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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. Tree

    Tree

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    My remarks to Oz

    Thanks to Wayne for bringing the GMA show to our attention, and to Cort for his continued hosting of this forum where we can all find information and support. And to Dreambirdie -- huge thanks for your continual activism on our behalf, and most of all, for urging everyone to become activists, too. You hit the nail when you said that this cause is not unlike the civil rights movement or any other worthy cause -- no one is going to do it for us. We have to be warriors on our own behalf. It's a longterm struggle. But look what the AIDS community achieved with their activism! And so many other communities!

    I applaud every single person here for sending a letter, or doing whatever they can to move our cause forward. You are all warrior/heroes. I know how hard it can be to send an email to a show when sick with this illness, and I've found that when I actually do something like that, it gives me a sense of empowerment and accomplishment. We HAVE TO defend our dignity and worth as human beings with this illness. I'm sorry, I don't recall who wrote the brilliant analogy of Teitlebaum taking "kids" (patients) who've been abandoned by "parents" (the medicos) and raping them -- but what truth in that! And like survivors of all kinds of hostile, predatory actions, we have to STAND UP and KEEP STANDING UP, over and over, even if our "standing up" is metaphorical. We are gaining strength collectively as a movement, with each wave of letters.

    Here are my remarks sent to Oz:

    I am writing in reference to Dr. Oz's appearance last week on Good Morning America, in which he characterized Chronic Fatigue Syndrome as "a short circuit of the energy system" and then went on to recommend green tea and Ribose for this serious medical condition. As a person who has lived with CFS for 25 years this month, believe me, if green tea and mushrooms were the answer, I would have been working, traveling, and living life to the fullest instead of carefully negotiating each expenditure of energy, and using a wheelchair to just get through a store on the rare day when I can DO a store at all. Dr. Oz's remarks only add to the misperception that CFS can be easily overcome with a couple of little energy-boosting tweaks. I seriously doubt that he would be so cavalier about the fatigue associated with MS, AIDS, rheumatoid arthritis, people undergoing chemo, or other serious disorders -- why were such conditions not included in his list and given similar quick-and-pithy treatment remedies like green tea? Because that would be an insult to those suffering with such serious illnesses? Right. And that is why I object to his oversimplified snappy patter about CFS and green tea and mushrooms. His remarks were ridiculous and insulting to people with this serious and debilitating illness.
  2. femmgrrl

    femmgrrl

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    Thanks Tree for writing and posting your letter.

    Very well said! :victory::victory::victory:
  3. Tree

    Tree

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    Thanks, femmgrrl! I'm glad you sent a letter, too!
  4. Dreambirdie

    Dreambirdie work in progress

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    Hey Tree--

    I agree with femmgrrl. Very well said, especially the bolded part. Thanks!
  5. Sunday

    Sunday Senior Member

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    I've been off this forum a lot lately due to feeling like crap, so I was really glad Dreambirdie PMed me and brought my attention to this. I've enjoyed reading the other letters; you're right, this IS like a civil rights movement, I think. Here's mine:

    Dear Dr. Oz,

    I've been impressed by your willingness to explore new options in medicine, and to let people know about them. The medical community is not always friendly to doctors who do this, so it shows courage and integrity on your part.

    Which is why it made it all the more distressing when you said that CFS could be cured by green tea and ribose.

    No.

    If it could be cured by green tea and ribose - I've taken plenty of them, in addition to many, many other supplements - I would not still have to be crawling sometimes because I'm too dizzy to stand; I would not go into phases when speaking is difficult because I can't think and articulation seems like climbing Mt. Everest barefoot. I don't think the numbness and other neuropathies in my feet and legs would be taken care of by this, either, or the gut problems, or the heart palpitations, or the nerve pain, or many, many other symptoms which make my life an impossibility. It is cruel to say that green tea and ribose can get rid of this, and it trivializes a disease that has millions of us bedbound. People call us lazy crazy lying attention-getters - including most doctors. Your comment only reinforces the notion that CFS is this light fluffy thing that can be got rid of easily. That it's just another version of feeling tired. I've been very tired for long amounts of time, and I've been depressed. Now I have CFS, I can tell you, it is nothing like either one of them.

