Action for ME: "International M.E. advocacy: our latest project"

https://www.actionforme.org.uk/news/international-m.e.-advocacy-our-latest-project/

 

Any ideas what it means or if it has any worth?

I was critical previously of Sonya Chowdhury, who seems to have become invisible, going to Geneva on behalf of AFME , no doubt exoenses paid. I couldn't see how it was "where it's at" in terms of what needed addressing and changing and with so much action needed in our own country. Am I right or are they? Is WHO where it's at?

Of note two years ago AFME made a big fanfare about their severe ME symposium. The only outcome of it was them saying they were going to fund an advocate. When questioned on it they've said they haven't been able to raise funds to cover it, but they cover this. Maybe it's going with the times, or maybe it's priorities

 

I don't know about this latest initiative, but in general I have got the impression over a number of years that AfME waffle on a lot, but rarely seem to actually do anything useful.

 

'Access to biomedical care' sounds good in theory. At least it's not psychosocial care. But what is biomedical care? Is there any such thing for ME apart from symptomatic treatment for sleep, pain etc?
If they said biomedical research, that might make more sense.

I'm also worried about what kind of briefing about ME they will give their advocate, given that, as far as I know, AfME still haven't distanced themselves from PACE. And what specific aims would they expect her to achieve, I wonder.

Surely, if they really want to influence WHO, they should partner with other ME organisations round the world for this. Otherwise it's in danger of looking like AfME empire building/grandstanding. Didn't Sonya Chowdhury attend the International ME conference in the USA last year and try to make herself into the leader of some kind of international organisation, without any noticeable success?

 

I read this with a sinking heart.

Sometimes I wonder if they actually set out to downplay the condition.