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ALERT: Teitelbaum to be on DR OZ SHOW this FRIDAY!

Discussion in 'Action Alerts and Advocacy' started by Dreambirdie, Oct 19, 2009.

  1. mezombie

    mezombie Senior Member

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    My comment to the producers

    I figure it's not too late, and the more the merrier.

    Here's what I managed to squeeze out of my poor brain today:

    Regarding the taped segment of your Friday, Oct. 23 show featuring Dr. Teitelbaum:

    Please pull this segment. If it is taped, this should not be difficult. Replace it with anything else you have that is taped and easy to insert.

    If you go ahead with airing the tape, you will be inundated with angry viewers wondering why you are ignoring the study on XMRV and CFS published in Science magazine and reported world-wide by the media.

    Here is the latest article, an op-ed piece in the New York Times:

    http://www.nytimes.com/2009/10/21/opinion/21johnson.html?ref=opinion

    Wouldn't it be more worthwhile to have Hillary Johnson on your show? Or, even better, Judy Mikovits, the lead researcher of this study?

    Putting Dr. Teitelbaum on the air at this time will undercut the the effect this research is having on public opinion. Those who suffer from CFS are finally getting some validation from family, friends, and neighbors that they have a serious illness, not just "fatigue".

    And it's about time. Please don't stop this momentum.

    Sincerely,
    Marie



    Now that I've re-read it, I wish I'd added "in a future show" to the suggestion of having Hillary or Judy on the show. Oh well.:rolleyes:
  2. Koan

    Koan Be the change.

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    Hey Marie,

    Great letter! Straight, strong and to the point! I wouldn't rethink any of it. It's perfect.

    I think it's also very useful that everyone's efforts carry on in this way and, perhaps, they will be able to put the pieces together and call WPI!

    Good on ya!

    Peace out,
    koan
  3. Koan

    Koan Be the change.

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    Oz has a facebook page with discussions. Problem is, there's more than one. We should pick one, as a group, and post about this.

    This seemed way more doable before one of my kids started IMing me from overseas. He's at work and is messaging other people, talking on the phone and IMing me! He's ADD which makes all this totally doable, even comfortable, for him. My head is exploding.

    Anyway, last chance to impact Oz, so to speak. There is no discussion about "CFS" that I could see on the one Facebook page I went to before IMing happened. I went to the show page.

    ZZZzzzzzzzt zzzzzt zzzzt
  4. Dreambirdie

    Dreambirdie work in progress

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    How!

    Hi Koan--

    I have no idea how use Facebook. :eek:

    You would need to give me the link to his page and tell me EXACTLY where to go. (besides hell... which I am recently visiting :p:)

    Better yet, can you start the discussion page, so I know I'm in the right place? I am clueless...
  5. Koan

    Koan Be the change.

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    Hey Birdie,

    It's Wednesday night. I think we either got through or we didn't.

    I got a grip. I apologize for not getting it before setting out again on the campaign. I give my grip to you.

    Let's all go to bed.

    We can reconvene (is that how that's spelled? everything looks wrong and alien) after Friday's show if needs be.

    And, we can watch it with very smug looks on our faces :cool:

    :p

    Koan
  6. Dreambirdie

    Dreambirdie work in progress

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    Okey dokey. Tomorrow is another day. I still haven't heard back from Frankie (with the WPI). Maybe she wasn't able to connect with Oz people... I'll give her a ring in the a.m. nighty night
  7. Marylib

    Marylib Senior Member

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    Thanks for all this, everyone.
    Marylib
  8. Dreambirdie

    Dreambirdie work in progress

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    LATEST NEWS FROM WPI MEDIA COORDINATOR

    Thursday 9:30 a.m.

    Hi xxxxx,
    I just left a message for a different producer on the show. Since the show has already been taped it is doubtful that they will change anything at this point, but I am going to keep pushing for an interview nonetheless and will keep you posted.

    Thanks,
    Frankie
  9. Koan

    Koan Be the change.

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    Dream,

    contacting WPI directly was soooo smart of you!

    Thank you so much for keeping us apprised of the correspondence.

    I think they should pull it from the schedule, personally. Since Dr Oz is dispensing medical info as his prime objective, dispensing obsolete info will reflect badly on him and his team.

    Well, we can let them know that if the show goes ahead as planned.

