The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Powerful Must See - How to Survive a Plague

Discussion in 'General ME/CFS Discussion' started by Jennifer J, Apr 14, 2016.

  1. Jennifer J

    Jennifer J Senior Member

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    I know this documentary has been mentioned in some posts. I thought I'd post it for anyone who hasn't heard of it or seen it. So many lives were lost to AIDS. Thanks to Act Up and other AIDS activists groups this was changed. There's much in this documentary that speaks to us.

    "A Model for the Here and Now of Social Change: " Frank Bruni, NY Times

    http://surviveaplague.com/watch

    Thank you everyone for your work in changing things.
     
    Last edited: Apr 14, 2016
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  2. helen1

    helen1 Senior Member

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    It looks amazing, from the trailer. I'd love to see it. Wish we could march and demonstrate!
     
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  3. actup

    actup Senior Member

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    AIDS patients in the late 80's and at least until the mid 90's were very visibly dying agonizing deaths. No one could doubt they were sick. Many were alone and abandoned but still visible in the health care system. Partners, HCPs, family members and friends were shocked into action by the rapid deterioration of patients and the horrible suffering. CFS patients become quiet from lack of hope, lack of energy and tremendous isolation from family and friends. We have little visibility and the CDC and NHS have in my opinion intentionally and fraudulently crafted a very confusing message which says on the one hand these people are really sick but on the other hand all we can give them is psychological care. What that meant to my well family members and friends was that I had suddenly and obstinately turned into a hypochondriac with depression. They see selfishness in my situation. My well family members don't donate to cfs/me causes or sign petitions. I no longer ask. I can't blame family or even doctors for not understanding this disease. The CDC and NHS propaganda has been very effective for a very long time.

    We can borrow a lot from Act Up but need new tactics as well.
     
  4. sarah darwins

    sarah darwins I told you I was ill

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    I've been following with great interest the recent events in the States regarding LGBT rights and the notorious bathroom legislation. My eye has been especially caught by the sudden involvement of a number of major companies, such as Paypal, which has clearly had a significant impact on the conversation. Money always talks.

    We probably don't tend to think about major businesses when talking about campaigning, but perhaps we should. Getting a few major tech companies on board would be a massive step forward.

    Bruce Springstein would be cool, too ;-) Anyone got his number?
     
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  5. actup

    actup Senior Member

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    Great idea! Maybe a PR firm could help with a public education campaign. Can't wait for the NIH (5 yr study,40 patients?).
     
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  6. sarah darwins

    sarah darwins I told you I was ill

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    I noticed Paypal's stand re North Carolina was based on the fact that the proposed legislation affects some of their employees. Hard to believe that they have no present or former employees with a CFS diagnosis, or employees whose family members are afflicted.

    I'm going to give this a bit more thought. We keep saying that the problem with governments is they don't see a downside to ignoring PWME. Getting some commercial heavy hitters on board would change that.
     
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  7. actup

    actup Senior Member

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    I suspect there are many celebs and other influencers of public opinion who have stayed in the shadows. I suspect lyme disease is cfs/me with a known trigger. They don't like the cfs/me tag but will talk about lyme disease. Hope we can join forces in the near future.
     
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