United Kingdom: ME Association governance issues

[bobbler]

I suggest you write to the MEA and ask for the survey to be opened up to previous members and anyone with ME/CFS in the UK since they purport to speak for and serve us all, not just their members.

I agree with previous members - surely one of the most important constituencies for such a review to be contacting? just like for a commercial company it would be the loyal customers that should need their product who they'd lost in the last x years.

I can sort of understand the issue with 'anyone with me/cfs in the UK' and how that could be checked on and the potential (although maybe unlikely!) of large numbers of not ill people overwhelming it. Even though I agree very much with the sentiment that lots of those ill and who it should serve haven't quite joined because of this. But how that is done? I'm interested to hear more from anyone who has experience of these reviews, like @Utsikt , to hear what tools or ways of covering this sort of things might be open to them?

 

[Cinders66]

Which they are now going to be doing. New for this org, MEA, & very overdue, too late for me, from a charity that's seemed incapable of understanding needs and acting with due urgency

• produce a survey (open to all who have severe ME) a few months before the panel to ensure we cover the top topics

More here: https://twitter.com/user/status/1899142222022344721

Has anyone seen this survey “for all who have severe ME. supposed To take place before the meeting panel on severe ME in August please?