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Daily Mirror: "Heartbroken mum suffering a 'living death' that means she can only see her son a few minutes a day"

Discussion in 'General ME/CFS News' started by Andy, Mar 11, 2018.

  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Location:
    Hampshire, UK
    https://www.mirror.co.uk/news/uk-news/heartbroken-mum-who-can-only-12166605
     
    Joh, ahimsa, Solstice and 29 others like this.
  2. Nellie

    Nellie Senior Member (Voting Rights)

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    Really is heartbreaking.
     
    Squeezy, Binkie4, Louie41 and 16 others like this.
  3. TiredSam

    TiredSam Moderator Staff Member

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    Location:
    Germany
    Complete with a short (3 minute) video from AfME featuring Julia Newton and George Purdie - which is excellent :jawdrop:

    EDIT: Also quotes from Charles Shepherd (I hadn't read to the end when I wrote the above).
     
    Last edited: Mar 11, 2018
    Joh, ahimsa, Chezboo and 17 others like this.
  4. Daisymay

    Daisymay Senior Member (Voting Rights)

    Messages:
    659
    So heartbreaking, what a beautiful wee boy. A good article and good video from Prof Newton, clearly saying it is an organic disease, not behavioural. We need more articles like this to dispel the psychiatric/lazy malingerer myths and to get over the degree of severity many endure. Thanks to all involved.
     
    Squeezy, Webdog, Nellie and 15 others like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    9,049
    Location:
    UK West Midlands
    Good to have this story out on Mother’s Day bringing home the impact on ME patients as well as their families.
     
  6. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,005
    Interesting how the media tone is changing somewhat. My cynical side says they tend to go with whatever way they think public opinion is going - which I like to think bodes well when we see stories like this.
     
    Sarah94, Lidia, Squeezy and 11 others like this.
  7. Russell Fleming

    Russell Fleming Senior Member (Voting Rights)

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    120
    The article came from the Liverpool Echo and was posted today - which is Mothering Sunday in the UK.

    Sophie was one of a number of people with severe M.E. (or their carers) who kindly contacted us when we appealed for case studies. We're hoping to get more severe M.E. stories into the press whenever we can.

    http://www.meassociation.org.uk/201...oddler-son-a-few-minutes-a-day-11-march-2018/

    Not sure how Action for M.E.s video ended up with the ME Association in the Mirror, I guess that was down to whoever posted the story, but if you look at the original Echo version, you'll see a video at the top of the page shot by Sophie as she struggles to move across the floor:

    https://www.liverpoolecho.co.uk/news/health/disease-like-living-death-means-14394864
     
    ahimsa, Chezboo, Skycloud and 18 others like this.
  8. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    1,186
    This should have been MEA main aim for decades. Sophie's story isn't new or unusual. She's not a single Case. The severe form of ME should be right up there with huntingtons and MS as regarded as a horror of illness, yet it's been completely lost in the debate around CFS, fatigue and exercise. Look at MEAs own awareness video on your site, there's no severe images.
     
    Sarah94, ahimsa, Chezboo and 15 others like this.
  9. Jan

    Jan Senior Member (Voting Rights)

    Messages:
    497
    Totally agree, the stories need to be much more hard hitting like this, including the reality of severe ME, the deaths and the numbers of suicides due to the immense suffering and lack of medical care and hope for the future. Their stories must be told, we owe it to them.
     
    Last edited: Mar 11, 2018
    Sarah94, Amw66, Joh and 11 others like this.
  10. Jan

    Jan Senior Member (Voting Rights)

    Messages:
    497
    I've always thought this, ME awareness days should not just be all fluffy and solely for fund-raising. The most powerful thing I've seen is the names and details of the dead on placards at Millions Missing demos. The public needs to see this, though it is obviously very distressing for the families when asked for permission.

    If I die before I'm really old, you have my full blessing to shout it from the rooftops, put me in the newspapers and put my details on a placard.
     
    Sarah94, Amw66, Lidia and 10 others like this.
  11. JemPD

    JemPD Senior Member (Voting Rights)

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    I couldn't agree more
     
    Joh, Binkie4 and Webdog like this.
  12. Dolphin

    Dolphin Senior Member (Voting Rights)

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    3,162
    I agree that people who are severely affected can tell powerful stories in the media.

    But a reminder for such people to put yourselves forward if you can.

    I have dealt with hundreds of media enquiries over the years but for many of them we wouldn't have had severely affected people to put forward.
     
    Joh, Allele and petrichor like this.

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