    But don't take my word for it. Check out, if you will, these threads on symptoms from a forum dedicated to CFS. http://www.forums.aboutmecfs.org/forumdisplay.php?37-Symptoms

    Then tell me if you really think it can all be taken away by green tea and ribose.

    Sincerely,

    Sunday Oliver
  6. dannybex

    dannybex Senior Member

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    Many excellent emails -- I know I can never do as well as Sunday's or Tree's (VERY GOOD) but I will try and send something this afternoon.

    d.

    p.s. Also, if the FDA/NIH study comes out in the next week or so, then we'll really have his -- and everyone's -- attention. :)
  7. femmgrrl

    femmgrrl

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    I am so happy to see so many more letters. I think quantity is what will get their attention. I think each person's unique perspective is of value. Even if our letters are not perfect they are counted and are incredibly valuable. I agree that no one can speak for us because this illness is so darn complex and difficult to understand. My own symptoms and causes are incredibly challenging for ME to understand, let alone a doctor who has never experienced this level of fatigue, frustration and trying everything out there that may help, only to maybe be helped a little but NO CURE. For so many years I thought I just needed to eat more green leafy vegetables, exercise more perfectly (but not too much), yoga, macrobiotics, affirmations, therapy. I have spent the last 20 years trying all of this. While most of my efforts have helped me stay afloat, the exhaustion, the inability to think clearly, the overwhelm, the frustration, all the many symptoms of CFS have continued. Particularly damaging for me is my inability to work and earn a living. I want my life back!

    So, thank you to everyone who is writing letters to Dr. OZ.

    Gracenote-

    I so appreciated your comments and support. I pulled my letter from this thread for personal reasons but I strongly encourage you to write in to Dr. Oz. If you feel that your letter may receive an unwanted critique, just let us know you sent it, so we can celebrate your effort here with you, but maybe consider not posting it here.

    I believe that activism for our rights to health, safety and happiness is very important and I hope that this letter writing campaign will be incredibly effective in getting Dr. Oz to do something publicly to correct his recent error in saying that a "simple solution" for CFS is green tea with D-ribose. Thanks to DB and Wayne for getting it started! I hope Dr. Oz recants his statement and does another small or large segment on the truth of CFS or the new XMRV research or even just stating that between 1-4 million Americans are suffering from the illness. Any current, accurate portrayal of CFS in the media will help us, I believe.

    Thank you to everyone who has offered me support and compassion on this forum. Every little bit helps.

    Thank you all for your encouragement and thoughtfulness.

    -femmgrrl
  8. Dreambirdie

    Dreambirdie work in progress

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    Hi Sunday--

    Thank you for writing your great letter... in spite of how crappy you're feeling. :victory:

    My favorite part is the "NO." The perfect word, all by it's powerful little self, in just the right spot.

    When it comes to Oz's advice, NO takes the lead. And all the other words are fantastic back-up singers. :cool::Retro smile::Retro smile:

  9. Recovery Soon

    Recovery Soon Senior Member

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    Thanks for all the great letters.

    I just got a copy of Teitelbaum's "Vitality 101" newsletter.

    He lists the 5 vices, which we should all enjoy.

    Checkout #3 -

    "3. Alcohol

    Repeated research has shown that people who drink no alcohol do not live as long as people who have a few drinks a day. The problem is when the alcohol becomes excessive. When it goes over an average of 2 to 3 drinks a day, people who don't drink alcohol do better."

    Who Do you think his TARGET MARKET is? (keep in mind, this is Dr. Oz's source of CFS information)

    CHEERS EVERYONE- It's CFS Miller time.
  10. Dreambirdie

    Dreambirdie work in progress

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    More stupid advice from the tv experts. :Retro mad::Retro tongue::Retro tongue:

    When I drink even small amounts of alcohol, I am up all night with a rapid pounding pulse and a headache.

