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

Correct me if I misunderstand, A4ME is then represented more than once on IAFME, via their own position and their membership of Forward ME, no?

If that is the case, A4ME should relinquish direct membership. Or, at a minimum, the MEA should join themselves.

Given profound concerns regarding the scientific and ethical probity/competence of A4ME, who at MEA should be flagged to review this thread?

A4ME PR statements post-PACE humiliation are actually practical examples of why they must be viewed with suspicion on an ongoing basis. I'll finish writing about that more practically once I can.

 

I tried flagging an issue with both Afme and MEA representatives. MEA said to e-mail someone. Afme could not be persuaded to respond. There seemed to be an unwillingness from both to respond here.

 

I wanted to point a condescendingly obvious point. I have no illusions about the practicalities of running charities as going concerns that function organisationally. But, I highlight this because there are those who would dismiss us on that basis, that we do not understand what is involved.

If I were A4ME, I would be hoping to shift perceptions in MEA on that basis. Assuming worst case assumptions about them, which their conduct does not seek to disprove, they will now be moving to some form of Plan B. Yes, that theory assume there are specific unwritten motives...

I will evnetuallky get to putting up that mai thatl I never get to finish to you all for opinions

 

Video now available


ETA: I've had neither time or energy to watch this yet.
ETA2: Link to view on Vimeo is

Code:

https://vimeo.com/314559301

 

Strange
Try it from their website
http s : // vimeo . com / 314559301

 

Starts for me (I still haven't watched it). I've edited my post above to give the URL, which Alvin has given above, in case watching it on the Vimeo site helps in the future.

 

Is it looking good organisation?

I read the blog which they seem to have instead of a website and it lost me when they said they would be advocating to WHO "over the next few years " or something similar. They also had a definition of advocacy that sounded like how AFME work here, just working with people I would like to see challenged. If you really believe in increased biomedical research funds, why not organise lobbying of those in charge of the purse strings in your own country.? The people you have had meetings with every three months for years who despite this think it's acceptable to spend a further two years dithering on MEGA funding whilst doing nothing to set up quick and effective general research funding call like other countries.

https://www.actionforme.org.uk/make-a-difference/take-action-now/international-advocacy-for-me/

"

 

Anyone know what happened to ESME?
European Society for ME.
http://www.esme-eu.com/esme/category28.html
http://www.esme-eu.com/home/experts-launch-think-tank-for-mystery-disease-article37-6.html

 

I think Esme is one of the judges on the great British Sewing Bee!

 

Action for ME and Sonya Chowdury, former AFME head, would seem to be principals, judging from the correspondence. Perhaps someone in UK can do a bit of due diligence. What is BACME? One reason to be in Switzerland is the UN agencies like WHO. A better one is to use funds on deposit in a Swiss Bank without the fuss and muss of traversing national borders. There are prominent BPS researchers who have earned money from a major Swiss insurance company. The elder would have earned megabucks. I mean mega SFrancs. The younger is only just getting started, but should be nicely ahead. This would be illegal for US citizens but not necessarily for citizens of the UK and Continental European nations. I am not informed about EU or UK tax law, except that the US taxes all its citizens no matter where they reside or earn, while the EU and UK are not quite so severe on expat income.
"

 

Years ago trial proved med personnel took ME seriously but CFS much less so. That was a real published peer-reviewed trial.

 

Not coincidence. AFME and Ms. Chowdury featured in literature.

 

Whoops. I meant to make it former and possibly still head. Good catch Trish.

 

Scientists, journalists and basically all professionals outside the clergy should not be allowed to "believe" anything in relation to their professions. Hypothesize, research, trial (not by unblinded uncontrolled self-report) and subject to review. Amen.

 

Merged thread

from IAFME Facebook page

anyone have any more info?

 

Not from me. I have connections/contact with a number of the various groups in the ME advocacy field but never had the opportunity, or saw the point, in trying to cultivate contact with IAFME.

 

I don’t know if AFME will cover this at their conference. Weren’t they the main founder and funder ?