now if only someone with some influence will pay attention and respond! C'mon CNN!
  20. Dreambirdie

    Dreambirdie work in progress

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    I am so glad to hear that you have begun to enjoy speaking out. YAY!

    It doesn't take much effort and it adds up when we have many voices joining in.

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