The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
Discuss the article on the Forums.

2017 CMRC Conference

Discussion in 'Upcoming ME/CFS Events' started by AndyPR, Apr 25, 2017.

  1. NelliePledge

    NelliePledge plodder

    Messages:
    794
    Likes:
    3,569
    facebook comments on AFME about the Announcement about recording but not live streaming CMRC

    Jackie Goold this is the 21st Century come on CMRC you can do better than this

    [​IMG]
    Lyn Gillame
    That's a great shame as even if a few gremlins get in it's good to see it live and know that you are hearing what actually is being said in real time.
    I really appreciated the recent symposium in the states that was live streamed...

    Personally I had no trouble reading anything that was actually on the screen on the last occasion...it was only the question sessions to certain members that I didn't get to hear.....

    It's not so enabling to take this route imho....
    I'd like the option to feel as involved on the day as possible.... as I'm sure many other mostly/housebound people would...and visuals do this much better than someone else's written version....although I recognise their worth for those who cannot do visual input.
    One also wonders whether in terms of message transparency ...the CMRC appear to be going backwards...
     
    dangermouse, MEMum, slysaint and 4 others like this.
  2. NelliePledge

    NelliePledge plodder

    Messages:
    794
    Likes:
    3,569
    come on it is a public event how can they even be considering allowing people to opt out of having their talks recorded
     
    dangermouse, Joh, MEMum and 7 others like this.
  3. Binkie4

    Binkie4 Senior Member

    Messages:
    594
    Likes:
    2,683
    Maybe they are worried someone will "do an Esther Crawley" and let the game out of the bag.
     
    Orla, dangermouse, Joh and 2 others like this.
  4. NelliePledge

    NelliePledge plodder

    Messages:
    794
    Likes:
    3,569
    Sounds like a set up so EC can opt out to me. After all when she signed up it wasn't open to the non scientists to attend. They must think she ll be scared off. But we reall want to help her overcome these negative thoughts and well informed patient avoidance behaviour. She needs some Patient Engagement Therapy to help with that. Some group sessions will help her learn how to manage her condition and increase her engagement activity
     
    Orla, Countrygirl, Jan and 10 others like this.
  5. AndyPR

    AndyPR Senior Member

    Montoya is now presenting as well.
    http://www.meassociation.org.uk/201...-at-the-conference-next-month-18-august-2017/

    I find it somewhat amusing that the MEA feel the need to put
    and
    In isolation, the conference is a good idea, like all these conferences are, the sad thing is that it's all part of the CMRC smokescreen of "look at all the things we are doing to advance "CFS/ME" science....something...something..biomedical", all the while it props up the BPS crowd.
     
    Countrygirl, MEMum, Esther12 and 5 others like this.
  6. Skycloud

    Skycloud Senior Member

    Messages:
    496
    Likes:
    2,408
    UK
    Crawley and Montoya are presenting at the same conference. People may spot the difference.
     
  7. MEMum

    MEMum Senior Member

    Messages:
    435
    Likes:
    2,229
    Unfortunately I have had to decide not to go next week. This is due to my back pain, (not ME) being even worse over last month or so. I hope that one or more people who are PR members, will be there.
    Wig and cape now back in cupboard.
     
    slysaint, Esther12, Joh and 2 others like this.
  8. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,894
    Sorry to hear your back pain is bad at the moment. I hope it improves.

    Is anyone going who can report back?
     
    Esther12 and Skycloud like this.
  9. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,481
    Ooh I don't know; the MRC and NICE clearly don't.
     
    MEMum, Jan and Valentijn like this.
  10. NelliePledge

    NelliePledge plodder

    Messages:
    794
    Likes:
    3,569
    No surprise AFME didnt manage to get organised to do livestreaming. Although there was an offer made to them on Facebook from a woman with ME who was previously involved in film production to call in some favours to get help so it could be livestreamed as well as recorded. A few tweets posted today but either my eyes are tired or the pics of slides are blurry so not worth posting. The plan is allegedly to post the videos on Youtube "as soon as possible" not there yet for today's proceedings
     
    MEMum, slysaint, Hutan and 2 others like this.
  11. NelliePledge

    NelliePledge plodder

    Messages:
    794
    Likes:
    3,569
    slysaint likes this.
  12. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,740
    Likes:
    19,319
    UK
    MEMum and NelliePledge like this.

See more popular forum discussions.

Share This Page