Easy Solution to Treat CFS - Dr. Oz

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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.
 
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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.
Thanks Tree for writing and posting your letter.

Very well said! :victory::victory::victory:
 

Sunday

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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
 

dannybex

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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. :)
 
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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
 

Dreambirdie

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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.
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:

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.
 

Recovery Soon

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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.
 

Dreambirdie

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"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.
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!
 

Recovery Soon

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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.
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.
 
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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,
 

anciendaze

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Dr. Oz after Lo/Alter paper

Quoting myself from the topic on media coverage of the Lo/Alter paper.
anciendaze said:
I'll leave it to others if this really belongs in this topic, but it fits my own peculiar perceptions.

Today, while I was at the dentist, there was a TV in the room where I was treated (crown installed). While I was unable to say anything, Dr. Oz came on with a segment explaining about panic attacks -- in the vagina. (I swear I'm not making this up.)

Clearly, we haven't altered the course of the mindless media, but then I'm not sure their coverage would be an asset.

The people who will actually read scientific papers will catch change in the air, and that will cause the changes we want, just not overnight.
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.
--------
urbantravels said:
They only panic when you sneak up on them and startle them. The right approach makes all the difference.
 

Dreambirdie

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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:
 

Wayne

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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

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,
 

Finch

Down With the Sickness
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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
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!