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

[Wildcat]

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Questions about PACE will not be answered.
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[Wildcat]

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And AFME won't answer hard questions such as why have they not lobbied for the use of the CCC or ICC as diagnostic and research critieria in the UK, and as official AFME policy.


AFME is really still a fatigue charity which focuses on illness management, and pacifying the patients, whilst appeasing the status quo of the UK policy.

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[Sasha]

Belatedly found AfME's Twitter feed:

https://twitter.com/actionforme

Confirms the UN thing:

https://twitter.com/i/web/status/799599091890016257

 

[Sasha]

Is it just me or are they still off air?

 

[Valentijn]

It said they'll be back at 3pm I think. 45 minutes left?

 

[Sasha]

It said they'll be back at 3pm I think. 45 minutes left?

Oh! Where did it say that? The agenda had the next thing on at 2 pm.

 

[Cinders66]

https://www.actionforme.org.uk/uploads/pdfs/2016-2021-strategy.pdf

It would be interesting to see if the aims of the previous 5 year strategy was met, not that this aims very high

 

[Valentijn]

Oh! Where did it say that? The agenda had the next thing on at 2 pm.

The person running the "chat" left a comment saying it. Not sure what the point of the chat is though, since patients can't have their comments or questions passed on to the speakers.

 

[Sasha]

Still off air?

 

[Valentijn]

Still off air?

Yeah

 

[Sasha]

They're back, but now it's the AGM.

 

[Dx Revision Watch]

• Action4ME 3:31 PM Hello and welcome back to the Action for M.E. livestream. In order to keep on schedule we will not be passing questons from lovestream chat on to the panel of speakers and will only be taking questions from people in the room. If you have a question that needs answering you can contact our Information and Support Officers by emailing admin@<censored> or our CEO Sonya Chowdhury by emailing sonya@<censored> Thank you.

• Action4ME 3:32 PM *livestream, woops what a typo that was.

 

[Valentijn]

Action4ME 4:31 PMHello and welcome back to the Action for M.E. livestream. In order to keep on schedule we will not be passing questons from lovestream chat on to the panel of speakers and will only be taking questions from people in the room. If you have a question that needs answering you can contact our Information and Support Officers by emailing admin@<censored> or our CEO Sonya Chowdhury by emailing sonya@<censored> Thank you.

Censored email addresses are by far the most helpful

 

[Valentijn]

Okay, that was 15 minutes of AfME telling us how awesome they are, interspersed with generic power point drivel.

 

[Cinders66]

So Gina Rutherford left the fiekd as couldn't sustain funding but AFME had a £200k surplus and MRC are keen to invest in ME, I don't understand this

 

[Dx Revision Watch]

Okay, that was 15 minutes of AfME telling us how awesome they are, interspersed with generic power point drivel.

Nowt wrong with a nice inspirational pebble pile

...and not one question from the floor.

 

[Sasha]

Guess that's over.

 

[Wildcat]

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I think that the ephemeral non existent but important sounding International Alliance - exemplifies Sonia Chowdhury's style and actions ..... big talk, stylish, impressive sounding hot air .....
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[BurnA]

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.

 

[Molly98]

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.

Quite agree, what it will mean is Crawley and co, via SC and AFME having even more influence internationally.
Can we have someone from IiME be sent to the UN to represent us?