    Who was it here that suggested writing a book FROM FATIGUED TO FURIOUS? Good idea!
  11. Recovery Soon

    Recovery Soon Senior Member

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    Right. That advice is perfectly fine for Non-CFS patients- His real Target Market.

    As a the bible says: "A servant cannot serve two Masters"

    I don't know if he doesn't have a conscience, or what. I just can't figure out how someone can do what he does.
  12. tymewarp#9

    tymewarp#9

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    I am completely "fogged in" and deliriously tired & probably this isn't the best way to do this, but I just wrote kind of a general letter (started out intending a concise, advocacy kind of message, but I can never seem to write something which doesn't morph into a long ramble! :headache::oops::Sign Help:
    So: I haven't seen the Dr. Oz segment / maybe this is inappropriate for this situation, or better to send to a politician, or??? BUT I was SOOOOOO inspired by all of your letters & comments (WOW!!!!!), I just kinda started writing. Could you fantastic communicators give me guidance, re: whether to send this, etc. --Thanks! (And ThankYou ALL for your advocacy efforts, bcuz I know it's NOT easy; your eloquence is breathtaking!!!:hug:).
    8/2010
    Dear Doctor Oz,

    I always thought that with enough effort, I'd never be having to write a letter like this, because I'd have gotten well; with ENOUGH EFFORT, I WOULD BE WELL.
    I've had with that philosophy since my youth, decades ago. And many sorts of treatments/remedies/'cures' ago.
    I realize the difficulty you may have understanding the struggles of people trying to live life with ME/CFS; I nonetheless implore you to consider empathizing with myself & others battling similar neuroimmune diseases. Obviously you cannot take time for every cause, and while I don't want to fear-monger just to get your attention, I feel a responsibility for doing exactly that.
    I feel this responsibility because I know firsthand the damage being done by whatever this/these disorders/diseases are, & that these horrifically devastating illnesses are likely far more widespread than you realize -and becoming moreso all the time.
    But the very nature of these illnesses OFTEN renders them virtually invisible to society (not only because so many of us appear OK outwardly & on standard labtests, but also because we "drop out" of view & fall through the cracks, often immobilized both physically & cognitively). Many of us surely commit suicide as well, if not from the torturous symptoms themselves, then from the shame and humiliation we are subjected to by wellmeaning-but-naive doctors, family & friends.
    I believe enough evidence exists to sound a scientific-research Red Alert about these insidiously debilitating illnesses. I realize the effects appear "subtle" or psychosomatic; I assure you, if we bet that that's the case and continue rationalizing away the EVIDENCE, our nation & world may gradually but steadily lose a large portion of what SHOULD be a productive, healthy populace. WE MUST NOW lead the way in researching these mysterious neuroimmune diseases; the risk of not doing so is unacceptable. Letting this "go" is dangerously irresponsible. If we don't do it to stem the suffering, then let's do it to steer away from the eventual economic disaster which could result. The EVIDENCE says, looking the other way ANY LONGER may prove disastrous.
    It's not unlike other potential threats of global disaster: do we really want to keep driving without our seatbelts? Sure, we might never encounter an inattentive driver or have to suddenly maneuver to avoid hitting the child chasing a ball into the street; we may drive our entire lives and never need what that seatbelt provides. But, given the EVIDENCE, do we really want to risk it? LOOK at the evidence; Weigh the consequences, PLEASE.
    Eventually, when enough influential people have their lives personally affected by a 'mysterious' neuroimmune illness, the tide will turn; research will begin in earnest. I'm hoping we don't have to wait. I've my own long years of experience, and I am more & more witnessing the gutting of others' lives. People being reduced to a near-vegetative state, unable to live anything resembling a normal life, and functionally unable to keep on (& on, & on) lobbying for the help they need. And trying to rally for our own cause, for our LIVES, while enduring the ridicule, the emotional abuse, of those who think we can be shamed into "snapping out of it".
    If I can give you one 'image' which might be relatable to you (although if you have been lucky enough to have never experienced true influenza, you might not empathize): imagine you come down with influenza (not a cold, not a '24hr stomach flu') and IT NEVER GOES AWAY. Severity fluctuates; it waxes & wanes, the fever dies down, but it never goes AWAY for good. Yet you still must go to work, keep up an optimistic attitude for the sake of your family, and maintain all the other responsibilities of an adult. WHILE HAVING A 'PERMANENT FLU'. ...Can you imagine living this way?
    Oh, and also: if you can get anyone to believe you about this, they insist you must be somehow bringing it on yourself, &/or you're depressed, &/or otherwise emotionally-disturbed.
    This is a barebones, very simplistic description of what I and millions of others -adults & children- must 'live' with DAILY, and time marches on while we 'exist' moment-to-moment, desperately trying to keep our hopes up as it takes everything we've got just to get through the basics of the day; our lives are barely progressing, we're doing/trying everything in our power to pull ourselves up, and the years roll by. When children are affected, it is particularly heartbreaking.
    I've experienced, seen, heard, read & learned enough to KNOW that us sufferers aren't all a bunch of self-centered, whiny maladjusted folk in need of psychotherapy. We are a vastly varied bunch, with many different backgrounds. Our neuro-endocrine-immune systems are not this dysregulated due to childhood abuse or stress. SOMETHING BESIDES EMOTIONAL STRESS AND/OR MALADJUSTED PERSONALITY IS AT THE ROOT OF THIS, AND HONEST, UNBIASED EVIDENCE POINTS THIS WAY. WE NEED TO FOLLOW UP THE GOOD SCIENCE; it is the ONLY way the light of truth will ever shine upon this. THE SCIENCE MUST BE PURE.
    I don't know if the thought of ever "catching a flu that never leaves" scares you, or if you believe that your loved ones shall never need worry about such an "out there" affliction; or, perhaps you choose to believe that all the evidence which has been building and building throughout the past few decades is rubbish. But whatever weight you choose to give to this, at least be HONEST & SERIOUS if and when you analyze the spectrum of evidence, which is admittedly massively complex & extensive.
    I hope you have the inclination & time to seriously review the scientific evidence from various sources; I believe that more than you realize is at stake. It is difficult to concisely convey the severity with which neuro-immune illness has disrupted my life; I pray I've reached through to you enough to matter.

