ME/CFS Patient Alliance Run First Ever Virus/Blood Supply Ad

The ME/CFS Worldwide Patient Alliance has run the first-ever 1/2 page ad that was published in the Washington Post on December 6th.  The ad that was published (you can click HERE to see the full version) received 51% of the patient votes out of the 431 total patients who voted. 

I have been reading some different opinions on the ad and would like to know what your opinion is.  Some of the feedback I have received about it is mixed.  Some patients are extremely happy that the word is out there about ME/CFS and the risk of infection to the blood supply.  Others are fearing that the reference to AIDS and the “similiar to HIV” reference will make people fear being around us, like they can catch CFS from walking or touching us or something.  I would love to hear your feedback on the ad! 

Here is the press release by the ME/CFS Worldwide Patient Alliance released on December 6, 2010:

Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post

–Possible New HIV-like Retrovirus in Blood Supply–

CORAL GABLES, Fla., 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.  

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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 .

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.

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  1. We should be scared. We don’t know how it is transmitted. I know some families that have multiple members that are sick with CFS. Others whos spouse became ill after caring for their CFS loved one for years. I’m scared I’m going to pass it along to my husband or child. If it is viral it is infectious and has some route of passage from one person to another. We should all be scared and we should be researching this agressively rather than sticking our heads in the sand. I’m already isolated. I’ve already lost my job and my friends. This illness has me housebound and often bedbound. We have to find a cure!!

  2. I love this stunning AD. Finally, a group has done the public a major public policy service in alerting everyone to this newly discovered human retrovirus. The facts are known and can be found in the WPI/CC/NCI and FDA/NIH/Harvard studies – so the information in this AD is very accurate.
    It really is a well done AD and gets the message across on ME/CFS (finally) and this deadly retrovirus so that the public is aware of what is out there. For whatever reason, the Federal health organizations, especially the CDC, have covered-up ME/CFS and this Retrovirus. Why? This too needs to be explored. What are they hiding from the public? The UK also has the same problem, but worse. Simon Wessely and his UK shrinks simply put the ME/CFS sick into psych wards AGAINST THEIR WILL if the sick refuse to say that they are mentally ill. There is NO medical care at all in the UK and really, very little in the US. We in the US have no doctors to diagnose and treat ME/CFS. This is because the CDC damned the ME/CFS as crazy. If someone is crazy then there is NO NEED for research on real physical studies – and that is exactly what the CDC was doing for almost three decades. But WPI found the link between ME/CFS and this deadly retrovirus and now the CDC and the other Federal health organizations are running scared and trying to cover up and keep “public perceptions” in check. The government is terrified that the US public is now aware of what has been going on and what would never have come out had the MCWPA people NOT done such a great job with this AD in the Washington Post and with the worldwide Press Release. So, I say BRAVO to those at the MCWPA for their efforts. Thank you all. No one will do anything for us CFS sick is WE do not do it ourselves. I have been sick for over 16 years and my husband has been sick for 6 years. Contagious? You bet.
    Keep those media campaigns coming. I have donated to this organization so that they can continue to keep the public informed. I am tired of no research on a disease that destroyed my life and the lives of millions and millions of others. see – They are GREAT!!!!!!

  3. Kathryn Stephens says:

    We have been ridiculed, disbelieved and ostracized for almost 30 years; what’s a little fear of us? We have already lost jobs, careers, friends, family, a social life…what’s to be afraid of?

    I’d rather have Science and Knowledge than ignorance of the danger to our public. That’s why I support this Cause.

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