AfME Board of Trustees statement on CBT, GET and PACE - 16th May 2017

Molly98

Senior Member
Messages
576
Likes
4,520
I think comments and 'likes' expressed here need to be replicated on the AfME site.

They will then reach a group of people who may not access this site and the views of a far wider range of people will be seen.
I have put my comment on their facebook, I fully expect it will be removed within minutes. They must have to employ agency staff to keep removing the many "negative" comments.
 

user9876

Senior Member
Messages
4,556
Likes
18,068
What AFME failed to mention conveniently about PACE trial is that they supported the PACE trial in 2005.

http://web.archive.org/web/20030804230351/http://www.afme.org.uk/news/pace-q&a.shtml

We all know the answer to the question below

http://forums.phoenixrising.me/index.php?threads/afme-and-pace-trial.42801/#post-692577
Even with having supported the pace trial this issue is about ensuring that the results are fully reported in an open and honest manner. The recovery result that they published is simply misleading and needs to be retracted. We then need the other secondary outcomes of the trial to be published and more generally the data to be available.

These calls are not, to my mind, controversial.
 

dangermouse

Senior Member
Messages
430
Likes
2,258
What AFME failed to mention conveniently about PACE trial is that they supported the PACE trial in 2005.

http://web.archive.org/web/20030804230351/http://www.afme.org.uk/news/pace-q&a.shtml

We all know the answer to the question below

http://forums.phoenixrising.me/index.php?threads/afme-and-pace-trial.42801/#post-692577
I wasn't aware of the level of AFME involvement in PACE trial. Have they ever apologised and explained themselves to the ME community? I want even less to do with them. It appears the majority of the CMRC is wholly inappropriate.
 

Binkie4

Senior Member
Messages
644
Likes
2,874
AfME comments site is behaving strangely. How surprising.

The ' likes' by each comment need refreshing manually. There are many likes not being recorded.

If you are on that site, please press the number of likes for a comment and the number may jump. ( you don't need to ' like' it personally.

I think the page needs to be as accurate as possible.
 

Yogi

Senior Member
Messages
1,132
Likes
6,879
Check out their in-house pharmacist (ironic as there are no drugs for ME). She is their mouthpiece on social media.

https://twitter.com/emilybeardall1?lang=en

Wesel words from her as usual. Saying Tuller and Racaniello manipulated the situation to result in anger at AFME.

Again deflecting the blame towards patients.

She talks about "As a community we'd be stronger together." However it is AFME who are dividing the community as always.

She also doesn't talk about Esther Crawley. Strange they are very silent about Crawley now.
We need to keep raising the Crawley issue with them.

She says 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.
AFME are condoning and fuelling discrimination, disbelief and injustice of people with ME in their actions (although I accept in their words they claim to do the opposite)


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 people with ME 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 people can't recognise the work the charity does and get behind it. As a community we'd be stronger together. All this venom 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. 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.
Just now · Edited
 
Last edited:

Molly98

Senior Member
Messages
576
Likes
4,520
Check out their in-house pharmacist (ironic as there are no drugs for ME). She is their mouthpiece on social media.

https://twitter.com/emilybeardall1?lang=en

Wesel words from her as usual. Saying Tuller and Racaniello manipulated the situation to result in anger at AFME.

Again deflecting the blame towards patients.

She talks about "As a community we'd be stronger together." However it is AFME who are dividing the community as always.

She also doesn't talk about Esther Crawley. Strange they are very silent about Crawley now.
We need to keep raising the Crawley issue with them.

She says 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.
AFME are condoning and fuelling discrimination, disbelief and injustice of people with ME in their actions (although I accept in their words they claim to do the opposite)
I have just responded to her comments on facebook it would be good if others could respond/ comment or like

https://www.facebook.com/actionforme/?fref=nf
 

Molly98

Senior Member
Messages
576
Likes
4,520
Can you take a copy of what you said and post here so we can see if they delete it.
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.


· Reply · 10 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.
 

MEMum

Senior Member
Messages
440
Likes
2,251
I find it very hard to believe that they were not asked to sign the letter????
Surely someone knows/can remember more about this.
 

Yogi

Senior Member
Messages
1,132
Likes
6,879
I find it very hard to believe that they were not asked to sign the letter????
Surely someone knows/can remember more about this.
They would have gone off and told the PACE authors and Crawley who AFME are in bed with and tried to stop other scientists signing and sabotage the effort. That is just an excuse. A lot of charities supported after the initial scientists signed. They were given 2 months to sign along with others- no excuse. Tuller knows AFME are corrupt. Good on him.
 

Yogi

Senior Member
Messages
1,132
Likes
6,879
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
 

user9876

Senior Member
Messages
4,556
Likes
18,068
I find it very hard to believe that they were not asked to sign the letter????
Surely someone knows/can remember more about this.
I doubt if they were asked to sign initially (given there opinions and support for PACE) but there was a second lot of signatures added quite soon afterwards and AfME initially dithered saying the board needed to decide and then obviously issued todays statement saying they won't sign.
 

SilverbladeTE

Senior Member
Messages
3,043
Likes
3,743
Location
Somewhere near Glasgow, Scotland
AfME was an outright con for donkeys years, it's trustees were Establishment goons put in those positions to control and silence any change
That IS how the British Elite twist things to their own benefits, and make loads a money out of holding numerous charity or committee positions

Now they have had to change a bit because their position was untenable, and they don't want to go to jail as they damn well should, so changes have made in leadership to save their arses
But they still are establishment goons
 

Large Donner

Senior Member
Messages
866
Likes
3,847
and Peter White who AFME are funding.
Oh ye apart from him too, but apart from all of that and the fact that they supported the PACE trial, still refuse to address the issues with CBT/GET, still refuse to sign the current letters of concerns and still refuse to demand PACE is retracted, apart from the fact that they sabotaged the recent Scottish Parliamentary meetings, apart from all of that they are just fine.
 

Yogi

Senior Member
Messages
1,132
Likes
6,879
Check out how much money Sonya Chowdhury and Emily Beardall are gathering together from unsuspecting and innocent donators. I believe this is under false pretences as they are not working for people with ME but against pwME as seen here and instead for various fatigue/tiredness problems and for the PACE researchers (DWP and insurers) and Esther Crawley.

https://www.justgiving.com/fundraising/sonya-chowdhury

That justgiving page should be shut down. It is so unethical.
 
Last edited: