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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. Dreambirdie

    Dreambirdie work in progress

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    I agree. You can't change things by ignoring them. We need to keep speaking out about this, until we are heard.
  2. Gemini

    Gemini Senior Member

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    You're right.

    ME/CFS's physical impact silences/restricts mobility, difficult to demonstrate in front of his studio.
    But your video speaks for us and speak we must this time around....

    Thanks again for all your work.

    Gemini
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    ditto, very well said!
  4. Wayne

    Wayne Senior Member

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    Since the discovery of an association between XMRV and CFS, I've thought that the science would eventually win out, and the persistent doubters and psychologizers would have to acknowledge this new science. This would in turn lead to a major shift in public perception about ME/CFS.

    I'm no longer as confident this will be the case, given the intransigence of so many of our opponents, and the uninformed opinions of those who have access to major media outlets. It seems they will continue to spin things in a way that suits their own interests, reputations and egos, all at the expense of the ME/CFS community.

    Though I realize many here don't have the interest or the energy to try to counter some of the distortions that are being promulgated, I think those that do should be encouraged to do so. Every public distortion hurts us all, and people generally believe them if they are not addressed in some manner. I consider those who do choose to address them as our heroes and heroines.

    We have many heroes and heroines, including Dreambirdie. :Retro smile: Thanks again Dreambirdie for taking the time and energy to create your informative video. It helps us all.

    Wayne
  5. Finch

    Finch Down With the Sickness

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    My Letter to Dr. Oz

    Okay, first, it's taking me out of my comfort zone a bit to post this out here for all the world to see, but at the encouragement of a friend (thank you, Dreambirdie), I am posting the email I sent to Dr. Oz. (Damn - he better actually read this. It's awfully long. I don't know how to do things halfway, I guess.) Definitely poured my heart out - here's what I wrote:

    Dr. Oz,

    I feel compelled to write following your recent appearance on Good Morning America with George Stephanopolous, during which you described four different health conditions that may be causing people to feel exhausted. The fourth condition you spoke of, chronic fatigue syndrome, is a neuroimmune disease that has been sorely misrepresentated for decades now, and your brief mention of it in this GMA segment has added to the misrepresentation.

    Hillary Johnson wrote a book, first published in 1996, entitled Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. This book is now available again following a 2006 reprint. I would beseech you to read this book before you ever again speak of the disease the government has given the disparaging name of "chronic fatigue syndrome." I will not attempt to educate you on this disease in this email. I simply ask that you read this book.

    Sadly, in the fourteen years since this book was first published, very little has changed. We are still waiting for definitive answers on the cause of this epidemic, the true mechanisms at work, and what treatments are consistently beneficial for sufferers. The one thing that has changed since 1996 is that misinformation regarding ME/CFS can now be spread much more rapidly and efficiently, ultimately doing more harm to those afflicted.

    The recent XMRV discovery, covered by you and Dr. Donnica Moore in a segment earlier this year, has caused a great deal of hope and frustration among the ME/CFS community. The hope is that we will be found to be infected with a retrovirus. Can you imagine hoping for a devastating answer like that? Unfortunately, that is where we are. We know we are horribly sick and that there are no answers for us right now, so we hope for an answer, no matter how grim that answer might be. We hope for an answer that will afford us some real research and most hopefully some real treatment.

    The frustration is due to the lack of seriousness that has been given to this discovery to date by our government. The Centers for Disease Control has seemingly done everything they can to brush away this discovery and continue on its "business as usual" publishing of psychiatric disorders in ME/CFS. Those who might be in a position to protect the blood supply from this likely contagion have not yet taken that action. In the ten months since the announcement of this discovery, I have yet to hear of it from anyone I know. I purposely have not spoken of it in order to see whether anyone would broach the subject with me, a known victim of ME/CFS. No one has. I give you credit for doing the segment you did on XMRV, but obviously it has not been enough.

    Now back to the Good Morning America segment. Number one, you talk too fast for a brain with ME/CFS to follow. I had to watch the segment on the website a few times in order to retain any of what you had said. Actually, that's probably a good thing, because if anyone newly diagnosed or less experienced with this disease had been able to grasp all that you said in that very brief blurb, they might actually have believed it.

    Number two, the quick mention that this has now been upgraded to a "real condition." Where on earth did that come from? Nobody has "upgraded" CFS to my knowledge, and I do follow the news. It has been and always will be a "real condition." Actually, the day it is upgraded to a "real disease" will be the day that is newsworthy.

    Now, and most importantly, this disease cannot be greatly improved by two simple things. It cannot be greatly improved by any simple things. If we could find significant improvement with the use of d-ribose, or d-5-ribose as you said, we would all be using it. The word would have spread like wildfire. Many have tried this supplement, myself included. Some have found it to be somewhat helpful. I found it to not be helpful at all. Dr. Paul Cheney has even suggested that d-ribose can be detrimental to patients with ME/CFS.

