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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Llewlyn King's ME/CFS manifesto

Discussion in 'Action Alerts and Advocacy' started by Simon, Apr 30, 2014.

  1. manna

    manna Senior Member

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    "Safe" is on veoh, which is a reliable and "safe" hoster to watch fims on. starts with a "mild" sex scene and is rated cert. 15. incidentally, in the film, she got ill following some kind of "fruit diet cleanse".> http://www.veoh.com/watch/v19703480qpt2EJww?h1=Safe (1995, Todd Haynes)

    Lymelife is on hulu in the states, and elsewhere, but some may not want to watch it this way cos of the copyright issue.
  2. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
  3. caledonia

    caledonia

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    Ugh - in "Safe", they make MCS out to be some kind of pyschological disorder. The whole time I was watching it, I was thinking, just raise your glutathione levels already. The more methylation supps I take, the better my MCS gets.
  4. manna

    manna Senior Member

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    hi, do you mean the film portrays it as such (psychological) or some people within the film? her doc mentioned it was psycxhological, which, i felt, was portrayed as being wrong and lacking understanding and of course that stance is experienced by most, if not all, wiyth mcs so depicts a reality.. a few people had issues with the community she joined but also felt that the filmmaker felt similar though tried to remain neutral for the sake of clarifying what these people do. i thought it was real good. edited out, sorry for spoiler..if you read it. the film usually goes down well with folk with mcs from my experience.
    Last edited: May 12, 2014
  5. caledonia

    caledonia

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    From what I remember, Julianne Moore's character thought the disease was psychological. Although I did like her cute little igloo/safe house. But that wouldn't be necessary if she had the proper treatment - but of course this is Monday morning quarterbacking. At the time of the film, avoidance was probably the only treatment.

    It would actually be great to see a documentary on people suffering from MCS and then getting proper treatment and recovering.
  6. manna

    manna Senior Member

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    she was doing the telling herself she loved herself bit but i dunno, i didn't really get that she thought it was psychological. i haven'y watched it in years. it ticked alot of my experiences like loved ones turning up wreaking of cologne and the conversation was the same id had, and the disbelief from the doc. what i thought she did well, julianne moore, was to hide her natural star type appeal to make herself appear physically weak and vulnerable. she looked like an ill person but without it seeming to be acted but then i think shes a great actress so i might be biased
  7. manna

    manna Senior Member

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    there is "Alllergic to the 20th century" on youtube. its pretty good though no treatments guaranteeing recovery...one fella recovered living in a tent which i can appreciate why that might be so, i think hes in it.

    the vid is not playing for me at the mo
  8. Bob

    Bob

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    I can't see the link to the original article on his website, on this thread, so here it is:

    A Bold Proposal for a Suffering Community
    April 30, 2014
    http://www.whchronicle.com/tag/capitol-hill-lobbying/
    http://www.whchronicle.com/2014/04/a-bold-proposal-for-a-suffering-community-2/
    (Both links are for the same article.)


    And here's his latest article re ME/CFS:

    May 12: A Disease Gets Its Day, but Who Cares?
    May 8, 2014
    http://www.whchronicle.com/2014/05/may-12-a-disease-gets-its-day-but-who-cares/
    Last edited: May 13, 2014
    WillowJ likes this.

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