1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

UK: Jen wants to know what Canary in a Coalmine audience should do after seeing the film

Discussion in 'Advocacy Projects' started by Sasha, Jul 20, 2014.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    7,868
    Likes:
    6,277
    UK
    Interesting post on Jen Brea's Facebook page (my bolding):

    There are a lot of responses on Facebook - I don't want to divert responses from Facebook to here but for those who don't use FB and can't post there, maybe someone could post a link to this thread for Jen so she can see any responses here.
    aimossy likes this.
  2. Sinclair

    Sinclair

    Messages:
    60
    Likes:
    18
    I would have a short term goal: making easier for PwME to be recognized as having a serious condition, particularly by social security and health insurance people. Thus this would be my picked audience.

    As a long term goal I'd try to create new links between clinicians < researchers (in different areas that might help) and < people in charge of funding research
    Sasha and Valentijn like this.
  3. Sasha

    Sasha Fine, thank you

    Messages:
    7,868
    Likes:
    6,277
    UK
    I don't know if she's thinking of targeting specific audiences - I think her question is more what action would you want a general audience to take, having seen the film.

    But I think that trying to get the film in front of particular audiences would be good. I'd especially like to see it getting in front of medics (and medical students).

    More than that, I'd like to see it on one of the big five terrestrial TV channels, not just being shown at special screenings in cinemas. Channel 4 (or was it 5?) showed "Fat, Sick and Nearly Dead" - I think there's an appetite for well-made documentaries.
    aimossy and xchocoholic like this.
  4. Cheesus

    Cheesus Senior Member

    Messages:
    216
    Likes:
    252
    Simply to act with greater kindness and compassion for those with CFS/ME (and others with 'invisible' illnesses). That is all we really need.
    aimossy likes this.
  5. Christopher

    Christopher Senior Member

    Messages:
    442
    Likes:
    167
    Pennsylvania
    I'll take a few million dollars over any kindness and compassion.
    Sasha and xchocoholic like this.
  6. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,614
    Likes:
    1,245
    Florida
    Run any possible applicable diagnostic tests on pwME immediately. Virals, nk, etc etc.

    Hopefully this video will get researchers interested and motivated.

    Tc .. x
    Valentijn and Sasha like this.
  7. Sasha

    Sasha Fine, thank you

    Messages:
    7,868
    Likes:
    6,277
    UK
    Actually I think we need shedloads of research money! :)

    Seriously, we have quite the shopping list: the adoption of sensible disease criteria, education of NHS personnel about the biomedical evidence, funding for biomedical research, the adoption of ME by an appropriate medical speciality, etc.
    xchocoholic and aimossy like this.
  8. Nielk

    Nielk

    Messages:
    5,158
    Likes:
    4,874
    Queens, NY
    We need to be realistic here with what a regular viewer watching the documentary can accomplish.

    They could attach fundraising sights to the end of the movie.

    In addition, I would ask each viewer to raise awareness about how devastating this disease really is. Each viewer should take the responsibility to tell five other people about what they learned about the disease. This can exponentially have a huge reach out.
    ukxmrv and Sasha like this.
  9. Cheesus

    Cheesus Senior Member

    Messages:
    216
    Likes:
    252
    I was answering the question what we can ask from a 'general audience'.
  10. Cheesus

    Cheesus Senior Member

    Messages:
    216
    Likes:
    252
    I doubt a 'general audience' that has no kindness or compassion towards our cause would consider donating a few million dollars. Capture hearts and minds, the dollars will follow.
  11. Sasha

    Sasha Fine, thank you

    Messages:
    7,868
    Likes:
    6,277
    UK
    So was I! I'd like the film to be followed by a request to donate to biomedical research so that we can catch them in the heat of the moment when the full horror of the situation has just struck them.

    I don't think we're disagreeing, Cheesus - I think we'd both like both compassion and cash, if we can get them. :)
    Cheesus and Valentijn like this.
  12. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    1,156
    Likes:
    1,766
    USA
    I do not have Facebook and asked this in another thread, but does anyone know when this film will be released and how one can see it?

See more popular forum discussions.

Share This Page