Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington PostBy Mcwpa, PRNE
Sunday, December 5, 2010
Possible New HIV-like Retrovirus in Blood Supply
CORAL GABLES, Florida, December 6, 2010 - 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. (www.pandoranet.info). 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.
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 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.(TM), Vermont CFIDS Association, Inc., R.E.S.C.I.N.D.,
Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS
CONTACT: Sita Harrison/Tina Tidmore +1-561-313-1835 +1-205-680-6890 Media@mcwpa.org
Sita Harrison/Tina Tidmore, +1-561-313-1835 or +1-205-680-6890, Media at mcwpa.org
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