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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Easy Solution to Treat CFS - Dr. Oz

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Wayne, Aug 2, 2010.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Great idea! And he plays the angle of 'i'm the compassionate doctor that understands the women out there' yet he dismisses ME as tiredness! I'm glad "CFS' has been 'upgraded to a real condition'- what a joker!

    I do like the focus on practical solutions and do think things like cordyceps and diet can help a bit, so i think they're worth talking about; but he was way way over the line on this one especially after all the education and feedback he has gotten from ME patients and Dr. Donnica- shame on Dr. Oz for this harmful nonsense!
     
  2. Recovery Soon

    Recovery Soon Senior Member

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  3. JT1024

    JT1024 Senior Member

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    I'm beginning to really dislike Dr. Oz's actions. I already disliked Teitelbaum because of his arrogance and his claims to "cure" FM and CFS. At this point, Dr. Oz seems to want to hit hot topics for ratings - get people to watch his show or listen to him. The depth of his knowledge and the content or veracity of the messages provided by the "expert" Teitelbaum doesn't seem to matter. Just browsing through the comments on the Oprah link, I was disgusted. Since everyone has the answer to FM or CFS, then why the heck are so many of us still sick?

    WE are well aware that ignorance regarding FM/ME/CFS is the norm among physicians. To have a physician like Dr. Oz ignorantly address this topic in such a public manner, it is detrimental to FM/ME/CFS patients and it is truly a detriment to his own reputation. One would think he would want to preserve his reputation as a physician.
     
  4. Recovery Soon

    Recovery Soon Senior Member

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    Here's my analogy for Teitelbaum:

    He targets abandoned children (cfs patients), offers them the compassion/love they are missing from their parents (the medical community) and then RAPES THEM.

    Then he goes on television and purposefully distorts it as Chronic Fatigue, which further disenfranchises us from the medical community, in order to sell fatigue related products to the non CFS masses (thereby cheating on us).

    Afterwards he placates us with stories about how the medical community has forsaken us. "I don't know why Mommy and Daddy hate you so much. You're not crazy, you crazy critter. Come over here and give Uncle T a squeeze. Uncle T loves you, baby!"

    And then when called on it he offers a classic abusers apology "I'm sorry but all my talk about Chronic Fatigue Syndrome was edited out. It's not my fault. You must be irritable cause you're so sick and temperamental, baby. Come give Uncle T another hug."

    "By the way- have you met Cousin Oz? He'll take real good care of you. You can trust him too, baby."

    It's time to go Uncle T, you've overstepped your welcome, and our backsides can't handle any more of your cures.
     
  5. Dreambirdie

    Dreambirdie work in progress

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    Hi JT--

    This is actually a great letter to send to the Oz Show. Maybe you can just copy and paste it. http://www.doctoroz.com/contact

    I have already sent 2 email letters to Oz and talked 3 friends into doing so. I am making copies of my youtube video next week and will send a hard copy to Oz at his medical office. I encourage others to please send their complaints as well.

    I feel strongly that people like Oz and Teitelbaum need to hear from our community of very sick and struggling CFS patients, many of whom have done and tried just about everything, and still haven't found the "simple answers" they insist upon.

    It can feel good to vent and post our complaints here, as in preaching to the choir, but I think it would be even more useful to send the same anger and frustration DIRECTLY to those who are the source of the problem.
     
  6. Recovery Soon

    Recovery Soon Senior Member

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    Doctor Oz should know better. Many of us sent letters to him about Teitelbaum a while back. I sent the following before the XMRV show:


    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 Director for a major television network. 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.
     
  7. Dreambirdie

    Dreambirdie work in progress

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    That's a great letter, Recovery Soon. Please send another one like that to Oz.
    .
    We are dealing with an ongoing "struggle" here, not unlike the Civil Rights struggle, the women's rights struggle, the struggle to overcome apartheid, the struggle of native people's to regain their rights, and so many others. The powers that be are ALWAYS entrenched in rigid dogmas, and it takes many people many years to topple that kind of oppression and injustice. It's a long haul, like a marathon, and it's up to us to fight for us. No one else is willing to do it for us.
     
  8. urbantravels

    urbantravels disjecta membra

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    That was an awesome letter, Recovery Soon.

    I do think it's tremendously damaging for CFS to be conflated with "fatigue," as if we are just one end of a continuum of people who are fatigued and run-down. I think it's absolutely correct that Teitelbaum's business model is based on reaching a broad market of people with "fatigue" - certainly much more profitable than treating only those severely debilitated with CFS. We are a relatively small group without very deep pockets, many of us unable to work, etc.
     
