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Check this!
http://www.thisisgloucestershire.co...blood-ban/article-2839573-detail/article.html
Fibro Babes
http://www.thisisgloucestershire.co...blood-ban/article-2839573-detail/article.html
Fibro Babes
Gloucestershire Echo
- Thread starter Fibrobabes
- Start date
- Messages
- 9
hope it is ok?
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- 9
Sasha no problems we just need people to add comments on how they feel on the echo site we need volume!
thanks
thanks
pictureofhealth
XMRV - L'Agent du Jour
- Messages
- 534
- Location
- Europe
Well done Fibrobabes - & I thought you were very composed and articulate in the TV excerpt!
About 20 minutes ago I posted a comment - or thought I had, but it hasn't appeared yet. I've realised that often, when I've registered on newspaper sites to make a comment, I then have to log back in a 2nd time to post the comment.
Initially I saw about 3 other comments there - including your's Sasha!, but I went back to the page just now and none are there any more.
Here is mine (which I have changed slightly since posted, in case it needs to be reposted!):
"Thank you for reporting on this story and showing an understanding of the issues at stake here.
The Americans have already taken a very proactive approach to the potential risks of the newly discovered XMRV (a retrovirus) and have appointed one of their top pathogen hunters, Ian Lipkin (Columbia Uni) to study it and to establish whether there is a proven link to the debilitating illness ME/CFS. Also a multi centre Blood Working Group is collaborating to find out whether there is a risk to the US national blood supply. ie Scientific progess is happening in the USA.
No patient seriously wants to have a neurotoxic retrovirus at the root of their illness, but it sure goes a long way towards explaining the severity of the symptoms ME patients have been experiencing for decades. And whether or not XMRV turns out to be the cause, patients would like scientists to continue steady biomedical research into this life wrecking conditon.
Meanwhile in the UK ... "
Perhaps it was too many words??
About 20 minutes ago I posted a comment - or thought I had, but it hasn't appeared yet. I've realised that often, when I've registered on newspaper sites to make a comment, I then have to log back in a 2nd time to post the comment.
Initially I saw about 3 other comments there - including your's Sasha!, but I went back to the page just now and none are there any more.
Here is mine (which I have changed slightly since posted, in case it needs to be reposted!):
"Thank you for reporting on this story and showing an understanding of the issues at stake here.
The Americans have already taken a very proactive approach to the potential risks of the newly discovered XMRV (a retrovirus) and have appointed one of their top pathogen hunters, Ian Lipkin (Columbia Uni) to study it and to establish whether there is a proven link to the debilitating illness ME/CFS. Also a multi centre Blood Working Group is collaborating to find out whether there is a risk to the US national blood supply. ie Scientific progess is happening in the USA.
No patient seriously wants to have a neurotoxic retrovirus at the root of their illness, but it sure goes a long way towards explaining the severity of the symptoms ME patients have been experiencing for decades. And whether or not XMRV turns out to be the cause, patients would like scientists to continue steady biomedical research into this life wrecking conditon.
Meanwhile in the UK ... "
Perhaps it was too many words??
Very good post, picture! Mine was a bit vague and ranty (oops).
When I hit the "submit" button, I was surprisingly taken to a registration page and ended up losing my post. I had to type it out again and resubmit. You'd think I'd have learned by now to take a copy first in case this happens but no...
I think things went wrong because, also surprisingly, it looked as though I had already registered with the Echo and was trying to register afresh. Anyway, I'm glad to hear my comment finally made it on there!
When I hit the "submit" button, I was surprisingly taken to a registration page and ended up losing my post. I had to type it out again and resubmit. You'd think I'd have learned by now to take a copy first in case this happens but no...
I think things went wrong because, also surprisingly, it looked as though I had already registered with the Echo and was trying to register afresh. Anyway, I'm glad to hear my comment finally made it on there!
No, I don't see any comments there now, either. I sometimes wonder whether the stuff we post on XMRV is so alarming that they're frightened of the details we're providing even though their story itself carries these implications to those in the know.
Or maybe they've just decided to introduce moderation as a precaution and we'll see our comments later.
Incidentally, when I said "vague and ranty" I meant I hadn't mentioned specific researchers and had a crack at the govt for not throwing resources at it. I didn't say the kind of stuff that would get a comments section shut down (just in case anyone is reading this and putting "vague and ranty" and "no comments visible" together and drawing the inevitable conclusion)!
Or maybe they've just decided to introduce moderation as a precaution and we'll see our comments later.
Incidentally, when I said "vague and ranty" I meant I hadn't mentioned specific researchers and had a crack at the govt for not throwing resources at it. I didn't say the kind of stuff that would get a comments section shut down (just in case anyone is reading this and putting "vague and ranty" and "no comments visible" together and drawing the inevitable conclusion)!
- Messages
- 9
thanks everyone
Merry
Senior Member
- Messages
- 1,378
- Location
- Columbus, Ohio, USA
I posted a short comment - a thank you - but I just checked now, and it is not there. Three comments by others show. I did not register after I commented. Is that the problem?
Anyway, I'm glad the news story got written, and thank you, Fibrobabes, for letting me know.
Anyway, I'm glad the news story got written, and thank you, Fibrobabes, for letting me know.
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- 9
Merry,
I think they have to check comments
I think they have to check comments
- Messages
- 9
I don't think all the readers understand our point.
They never all do - there are bound to be a few people who skim-read and aren't really thinking - but I think they're in the minority.
anne_likes_red
Senior Member
- Messages
- 1,103
Thanks again for being willing to be interviewed - it's a huge help to us all.
I agree with Sasha Fibrobabes, thanks for being interviewed - it's a good article. And thanks for taking the initiative and setting up a support group! I lived in Gloucestershire (nr Tirley) years ago after a bad ME crash. I found a reasonably sympathetic GP, but a support group would have been wonderful!
I'll post a comment too