World ME Alliance, was previously IAFME: International Alliance for ME

Yes I did. However, my brain had imploded after the HOC debate earlier this afternoon and I was unable to understand or take in what was said.

The main speaker had a delightful voice and the slides looked informative and clear. Couldn't comprehend anything but a mention of Action for ME. The speaker said about their involvement and from that it appeared they were a main driver of this initiative. She said that there had been a concern over AFME particularly in light of the PACE trial but that they had issued a statement. It sounded like all was forgiven.

Due to my bad brain I may be wrong. It couldn't even understand a simple slide last night. A real pity as I would like to know more. Hope there is a copy online somewhere but too brain fried to check.
 
AfME is funding this new International group, which has the aim of enaging WHO re ME.

The CEO/president of the International Alliance for ME did say AfME issued a statement last August saying something to the effect it's philosophy had changed. Given @Trish's and all others' valid concerns, this situation is very concerning
 
Merged thread

The following posts discussing IAFME have been moved from this thread:
Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

InfiniteRubix said:
IAFM - do we know if the UK ME Association are members as well?

I will eventually 'get round' to actually posting what I've been intending to about advocacy... BTW do the ME Action people also live here?
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No, the ME Association aren't members of IAFME and yes, we have a number of members of the forum who are part of MEAction, both UK and US.

ETA: Following further discussion down thread from here, I need to correct the first part of my statement to "An organisation that the MEA is a member of is a member of IAFME".
 
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Do the problems extend wider than Afme?
Andy said:
No, the ME Association aren't members of IAFME
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The impression is given that the MEA considers itself to be represented through Forward ME, but this appears to be an entirely delusional belief as, so far as one can tell, Forward ME has no membership or constitution and its activities are solely at the discretion of a single person.
 
chrisb said:
The impression is given that the MEA considers itself to be represented through Forward ME, but this appears to be an entirely delusional belief as, so far as one can tell, Forward ME has no membership or constitution and its activities are solely at the discretion of a single person.
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Do you have a reference for that, I've not seen any statement from the MEA in regards to IAFME?
 
I think it was the general tenor of the minuted discussions of meetings of Forward ME last April or May when Forward ME suddenly, and apparently without preparatory discussion, decided it should become a member of IAFME. This has been why I keep going on about this subject. It seemed that all those voting thought Forward ME represented all of them. I will try and find it, but don't know when it will happen.
 
It is possible that I read too much into this minute from the 1st May 2018 Forward ME meeting but Charles Shepherd was present and if he had any objections they are not recorded.

Questions and discussion 3.1 The Chairman asked if Forward-ME could invite a member of the Alliance to come and speak to us. Alexandra Heumber confirmed that would be acceptable. Several members proposed Forward-ME should be the UK member of the alliance rather than just AFME. This was agreed.

 
chrisb said:
It is possible that I read too much into this minute from the 1st May 2018 Forward ME meeting but Charles Shepherd was present and if he had any objections they are not recorded.

Questions and discussion 3.1 The Chairman asked if Forward-ME could invite a member of the Alliance to come and speak to us. Alexandra Heumber confirmed that would be acceptable. Several members proposed Forward-ME should be the UK member of the alliance rather than just AFME. This was agreed.

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OK, but I wouldn't personally read that to mean that "the MEA considers itself to be represented through Forward ME" in any substantial way without any direct indication of the MEA's thoughts on the matter.

But it does mean I'll change my statement to "An organisation that the MEA is a member of is a member of IAFME".
 
Andy said:
OK, but I wouldn't personally read that to mean that "the MEA considers itself to be represented through Forward ME" in any substantial way without any direct indication of the MEA's thoughts on the matter.

But it does mean I'll change my statement to "An organisation that the MEA is a member of is a member of IAFME".
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I am not even sure I would be happy with that amendment. Groups are represented at meetings of Forward ME, but their seem only to be "linked organisations", not members. It was the use of the definite article in the term "te UK member of the alliance" which appeared to preclude the possibility of the MEA having separate membership.
 
It's all becoming rather confusing.....

chrisb said:
Several members proposed Forward-ME should be the UK member of the alliance rather than just AFME. This was agreed.
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The wording is curious. My (possibly incorrect) view is that AfME and MEA provide similar services as frontline patient charities. Forward ME having a different/separate function and acting as a mechanism where other frontline charities can come together and cooperate.

This makes it sound as though AfME and Forward ME are on a par.
 
I agree entirely. I don't think any of it was ever thought through. I tried to make the point at the time that the MEA appeared to have handed over representation of their members' interests to a body over which they had no control. "Delegatus non potest delegare" as the saying goes-although it does not strictly apply.
 
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