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2017 CMRC Conference

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NelliePledge

Senior Member
Messages
807
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


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...
 
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NelliePledge

Senior Member
Messages
807
Binkie4 said:
Maybe they are worried someone will "do an Esther Crawley" and let the game out of the bag.
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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
 
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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
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
The purpose of the conference is to increase collaboration between researchers in the ME/CFS field and with those from other research/illness areas. This event provides an opportunity to learn more about latest published and unpublished research, meet potential collaborators and contribute to future developments.
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and
The ME Association is a board member of the CMRC and strongly believes in the importance of this working partnership – especially in helping to bring ME/CFS to the recognition of mainstream science as a legitimate biomedical disease in desperate need of increased funding.
Click to expand...

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.
 
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MEMum

Senior Member
Messages
440
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.
 
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NelliePledge

Senior Member
Messages
807
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
 
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