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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. Andy

    Andy Committee Member

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    I've scheduled a Facebook post and Tweet from the S4ME accounts for 9am tomorrow.
     
  2. Graham

    Graham Senior Member (Voting Rights)

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    Well done @Natalie ! And I accept the new label, Graham – slave driver, with my usual modesty and charm.
     
  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Thanks very much for this, Natalie and Josh.

    I have now shared it to some of my social media accounts:

    https://twitter.com/user/status/1286450076135694338


    https://www.pinterest.ie/pin/174584923043833071

    and some mailing lists
     
  4. Natalie

    Natalie Senior Member (Voting Rights)

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    MEMarge, Tom Kindlon, Trish and 2 others like this.
  5. obeat

    obeat Senior Member (Voting Rights)

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    I'll tweet nurses in N Ireland.
     
    Last edited: Jul 24, 2020
  6. Andy

    Andy Committee Member

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    MEMarge, Amw66, Natalie and 5 others like this.
  7. Natalie

    Natalie Senior Member (Voting Rights)

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    And Charles S says he will pass on the link to the NICE severe ME/CFS subgroup he's working with....
     
  8. Natalie

    Natalie Senior Member (Voting Rights)

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    Actually, it is not the whip I see in your hand, but the shiny fresh carrot, which you keep shifting a little further away as I get closer!
     
  9. Graham

    Graham Senior Member (Voting Rights)

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    Carrots are not a success story in my household. I planted three rows of them, shortly before my excursions into exotic parts (the local hospital). The slugs ate every last trace of them, apart from one which landed inside a protective collar that I use for my runner beans.

    On a previous occasion, I planted two rows of parsnips, and they grew. Something was wrong with the seeds though, and they turned out to be more like the sort of beet that you feed to cattle.
     
  10. Natalie

    Natalie Senior Member (Voting Rights)

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    We've just made a few minor corrections to the Severe ME videos and added a postscript to the Hospital one - an idea mentioned to me recently, which I thought could do with a bit of an airing... Screenshot 2020-07-29 at 17.44.00.png
     

    Attached Files:

    MEMarge, obeat, Sean and 5 others like this.
  11. Andy

    Andy Committee Member

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  12. Andy

    Andy Committee Member

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  13. Andy

    Andy Committee Member

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    Last edited: Aug 23, 2020
  14. Barry

    Barry Senior Member (Voting Rights)

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    Just shared this GET page on FB. Two extremely good videos. As well as @Jonathan Edwards and @Brian Hughes, several other excellent contributors too. Especially pleased to see the contribution by Professor Mark VanNess, a Co Chair of Health, Exercise and Sport Sciences, who explains why the treatment of ME/CFS patients runs counter intuitive for most health professionals, but needs to be understood by them.
     
    Last edited: Aug 24, 2020
  15. Andy

    Andy Committee Member

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  16. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Patients' experience

    This collection of videos illustrates key symptoms of ME/CFS: important when making a diagnosis. Patients describe these symptoms themselves. They had been ill for between two to thirty five years when interviewed and their age at onset ranged from ten years to middle age. The interviews give an idea of both the range and consistency of key symptoms.

    The videos provide a body of first-hand evidence. They can be just started, or dipped into, to get a ‘taste’ of the disease. They help recognition of the distinctive qualities of the symptoms in ME/CFS. Some supplementary information relevant to diagnosis is also included.


    The films are: "Reduced Function" (Duration 19 minutes)
    and "How does the disease start?" (Duration 27 minutes)

    https://www.dialogues-mecfs.co.uk/films/patients-experiences/
     
    rainy, cfsandmore, Kitty and 17 others like this.
  17. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I have watched both films now.

    Another high quality job! Informative and educational, but so heartbreaking. Thank you everyone behind and in front of camera for doing this! I hope the films will reach many people.
     
    rainy, cfsandmore, Kitty and 14 others like this.
  18. Natalie

    Natalie Senior Member (Voting Rights)

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    Thanks @Kalliope. I'm really glad to have these up and the next ones nearly ready. I'm hoping they make quite a substantial body of evidence as a whole. Yes, it is always shocking to have it brought home how ill people have been for so long, and how in so many cases, it needn't have been like this!
     
    rainy, cfsandmore, Kitty and 16 others like this.
  19. Trish

    Trish Moderator Staff Member

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    Thank you so much for your work on this, @Natalie. And thanks to all the people, including some familiar names and faces, who participated. So many damaged lives. I hope these videos get a wide audience. They would be good to show to doctors and other health and care workers, and to friends and family members.
     
    rainy, cfsandmore, Kitty and 16 others like this.
  20. Andy

    Andy Committee Member

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    rainy, cfsandmore, Kitty and 11 others like this.

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