    I am toast. If it wasn't harder to turn off my computer and remove it from atop my recumbent body, I wouldn't be here. As it is, it's easier to move my finger tips than it is to lift computer off self.

    thanks for all, Dream, who I imagine is now Cinnamon Toast!
  10. Dreambirdie

    Dreambirdie work in progress

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    Your welcome Koan. I agree they should pull the show segment.

    As for the toast, I am f-r-o-z-e-n toast. The computer room is the coldest room in the house. When I spend time in here I get my nasty cold back again.

    I really need to get a lap top. That should hopefully happen soon. Until then, I am going to keep a low profile around here.
  11. _Kim_

    _Kim_ Guest

    Teitelbaum mentions XMRV on Oz site

    Sorry if this was already posted, but I went to the Dr. Oz website to see when his show airs and clicked over to a post that Teitelbaum wrote: Effective Treatment for Chronic Fatigue (CFS) and Fibromyalgia

    Below is what he wrote for the "I" from his S.H.I.N.E protocol

    Infections. Many studies have shown immune system dysfunction in CFS/FMS, which can result in many unusual infections. These include many different viral infections (the recently reported XMRV virus is one of many well discuss this in an upcoming blog), parasites and other bowel infections, antibiotic sensitive infections, and, most importantly, fungal/Candida infections.
  12. Dreambirdie

    Dreambirdie work in progress

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    Hi Kim--

    The segment with Teitelbaum was taped before the XMRV news even came out, so he must have added the post just recently.

    Thanks for posting it.
  13. Koan

    Koan Be the change.

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    I think we may have had an effect.

    The promo today did not even use the word fatigue and certainly did not hint at any kind of illness but, rather, at a societal problem of being stressed and tired. We'll see.

    I think we should certainly watch, and comment on, the show.

    One of the top news items today is that 100,000 women signed a petition complaining about a sexist remark by Italy's Berlusconi. Make me think.

    :)

    ETA Two of the Dr Oz show experts are connected to Cleveland Clinic. Their timing is so not good. That big old Teitelbaum page on the Oz site is not promising.

    Oh well, the truth will out

    and we will help it out.

    :)


    EAgainTA In the old days we would all be breathing a collective sigh of relief that it was Teitelbaum and not any number of others. That was, in it's own way, progress. POV is everything.

    :)
  14. Marylib

    Marylib Senior Member

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    I bow to all you optimists out there!

    Personally, I will eschew the Dr. T. show ....note how he has already made up his mind that XMRV is just one of many viruses. And I note that the good old candida cure is still at the top of his "shiny" list....

    Sorry to be a downer. When it comes to profit and politics, my husband calls me Captain Bringdown. And I always harbor a secret desire to throw spit-wads at Dr. T, revealing my emotional age as about 9.
  15. Koan

    Koan Be the change.

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    Marylib,

    I agree with you, entirely. I just think we're lucky it's not a psychologizer. It's not good but it could be worse.

    It won't matter what he thinks or says soon. That will be so refreshing.

    Uhm, mon captitan, if you do the spit-wad thing... can I watch?

    :D
  16. Marylib

    Marylib Senior Member

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    Sure you can watch. You can even use some of my paper and make your own. Better use your own spit, as I hear I may have a contagious illness!
  17. parvofighter

    parvofighter Senior Member

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    Dr Oz: "Pay no attention to that man behind the curtain"

    OK, 11th hour, but here's my missive to the land of Oz:

    "Dear Dr Oz, I am aware that you will be hosting Dr Teitelbaum on your show today, and have to plead with you to PLEASE mention - and even set another show aside - for the far more scientifically robust, not to mention groundbreaking and breathtaking news that has blazed across the newswires: Science, the Wall St Journal, Reuters, the New York Times, just to mention a few. Namely, chronic fatigue syndrome is highly associated with a retrovirus.

