Whoa I did not know that about the MEAssociation
November 18, 2024 at 12:17 AM
Whoa I did not know that about the MEAssociation
I've been seeing supposed allies turn around & say that people with ME must exercise. Besides the dysautonomia person, there's a recent awful letter from the chairman of MEAssociation titled "Animals need to move". Explaining PENE & #SevereME clearly seems especially important these days.
November 18, 2024 at 12:15 AM
I've been seeing supposed allies turn around & say that people with ME must exercise. Besides the dysautonomia person, there's a recent awful letter from the chairman of MEAssociation titled "Animals need to move". Explaining PENE & #SevereME clearly seems especially important these days.
Wir danken @scheibenbogen.bsky.social und @renzpolster.bsky.social für ihre tolle Arbeit!
Danke Charité,
@dgmecfs.bsky.social
@oegmecfs.bsky.social
#SGME_CH
#MEAssociation für Unterstützung und Logos.
Auf dass möglichst viele Ärzt*innen den Stand der Wissenschaft kennen!
#MEAwarenessHour
4/4
Danke Charité,
@dgmecfs.bsky.social
@oegmecfs.bsky.social
#SGME_CH
#MEAssociation für Unterstützung und Logos.
Auf dass möglichst viele Ärzt*innen den Stand der Wissenschaft kennen!
#MEAwarenessHour
4/4
April 10, 2024 at 7:29 PM
Wir danken @scheibenbogen.bsky.social und @renzpolster.bsky.social für ihre tolle Arbeit!
Danke Charité,
@dgmecfs.bsky.social
@oegmecfs.bsky.social
#SGME_CH
#MEAssociation für Unterstützung und Logos.
Auf dass möglichst viele Ärzt*innen den Stand der Wissenschaft kennen!
#MEAwarenessHour
4/4
Danke Charité,
@dgmecfs.bsky.social
@oegmecfs.bsky.social
#SGME_CH
#MEAssociation für Unterstützung und Logos.
Auf dass möglichst viele Ärzt*innen den Stand der Wissenschaft kennen!
#MEAwarenessHour
4/4
Please share widely. We are really interested in the experiences of athletes with #ME and #Longcovid for masters level projects. Please support @NiamhLHeeran and @ElaKlaveness and all #physios to understand your experiences @LongCOVIDPhysio @long_covid @MEAssociation @MEActNetUK
A new international survey has been released exploring the experiences of athletes with ME / Long Covid (with PEM)
Please share widely - all info on our website here
www.physiosforme.com/athletessurvey
Please share widely - all info on our website here
www.physiosforme.com/athletessurvey
ME in Athletes Survey | Physiosforme
www.physiosforme.com
February 23, 2025 at 6:08 PM
Please share widely. We are really interested in the experiences of athletes with #ME and #Longcovid for masters level projects. Please support @NiamhLHeeran and @ElaKlaveness and all #physios to understand your experiences @LongCOVIDPhysio @long_covid @MEAssociation @MEActNetUK
I tweeted this on X earlier
#ME orgs, charities, advocates & allies
A huge number of #pwME & #LongCovid are decamping from X to Bl🦋e Sky
In order to remain connected & relevant to those who you represent, please ensure you have accounts there
@MEAssociation @actionforme @MEActNetUK ++
#MEcfs 🦋
#ME orgs, charities, advocates & allies
A huge number of #pwME & #LongCovid are decamping from X to Bl🦋e Sky
In order to remain connected & relevant to those who you represent, please ensure you have accounts there
@MEAssociation @actionforme @MEActNetUK ++
#MEcfs 🦋
November 11, 2024 at 1:42 PM
I tweeted this on X earlier
#ME orgs, charities, advocates & allies
A huge number of #pwME & #LongCovid are decamping from X to Bl🦋e Sky
In order to remain connected & relevant to those who you represent, please ensure you have accounts there
@MEAssociation @actionforme @MEActNetUK ++
#MEcfs 🦋
#ME orgs, charities, advocates & allies
A huge number of #pwME & #LongCovid are decamping from X to Bl🦋e Sky
In order to remain connected & relevant to those who you represent, please ensure you have accounts there
@MEAssociation @actionforme @MEActNetUK ++
#MEcfs 🦋
🔗 below to sign the letter asking for an apology & retraction of this comment
I do feel that given his incredibly ill informed harmful comment he's not suitable for the role of Chairman of the @MEAssociation & he should step down
There's too much at stake for #pwME
docs.google.com/document/d/1...
I do feel that given his incredibly ill informed harmful comment he's not suitable for the role of Chairman of the @MEAssociation & he should step down
There's too much at stake for #pwME
docs.google.com/document/d/1...
November 18, 2024 at 12:21 PM
🔗 below to sign the letter asking for an apology & retraction of this comment
I do feel that given his incredibly ill informed harmful comment he's not suitable for the role of Chairman of the @MEAssociation & he should step down
There's too much at stake for #pwME
docs.google.com/document/d/1...
