ME Association Nov 2017 monthly survey - Unrests effect on public recognition & understanding of ME

Andy

Andy

Retired committee member
This was pointed out in a post on another thread but I thought it'd be interesting to have it in it's own thread.


  • To what extent has the very positive publicity surrounding 'Unrest' changed public recognition and understanding of ME/CFS in the UK?
  • Major improvement
  • Partial improvement
  • Slight improvement
  • Don't know
  • Mixed - helpful and unhelpful
  • Made slightly worse
  • Made a lot worse
Vote at http://www.meassociation.org.uk/ - should be in the middle column at the bottom of the page.

Interesting comments are being made on their Facebook page
Code: 
https://www.facebook.com/meassociation/posts/1539064522817867
You'll need to copy and paste the link above, the MEA have done something weird with the viewing permissions on their post so it won't auto-display here.
 
A number of comments that are being made, which I agree with, is that it's far too soon to say. Either the poll should have been delayed for quite some time or, if they wanted to hold an Unrest themed poll now, make the question along the lines of "Do people think that Unrest will cause an improvement or not".
 
Maybe just me but I was struck that there were a few people posting saying they hadn't shared Unrest links on their social media.

I've only been diagnosed 2 years and it is frustrating when people friends and family don't register much interest in ME but I keep posting on FB and retweeting and have emailed them as well. I'm still hopeful that if any of them actually watch the film they will become less disinterested. One friend did come with me. Am I just naive to the level of apathy??
 
NelliePledge said:
I've only been diagnosed 2 years and it is frustrating when people friends and family don't register much interest in ME but I keep posting on FB and retweeting and have emailed them as well. . . . Am I just naive to the level of apathy??
Click to expand...

@NelliePledge I feel your frustration. I've been diagnosed almost 28 years, and have seen no difference (improvement) in interest from friends and family. Of course, in my part of the world, there is virtually no media coverage of the illness.

I hope the level of apathy I've experienced isn't the norm, or that it soon changes. I became so demoralized earlier this year when virtually no one of my acquaintance was willing even to invest 17 minutes to watch Jen Brea's TED talk.

For now, I've decided to keep my mouth shut. That way, I'll know public recognition, and possibly understanding, has improved when people raise the subject with me -- rather than me raise it with them.
 
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