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Dr oz preview - "simple stretching for xmrv"

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by parvofighter, Dec 1, 2009.

  1. Michael Dessin

    Michael Dessin Senior Member

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    NO

    Any publicity is not good, if it's the wrong publicity. Simply making folks more aware of a fatiguing condition does us 0000 good. It may make things worse.

    Most of our doctors would be no more interested in helping us if they still think this is about fatigue, XMRV or not.

    If they describe XMRV as having neuro-degenerative consequences our doctors will feel differently.

    Mike
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    did you see

    Hey, this is good. If this is a preview, maybe on the whole it will be good. (particularly page two contrasting to depression)

    And is that my quote I see in there? akin to calling Parkinsons disease chronic shaking

    I think I suggested that. Or am I imagining I said it? No, I think I did. I think it is a good one. Glad it got some Web space.

    Tina
  3. Recovery Soon

    Recovery Soon Senior Member

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    Just in case this is true, we need to FLOOD Biden with letters. Please everyone- write a letter to Biden, Obama & your Congressman!
  4. jenbooks

    jenbooks Guest

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    I understand and don't understand.

    On the one hand, as a lymie, it was delightful that my ENT yesterday understood when I finally confessed to chronic lyme and using a hyperbaric chamber--instead of thinking I was nuts. That's because she saw the remarkable documentary, Under our Skin.

    So, one good documentary, one good show, can certainly provide a turning point.

    On the other hand, I am sorry but I never put much stock in trying to "throw" the game with the Dr. Oz show. I said so back when. I would much rather we focus on good science. Good science is making a difference in the lyme world slowly but surely. Demonstrating high rates of borrelia in ticks and high rates of coinfection. Demonstrating cyst conversion when taking antibiotics such as doxycycline. Demonstrating one particularly virulent strain...etc. All this research has come out in the last year.

    It's the science that will make the difference--to identify causative pathogens and to find ways to render them latent or kill them outright.

    I know this is probably not a popular view. It's just my view and I don't mean to be preachy.
  5. Recovery Soon

    Recovery Soon Senior Member

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    Ditto

    Teitelbaum does damage every single time he is on Television.
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    don't

    Don't underestimate the power of the press.

    Oh, and I forgot to mention, it is good to have newspaper articles because many T.V. shows pick up news tips from newspaper articles. The newspapers do most of the work, and the T.V. does the three-minute version. T.V. puts money into equipment. Newspapers put money into reporters.

    This is especially true in smaller markets (as opposed to national)

    But it is true overall.

    Tina
  8. Michael Dessin

    Michael Dessin Senior Member

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    Agree

    Thanks Recovery soon and good points jenbooks.

    It just urks me, out of all suggestions when discussing XMRV and consequences this idiot says to stretch.

    For some patients stretching is impossible others not. Regardless, going past your limits in any capacity is VERY bad, you think he could at least say that.

    Before you know it he will suggest GET.

    jenbooks, yes, to make significant headway for the millions of sufferers, our scientific community craves evidence, thats the way our system is designed, headway will be made, slowly but surely.

    At the same time, many patients are not willing to sit around for another 20 years to wait for science based treatments, or at least western culture approved treatments.
  9. DrDonnica

    DrDonnica

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    Thanks to this group, I did persist with following up with the producers at the Dr. Oz Show and was given the go-ahead to write a companion article for the segment for their website. I only had less than an hour to get it together & they did get it up right away. They were great in allowing me to submit twice the length they had originally allotted. Thanks Tina for posting the link and calling this to my attention! And yes, I used your line about calling CFS "chronic fatigue being akin to calling Parkinson's chronic shaking". . .and added the TB comparison for those who don't know what Parkinson's is. Yes, I found at least 1 typo, but I'll look it over carefully now to find others.
    And: to share with you the impact that the media has, I just received an email about the segment from the director of the Office of Research on Women's Health saying she was sorry she was going to miss it. . .but opening the door for us to discuss CFS further. The impact of these shows is not always reading apparent, but if I didn't believe that there was a positive impact, I wouldn't be doing this.
  10. DrDonnica

    DrDonnica

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    Urgent: Dr. Oz show

    My husband just informed me that when he went to Tivo the Dr. Oz Show for tomorrow, that there are 2 shows which air at different times, at least in our area. In our area, it's the 3pm show which covers the CFS segment. I would hate for people to be looking for the show and tivo or watch the "wrong" one! (or maybe I would be better off if they did. . .!)
  11. JillBohr

    JillBohr Senior Member

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    Thank you!