    Why was what you said in this brief segment construed by so many ME/CFS sufferers to be so harmful that we felt compelled to write to you? It's a simple supplement that can help people to regain some energy in your mind, correct? So what's the harm? That is what I'm writing to try to convey to you. It is that, first, many people with ME/CFS have struggled for many years with the notion, brought on by our own government and medical community, that they somehow brought this disease upon themselves and that if they would only "do this" or "do that," they could cure themselves and again become fully productive members of society. People listen to you, and they will spend the money to try this "simple solution." They will, in all likelihood, be sorely disappointed that any benefit they receive will be very small, at best.

    Now we come to the rest of the general population and their perception of our disease. I can't tell you how many different "cures" people have presented to me from what they've seen on TV or read in a magazine. One of my favorites is that I just need to eat more pickles (for the salt). Another is "just eat an ounce of dark chocolate every day." Never mind that chocolate is a migraine trigger for me. I guess I can cure my ME/CFS, but the migraines? Well, whichever I want to get rid of the most, I guess. Some of these "cures" have actually come from my doctor: Noni juice, vitamins with antioxidants, a vacation somewhere sunny. Ouch, ouch, ouch.

    I fell for the Fibromyalgia and Fatigue Centers advertising four years ago. I went into their program full of hope and so relieved when their doctor did lab tests that actually showed abnormalities that "could be treated." I followed their protocol as prescribed. I had my thyroid levels go into a critical status due to an overdose of T3. I did quit the T3 but continued with everything else as recommended. After six months, I had no improvement whatsoever. I was told I was one of the ten percent that did not improve through their treatment protocol but that they would not give up on me. I continued to try to find answers. Finally, last year, I was told that they had a new pricing program that would require me to commit to paying $2,295 per year for the lowest level of treatment they had to offer. Of course, that was it for me, and I never went back. It was a waste of my time and a waste of several thousand dollars. I gained nothing from the experience except a greater cynicism with regard to those who prey on our need for validation and our constant search for something to alleviate our daily misery. I mention this, because I know that you collaborate with Dr. Jacob Teitelbaum, and he is the medical director of these clinics.

    At this point in time, I have been ill for more than nineteen years. I have no knowledgeable physician to treat me. This is the state for the majority of those afflicted with ME/CFS. Pop remedies being touted by people like yourself can only do more damage.

    Please educate yourself more thoroughly and be more thoughtful when speaking about this very complicated disease. That is what I ask of you.

    Thank you,
  6. Recovery Soon

    Recovery Soon Senior Member

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    BRAVO. We are very glad that you poured your heart out. (We need to keep churning this stuff out).
  7. gracenote

    gracenote All shall be well . . .

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    Finch,

    That is beautifully written. Thank you for sending your thoughts to Dr. Oz. And thank you for sharing them with us.
  8. IntuneJune

    IntuneJune Senior Member

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    Finch's letter

    That was a great letter Finch, let's pray he reads it!!!!

    June
  9. femmgrrl

    femmgrrl

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    Thanks DreamBirdie for the inspiration to take action. Here is the letter I just sent to Dr. Oz. Boy am I pissed at him:

    Removed.
  10. Recovery Soon

    Recovery Soon Senior Member

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    Femmgrl, This is a very good letter. Thank you.

    It is too late for suggestions on this one, but I respectfully would like to offer some considerations regarding any future letters we send out to media people.

    1) I don't believe he actually referred to Green Tea as a cure. The problem is that even if he does address this issue, all he has to say is "Some people mistakenly believed I said Green Tea is a cure for CFS. My point was that it can offer some help." That's not the statement we want. We want a clear disclosure that NO treatment is currently adequate to deal with the conundrum of CFS, let alone Green Tea, and that research is desperately unfunded.

    2) I might avoid mentioning any emotional issues from the past in such correspondences. It makes the psych point for them, when you have no need to disclose or defend your previous psychiatric condition. (not counting of course your current stress/anxiety specifically related to living with CFS).

    3) Mentioning the benefits you are receiving in such a way comes across as though many CFS patients might be receiving benefits in adequate proportion to filed claims,which they are not. You are the rare exception. Mentioning this point out of context undermines our aim to heighten awareness that the overwhelming amount of claims are denied with little serious consideration.

    Hope you take this in a spirit of constructive discourse. And thanks again for the time you spent writing it.

    Also- Hope you feel better. Hang in there. One way or another help is on the way.

    Best Regards.
  11. femmgrrl

    femmgrrl

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    Please PM me for "Constructive Discourse" in the future.
  12. Recovery Soon

    Recovery Soon Senior Member

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    femmgrrl,

    The reason I did not PM you, and am not doing so now, is because I think such discourse is beneficial for the community to engage in and consider when contacting the media. It was not intended just for you. The more we get our collective messaging straight, the more effective we will be, I think.

    This is a long-term movement, as Dreambirdie alluded to in an earlier post. We have to be methodical. Respectful, open discussion is the best way to all get on the same page.

