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

I see that Forward ME, United Kingdom is on the list. Are all the participants (don't know if you can call them members) aware of membership of this new alliance?
@Russell Fleming

 

I also see ACAF is top of the list; their website
http://www.fibromialgia.cat/eng/frames.htm
"You are visiting the ACAF - Association of People Affected by Fibromyalgia
and other Central Sensitization Syndromes of Catalonia website."

@Aroa what can you tell us about this association?

eta:
and this one (also on the list)
Plataforma Familiars Fm-SFC-SQM, Spain

 

MERUK are posting on their page saying they support this organisation and the letter.

I still find it odd to lobby from the outside in.

 

Just heard back from ME CFS Foundation South Africa they also confirm they are a member of the IAME.

 

I find this statement odd:

Sitting at the heart of our international advocacy work is the ethical principle that access to biomedical care must not be restricted for anyone who has a significant possibility of needing it.

It seems a bit overly cautious and slightly vague.

I may simply have missed it but can anybody state what exactly is the mission statement for this international group? What are they hoing to accomplish?

 

Or it could be a way of sidestepping the use of GET and CBT, by saying that they aren't biomedical care, and therefore there is an ethical issue in not having biomedical treatment for PwME? Although that completely depends on how biomedical gets defined so I'm not so sure how strong that argument might be.

AS for mission statement, who knows? The groups involved don't seem to feel the need to inform the patient community.

 

My brain does not function very well but I would have thought there would be a more clear way to express that if that's the case.

 

yes they have the same statement as AfME on their website:
http://www.meresearch.org.uk/news/international-me-awareness-day-2018-who/

 

not sure if this has been posted; this outlines the IAME project (May 2018)
https://www.actionforme.org.uk/uplo...ed-briefing-international-advocacy-040518.pdf

eta: would have been nice to get this info beforehand.

eta2:
one of the goals:
"Put in place transparency and a consultation process with M.E. organisations
and patients on decisions related to M.E."

 

Oh definitely, I was just trying to guess at why they might have said what they did.

 

Couldn't agree more, especially when part of that document says


"and involvement of patients are essential."..... hmm. Not seeing much of that at the moment.

 

I really dislike and distrust folk who go around speaking on my behalf without involving me or making me, as a patient, aware of what they're up to.

It's not as though we're hard to find or engage with.

 

Exactly this. The apparent reluctance to share information is just so concerning.

 

Hostile, is a word that comes to mind, my mind anyway.

 

If you are trying to carve out for yourself a new career, it is inadvisable to share, too early, information which might put a stop to it.

Edited for punctuation.

 

So Solve were part of the big secret..

 

I'm very surprised the LVS is supporting Action for ME. Does someone of the Germans know more?

Edit to tag @Joh, @YaS, @MSEsperanza, @Philipp...

 

That makes me uncomfortable. It seems to me groups are increasing power that shouldn't have influence - that's just my view. I don't have the feeling they represent me. But their actions may affect me - and others. It's just a feeling...

 

This is presumably all being done in response to the clamour from people with ME that what they wanted more than anything was an additional layer of unaccountable bureaucracy. Who exactly do you call if you want to speak to the new organisation?

Have we ever managed to discover to whom Afme is accountable?

Do we know the source of funding, or indeed the budget of this new organisation? Have Afme received any special grants or funding to undertake this work, and if so from whom?

I must say that I intensely disliked the fawning tone of that letter to the official of the WHO. The man holds his status by virtue merely of the post he holds. The senders need to get off their knees and make clear that this an important matter within the man's area of responsibility and that there is an expectation that he will fulfill the requirements of his office.

It is of major concern that all this becomes clear at a time of uncertainty as to the nature of advice upon which action is being taken and from whom it is received. It did not need to be this way.

Edited for typo and punctuation.

 

I don´t know anything about them. Anyway I live in the south of Spain