United Kingdom: Action for ME (AfME) news

I closed my Xitter account a few months ago. I can understand why people are objecting I’m just an individual not an organisation so a lot simpler choice. In practice I would have given probably 3 months notice and got on Bluesky before making the announcement but I don’t disagree in principle with what they’re doing.

I presume that as I was many Xitter followers were also following on Facebook and or other platforms.
 
I haven't followed what sort of interactions on Twitter they say have been spreading misinformation about them and creating a lot of work, so I can't comment on that. Surely those people if they want to continue to be vocally critical of AfME will simply follow AfME to Bluesky or TikTok anyway.

I support AfME on wanting to leave Twitter on ethical grounds.

I do think there is a problem with lots of ME organisations not listening to experienced pwME enough. I suspect they gather to their membership people relatively new to ME/CFS and the more uncritical people, as I was for many years. I was just glad to have organisations like the MEA that produced good materials. I've never joined AfME as I thought their materials were not good back then.

I would like ME organisations to join this forum and discuss with our members too. I think our more critical and scientific approach has a lot to offer.
 
Trish said:
I would like ME organisations to join this forum and discuss with our members too. I think our more critical and scientific approach has a lot to offer.
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It baffles me that there isn't more interaction.

We can be a tough crowd, but unlike some people on Xitter, we take responsibility for what we write. We don't just post provocative comments and then vanish, or try to organise pile-ons.

Anyway, holding organisations to account makes them better at what they do, even if it can be challenging at the time.
 
Kitty said:
It baffles me that there isn't more interaction.

We can be a tough crowd, but unlike some people on Xitter, we take responsibility for what we write. We don't just post provocative comments and then vanish, or try to organise pile-ons.

Anyway, holding organisations to account makes them better at what they do, even if it can be challenging at the time.
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Agreed, and sadly both MEA and AfME, and of course (AYME...subsumed by AfME), have a shakey track record and history some two decades ago,
Chris C, Val H, MJW.........

CC AfME misguided steer legacy and consorting with the devils in 2004 and 2005 is still being unpicked today.

And STILL the 'FOM' Report published prior to NICE, is still on the Web AND is being accessed and referenced by Foundation Trusts Occupational Health Departments like mine .....
Can S4ME assist with getting it removed please?
It's dangerous left with our new Government's drive to rehabilitate back into work......
 

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Suffolkres said:
Agreed, and sadly both MEA and AfME, and of course (AYME...subsumed by AfME), have a shakey track record and history some two decades ago,
Chris C, Val H, MJW.........

CC AfME misguided steer legacy and consorting with the devils in 2004 and 2005 is still being unpicked today.

And STILL the 'FOM' Report published prior to NICE, is still on the Web AND is being accessed and referenced by Foundation Trusts Occupational Health Departments like mine .....
Can S4ME assist with getting it removed please?
It's dangerous left with our new Government's drive to rehabilitate back into work......
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Dr Mada instrumental in publishing above reports in 2006.
https://www.rcpi.ie/News/former-med...ulty-of-occupational-medicines-smiley-lecture
 
Suffolkres said:
Agreed, and sadly both MEA and AfME, and of course (AYME...subsumed by AfME), have a shakey track record and history some two decades ago,
Chris C, Val H, MJW.........

CC AfME misguided steer legacy and consorting with the devils in 2004 and 2005 is still being unpicked today.

And STILL the 'FOM' Report published prior to NICE, is still on the Web AND is being accessed and referenced by Foundation Trusts Occupational Health Departments like mine .....
Can S4ME assist with getting it removed please?
It's dangerous left with our new Government's drive to rehabilitate back into work......
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As AfME were instrumental in this publication, AfME should concede that the review date is now a tad overdue, 2011...!

So, this report previously endorsed and involving AfME, is contrary to and in defiance of the reviewed NICE Guidelines of 2021...
It is dangerous.

Both AfME MEA and any future APPG should deal with it.
 