    As you know, retroviruses are nasty entities, known to potentiate neurodegenerative conditions, cancer, and co-infections. Think HIV/AIDS the biggest danger to patients is often co-infections due to the immune suppression caused by the HIV retrovirus. Another human retrovirus causes forms of leukemia. And the latest research shows that XMRV, or Xenotropic murine leukemia virus-related virus, is not only highly associated with chronic fatigue syndrome, but also the most malignant forms of prostate cancer. Its that link between virus, neurodegenerative disease, and cancer and to those of us living with chronic fatigue syndrome, it comes as no great surprise we know how sick we feel. In fact, the cancer link is what got this breakthrough started, as researchers were finding that a disproportionate number of patients who had chronic fatigue syndrome for 20-30 years were dying of mantle cell lymphoma. They then saw similarities between the malignant prostate cancer patients and the chronic fatigue patients (eg. damage in both conditions to the RNaseL antiviral pathway), enlisted the lead prostate cancer researcher (Dr Silverman) onto this veritable SWAT team of researchers for chronic fatigue and presto discovery of a retrovirus in 95% of CFS patients - a stunning find.

    Granted, this is the first finding, and of course it has to be replicated - there is much more research to be done. Fortunately, this work is already happening in the UK with a population of another 500 CFS/ME patients and according to the Science researchers, the same astonishing numbers are holding up (95%+ of patients with CFS/ME have the retrovirus XMRV, with a ~ 4% prevalence in controls).

    Now here's something else on CFS and XMRV that hasn't hit the newswires yet. Are you aware of the tremendous work that German cardiologists (in particular) are doing in viral cardiomyopathy? Perhaps not coincidentally they have identified Parvovirus B19 (one of the many opportunistic infections associated with CFS) as the #1 cardiotropic virus, with other key ME/CFS opportunistic viruses: (EBV, HHV-6, CMV, enterovirus etc) also identified as key cardiotropic viruses. They're not just finding viral genome in the heart on PCR. Their immunohistochemical findings are also proving inflammation and auto-immune processes (eg. I have auto-antibodies against vascular endothelium, the lining of my blood vessels, which causes not just stroke symptoms, but also atypical angina due to artery spasm and inflammation - not blockage). If lymphoma etc might be shortening the lives of ME patients, there is also a mountain of research that these opportunistic viral infections in ME also lead to significant, and often fatal cardiomyopathy - which is for the most part overlooked in North America. I have out of dire necessity amassed a mountain of peer-reviewed research on this little-known reality for ME patients, and would be happy to share.

    Finally, how does this XMRV discovery potentially help a mom like me that has had a (Parvovirus B19) infection for 11 years, resulting in stroke, viral heart disease, and now extremely expensive immune therapy? Well, if I also have XMRV, (and of course if it IS identified as the smoking gun, which I'd bet it will be), then there is hope that antiretroviral therapy or genomics might treat the underlying CAUSE, and more importantly prevent my kids and husband from developing ME/CFS. And this might decrease the financial burden of my current immune therapy for the PVB19 infection, because ostensibly the XMRV cheerleader won't eternally be resuscitating the PVB19 infection - and this all will open the doors for more patients to receive combination treatment.

    Please don't dilute the integrity of your show by featuring obsolete, fringe approaches to a previously maligned condition that affects millions of Americans, and is finally entering the mainstream with a great honking splash of scientific credibility!"


    Better late than never, eh? (Yea, I'm Canadian)
  18. shrewsbury

    shrewsbury member

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    fer sure

    wow wow parvofighter - your letter makes me proud to be a fellow canuck!
  19. Finch

    Finch Down With the Sickness

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    Thank you!

    Parvofighter, IslandFinn, Koan - you Canucks are great! Wonderful letter, Parvofighter. Thank you. The cardiomyopathy part is of great interest to me, as I'm always feeling like there's a "weakness" around my heart. Nothing diagnosed, of course. I'm going to try to catch the segment today if I can. I'll definitely write my thoughts to Dr. Oz afterward if something strikes me.

    The sweet part is that my husband wrote to Dr. Oz around a month ago, before the XMRV news came out, to ask him to talk about ME/CFS on his show. I thought that was so nice of him and wonder if he had some impact on the segment being aired today. I do wish that Dr. T wasn't involved, though. As one who's gone through the SHIN protocol (I never got to the E, because I never got well enough to exercise) through the Fibro and Fatigue Centers, and knowing it did nothing for me, I can't feel good about his claims that he can cure us.

    Dreambirdie - thank you also for contacting the WPI. I really believe they'll be able to get on the Oz show, and the thanks can go to you if they do!
  20. Frickly

    Frickly Senior Member

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    I'm scared to watch.....

    I bet Dr. T says little about Chronic Fatigue Syndrome and sticks to helping people who are chronically tired. I think blurring the lines between CFS and CF will keep him from looking too bad when they find a cause and cure for us.

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