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Edinburgh News: Gerry Farrell: Why are you ignoring ME, Ms Robison?

A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
The Edinburgh girl I’m interviewing today doesn’t want you to feel sorry for her.

She wants you to feel angry. Emma Shorter, 23, is one of Scotland’s 21,000 ME sufferers. ME stands for “myalgic encephalomilitis” and is a systemic neuro-immune disease. The lazy name it’s been given is chronic fatigue syndrome. In the 80s, it was mockingly called yuppie flu in the media and sufferers were dubbed skivers. Emma had never heard any of these terms until she was 19 and had completed three months of her first year at St Andrews University. All her life she’d been active and healthy. Aged nine, she was climbing Munros. She swam, skied and sailed. She played hockey, started learning shinty and played the violin and the clarinet. When she turned 18, she volunteered for Project Trust and spent a year teaching English in Sri Lanka.

But her body began to change. One morning she woke up to find she couldn’t get out of bed. She had burning muscles and a raging thirst. She could see a glass of water on the bedside table. She wanted to reach out and bring it to her lips but she couldn’t move her hand. Soon afterwards she had to stop studying. In fact she had to stop all her activities – anything that took up her physical or mental energy left her unable to move. If she goes out, she needs to be pushed in a wheelchair or use her mobility scooter. ME comes with a nasty range of intensely unpleasant physical symptoms. Burning pain and spasms in your muscles when you move. Sudden, slow collapses when you’re active. Brain ‘freezes’ and disjointed speech. And an overwhelming fatigue that traps you indoors and in bed, which is where I’m interviewing Emma now.
Click to expand...
http://www.edinburghnews.scotsman.c...-why-are-you-ignoring-me-ms-robison-1-4441060

Again, good job @emsho :)
 
emsho

emsho

Messages
47
Location
Scotland
Cheers guys! My mum and I worked really hard on press release so glad it's paying off.
The fab journalist who wrote this was so enraged at the behaviour of W and co he's now helping with the protest!

I'm a bit exhausted but looking forward to the protest on Friday. Don't know if you've seen these 2?
There's an article in the Daily Record about C.B.T/G.E.T
http://www.dailyrecord.co.uk/news/real-life/crippled-me-doctors-say-its-10388830

and in the Scotland on Sunday:
http://www.scotsman.com/news/me-sufferers-seek-help-to-defeat-burden-of-chronic-fatigue-1-4439148

Can you tell I didn't enjoy having my pic taken?

I'm pooped but will be talking on Radio Scotland on Friday morning at 10:30... All I can say is I'll do my best!
Big thanks to the P.R community, your support when I initially joined and talked about G.E.T was so helpful and made it much easier to talk about it!
 
dangermouse

dangermouse

Senior Member
Messages
430
emsho said:
Cheers guys! My mum and I worked really hard on press release so glad it's paying off.
The fab journalist who wrote this was so enraged at the behaviour of W and co he's now helping with the protest!

I'm a bit exhausted but looking forward to the protest on Friday. Don't know if you've seen these 2?
There's an article in the Daily Record about C.B.T/G.E.T
http://www.dailyrecord.co.uk/news/real-life/crippled-me-doctors-say-its-10388830

and in the Scotland on Sunday:
http://www.scotsman.com/news/me-sufferers-seek-help-to-defeat-burden-of-chronic-fatigue-1-4439148

Can you tell I didn't enjoy having my pic taken?

I'm pooped but will be talking on Radio Scotland on Friday morning at 10:30... All I can say is I'll do my best!
Big thanks to the P.R community, your support when I initially joined and talked about G.E.T was so helpful and made it much easier to talk about it!
Click to expand...

You are doing an amazing job, well done and thank you so much, I know how much it will have taken out of you. :hug:
 
SilverbladeTE

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
trishrhymes said:
That is a brilliant article. Well done.

I particularly like that you place the blame squarely on Simon Wessely.
Click to expand...

Wessely is an evil parasite, this should never EVER be overlooked or forgotten
It is no accident, it is wilfully chosen on his part and for that crime he should be vilified and punished draconianly.
Being nice gets you nowhere with manipulative, evil scum, letting them away with it is cowardice and lets it happen again and again.
So yes he and the others should be called out whenever it gets aired
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Cinders66

Cinders66

Senior Member
Messages
494
Well done Emma :) some great articles, look forward to your protests too!
Your article and points needing action was mentioned in the Scottish parliament debate today :)
Just a note before th protests in Scotland, the Scottish health minister responded to the funding request with the "happy to receive applications" line we hear from the MRC in England etc. The problem with this open to proposals approach is it simply doesn't work for misrepresented/stigmatised illness where no one rushes forward as we have seen, despite CFS/ME being a highlighted area in UK for several years. The illness has a naf name, unhelpful broad criteria and is viewed as primarily caused or cured by behaviour by the medical profession so a more proactive approach to funding is required AFAIC, unless people are happy to wait for the trickle down effect of increased education and small drops of research findings to stimulate interest. Rituximab results etc might be a game changer.... I don't know how long it would take to stimulate more research purely through rebranding/ re education and I don't see a wholesale rebranding on the cards for some time either so I think offering up ring-fenced money to encourage researchers, as Norway have done & which worked 2011 in the UK, is appropriate to ask for.
 
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