Suffolkres said:
And STILL the 'FOM' Report published prior to NICE, is still on the Web AND is being accessed and referenced by Foundation Trusts Occupational Health Departments like mine .....
Can S4ME assist with getting it removed please?
Click to expand...
S4ME is its members. We don't have staff who can take on things like this. If you or anyone want to work on it by all means do.
 
I understand...
I have tried for 19 years...
to get Forward ME and former APPG to take some actions ....
Ironically, all those years ago 2005,.....
it was only MEA and Neil Ridley and Tom Kindlon who saw the potential for real damage.
Everyone else was focused on Emerging 2007 NICE.
 
Trish said:
S4ME is its members. We don't have staff who can take on things like this. If you or anyone want to work on it by all means do.
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Trish, bearing in mind the thread where Alan Carson has popped up, ....- rebuttal of NICE 2021,-
Clinical effectiveness of an online group physical & mental health rehab programme for post-covid-19 condition REGAIN study, 2024, McGregor+
I might ask David T to have a look at this legacy issue of FOM, NHS Health at Work. Madan, White, Sharpe AfME et all ?
 
Trish said:
I haven't followed what sort of interactions on Twitter they say have been spreading misinformation about them and creating a lot of work, so I can't comment on that. Surely those people if they want to continue to be vocally critical of AfME will simply follow AfME to Bluesky or TikTok anyway.
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I’m not sure this is who they are referring too. But the Long COVID Action Project people, who are big on twitter, (Believe Long COVID is a persistent HIV type infection, and that ME has nothing to do with it, some of them believe ME is made up and “stealing the thunder” fron Long COVID)

Anyways, I’ve seen them create campaigns and pile ons against what they call “Legacy ME organisations”, Solve ME, Action for ME etc.
 
Yann04 said:
I’m not sure this is who they are referring too. But the Long COVID Action Project people, who are big on twitter, (Believe Long COVID is a persistent HIV type infection, and that ME has nothing to do with it, some of them believe ME is made up and “stealing the thunder” fron Long COVID)

Anyways, I’ve seen them create campaigns and pile ons against what they call “Legacy ME organisations”, Solve ME, Action for ME etc.
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LCAP are already on Bluesky:
https://bsky.app/profile/lcap.bsky.social
My point was that leaving Twitter doesn't mean the attacks from such groups will stop. Though on Bluesky you have more power to block. I would think if the start the same attacks on Bluesky a lot of people will block them.
 
Trish said:
LCAP are already on Bluesky:
https://bsky.app/profile/lcap.bsky.social
My point was that leaving Twitter doesn't mean the attacks from such groups will stop. Though on Bluesky you have more power to block. I would think if the start the same attacks on Bluesky a lot of people will block them.
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Yeah. It was never their official account, but some of their loudest voices who organised the attacks.

Anyhow, I’m pretty sure the death threats some of their supporters made would get them swiftly kicked off bluesky, which is a plus to twitter.
 
SequenceME: first of a kind genetic study
December 16, 2024

A groundbreaking partnership has launched today.

The partners are working together to secure funding for a study which will analyse the entire genetic code of up to 17,000 people with Myalgic Encephalomyelitis (ME) in a bid to uncover the genetic causes of the illness.

SequenceME will bring together experts from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME, to uncover the root causes of ME and to determine whether ME is one illness, or an umbrella condition encapsulating multiple diseases, such as long Covid and other chronic conditions.

(continued at) https://www.actionforme.org.uk/news/sequenceme/

Created a thread for this.
 
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Nightsong said:
SequenceME: first of a kind genetic study
December 16, 2024

A groundbreaking partnership has launched today.

The partners are working together to secure funding for a study which will analyse the entire genetic code of up to 17,000 people with Myalgic Encephalomyelitis (ME) in a bid to uncover the genetic causes of the illness.
Click to expand...

I really hope this gets funding asap.
 
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