Thanks to Dr Oz show
Just sent this off to the segment producer, Judy Rybak. Now I'm wiped...
As a (former) health professional who has been battling Chronic Fatigue Syndrome (ME/CFS) for the past 11 years, I want to thank you and the Dr Oz Show for doing an outstanding job in conveying the science, gravity, and urgency for care for patients with ME/CFS. Patients are losing their careers, their families, lifelong friends (myself included) and even their lives to this devastating, relentless condition. Now we hear that some 20% of XMRV patients who had ME/CFS for 20-30 years, also have lymphoma. All in the face of medical disbelief. I used to be a jock, and a regular keynote speaker and consultant to global medical directors of Fortune 500 companies. We used to hold huge joyous parties for our kids entire classes dunk tanks in the back yard on the last day of school Santa at our house every year. Ive always loved living life BIG, deeply involved in our children, our community, our friends.
Now I am mostly housebound, and consider it an accomplishment to be able to help my children with homework, or to wash my hair every 4 days. Even having coffee with friends has become a thing of the past Im just too exhausted afterwards, and have nothing left for the family. It is a rare day that I am feeling well enough to make dinner housework is out of the question. My saint of a husband gets it, and is keeping our family afloat. But we are living a mere shadow of our existence pre-ME/CFS our entire family, kids included are paying a dire price for the neglect inflicted upon us by a disinterested and might I venture, intellectually lazy medical community. To an outsider and to many specialists, I look fine. But fashion sense or a dynamic personality is no basis for dismissing a biologically-based medical diagnosis. In a truly sick way we are hoping that I turn out to be XMRV positive, so we can start hoping for more aggressive antiretroviral treatment. Your team with Dr Oz achieved a mainstream breakthrough in conveying a complex, hitherto controversial topic in readily understandable language, and with appropriate tenor for the gravity of this devastating disease. And the video animation of retroviral biology brilliant.
Kudos to your team for listening to the appropriately irate patient feedback after the initial content-thin segment with Dr Teitelbaum. Todays program is a massive testimony to the nimbleness, responsiveness, and openness of your Dr Oz team to the facts. ME/CFS is a serious neuro-immune disorder with many, abundantly documented spin-off areas of biological dysfunction, including known opportunistic infections and cancers. Many patients are unable fight off common infections such as Epstein-Barr, Human Herpes-6, Cytomegalovirus, Parvovirus B19, Enterovirus, something that it might be helpful to add on your website, as this is often how patients first come to realize that they might have ME/CFS. It is no surprise to me to hear online that the #1 cause of ME/CFS deaths is cardiac. After all, the Germans have identified Parvovirus B19 as the #1 cause of viral heart disease, and our North American cardiac community (who typically dont differentiate active from latent virus) is at least a decade behind. Just do a PubMed search on myocarditis and Parvovirus B19 its almost all German research. I would bet that the vast majority of these viral cardiomyopathy cases prove to also have XMRV as retroviral puppet master in the background. The irony is that these same North American denialist cardiologists evidently trust German science theyre all driving German cars, and using sophisticated German imaging technology.
Suggesting that a patient with ME/CFS exercise their problems away is as ludicrous as suggesting to a patient with AIDS that they just need a healthy lifestyle to overcome the HIV retrovirus. Again, many thanks to you, Dr Oz, and your team for listening, and getting it! You have done a massive service to our patient community.