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

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?
 
Snowdrop said:
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?
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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.
 
Andy said:
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.
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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.
 
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Andy said:
AS for mission statement, who knows? The groups involved don't seem to feel the need to inform the patient community.
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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.
 
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Sly Saint said:
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
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I don´t know anything about them. Anyway I live in the south of Spain
 
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