I do feel that given his incredibly ill informed harmful comment he's not suitable for the role of Chairman of the @MEAssociation & he should step down
There's too much at stake for #pwME
docs.google.com/document/d/1...
The longer this goes on the more I (we?) question how pervasive this view is in the MEAssociation. Do the other board members and workers share his dismissive views on patients and that activities will cure us? How deeply is within the MEAssociation is this supported?
Classic non apology that is sorry you misunderstood. This is gaslighting, a bit of DARVO and questions out reading comprehension. It completely fails to address the patient belittling. An appalling statement, Neil Riley needs to be fired.
November 19, 2024 at 7:06 PM
The longer this goes on the more I (we?) question how pervasive this view is in the MEAssociation. Do the other board members and workers share his dismissive views on patients and that activities will cure us? How deeply is within the MEAssociation is this supported?
meassociation.org.uk
November 19, 2024 at 5:58 PM
Excellent from @georgemonbiot.bsky.social. Just about the best overview of the cruel reality faced by victims of #ME. @meassociation.org.uk #MEAssociation www.theguardian.com/commentisfre...,
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
www.theguardian.com
September 24, 2026 at 1:51 PM
Excellent from @georgemonbiot.bsky.social. Just about the best overview of the cruel reality faced by victims of #ME. @meassociation.org.uk #MEAssociation www.theguardian.com/commentisfre...,
Thread:
1/4 The AGM of the MEAssociation
is being held today. With the current interest in, and focus on, governance at the Charity, I requested remote access to the meeting, as an observer (I am not a member).
My request was denied on the basis of a "members only" attendance policy.
1/4 The AGM of the MEAssociation
is being held today. With the current interest in, and focus on, governance at the Charity, I requested remote access to the meeting, as an observer (I am not a member).
My request was denied on the basis of a "members only" attendance policy.
December 9, 2024 at 4:42 PM
Thread:
1/4 The AGM of the MEAssociation
is being held today. With the current interest in, and focus on, governance at the Charity, I requested remote access to the meeting, as an observer (I am not a member).
My request was denied on the basis of a "members only" attendance policy.
1/4 The AGM of the MEAssociation
is being held today. With the current interest in, and focus on, governance at the Charity, I requested remote access to the meeting, as an observer (I am not a member).
My request was denied on the basis of a "members only" attendance policy.
Yes, this is his personal story. His “truth.”
But I’d hope the chairman of a prominent ME advocacy group like
@MEAssociation
would understand the narratives surrounding #MECFS and how damaging that phrasing could be.
We’re fighting decades of psychologization here 🤦🏻♀️
But I’d hope the chairman of a prominent ME advocacy group like
@MEAssociation
would understand the narratives surrounding #MECFS and how damaging that phrasing could be.
We’re fighting decades of psychologization here 🤦🏻♀️
November 19, 2024 at 8:16 PM
Yes, this is his personal story. His “truth.”
But I’d hope the chairman of a prominent ME advocacy group like
@MEAssociation
would understand the narratives surrounding #MECFS and how damaging that phrasing could be.
We’re fighting decades of psychologization here 🤦🏻♀️
But I’d hope the chairman of a prominent ME advocacy group like
@MEAssociation
would understand the narratives surrounding #MECFS and how damaging that phrasing could be.
We’re fighting decades of psychologization here 🤦🏻♀️
The MEAssociation are asking for people’s priorities for the Delivery Plan over on their Facebook page. It would be good if as many of us as possible commented on this as it’s very important that everyone’s opinion is counted. It’s already a long thread but important that all are heard.
#ME #pwME
#ME #pwME
January 4, 2025 at 8:32 PM
The new album release for #SevereMEDay - 'In Limbo', by the late, great Kara Jane Spencer
meassociation.org.uk/2025/08/kara...
#InLimbo #karajane #MECFS #MyalgicEncephalomyelitis #SevereME #MEResearch #MEAssociation
#ramsayresearchfund #charityalbum
meassociation.org.uk/2025/08/kara...
#InLimbo #karajane #MECFS #MyalgicEncephalomyelitis #SevereME #MEResearch #MEAssociation
#ramsayresearchfund #charityalbum
Kara Jane's new album is out today - The ME Association
‘In Limbo' is the name of the new album released […]
meassociation.org.uk
August 8, 2025 at 6:19 AM
The new album release for #SevereMEDay - 'In Limbo', by the late, great Kara Jane Spencer
meassociation.org.uk/2025/08/kara...
#InLimbo #karajane #MECFS #MyalgicEncephalomyelitis #SevereME #MEResearch #MEAssociation
#ramsayresearchfund #charityalbum
meassociation.org.uk/2025/08/kara...
#InLimbo #karajane #MECFS #MyalgicEncephalomyelitis #SevereME #MEResearch #MEAssociation
#ramsayresearchfund #charityalbum
Highlights from Dr Charles Shepherd’s (@MEAssociation) interview with BBC Scotland on the new #MECFS delivery plan — clip covers what ME is, key symptoms, how many are affected, & why the figure is likely much higher, as many with #LongCovid meet the criteria/diagnosed with ME.
