Hope Tina is NOT mad about me putting her great press release out here so you all do not have to hit the facebook page. She and another PR professional did the press release and it is good. Please email this to your local newspapers and TV stations along with your own story. Also, it would be great if you signed your name, etc. so that they could contact you and ask you questions. Remember, these people DO NOT understand us or our bedbound/housebound symptoms. WE must tell them what our lives are like since the reporters just don't know and the public doesn't know or understand.
Everything that has been done by this Campaign has been very professional. Why? Because CFIDS sick people who were real heavy-hitter public relations, journalists, graphics, lawyers, website builders, and so on are doing the work. These people are also listening to the patients are going by what the patients want. That's important since it is OUR disease and we know best how it has affected and destroyed our lives.
Please, copy the press release below, add your own story, and email it to your local papers, Tv and anyone and everyone that you think needs to see this.
Also, it's money again.
We need donations to get this major issue into the Washington Post soon. The PNAS study is out and does show strongly that we are physically sick and not nuts. It also shows that there is a family of viruses (the Mouse virus) and it does mutate within the sick person. Finally, when you see 7% of healthy, blood-donating controls with this Mouse Virus and the numbers work out to 20 million (per Mindy's estimates) you KNOW that the blood supply is infected and has been infected for a very long time.
Please use Tina's press release and also hit the cause site, join and DONATE now! Thanks!
August 24, 2010
ME/CFS Worldwide Patient Alliance
Patient-driven Public Awareness Group
Protect from Infectious Virus, Act Now
Clay, AL—No one would wish a debilitating neuroimmune disease on their worst enemy. Chronic fatigue syndrome patients are therefore concerned that a recently-published study suggests murine leukemia viruses are in the nation’s blood supply at a rate of 7%. Reference Proceedings of the National Academy of Sciences, August 24, 2010.
We applaud the National Institutes of Health and FDA for their responsible study that confirms the strong association between a family of XMRV-related viruses and chronic fatigue syndrome, also known as myalgic encephalomyelitis, at a rate of 87%. This, though, serves as a pivotal time that calls for a change from paltry research in the last 25 years of an illness that now disables millions worldwide.
“My H.I.V. patients for the most part are hale and hearty, thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.” Dr. Nancy Klimas, Director of Research for the Clinical AIDS/HIV Research at the Miami Veterans Affairs Medical Center, New York Times, October 15, 2009
As each day passes, more Americans lose their jobs, their social activities and their health. A large majority of them will not recover based on the current lack of effective treatments.
We call for government-funded clinical trials now.
We call for aggressive scientific studies to protect the nation’s blood supply.
In the words of University of Alberta professor, Andrew Mason, “If the patients improve, after a certain point you stop debating whether it causes the disease and say, the treatment works and we’re going to use it.” Washington Post, August 24, 2010
The possible threat to the public health in this case is as real as the disability with the illness. This is the time to be proactive.
ME/CFS Worldwide Patient Alliance is a group of patients who have launched an ME/CFS public awareness campaign from the patient perspective.
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For more information, contact ___________________________ at ____________________.