    With Hope,
  13. JMK

    JMK

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    Bravo Tympwarp#9!!!!! Excellent, excellent letter!
  14. Dreambirdie

    Dreambirdie work in progress

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    Thanks Tymewarp for writing this letter. And Yes, please do send it!
  15. tymewarp#9

    tymewarp#9

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    Letter sent.
    Thanks Everyone, for firing me up, too! (*phew!*)
    -t.
  16. anciendaze

    anciendaze Senior Member

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    Dr. Oz after Lo/Alter paper

    Quoting myself from the topic on media coverage of the Lo/Alter paper.
    Though I didn't mention it there, the thing about this segment that overwhelmed me was the fancy computer graphics illustrating remarkable things on the large-screen display behind Dr. Oz. Clearly, I'm not accustomed to current standards for television medicine.
    --------
  17. Dreambirdie

    Dreambirdie work in progress

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    I had no idea a vagina could have a panic attack. :eek::eek:: This really is BIG news.

    Thanks for filling me in. :Retro tongue::Retro tongue::Retro tongue::Retro smile:
  18. Wayne

    Wayne Senior Member

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    Hi Finch,

    I just read your letter again (below) to Dr. Oz, and wanted to let you know how much I appreciate it. I have my doubts that Dr. Oz ever read it, but I hope you keep sending edited portions of this to various websites as the XMRV news continues to be reported on. It is very well written, and easy to read and understand. Thanks much for your efforts.

    Wayne

  19. Finch

    Finch Down With the Sickness

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    Thank you, Wayne! Now that I've written and saved it, hopefully I will find more ways to use what I've written. There is so much more, too.

    Tymewarp#9, I also want to thank you for your very well-written letter. Lots and lots of good points!

    If only someone would read these things and respond!

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