    There was no intention to make you feel not proud of yourself. It was good of you to take action. I wish more people would do it.

    BTW- I did post 2 letters on this thread.
  13. gracenote

    gracenote All shall be well . . .

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    femmgrrl,

    I thought your letter was great and I'm so glad you sent it in. I'm impressed. Good job.

    I hope you continue to write letters and share them with us.

    Recovery Soon,

    I don't see how seeing a counselor to help us cope with this difficult disease "makes the psych point for them." They seem to be doing that all by themselves. I see no reason why we need to hide being human. femmgrrl wrote a letter from her heart and I appreciate having had a chance to read it.
  14. Recovery Soon

    Recovery Soon Senior Member

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    Gracenote,

    Femmgrl has since pulled the letter down (which I which she would not have- I still think it was a good, worthy letter), so I can't recall her exact wording. But my understanding of it when I read it was that she had been experiencing emotional issues not related to CFS. Of course there is nothing wrong whatsoever with that. But including it in a letter to a major media outlet, doesn't really serve our purpose- it runs the risk of furthering a bad stereotype, which we are trying very hard to shed, in order to get funding/research/awareness for a physiological condition.

    Also, she repeatedly accused Dr. Oz of claiming that Green Tea was a "cure." He never said that.

    I believe the goal here is impactful messaging in our very limited interactions with the media.
  15. gracenote

    gracenote All shall be well . . .

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    I'm sorry femmgrl took her letter down. I must say that I've never written to any media outlets because I didn't think I could articulate my message well enough. I feel more inhibited now from ever doing so. Certainly I would not want to share such a letter here and receive the kind of critique that femmgrl received.
  16. Recovery Soon

    Recovery Soon Senior Member

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    Feel free to share ANYTHING here on the forums, where we will all show compassion & sympathy.

    But consider reserving potentially undermining and/or inaccurate information when contacting media outlets.

    That way you can be uninhibited and effective at the same time.
  17. gracenote

    gracenote All shall be well . . .

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    I think you're missing the point. No one was posting what they thought was "potentially undermining and/or inaccurate information." Your critique was not asked for and it came AFTER the letter had already been sent. It was a good faith effort that got criticized publicly and, in my opinion, unfairly. That didn't feel like "compassion and sympathy."

    And who's to say it won't be "effective"?

    That's all I have to say.
  18. Recovery Soon

    Recovery Soon Senior Member

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    I didn't ask for your critique either- but seeing how this is a public forum and all...

    If you cannot see how repeatedly accusing a major media personality of something they NEVER SAID is not effective, then I think you should go with your initial instinct and not contact media outlets.

    I'm all for butting out- but not when it impacts me.

    This isn't a creative writing course where we fawn all over each other. There needs to be some sort of discussion about how we collectively and individually approach the media. Perception is driving this whole ship.

    Maybe my method is wrong too- but that's a necessary discussion to have.

    BTW- compassion/sympathy does not mean not mentioning such matters before, after, or anytime in between- just to be clear.
  19. Dreambirdie

    Dreambirdie work in progress

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    Wow! A lot has happened since I last checked into this thread. :eek: I see that femmgrrl's letter to Dr Oz has generated a bit of conflict.

    Recovery Soon--

    Not everyone here has the same approach to life, or the same style of self-expression. For those who are more analytically minded, a critique like the one you presented to femmgrrl would not be a problem. But those who come from a more feeling place don't do as well with having their personal self-expression critiqued in a point by point manner on a public forum. I hope that you are willing to take that fact into consideration. Our community of PWC's is a heterogenous group, not only in the variety and severity of symptoms we present, but also in our personalities and styles of perception and expression.

    This is the heart of the issue. I appreciate that Gracenote has brought it up.

    It concerns me that people who are more sensitive, and therefore more inhibited about how to articulate their thoughts and feelings to an outside source, (like the media or the government), would now be LESS likely to take action in writing a letter at a crucial moment like this.

    I think ultimately that the most important thing about writing this kind of letter is the fact that you take the time to DO it. Producers of shows like the OZ show get thousands of letters, and what usually gets their attention is THE QUANTITY of letters they get pertaining to a certain topic. They will not be critiquing each specific letter to see if it is "valid" in its complaints, but they will be keeping a number count, even if only unofficially, and will notice when 100, vs only 10, people write in.

    SO PLEASE KEEP the LETTERS TO THE OZ SHOW COMING. We need to let our voices be heard.
  20. Recovery Soon

    Recovery Soon Senior Member

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    I do. I can see how certain personalities are very sensitive. And I want to echo your encouragement for everyone to keep sending letters.

    That said, I maintain, present letter aside, that we should try to avoid false information, especially in the form of sharp accusations. And non-relevant disclosures of mental difficulties not related to CFS.

    I believe it is counterproductive to our cause- even if it is well intended, and feels good.

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