Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post
--Possible New HIV-like Retrovirus in Blood Supply-- Dec. 6, 2010 /PRNewswire-USNewswire/ -- In an unprecedented move, chronic fatigue syndrome (CFS) patients published a half-page ad in The Washington Post today. The ad brings attention to new, HIV-like retroviruses, including XMRV, which have been linked to CFS and aggressive prostate cancer, and have been detected in healthy blood donors. The ad was created through the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient collaboration formed in August 2010 with the support of P.A.N.D.O.R.A., Inc. From their beds and wheelchairs, patients spent decades watching researchers, scientists and physicians debate about the cause or nature of their illness. Now, they are adding their voice through a campaign that calls for biomedical research funding, fast-track treatment options and improved patient quality of life. CFS, also known as myalgic encephalomyelitis or ME/CFS, is a disabling, sometimes fatal NeuroEndocrineImmune disease that afflicts more than one million Americans and an estimated l7 million people worldwide. (Photo: http://photos.prnewswire.com/prnh/20101206/DC12334 )
ME/CFS first gained national attention amidst the AIDS epidemic in the early 1980s. As early as 1991, a retroviral link to ME/CFS was discovered by Dr. Elaine DeFreitas of the Wistar Institute, but subsequent retroviral research was halted by the government. Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care, ineffective (sometimes harmful) treatments and a shorter life span for those who are ill. The leading causes of death among patients are heart disease, cancer and suicide. The disease occurs in people of all ages, from children to seniors, and also has a higher incidence rate in families and has occurred in cluster outbreaks. "This can happen to anyone," said Sita G. Harrison, spokeswoman for the MCWPA.
"ME/CFS is devastating and the lack of care has hurt us all. We ask the government and health care agencies that we put our trust in to help the millions of people who are suffering and to fund more research now." A major scientific breakthrough occurred in October 2009 when the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno, working with the National Cancer Institute and Cleveland Clinic, published the results of a landmark study. The seminal study, published in the leading scientific journal, Science, discovered the third human retrovirus, XMRV, in the blood of 67% of ME/CFS patients and in 3.7% of healthy controls. This suggests that up to 10 million US citizens could already be infected. This finding was later confirmed by the FDA, NIH and Harvard Medical School in a study published in the Proceedings of the National Academy of Sciences. Their results linked a family of human gamma retroviruses (to which XMRV belongs) to ME/CFS at a rate of 86.5% and 6.8% in the healthy population, bringing the total of Americans who may be infected up to 20 million people.
"The NIAID, the national institute responsible for infectious disease research, has yet to fund XMRV research in ME/CFS or any other disease," explains Annette Whittemore, President of WPI. "WPI has had its last six XMRV-related grant proposals turned down; despite the fact that our researchers have proven XMRV is transmissible and infectious."
MCWPA is advocating for a budget that is in line with other NeuroEndocrineImmune diseases. Currently, only $5 million for ME/CFS research is in the NIH budget, far less than similar diseases such as multiple sclerosis ($l44 million) and lupus ($121 million). Patients also ask for antiretroviral and Ampligen clinical trials that have shown great promise in mitigating the effects of ME/CFS. For more information, to donate, or for more resources and spokespeople, including leading researchers, scientists, physicians, patients, and historians please visit http://mcwpa.org/ .
About MCWPA: Our mission is to create an effective, cutting-edge advertising campaign addressing the poor quality of life of individuals with ME/CFS. By issuing a collective and unified statement, our community will no longer be silent and invisible. The MCWPA ad campaign is supported by P.A.N.D.O.R.A. Inc.™, Vermont CFIDS Association, Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS Association, Inc.
Sita Harrison/TinaTidmore 561-313-1835 205-680-6890 Media@mcwpa.org
THANK ANY Journalist that reports that ME/CFS "is" a SERIOUS Disease, Please!!.
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Documenting the Life of Surviving with ME/CFS and OI/POTS and Invisible Illness since 1987. Back then I got what I thought was a virus and thought I would only be down the usual 7-10 days. WRONG I kept fighting it for a few months, but in the end I had to Surrender to it, which is NOT Easy for someone that has always been very active, a multi-tasker, and a "Get it Done" kind of person my Whole life.
Here I was in the prime of my life about 38 yrs old and going strong until this. then WHAM Bang. I ended up Flat on the living room couch, awake or asleep, for the next 1.5yrs. Living alone I couldn't
even go grocery shopping or I would get the fever back. I was lucky enough to find someone to cook for me once a week. The funny part is that until then I had working in a hospital for the previous 17 yrs, I get sick and they have NO idea what it is. Ran many tests, everything came back normal, so I get NO help/NO disability/nothing.
Even when I did calm things I liked the fever & associated feelings would come back. Yuppie flu? Never was ~ Never will be. Ever known anyone that had EBV ? Well THIS is it's BIG Brother, but a LOT Nastier at this point now 28 years.
I am SO sorry to announce that lately I have had to implement "moderating comments" due to SPAM comments that are trying to come thru, and I do NOT want you OR this blog subject to the type of inappropriate material that these SPAMs contain.. so Please KNOW that I WILL "approve your post" ASAP~ Thanks for your understanding... Hope you will be AWAP ♥ and Even BETTER Soon.
ALERT: If you are posting in a language OTHER than English, "PLEASE use a Google translator to translate it INTO English FIRST." If I can NOT even use the Translator to READ your post... It WILL BE DELETED.
❤ LIVE ❤ LOVE ❤LAUGH❤ Each Day We HAVE is "Precious." ********************************
**************************************************** Please be advised that NOTHING in any of the posts on this blog OR its associated links is meant as Medical Advice by this blog. Please consult with your Medical Professional before doing anything new or adding anything new to your daily routine of how you care for your health.