Tuesday, December 05, 2006

Not the Spotlight of Malady!

I did an interview for The Herald this week re my 20 year anniversary of ME (the night a virus came to live in my brain!) and the recent Gibson report that calls for more biomedical research into the dastardly causes. I confess I do these articles with a heavy heart, always wishing someone else would do them instead. Get thee away, oh spotlight of malady. But the responses and thanks I've had via e mail have been consoling and heart-warming. A difficult aspect of ME is feeling you can't help others as much as you'd like, so it was good to feel that the article expressed other people's feelings too. If the copyright thingy allows me, I'll post the article later.
-C

8 comments:

Anonymous said...

Hey C, I wanted to link the article on velo-gubbed, but couldn't do it via the Herald website . . . as you know, I think it was a great feature, well done for having the personal made so public, it is not easy to do. I was, though, a little disappointed the journalist hadn't mentioned NICE more specifically, since their dangerous guidelines will be sure to get big media headlines in spring (ME sufferers should get on their bikes!), but this is perhaps nitpicking, you can't cover everything. It's great the Herald highlighted Gibson 'cos there was precious little coverage of it elsewhere. Hopefully, the UK public is being inched towards the truth - slowly but surely, we will get there! It is just so bizarre to have an illness where empathy and perception vary so much according to what the media is throwing up.

Anonymous said...

I read your interview in the Herald with great interest and I would like to add my thanks to the many I'm sure you have already received for allowing your own private battle to be highlighted in this way in order that greater publicity can be given to this new report.
My own story over the last twenty years or so is unfortunately incredibly similiar to your own and to endure an interview and invasion of privacy for a much greater good is something for which you must be commended.
Once again, thank you.

Mo said...

Well done again Ciara.

Lani said...

Hi Ciara, I remembered to find your article in The Herald and via that made my way to your blog. Hope you don't mind, can't shake the feeling that I'm snooping! Because of contact I've had in the past with people who've had ME it's always startling to me to be reminded that its status as a devastating illness (cf 'psychological') is ever questioned at all, especially in 2006. It's outrageous that on top of managing the illness you are put in the position where you have to keep reiterating this message. Maybe we'll get a chance to chat further about this. I hope good things come out of the article... Your blog is lovely and when I'm not at work I'll come back and have a read of some of your poetry, if that's ok. I've been tempted to set up a blog in the past, but I don't have the self-confidence or commitment so I'm full of admiration. Who needs to write a novel when they're maintaining a blog like this?!
See you at the class, Lani

Ciara said...
This comment has been removed by a blog administrator.
Ciara said...

Thanks for all the support and kinds words.

Nice to see you here too Lani,

-C

sofamum said...

Yeah, well done again and thank you. It was a powerful article thanks to your strong and brave words. I have a fantasy that once the biomedical truth comes out about ME there will be a Panorama investigation of all these years of criminal medical and governmental negligence and spin-doctoring about ME, followed by Jeremy Paxman on Newsnight interviewing Simon Wessely or one of those other scoundrels as the chief culprit and they will be confined to the dark bin of history forever along with the CEO of Enron and all other conniving fraudsters of our age. The Herald article get us one step closer...

Anonymous said...

Wouldn't that be fab, Jeremy shouting down Wessley: And how did 100 000 - 250 000 people conspire to perpetuate their illnesses with negative beliefs? Answer the question! You're not answering the question!