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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Help Spread our Message! Post an Ad on Craigslist for Appropriate Medical Care!

Discussion in 'Action Alerts and Advocacy' started by Frickly, Oct 5, 2010.

  1. Frickly

    Frickly Senior Member

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    More easy advocacy!

    Lets spread the message about ME/CFS by posting a Help Wanted ad in Craigslist on October 5, 2010. This only takes minutes and is an easy way to spread the message about this debilitating disease. Below you will find an example post that you are welcome to use. Please go to http://www.craigslist.org/about/sites for a craigslist in your area. For more information and ideas please go to Khalys blog at http://cfsuntied.com/blog2/2010/09/30/help-wanted-–-quackologists-need-not-apply-2/

    Thanks to Kati and Khaly!

    Looking for a maverick, principled physician willing to learn about ME/CFS

    Patient with myalgic-encephalomyelitis (M.E., benignly labeled Chronic Fatigue Syndrome or CFS), urgently seeks an infectious disease, immunology, internal medicine, neurology, cardiology, or other specialist willing to learn about ME/CFS, for continued care. Doctor will be fearless in recognizing that ME/CFS is a serious, debilitating disease with multi-system, progressive pathology and likely infectious origin. Doctor does not categorically refuse to treat complex medical cases, in fact looks at these cases as a stimulating and rewarding challenge, if not an ethical obligation. Doctor is willing to: consider guidance from international experts in ME/CFS; acknowledge the growing mountain of evidence (5000+ peer-reviewed papers) that ME/CFS has a compelling biological basis; and consider emerging research from thought leaders such as Harvard, Stanford, the FDA, the National Cancer Institute (US), and the Cleveland Clinic, linking ME/CFS with Murine Leukemia-related viruses (XMRV/MLVs). Must be willing to refer patient for evidence-based biomedical diagnostics as needed, and to consider recommendations and test results from world-renowned ME/CFS experts, including AIDS experts familiar with ME/CFS. Must be willing to weather a storm of disbelief, including frank hostility from uninformed physician and peers who have dismissed this disease for decades. Must have willingness to speak up to colleagues about the growing and compelling associations of ME/CFS with a new human gammaretrovirus (XMRV/MLVs); and to support antiretroviral/immunomodulatory clinical trials when indicated by the science - is an asset.

    In other words, must be willing to be at the leading edge of this profound neuro-immune disease, which may very soon be confirmed as the next AIDS.
    http://www.facebook.com/pages/XMRV-Global-Action/216740433250?ref=nf#!/notes/xmrv-global-action/help-spread-our-message-post-an-ad-on-craigslist-for-appropriate-medical-care/448002326796
     
  2. beesknees

    beesknees Senior Member

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    Love this idea. Simple and easy advocacy for us to do. Will post mine now. thanks!
     
  3. Frickly

    Frickly Senior Member

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    Craigslist Press Release from Khaly Castle

    This notice went out to the New York Times, the Washington Post, A. Faucci at NIAID, the CFSAC, F. Collins at NIH, and several patient advocacy bloggers and groups. Well done everyone, and KEEP GOING! :

    One Week Before CFSAC Meeting in Washington D.C….Patients Speak Out!

    The Chronic Fatigue Syndrome Advisory Committee is scheduled for October 12, 13 and 14, in Washington D.C., a little over a year since the stunning discovery was made of a possible link between a new human retrovirus XMRV and the debilitating disease known as CFS, or ME/CFS. (ME for Myalgic Encephalomyelitis).

    The patient community has endured lack of science and proper medical care for almost a quarter of a century, and the last year has been excruciating as the community watched science and politics collide repeatedly.

    Today, inspired by one patient in British Columbia, a spontaneous, patient-driven effort to bring awareness to their plight wen around the world as patients everywhere posted want ads on Craigslist. A typical ad reads as follows:

    Looking for a maverick, principled physician willing to learn about ME/CFS

    “Patient with myalgic-encephalomyelitis (M.E., benignly labeled “Chronic Fatigue Syndrome” or CFS), urgently seeks an infectious disease, immunology, internal medicine, neurology, cardiology, or other specialist willing to learn about ME/CFS, for continued care.

    “ Doctor will be fearless in recognizing that ME/CFS is a serious, debilitating disease with multi-system, progressive pathology and likely infectious origin. Doctor does not categorically refuse to treat complex medical cases, in fact looks at these cases as a stimulating and rewarding challenge, if not an ethical obligation.

    “Doctor is willing to: consider guidance from international experts in ME/CFS; acknowledge the growing mountain of evidence (5000+ peer-reviewed papers) that ME/CFS has a compelling biological basis; and consider emerging research from thought leaders such as Harvard, Stanford, the FDA, the National Cancer Institute (US), and the Cleveland Clinic, linking ME/CFS with Murine Leukemia-related viruses (XMRV/MLV’s).

    “Must be willing to refer patient for evidence-based biomedical diagnostics as needed, and to consider recommendations and test results from world-renowned ME/CFS experts, including AIDS experts familiar with ME/CFS. Must be willing to weather a storm of disbelief, including frank hostility from uninformed physician and peers who have dismissed this disease for decades.

    “ Must have willingness to speak up to colleagues about the growing and compelling associations of ME/CFS with a new human gammaretrovirus (XMRV/MLV’s); and to support antiretroviral/immunomodulatory clinical trials – when indicated by the science – is an asset.

    “In other words, must be willing to be at the leading edge of this profound neuro-immune disease, which may very soon be confirmed as the next AIDS. (Courtesy XMRV Global Action)
    Craigslist ads have been placed around the globe. Listings have been verified in California, New Mexico, North Carolina, Ohio, Pennsylvania, Kentucky, Texas, and other U.S. States. There are also verified listing posted on Craigslist in Vancouver, Montreal, London, Bath, Edinburgh, Newcastle, and other major cities around the globe.

    The CFSAC meeting will encompass a Science Day on October 12. The entire meeting is being videocast live, and can be accessed at http://www.hhs.gov/advcomcfs/

    Khaly Castle, CFSUntied, for chronically ill people everywhere
    http://www.facebook.com/?sk=messages&tid=1480708212348
    .
     
  4. RivkaRivka

    RivkaRivka Senior Member

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    this is great!!! my craigslist charges to post ads. so i'll put it in the seeking volunteer section.

    update: ugh. they wanted me to open an account to post even that ad. i did not do it. i may later.
     
  5. RivkaRivka

    RivkaRivka Senior Member

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    i'll send the press release to amy marcus of the wall st journal, too!
     
  6. citybug

    citybug Senior Member

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    I want to post an ad looking for HIV doctor to treat XMRV, and something in free section for other illnesses with XMRV to find information here.
     

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