Discussion in 'General ME/CFS news' started by Andy, Mar 11, 2018.
Really is heartbreaking.
Complete with a short (3 minute) video from AfME featuring Julia Newton and George Purdie - which is excellent
EDIT: Also quotes from Charles Shepherd (I hadn't read to the end when I wrote the above).
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.
Good to have this story out on Mother’s Day bringing home the impact on ME patients as well as their families.
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.
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.
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:
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.
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.
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.
I couldn't agree more
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.
Separate names with a comma.