Dr. Teitelbaum's letter to us after the Dr. Oz Show

Discussion in 'Fibromyalgia Main Forum' started by tgeewiz, Oct 29, 2009.

  1. tgeewiz

    tgeewiz Member

    Dr. Teitelbaum posted a response to our criticism of the Dr. Oz Show. It was written this morning on a thread that many of you viewed several days ago. Therefore, since you may have missed it, I am re-posting it for everyone.

    Dear Friends,
    Many viewers were concerned that the Dr OZ show glanced over CFS and focused on fatigue and exhaustion, sometimes seeming to lump them together. I share this concern, and was very disappointed when I saw the segment. It had edited out most of what I said about CFS, including it NOT being regular fatigue but a separate and real and distinct problem, and discussion on its causes and treating it.
    Sadly, the best part of many shows ends up on the editing floor!
    It is not Dr Oz’ fault, but represent a difference in communications.
    When his producers called me a week before the show’s taping (~ 6 weeks ago—and well before the XMRV research release), their focus for the 12 minute segment was simply overall fatigue). In our discussions, I moved their thinking to a large focus on CFS, feeling that this desperately was overdue to be covered by Oz (and from there Oprah). Happily, the show development moved in that direction, with their even picking 2 CFS patients for me to evaluate and offer treatment options for just before the show.
    The focus shifted again the day before filming, as producers realized they had too much material for a 12 minute segment, so the patients were left off at the last minute. When the final taping occurred, it gave the impression that the show would play as taped, in which I was better able to discuss CFS causes, diagnosis, and treatment, as well as distinguishing it from regular fatigue. I was also disappointed when this was largely cut during editing.
    What occurred was a good entertaining segment for those with day to day fatigue (as it was initially meant to be), but a horrible one for those with CFS who know they have it, as the CFS came off being trivialized. I apologize for this, though it was not in my control. On the bright side, for those with CFS but without a diagnosis, identifying the combination of exhaustion and insomnia as a warning marker that you may have CFS, has been leading many to the correct diagnosis from the show. Hopefully, it has also opened the door to having a segment on CFS or FMS alone.
    So though it did not have the CFS focus we were hoping for (and that I was trying to move it toward), it does reflect getting a foot in the door, and I will be encouraging a show with a full segment on CFS & FMS, so it can be covered properly. Having worked with and encouraged the Oprah producers to cover these syndromes for many years, I would note the simple observations:
    Letters that are angry, and even abusive, likely leave them feeling the topic is still too controversial to cover. So venting may feel good sometimes, but if done without being reasonably considerate, it may simply once again push CFS/FMS OFF their “radar screen.”
    Letters thanking them for covering the topic, but noting how and why it needs to be improved, and why it is important to cover, will more likely get what we want. It is OK to thank them for covering CFS, and still note that:
    A- Dr T had almost no time to discuss CFS
    B- The segment blurred CFS with regular fatigue or depression—clearly not the case and a major disservice to those with the illness—requiring clarification
    C- New research on a blood test for CFS came out since the show was taped
    D- It would take a full segment , giving the expert enough time to speak, to properly even begin to cover the illnesses of CFS and Fibromyalgia
    Please consider a full segment on the topic, done sooner than later
    Please consider e mailing a gracious letter noting the above to Dr Oz

    Sorry, if there were misunderstandings, but know that I am on your side--and Dr Oz is as well

    Thank you
    Love and Blessings
    Jacob Teitelbaum MD

    [This Message was Edited on 10/29/2009]
  2. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I agree. Dr. Oz is wanting to appeal to a massive audience, not us few CFS patients. He did say that lifestyle can cause fatigue and ultimately lead to a disorder, called CFS.

    I see no problem with this. Although other triggers are there, we all know that lifestyle changes are part of our treatment. Stress is a part of our illness, just as it is for diabetes, heart disease and others.

    A person's lifestyle can actually contribute to their getting diabetes if they have a predisposition. It turns out, our predisposition may be XMRV. But Mikovitz said cortisol, which is released in times of stress, can turn on the virus.

    So it is good advice for all people to change their lifestyle to less stress. And for those with that predisposition, stress can trigger CFS. As I said, the show is after ratings which means doing something that appeals to a large audience.

    I also agree that letters to the show should be civil and appeal to reasoning. I would add one point that might be included that Teitelbaum did not: mention how many people are actually suffering from CFS but have not been diagnosed, don't know what they have and the reasons doctors have trouble diagnosing it. That is a larger audience than those of us who already know we have it. And so they can be providing a public service and attract a larger audience.

    A possible hook line:
    "If you are having problems thinking and feel so fatigued that you have trouble carrying out your responsibilities, you may have a mysterious chronic disorder that is on the rise."

    "Is a recently-discovered virus causing you and millions others from living their life to the fullest?"

    (notice I threw in the word "mysterious". It is all in the marketing folks.)


  3. joanierav

    joanierav Member

    well said, i agree with you.
  4. Forebearance

    Forebearance Member

    Aw, that was nice of Dr. T to write that letter. I'm sorry the CFS segment got chopped up like it did.

  5. sascha

    sascha Member

    i'm glad it wasn't left up in the air. it did seem kind of silly- Dr. T sitting there smiling but saying almost nothing.

    it was a silly show just geared to pull in a general audience. i would hope Dr. Oz would go deeper than that on ANY subject- but this was particularly disappointing since the word was out he'd be talking about cfids, and he really didn't at all.

    oh well- Dr. T sounds so reasonable and grounded, and he was disappointed too. really good to find out his reaction- thanks again, Sascha
  6. LindaJones

    LindaJones New Member

    thanks for posting

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