  9. Wayne

    Wayne Senior Member

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    Dr. T / Dr. Oz - Devastating Combination

    Dear Recovery Soon,

    Thanks for posting your letter you sent to Dr. Oz. I thought it was amazingly articulate and spot on. I think it would be great if Dr. Oz were to receive more letters like this, as he clearly seems to be taking his cues from Dr. T.

    It's really quite a devastating development that appears to be taking place. For a long time, Dr. T. was consistently presenting a distorted picture of ME/CFS on more obscure medial outlets such as Psychology Today. But now that he's got Dr. Oz's ear, his message is being disseminated far and wide on national TV.

    I find it difficult to keep abreast of much of this, much less be proactive like you are with your letters. But it seems we're at a juncture (in many ways) where those of us who are able to should do what we can. With the modern communications we have available, we now have the ability to affect things in a way we haven't been able to in the past.

    Thanks to everybody for all your efforts to communicate the reality of ME/CFS. They're very much appreciated. :Retro smile:

    Best Regards, Wayne
     
  10. Cort

    Cort Phoenix Rising Founder

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    Maybe Dr. 'Oz' - (is that his real name?) is just what you would think he would be - a lightweight media personality.....
     
  11. Dreambirdie

    Dreambirdie work in progress

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    Yes, but unfortunately he has a BIG viewing audience, with a lot of people who believe what he says.
     
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yup, and he has creds, I think he is something like chief of cardiac surgery at Columbia Presbyterian, so people believe him and he has no excuse for falling asleep on the job.
     
  13. Wayne

    Wayne Senior Member

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    Hi Cort,

    I wish that were the case, and perhaps it is. Unfortunately however, I don't think so.

    With XMRV on the scene, I suspect many people who have long thought ME/CFS to be psychological are looking for cues on how to regard some of this new XMRV research. The cues that are being disseminated by Dr. Oz on TV will undoubtedly affect how many regard CFS. Referring to ME/CFS as a "short circuit in a person's energy system" (whatever that's supposed to mean :confused:) that can be easily remedied with green tea and D-Ribose is going to be readily accepted by many people.

    Have you seen the bumper sticker, "TV is gooder than books"? Unfortunately, we live in a dumbed down society. How else could ME/CFS be so misrepresented and misunderstood for the past 30 years? Most people don't read research papers and medical journals; they watch TV. And they rely on media and TV personalities to tell them how to think.

    Best, Wayne
     
  14. Recovery Soon

    Recovery Soon Senior Member

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    New letter to oz

    Just fired this off:

    To Dr. Oz and staff- Please take seriously the following.

    I wrote the email below to Dr. Oz just prior to the XMRV show regarding the gross misrepresentations of CFIDS by Jacob Teitelbaum, who has become an "expert" on your show, and recently appeared with you in "O" magazine offering tips. Please reread it, then SERIOUSLY RECONSIDER USING DR. TEITELBAUM AS AN EXPERT FOR CFIDS. Whether you realize it or not YOU ARE BOTH CAUSING HARM TO OUR COMMUNITY. CFIDS patients are FIGHTING FOR OUR LIVES with little strength to be taken seriously and get funding for medical research. Such gross misrepresentations only separate us further from the actual resources we are in DIRE NEED OF. What is needed is a serious inquiry into the biology/etiology of the disease. There is no scientific evidence that CFIDS is a "short-circuit in the body's energy system." This is Teitelbaums unsubstantiated, non-peer approved OPINION- and it cannot be presented to the public as fact, no less on Oprah's magazine. I want to recover from this serious disease, and YOU ARE MAKING IT LESS LIKELY TO HAPPEN BY SUGGESTING THAT THIS CONDITION IS EASILY TREATABLE. Green tea and stretching are not making a dent- trust me. This is not a TV show- it is my life.

    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 Director for a major television network. 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 Teitelbaum’s 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 don’t 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.
     
  15. Dreambirdie

    Dreambirdie work in progress

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    Thanks recovery Soon! I am so glad you sent Oz this follow-up.
     
  16. Dreambirdie

    Dreambirdie work in progress

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    Yes, unfortunately, we do do.

    The only way to get the truth out there is by doing it ourselves, and by hammering away at the idiots who misrepresent us.
     
  17. anciendaze

    anciendaze Senior Member

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    Solution to Dr. Oz

    Now that Dr. Oz has given us the solution to CFS, we need a solution to Dr. Oz.

    My solution has been to avoid television. If this advice is taken as directed, it is 100% effective.
     
  18. Recovery Soon

    Recovery Soon Senior Member

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    Sure. Thanks for all of your work with Dr. Donnica.
     
  19. Gemini

    Gemini Senior Member

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    same as anciendaze:Retro smile:

    Gemini
     
  20. Recovery Soon

    Recovery Soon Senior Member

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    Unfortunately it doesn't help with the public perception disaster that devastates our cause and keeps dollars away from us.
     

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