1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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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. jenbooks

    jenbooks Guest

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    But that's the thing--Barry Marshall knew he was right and he persisted and won the Nobel.
  2. Recovery Soon

    Recovery Soon Senior Member

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    F Yeah.

    Let's keep this ball rolling.

    Dr. Donnica is the right person at the right time.

    GREAT JOB ON THE PAPER (under an hour no less- EXCELLENT)
  3. Dreambirdie

    Dreambirdie work in progress

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    Thank you. And FYI: I'm not done yet!

    There are other things I am conspiring at behind the scenes. :eek::cool::cool: he-he-he

    (too bad there is no demonic laugh smiley!)
  4. anne

    anne Guest

    Well done, indeed. Thank you, Dr. D.
  5. jenbooks

    jenbooks Guest

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    Mike...

    I know. I'm still closely following the three patients your doc is working on, and no matter what happens with them, your story is one of courage and miracles. And it doesn't mean there's not a scientific basis for what happened with you.

    The only issue with your doc is the art required--I don't believe it can be taught that easily.
  6. Sing

    Sing Senior Member

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    Give Feedback tomorrow

    I plan to watch Dr. Ox (typo) tomorrow and will email Judy Rybak as you suggest. I thought your write up for his website was excellent and I'll use it as a resource. Thank you!

    Cecelia
  7. Recovery Soon

    Recovery Soon Senior Member

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    Letter to Dr. Oz (re: Dr. Teitelbaum)

    FYI- I sent the following letter to Dr. Oz (about a week ago)

    Never heard back:

    Dear Dr. Oz,

    Please be careful when presenting Dr. Teitlebaum as an expert on CFS. Dr. Teitelbaum oversimplifies a devastating disease, and overstates his ability to control the condition. Very few people are ever cured from CFS, and Dr. Teitelbaum's claim of helping hundreds of thousands recover is pure fantasy.

    Dr. Teitelbaum conveniently refers to CFS as Chronic Fatigue on television, which widens his target market from 1 million Americans who are debilitated with a neuro-immune dysfunction (of which fatigue is but ONE symptom) to people who feel generally tired, which is nearly everyone on the planet.

    CFS destroyed my life. It onset over 3 years ago, when in my mid-30's I was in tremendous physical shape, exercising for hours a day in a boxing gym, and working as a Creative Executive. One day I got the flu- and it NEVER LEFT.

    I read "From Fatigue to Fantastic" and went to the Fatigue and Fibromyalgia clinics, where Dr. Teitelbaum is the Medical Director. After spending thousands and thousands of out of pocket dollars, I was very far from a recovery, as was every single other patient with whom I encountered, who had taken Dr. Teilebaum at his word. The final blow came when the head physician at the Connecticut F&F clinic left the practice. Privately, he confided to me that he could not "emotionally handle treating people and watching them not get better." He confirmed that he had not seen ANYONE get cured on Teitelbaums SHINE protocol. That was the last time I went to the clinic.

    Yes, Dr. Teitelbaum has some relevant knowledge on herbal supplements, which may offer very modest benefits to CFS patients. But his overall message is one which oversimplifies a devastating condition, and further alienates CFS sufferers from a world in which we have been ignored, disrespected, and left to lose everything we have in life. Such practices have left us unfunded and unrecognized by the CDC for years- a travesty beyond explanation.

    The final insult is being told that we have imagined this condition, which is nearly always the first assumption, and usually the final diagnosis. In fact, Dr. Teitelabum himself told me in person at one of his appearances, that I was clearly a very driven person, and that I needed to examine the issues in my life if I wanted to get better, when I pressed him on why I was seeing no benefits from his protocol. Dr. Teitelbaum is used to wooing crowds with a library like knowledge of Herbal Remedies, and is not very used to pointed questions about his recovery discrepancies. Pretty ironic, coming from a man who touts himself as a CFS advocate fighting against the nitwits who dont believe CFS is a physical disease. In many ways he perpetuates the very same stigma he claims to guard against.

    I would rather this disease go unrecognized than see this man do further damage on your show.

    I can only hope in the future you will not further the grossly inflated "cure" claims of your guests, and do the homework necessary to validate the suffering of people who have dealt with more than you could imagine for longer than you would ever hope to believe.

    If you want a reference point- just think of MS patients being laughed at in the early 20th Century, and called crazy.

    Pretty unbelievable, huh? Well, believe it, because this is the reality for a million CFS patients in the early 21st century. And from the looks of the treatment of this condition as presented on your show, things are not about to change any time soon.
  8. Michael Dessin

    Michael Dessin Senior Member

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    jenbooks

    Thank you very much, really appreciate your comments.
  9. anne

    anne Guest

    What a wonderful letter. Thank you so much for writing that.
  10. shiso

    shiso Senior Member

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    Thanks Recovery Soon for your letter - it so effectively expresses what I would have wanted to say.
  11. glenp

    glenp "and this too shall pass"

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  12. Kati

    Kati Patient in training

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  13. anne_likes_red

    anne_likes_red Senior Member

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  14. misskoji

    misskoji Guest

    Dr. Donnica

    Thank you so very much for such a succient, well written article and every thing you do for us. You are brilliant! It means a lot to us that you come and interact with us here. I'm just sorry that you also understand the illness the way you do, from a very personal perspective.

    Dreambirdie, many thanks are also owed to you. I can't wait to see what else you're working on. You rock!

    I'm hoping a lot of us will write or scribe our comments of thanks to Dr. Oz, the producer, ect after the show airs.
  15. anne

    anne Guest

    Dr. Donnica, your article was wonderful. I was curious about the mention of noisy places--could you talk a little more about that?
  16. blackbird

    blackbird caged.

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    Thanks to everyone for what they're doing here.

    The more I read, the less I trust my ME diagnosis, partly due to the complete absence of brainfog.
    In spite of that, I found the colourscheme on the Dr. Oz site a little difficult to read.

    I think I first saw this on twitter though:
    http://lab.arc90.com/experiments/readability/

    It takes the main text of a web page and presents it more like an easy to read word/openoffice document.
    I don't know if it works for iexplorer, but I've tried it on firefox, opera and safari (Windows) and it works with all three.
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Likely

    Likely, Donnica is referring to noise sensitivity, which is one of the many symptoms that comes with this illness. Light sensitivity is common as well. Basically, anything that puts a demand on the central nervous system.

    Healthy people can handle the demand without even noticing it. For us, it starts a downward spiral if the demand is high.

    Basically, we are sensitive.

    I hate to say that about myself. But it is my body that is sensitive. My personality is not. And I hate that my personality does not match my body, or vice versa.

    Tina
  18. Andrew

    Andrew Senior Member

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  19. Michael Dessin

    Michael Dessin Senior Member

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    Blackbird

    Symtoms including brainfog come on at different phases of this illness.

    Many get brainfog early in the illness others not for a very long time.
    Mine started 12 years after onset and got much worse than brainfog.

    Usually the physical limitations are first to be noticed and most obvious.

    Mike
  20. Andrew

    Andrew Senior Member

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    BTW, I'd gladly lend my CFS to Dr. Oz for a couple of years. Let him do all his stretching stuff. Then at the end of the two years, no need to give it back to me. His stretching will have cured it.

    OTOH, I'm willing to try his stretching. Heck, I tried Luvox, which is an antidepressant that supposedly cures CFS. As you might guess from my ongoing participation here, it didn't work.

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