1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
Discuss the article on the Forums.

Gloucestershire Echo

Discussion in 'General ME/CFS News' started by Fibrobabes, Nov 5, 2010.

  1. Fibrobabes

    Fibrobabes

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  2. Fibrobabes

    Fibrobabes

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    hope it is ok?
  3. Sasha

    Sasha Fine, thank you

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    Thanks for posting the link - it's a really good article. Much more informative that the TV piece and even mentions XMRV and "HIV-like".

    Thanks again for being willing to be interviewed - it's a huge help to us all. :thumbsup:
  4. Fibrobabes

    Fibrobabes

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    Sasha no problems we just need people to add comments on how they feel on the echo site we need volume!
    thanks
  5. Sasha

    Sasha Fine, thank you

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    Done! Or at least I've submitted a comment and been thanked for it so maybe they're moderating.

    I agree, we should all visit the story to give them hits and leave an appreciative comment for covering the story. That's how we'll get more coverage!
  6. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    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??
  7. Sasha

    Sasha Fine, thank you

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    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!
  8. Sasha

    Sasha Fine, thank you

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    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)! :D
  9. Fibrobabes

    Fibrobabes

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    thanks everyone
  10. Merry

    Merry Senior Member

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    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.
  11. Fibrobabes

    Fibrobabes

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    Merry,
    I think they have to check comments
  12. Sasha

    Sasha Fine, thank you

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    I can see some comments there now including mine but not picture's, which is odd. Maybe they're still processing them but if so it's odd that they've allowed a duplicate through. Oh well, it's something!
  13. Min

    Min Senior Member

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  14. Fibrobabes

    Fibrobabes

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    I don't think all the readers understand our point.
  15. Sasha

    Sasha Fine, thank you

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    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.
  16. anne_likes_red

    anne_likes_red Senior Member

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    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 :)

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