Discussion in 'General ME/CFS News' started by Michiel Tack, Jan 21, 2019.
I saw this on the Facebook page of the International Alliance For ME (IAFME):
Thank you for posting that. I've sent off a request.
Thursday is busy as we have the UK parliamentary debate in the afternoon. I think this webinar is around 18:00 UK time though.
Is there a website for IAFME?
Is this group different from IACFSME?
Would you like to add this to the calendar, @Michiel Tack?
This might help in understanding who they are, link to MEpedia article
ETA: Correcting link.
ETA2: Correcting link again, as the forum software doesn't like the ending ".".
I tried to, but it didn't work. When I push the button "Submit", nothing happens.
I have added this to the calendar.
Link now fixed.
Did anyone watch this?
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.
I did and they plan to youtube it
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
That probably refers to the subject of this thread, https://s4me.info/threads/action-fo...l-treatments-for-m-e-position-statement.5532/
Video now available
ETA: I've had neither time or energy to watch this yet.
ETA2: Link to view on Vimeo is
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.
Separate names with a comma.