1. Patients launch a $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!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Canary in a Coalmine - Exclusive interview and film trailer help launch Kickstarter campaign!

Discussion in 'Phoenix Rising Articles' started by Firestormm, Oct 23, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
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  2. Ember

    Ember Senior Member

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  3. Firestormm

    Firestormm Senior Member

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    Up to $18,000 when I looked just before publishing, Ember!! :)

    BTW We delayed publishing until this morning in the end, as Jen felt - after some technical difficulties with Kickstarter - it was better leaving the article until this morning.
    beaker, Ember and SickOfSickness like this.
  4. Ember

    Ember Senior Member

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    Where do you find that? I find $10,517 here.

    Edit: Found it!:thumbsup:
    Firestormm likes this.
  5. Firestormm

    Firestormm Senior Member

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    $19,214 now :) :) :)
    Simon likes this.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Wow! I'm just bowled over by the trailers and this interview. This is going to be an absolutely amazing movie!
    Ember, leela and Firestormm like this.
  7. RUkiddingME

    RUkiddingME Senior Member

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    My pledge is in and I look forward to attending the screening!! Already $20,000 raised! This is going to happen folks! YAY for us!
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  8. leela

    leela Slow But Hopeful

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    $21,471!!!
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  9. Ember

    Ember Senior Member

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    Canary in a Coal Mine shared a link.
    near Princeton, NJ, United States
  10. akrasia

    akrasia Senior Member

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    This is a perspective that has been missing from the conversation. Mary Dimmock echoed this recently when she declared that her son should never have gotten M.E. This is not merely a counter factual assertion. The lives of those who succumbed to M.E. in the 1980's were judged disposable, like so many of our fellow citizens, who have the "bad luck" to be poor or mentally ill. The marginalization machine geared up and got to work suppressing alternate views, rendering people's conditions "inevitable" or their clamoring for effective medical attention and research illegitimate, even ludicrous, akin to a demand to accepting a flat earth. How could anyone think in any other way besides M.E. being a dysfunctional adaptation to some vague, threatening modernity.

    I don't think the "system" is broken. I think M.E. lays bare the way the institutions like the NIH, the CDC, and their academic extensions, operate. I hope Jen and company emphasize the nature of power and the economics, misogyny, the devotion to a stupid positivism, the flight from complexity, and an arrogant, high handed bureaucratic complacency that even now, as we've seen with the IOM debacle, renders us supplicants rather than equal actor/citizens.

    This perspective by the newly diagnosed of questioning why M.E. was not addressed when it emerged circa 1984 is powerful and I think in the next few years will become more and more prominent.

    A friend of mine's daughter, like Jen engaged in a Phd program, was diagnosed a few months ago and had to drop out. The juggernaut rolls on.
    beaker, jeffrez and greebo like this.
  11. Simon

    Simon

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    Great article, Fire, thank you. And very persuasive filmakers too ($23,500 is latest figure).

    Funnily enough I saw my consultant recently who said he was worried about research that failed to include the severely-affected, because it might exclude those people who define the illness.
  12. Ember

    Ember Senior Member

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    Half way! :)
    Firestormm likes this.
  13. leela

    leela Slow But Hopeful

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    omg, halfway in just over 24 hours! this is fantastic! here's to a continuous momentum :)
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  14. Ember

    Ember Senior Member

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    Canary in a Coal Mine
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  15. Nielk

    Nielk

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    my bold

    I hope that history will not show how we have failed at this juncture of the IOM contract to do whatever possible to stop it before it can cause damage to countless generations to come. Will our children and grandchildren blame us for just standing by, or worse, taking part in this? Because the damage could be that great and the stakes so high, it is not an easy decision.
    beaker likes this.
  16. LJS

    LJS Insert Witty Comment Here

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    I am thinking of donating, I wanted to express my one concern and am interested what the filmmakers opinion is. The film preview mentioned environmental toxins and the title suggests this narrative too. I hope the film does not focus much on the cause of this illness which is very unclear at this point but more on proving to the audience that the patients are truly sick. In other words present the facts so clearly that it invokes an emotional response from viewers instead of trying to provoke an emotional response without the substance for scientist and people more critical of the illness to believe it.

    All in all I am sure it will be beneficial to the community and I wish the team all the best.
    beaker, jeffrez, Blue and 3 others like this.
  17. Ember

    Ember Senior Member

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    You can scroll down here to ask a question:
  18. SickOfSickness

    SickOfSickness Senior Member

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    Jennifer addressed this in a FAQ on the site.

    She said something to the effect of, she will be including all the views on what are possible causes, and not focusing on any one. I gathered it was like you said, to show the causes are unclear.

    In reading what she writes, I am very confident she will show we are ill, with some of the abnormal test results and so on, (the few we do have) and what experts say (like Enlander).

    As well as showing lots of types of treatments undergone and not saying which are better or right or wrong.
    Snow Leopard likes this.
  19. Firestormm

    Firestormm Senior Member

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    Morning LJS,

    You echo one of my own concerns - hence the question in the article above and Jen's answer to it. I did think that perhaps the Trailer used too much about toxins in the 9-10 minutes available to them - the bees etc. but that's just my own opinion. I don't think it necessarily gave the impression the complete documentary will lean too much to toxins being THE cause. Have another read of Jen's answer above and raise your concerns with her as Ember has indicated. The more she is aware of people's concerns the more your concerns might influence the film outcome.

    BTW the questions in the article above are abridged. My questions to Jen - and we could only do this interview via email unfortunately as we were both feeling worse than 'normal' at the time - were more detailed. But I did want to better understand the reason why the title for the film was chosen.

    Good concern though - thanks :)
  20. Firestormm

    Firestormm Senior Member

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    Latest update:

    Canary Update.JPG
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