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Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Oct 15, 2018.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Rachel M, Joh, Ash and 10 others like this.
  2. Natalie

    Natalie Senior Member (Voting Rights)

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    "A dangerous model abandoned as NICE seeks to reform care for ME/CFS patients in 2021" - The revised Prologue is also on youtube... Now with less music.. The last video will be released on Wednesday on the Dialogues website.
     
    MeSci, Lilas, lunarainbows and 18 others like this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Please could this video be put onto a separate thread so it gets highlighted on the net.
    People at the NHS need to see it.
    An abbreviated version (eg from the first 6 minutes or so) would also be ideal to replace the old MEA video on the NHS England website.
    @Russell Fleming
     
    MEMarge, Fizzlou, Ash and 6 others like this.
  4. Hutan

    Hutan Moderator Staff Member

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    The moderation team has decided that it's best to keep the Dialogues videos together on one thread. We will make a forum banner to promote the latest video, and we will add links to the video from suitable resources threads.
     
  5. Andy

    Andy Committee Member (& Outreach when energy allows)

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    "New video: The Tangled Story of ME/CFS: Controversy, Denigration and Ignorance.

    It is 1 hour 11 mins long, in six chapters which can be accessed individually when the video is public, so viewing can easily be spread out.

    0.00. Chapter 1 - ME: the Story Begins

    9.41. Chapter 2 - ME is rebranded as a psychogenic illness: chronic fatigue syndrome

    23.01 Chapter 3 - A confusing medley of names and definitions undermines research efforts

    29.51 Chapter 4 - The widespread and pernicious impact of a careerist psychiatric lobby

    53.33 Chapter 5 - The devastating failure of the medical profession

    1.04.15 Chapter 6 - Fundamental Systemic Injustice"

    https://www.dialogues-mecfs.co.uk/films/the-tangled-story-of-me-cfs/

     
    Argos, Joh, JaneL and 33 others like this.
  6. Ash

    Ash Senior Member (Voting Rights)

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    Sounds great from the chapter headings.
    Thanks @Andy
     
    Louie41, MEMarge, Missense and 7 others like this.
  7. Trish

    Trish Moderator Staff Member

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    Excellent film, thank you Natalie Boulton and Josh Biggs for your superb work on this project, and thanks to all those who contributed to this final film.
     
  8. JohnTheJack

    JohnTheJack Moderator Staff Member

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    3,963
    Another excellent video.

    Thanks to Natalie and Josh and all who helped.
     
    Skycloud, Louie41, MeSci and 12 others like this.
  9. Natalie

    Natalie Senior Member (Voting Rights)

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    Thanks to your really excellent proof reading.
     
    Louie41, MeSci, oldtimer and 15 others like this.
  10. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    It really is a good video. It was quite poignant to see Graham in the film and photos of Bob and Alem.

    And I apologise how this might sound, I have little tether ATM and this is important to me so while seeing the video is all well and good and it is well done I would like very much for us to have information shared that would make it even better (in terms of being hopeful about it's impact) -- like what are the plans for getting this video into the hands of people who don't know what we know and how might we be able to help (for those of us on social media)?. I'm sure it will play just as well in countries outside the UK.

    Anybody know the plan? Unless it gets press and lots of people watching (and some of those people being in a position to help) . . .

    I'm sure this has been addressed and thought through I'm just saying that us knowing what the plan is could be useful and or encouraging.
     
    JoanneS, Louie41, Oni and 13 others like this.
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I have watched it twice now and my only minor observation is that many of the documents shown as stills could be on screen for longer, leaving the audio to run, as sometimes they flash up and off and are almost impossible to read (unless you pause the recording).
    Most of us are familiar with the documents shown and the names of those involved, but anyone who is unfamiliar with it all will not pick up that the same names crop up time and again.

    just a thought.
    Excellent job otherwise.
     
    JoanneS, Amw66, Skycloud and 10 others like this.
  12. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Well done on the film!
     
    Starlight, Skycloud, Louie41 and 8 others like this.
  13. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    Louie41 and alktipping like this.
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    7,309
    Location:
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  16. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    1,620
     
    Ariel, Fizzlou, Starlight and 3 others like this.
  17. Natalie

    Natalie Senior Member (Voting Rights)

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    Dialogues update -
    I've made pdf transcripts of four of the videos - Prologue, longer and shorter PEM videos and Activity and Energy Management - Pacing. They can be found below the videos. https://www.dialogues-mecfs.co.uk/wp-content/uploads/2020/03/Prologue-transcript.pdf https://www.dialogues-mecfs.co.uk/w...Activity-and-Energy-Management-transcript.pdf
    There are some very nice endorsements added on the home page, or to be added tomorrow, and there is also a flier (too big to attach here) but it is on facebook and twitter and it will go on the website tomorrow, when we finish off updating and tidying things up.
    We're also working on adding subtitles, which will include translations, to The Tangled Story..
    That video has been added to the Forward ME website - linked to - with this text I wrote.. https://forward-me.co.uk/faqs/
    The Tangled Story of ME/CFS (film)
    “The Tangled Story of ME/CFS: Confusion, Denigration and Ignorance” is the final video for “Dialogues for a Neglected Illness”, a project that received a Wellcome Public Engagement Fund Award 2018/21. Following the history of ME from its epidemic beginnings, it looks at issues that contributed to the ‘fundamental systemic injustice’ described by Valerie Eliot Smith, a barrister.
    A cognitive-behavioural model came to dominate UK research funding for ME/CFS and medical education, causing much of the medical profession to abandon medical treatments for patients. Many patients deteriorated, some becoming severely ill for decades. It was left to sick, citizen scientists to risk their health as they exposed deeply flawed psychological/behavioural research, before attracting the attention of concerned international professionals. Searching for truth they confronted entrenched university research systems driven by competition for funding, personal ambition and institutional self-promotion.
    The deep-rooted problems alluded to in the NICE Guideline 2021 must now be addressed.
    Watch the film: https://www.dialogues-mecfs.co.uk/films/the-tangled-story-of-me-cfs/


    The project ended in December, except for writing the final report... but we'll both go on adding what we can, when we can. I want to do smart transcripts of the Severe ME videos and the Introduction next.... but I have some other things I need to catch up on!
     
    ahimsa, EzzieD, Amw66 and 16 others like this.
  18. Lilas

    Lilas Established Member (Voting Rights)

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    Thank you very much, hoping that a french translation will be available if possible...
     
    Amw66, MEMarge, Sean and 2 others like this.
  19. Natalie

    Natalie Senior Member (Voting Rights)

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    I think Vimeo will translate into just about any language from the subtitles in English! So I hope it will work.. Will have to wait and see...
     
  20. MeSci

    MeSci Senior Member (Voting Rights)

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    Perhaps it should say 'Valerie Eliot Smith, a barrister with ME'?
     

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