Livestreaming of Action for ME AGM and conference on Friday, 18 Nov 2016

[Cinders66]

I am worried that AfME are spreading their wings trying to garner international / UN clout when they can't even get the basics right.

This could be disastrous, it's bad enough them having a say in the UK, we dont want them influencing things abroad too.

I don't think AFME have real clout, I think it's just window dressing, presumably Sonya hoped to make connections in USA with the recent trip. It sounds impressive but I think they need to look at all the things that need addressing in these shores. 2 years ago their annual conference was on severe ME, why dont they campaign on that? We just hear grand but empty end the injustice talk. AFME should stay as an info and support national group which they probably do reasonably well, their current title obscures the reality that on many fronts we don't have much action for ME.

 

[Esther12]

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Questions about PACE will not be answered.
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Is that your guess, or an announced policy from AfME? Could be either!

 

[slysaint]

Sonya hoped to make connections in USA with the recent trip

see this link
http://forums.phoenixrising.me/index.php?posts/786958/

 

[Cinders66]

Thanks, I hadn't seen that

 

[Wildcat]

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@Esther12 .... Sonia or one of the other staff stated that Pace would not be discussed or questions about it answered at the conference.. words to that effect. Subject closed as far as AFME concerned..


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[Esther12]

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@Esther12 .... Sonia or one of the other staff stated that Pace would not be discussed or questions about it answered at the conference.. words to that effect. Subject closed as far as AFME concerned..
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They are so appalling that I can barely believe it.

Lets collaborate, unify and join together by ignoring the key research scandal affecting patients today!

 

[Snowdrop]

Nowt wrong with a nice inspirational pebble pile

...and not one question from the floor.

this sort of thing screams business marketing. A way of keeping the money flowing without having any product of value. It's a belief system. Feel inspired.