1 ·
12 mins
Emily Beardall The charity weren't even made aware that the letter existed let alone asked to sign it, so they couldn't. The first they knew was after the open letter was published, so how could they have signed it? It's worth considering the motives behind excluding AfME. This resulting anger towards the charity for not signing was totally manipulated, in my opinion. It turns out the letter has made no difference anyway, if you read the whole statement. What does make a difference is all the work AfME does. I wish the people who endlessly criticise the charity would give the charity a chance. The people you're angry with have long left the charity, so it's got nothing to do with the current AfME. It's such a shame some people can't recognise the work the charity does and get behind it. As a community we'd be stronger together. All this venom from some against the charity detracts from the issues which Action for ME are addressing, such as healthcare professionals' education about our illness, which I'm involved with, as volunteer pharmacist. We're getting somewhere. I wouldn't have volunteered with the charity for 2 years and continued for that length of time if there was any slight hint of my colleagues believing the illness to be psychological, believe me. Remember that staff and volunteers of the charity either have ME themselves or have loved ones that do. I'll be continuing to work with the charity and they have my full support in fighting the discrimination, disbelief and injustice we face within healthcare.
19 mins ·
Edited
Molly Morriss What was so difficult for them to sign the letter Emily? what was the conflict of interest holding them back because no other ME charity seem to have one. Many others were not initially asked but added their names and support to it.
2 ·
18 mins
Molly Morriss The inaction speaks volumes. Do they not realise that such actions or in actions make it very difficult for patients to trust them? they may do some good work but it is the other ME charities that without deliberation have signed the letter to fight for the rights and protection of ME patients, They have clearly shown they are with us and fighting for us, AFME have not, they are giving mixed signals and I for one don't trust that.
2 ·
13 mins
Andy Devereux-Cooke "The charity weren't even made aware that the letter existed let alone asked to sign it, so they couldn't.". Sorry, that's a poor excuse. They were made aware of it within the week it was published, both by myself and others. AfME then decided to delay as long as possible so that a suitable (in their eyes) reason not to presented itself. There was nothing stopping them signing it and there still is nothing stopping them, other than their reluctance to get off the fence.
1 ·
8 mins
Emily Beardall After the letter had been published.
It's a set-up. What's the point in quibbling about something that's been and gone that didn't work. I'd rather get on with my projects to educate generalist health professionals, and they're keen to learn. I've made my position clear, you won't change my mind because I know my colleagues and their stance, whether you believe them or not I'll be continuing what I do.
Just now ·
Edited