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,