mama_marmotte: (Default)
[personal profile] mama_marmotte
Time to keep plugging for biomedical research into this disease ... www.investinme.org
Their conference is coming up soon.

Plus did anyone see that small piece on the Politics Show last Sunday? For those not in the UK, it featured a girl with ME who was studying but didn't qualify for any benefits because she wasn't deemed 'ill enough'. She went to Parliament to sit in on their working committee about ME and ended up speaking out, much to the amazement of the politicking gnomes all sat around discussing the 'issue' in safe isolation from anyone who actually has the disease.

Her name is Sam Brown, she is 24 and a journalism student. If you go to the BBC I-player site you can watch a repeat of it. It's right at the end so scroll along past the 1 hour marker and you should find it.

True Sam didn't 'look ill', well not to the untrained eye, but to those of us in the know her palour and vacant look were all too familiar. Oh and her hair. The hair said it all...

You know how it goes, when you're struggling just to be able to get up and go wherever you have to be, finding the energy to lift your hands above your head to fix the do just isn't possible. As someone who has spent the last 22 years whacking herself on the head whenever she uses a hairdryer (which may account for some cumulative cognitive dysfunction by now!), I could totally relate.
Go here to watch, (but don't forget to scroll past the hour marker).

ETA For those outside the UK, it's on UK YouTube clicky here

Date: 2009-05-12 08:59 am (UTC)
From: [identity profile] dragonsally.livejournal.com
Drat. You can only watch it if you are in the UK.

Date: 2009-05-12 10:07 am (UTC)
From: [identity profile] dragonsally.livejournal.com
Taa. I must be tired - I cried watching it! Brave gal.

Date: 2009-05-12 01:28 pm (UTC)
From: [identity profile] belle-marmotte.livejournal.com
Yes brave indeedy. Hats off to her for speaking out. She's a long-termer too, had it since she was 13.

Date: 2009-05-13 03:00 am (UTC)
From: [identity profile] augusthime.livejournal.com
Ooh! I watched! And seriously was in awe at all of her walking: She must have taken a caffeine pill like I do! *hahaha* Thank you for posting. =)

Date: 2009-05-13 04:29 am (UTC)
From: [identity profile] picklesofhstory.livejournal.com
It's nice to see ME getting coverage. Here in the States it gets mild coverage once in a while, but nothing huge. Fibro only seemed to get real coverage when Lyrica came out and the Pharm. Companies realized they could make money off of it.

Date: 2009-05-15 01:15 am (UTC)
From: [identity profile] island-rose.livejournal.com
Thanks for sharing the link, it was interesting to watch. I hope she'll get the support she needs to continue her study and change things for others in similar situations.

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