The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Historical video on CFS, please watch

Discussion in 'General ME/CFS News' started by Frank, Jul 20, 2010.

  1. Frank

    Frank Senior Member

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  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    wow, as I type with one hand as I lie on my side. I would think I would have seen this before now.

    Tina
     
  3. Dainty

    Dainty Senior Member

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    Wow. A long video, well worth watching.

    Interesting how they refer to it as "sif-ids" (CFIDS).

    Any thoughts on when this video was filmed?
     
  4. Doogle

    Doogle Senior Member

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    Filmed in about the 1992-93 time frame. Filmed in SF, Tahoe, Sacramento, various east coast locations. Participants Jerry Crum and Nancy Kaiser have both died from complications, most likely of XMRV (not suicide). I forgot that video but it sure brought back memories. Criminal that Ampligen isn't available to treat. It does greatly improve symptoms in a subset of patients.
     
  5. ixchelkali

    ixchelkali Senior Member

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    Wow. Thanks for posting, Frank. Nothing much has changed in 17 years, has it? Until now. I wish some of those reporters who keep referring to us as "desperate" patients would watch this; maybe they'd understand better.

    Dan Peterson and Nancy Klimas looked so young, just babies. One thing that strikes me is that the doctors who are helping us are all the same players. If we made a film like this today, where would we find the new young doctors speaking passionately on behalf of ME/CFS patients? It would be the same people saying much the same things they did in 1993.

    Did this ever air on TV, does anyone know?
     
  6. Andrew

    Andrew Senior Member

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    Does this documentary have a name? Is there a way to buy copies for distribution.

    BTW, see this one at the same site: http://vimeo.com/13048135
     
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    yeah, where did it end up airing?

    And I think Peterson looks like a dark-headed Robert Redford. Although they look different now.

    And, the fact that the specialists were coming close to retiring and no new clinicians getting in the field was one of the motivators for Annette Whittemore.

    Tina
     
  8. glenp

    glenp "and this too shall pass"

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    Thank you Frank

    I noticed (foggy now) threats that were made regarding Dr Cheney and someone else. This is noteworthy and could very well hamper others trying to help us. It could directly affect clusters not being reported

    glen
     
  9. anne_likes_red

    anne_likes_red Senior Member

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    That shocked me. That Dr Peterson was asked to take his child out of a preschool b/c claims of an outbreak were damaging the City's economic future.

    I feel so sad watching this....wondering where all those people (with CFS) are now, how they've fared all this time.

     
  10. jewel

    jewel Senior Member

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    Thank you so much for posting this. It is heartbreaking, but necessary viewing. J
     
  11. LaurelW

    LaurelW Senior Member

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    I liked the part about how it would be big news if somebody was kidnapped, drugged, and stuck in a room for years--but nobody pays attention to us for the same thing.
     
  12. Andrew

    Andrew Senior Member

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    In the second movie the news reporter says her producer got Reeves on the phone, and he said that the Lake Tahoe cluster is mass hysteria. Too bad they didn't have an actual recording of the phone call. OTOH, I think this confirms our suspicions.
     
  13. shiso

    shiso Senior Member

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    Wow, this was so well made. I think it's better than anything I've seen, and enlightening for those of us unfamiliar with the situation 20 years ago. The advocates and doctors in the film were SO articulate and credible.

    Stunning that has almost nothing has changed: the ridiculous "controversy" and the "mystery" factor, the continued skepticism of doctors, celebrities unwilling to speak out to raise awareness out of fear for their careers, lack of funding (the NIH person boasting that funding had increased from $500K to $3 million), etc. etc. etc.

    The documentary made it clearer than ever what a tragedy the CDC's initial response to the disease and the name Chronic Fatigue Syndrome has been.
     
  14. Frank

    Frank Senior Member

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    This video should be in the base info package every new patient gets. I will try to create such thing.
     
  15. Andrew

    Andrew Senior Member

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    I think links to one or both of these videos could be included in letters we send to people in congress, etc. We could make our points, and then offer the links as futher support for what we are saying.
     
  16. shiso

    shiso Senior Member

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    Good idea, Andrew. People are more easily engaged by video, and it may have the effect of drawing more attention to the points we make in our letters.
     
  17. IntuneJune

    IntuneJune Senior Member

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    WOW!

    I didn't watch this yesterday due to its length.

    Man, am I glad I came back to this and watched it this morning.

    Thank you.

    Where has this video been?

    June
     
  18. dipic

    dipic Senior Member

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    Does anyone know the title or source of this video perchance?
     
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    dipic, I love your picture.

    Ooops, that didn't come out right. I mean to say I like that you show the often hidden part of our illness.

    I am not flirting.

    Geez, my mouth and typing fingers get me in so much trouble.

    Tina
     
  20. anne_likes_red

    anne_likes_red Senior Member

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    I'm guessing this was uploaded by Etel Barborka whose son (I think) has cfs (and was a patient of doctor Bell perhaps?). Sorry for fuzziness. Anyway Etel is on facebook if you're a member - http://www.facebook.com/profile.php?id=1406383769 so you could ask a question or two about the source via the message function there maybe??

    Edit...Ooops that was for dipic :)
     

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