Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Mcwpa washington post ad winner - will be in washington post on monday!

Discussion in 'Action Alerts and Advocacy' started by muffin, Dec 5, 2010.

  1. muffin

    muffin Senior Member

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    Ad Winner, Publication Monday Posted by tina on December 5th, 2010 at 4:12 am

    We have much pleasure in announcing that the Virus Ad will go forward for publication in The Washington Post. It will appear in the Dec. 6 issue. This striking, accurate and bold ad received 51% of the patient votes. A total of 431 patients participated in the voting. We want to thank Lynn Bousquet for her time and sharing her 20 years of advertising experience to our MCWPA effort.

    We also want to thank all who worked so hard in donating their time in the design of these hard-hitting ads. Many patients said that they had trouble deciding because they were all good, in their own way. Patient feedback a few weeks ago contributed greatly to the end result.

    Go here to see the final version. WWW.MCWPA.ORG

    We also noticed that many patients went to great effort, asking relatives and printing the ads to see which one they liked the best. This shows great interest and the realization that this is important. We are making history. Our action is unprecedented.
    We will be saving the other ads and will be using some of the information on the MCWPA website. Please take some time and see the additions we have made to this website recently. We also will save them for possible future publication.
    Look for announcements in the Patient Discussion forum in the next 48 hours with instructions on how you can use this ad so it has a bigger impact.
    Also, we will continue to use our Facebook Cause page for keeping you informed of matters as they develop.

    We will also be sending a press release to international news media.
     
  2. RivkaRivka

    RivkaRivka Senior Member

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    this is wonderful. thank you so much to the whole team who worked on this!
     
  3. Dreambirdie

    Dreambirdie work in progress

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    :balloons::balloons::balloons: Fantastic! :balloons::balloons::balloons:

    Thank you to everyone who worked so hard to make this happen. It's really GREAT!
     
  4. Carryon

    Carryon Mike Munoz

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    PR Newswire press release is out...

    http://www.prnewswire.com/news-rele...ever-ad-in-the-washington-post-111363234.html

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


    Download image

    --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.

    (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.

    CONTACT:
    Sita Harrison/Tina Tidmore
    561-313-1835
    205-680-6890
    Media@mcwpa.org



    Mike
     
  5. Tony

    Tony Still working on it all..

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    :Sign Good Job::Sign Good Job::Sign Good Job: :thumbsup: Great to see! Well done to all!
     
  6. Sasha

    Sasha Fine, thank you

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    The press release has been republished in its entirety in the Miami Herald (online, at least: here).

    Congratulations, Tina, Muffin and team! Just shows that if you write a good press release, journalists will heave a sigh of relief that you've done their job for them and just print it straight off. Hope to see a bit more actual commentary from more serious papers in the next few days.
     
  7. Sasha

    Sasha Fine, thank you

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    Ditto Wall Street Online, here.
     
  8. Carryon

    Carryon Mike Munoz

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    Littleton, CO
    The Sun Herald... Here
     
  9. Esther12

    Esther12 Senior Member

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    Excellent that this came out just after the red cross blood ban too. Anyone prompted to google will get serious articles on it.

    Great work pulling this together, and great news that the timing was good too.
     
  10. muffin

    muffin Senior Member

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  11. markmc20001

    markmc20001 Guest

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    great job to everybody who helped getting this ad done and recognized.
     
  12. Carryon

    Carryon Mike Munoz

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    Littleton, CO

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