    Samuel,

    Actually I am honored to be welcome on this forum. I have learned so much in the little time I have been here. I am grateful to all of you. This is the best place to be when any news comes out and I am anxiously awaiting any news that comes out regarding the XMRV retrovirus.
  12. KC22

    KC22 Senior Member

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    Dr. Donnica...

    I just read your article on Dr. Oz's site. It was excellent... You really captured this disease in a few short pages.

    I believe I will print this one and offer it to many of my friends and family.

    We cannot thank you enough for all you have done and continue to do to help this community of people.:)
  13. shrewsbury

    shrewsbury member

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    Oh Dr Donnica - you've got me laughing! We're all behind you and so appreciative of your being on the show, along with everything else you do.

    Thanks for the warning of 2 shows being on.

    Thank you also for writing an article for the Dr Oz show data base. It's great.

    thank you thank you thank you


    islandfinn:)
  14. Dreambirdie

    Dreambirdie work in progress

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    Thank you again, Dr Donnica, for your work on this.

    I too am hoping that it WILL have SOME positive impact. I put considerable energy into influencing the Oz Show with a letter writing campaign, and repeatedly called upon the WPI folks to make contact with Oz, which they FINALLY did. I am eager to see what comes of it, and I am SURE it will be better than the first Dr T show that clumped CFS with exhaustion.

    Big changes happen slowly. When you eat an elephant, you have to do it one bite at a time.
  15. Michael Dessin

    Michael Dessin Senior Member

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    Dr Donnica

    Just read your link....Very good, there we go.

    I know it takes a lot... to sort of go against the grain in mainstream thinking of ME/CFS and other conditions. Sometimes you have to put your own well being and reputation on the line. In doing so many others will be rewarded by your efforts.

    Thanks

    Mike
  16. DrDonnica

    DrDonnica

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    Thanks so much to Dreambirdie for getting the ball rolling on this and for doing all the behind-the-scenes AGITATING to make this happen! Thanks to all for all of your support for my small part in this in advance of the show coming out. And, just a gentle reminder that if you do like the segment tomorrow (or at least mostly like it!), it would be VERY positive reinforcement to thank the producers for revisiting CFS, having us on, etc. The segment producer is Judy Rybak (JRybak@zoco.com) and I think she really did a great job as well, pulling a lot of different elements together in a relatively short time.
  17. Dreambirdie

    Dreambirdie work in progress

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    Unfortunately, agitating is one of my brain's favorite activities. :p:p:)

    At least SOMETIMES it comes in handy.

    Viva la REVOLUTION!
  18. jenbooks

    jenbooks Guest

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    That's great DrDonnica

    I'm media--print--so I understand the power of the press. But the greatest influence I've had in the media is when I can marshall science, then I can add good stories and really effect change. So I wish I had time and energy to engage scientists more. It's hard to have chronic lyme, support yourself, deal with all the strange crises of the illness that derail you, *and* convince the scientists, but they are the ones who will solve the terrible puzzle. Last year I convinced a Hungarian scientist who I consider a genius to work on borrelia as he probably had a way to disable the heat shock proteins but then his lab director refused to have borrelia infected mice in the lab. And I need to follow up on that as he will donate his equipment and expertise if I find a lab. That seems a bit challenging but not impossible. It is my particular bias that one brilliant dedicated scientist can change the destiny of many. Such as Barry Marshall who found that h. pylori is the cause of ulcers--not stress.

    By the way, let me add that I think you're the perfect spokeswoman for ME in the media and I'm glad for all you've done.
  19. SDD1244

    SDD1244 Guest

    "Such as Barry Marshall who found that h. pylori is the cause of ulcers--not stress."

    Jenbrooks,

    And what a shame that Dr. Marshall's colleagues laughed at him when he told them his theory. I recall reading that he actually swallowed h-pylori to prove that ulcers were caused by bacteria. Speaking of bacteria, I really do hope that we start talking more about mycoplasma infections in not only CFS patients, but HIV, Gulf War Syndrome and autoimmune diseases as well.
  20. Koan

    Koan Be the change.

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    Thanks so much Dr. Donnica and Dream for all the effort that's gone into this endeavour. I admit that I was skeptical but those two pages are excellent!

    Well done, ladies!

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