July 26, 2025 at 5:38 AM
Highlights from Dr Charles Shepherd’s (@MEAssociation) interview with BBC Scotland on the new #MECFS delivery plan — clip covers what ME is, key symptoms, how many are affected, & why the figure is likely much higher, as many with #LongCovid meet the criteria/diagnosed with ME.
In so many ways people can fall through gaps in provision; in primary and secondary care, in social care and in regard to benefits. It is so difficult to deal with this disease and to be your own advocate. #MECFS #MedSky #MEAssociation
If you have ME/CFS, save this clip for emergency situations to get a doctor informed on M.E. in less than a minute:
youtu.be/NRSGCcRl1dQ #pwME #MECFS
youtu.be/NRSGCcRl1dQ #pwME #MECFS
ME on BBC Breakfast with Sarah Boothby and Dr Binita Kane
YouTube video by Long Covid Advocacy
youtu.be
November 24, 2024 at 2:45 AM
In so many ways people can fall through gaps in provision; in primary and secondary care, in social care and in regard to benefits. It is so difficult to deal with this disease and to be your own advocate. #MECFS #MedSky #MEAssociation
2/2 Did you know you can see the MEA's latest Facebook and Instagram posts without needing a social media account, via the live Social Media Wall on our website:
meassociation.org.uk/smww
#MECFS #LongCovid #MEAssociation
meassociation.org.uk/smww
#MECFS #LongCovid #MEAssociation
September 18, 2026 at 12:51 PM
2/2 Did you know you can see the MEA's latest Facebook and Instagram posts without needing a social media account, via the live Social Media Wall on our website:
meassociation.org.uk/smww
#MECFS #LongCovid #MEAssociation
meassociation.org.uk/smww
#MECFS #LongCovid #MEAssociation
@meassociation.bsky.social epic failure to listen to the community continues. 1k people signed a letter demanding accountability for publishing insulting misinformation editorial from Chair. They call this “The few baying for blood”
MEA can’t help but show contempt for the ME community.
#pwME
MEA can’t help but show contempt for the ME community.
#pwME
November 26, 2024 at 6:08 AM
@meassociation.bsky.social epic failure to listen to the community continues. 1k people signed a letter demanding accountability for publishing insulting misinformation editorial from Chair. They call this “The few baying for blood”
MEA can’t help but show contempt for the ME community.
#pwME
MEA can’t help but show contempt for the ME community.
#pwME
Along with another #pwME I have requested the MEAssociation adopt charity guidelines and cap trustee tenureship at 9 years maximum.
Please read and share. AGM is on 9 Dec.
docs.google.com/document/d/1...
Please read and share. AGM is on 9 Dec.
docs.google.com/document/d/1...
The ME Association AGM Motion - Dec 2024
The ME Association background to Motion: For fifty years The ME Association has been a consistent voice for the thousands of people affected by ME, working to advocate and inform. The organisation ha...
docs.google.com
November 15, 2024 at 9:43 AM
Along with another #pwME I have requested the MEAssociation adopt charity guidelines and cap trustee tenureship at 9 years maximum.
Please read and share. AGM is on 9 Dec.
docs.google.com/document/d/1...
Please read and share. AGM is on 9 Dec.
docs.google.com/document/d/1...
From @meassociation.bsky.social
@irishmecfsassoc.bsky.social has been working hard to organise approx. 3600 envelopes with a wide range of info on #MECFS in preparation to be sent to Irish GPs. The information pack includes the ME Association's infographic ME/CFS Guide for Primary Care.
#CFS
1/
@irishmecfsassoc.bsky.social has been working hard to organise approx. 3600 envelopes with a wide range of info on #MECFS in preparation to be sent to Irish GPs. The information pack includes the ME Association's infographic ME/CFS Guide for Primary Care.
#CFS
1/
March 25, 2025 at 1:30 PM
From @meassociation.bsky.social
@irishmecfsassoc.bsky.social has been working hard to organise approx. 3600 envelopes with a wide range of info on #MECFS in preparation to be sent to Irish GPs. The information pack includes the ME Association's infographic ME/CFS Guide for Primary Care.
#CFS
1/
@irishmecfsassoc.bsky.social has been working hard to organise approx. 3600 envelopes with a wide range of info on #MECFS in preparation to be sent to Irish GPs. The information pack includes the ME Association's infographic ME/CFS Guide for Primary Care.
#CFS
1/
"The article caused ME advocacy groups & campaigns including @longcovidadvoc.bsky.social
& #ThereforME to suspend their support of the #MEAssociation. @alexisme.bsky.social
a Dr with #ME also penned a retraction letter that more than 1000 people have signed"
thesicktimes.org/2024/11/22/a...
& #ThereforME to suspend their support of the #MEAssociation. @alexisme.bsky.social
a Dr with #ME also penned a retraction letter that more than 1000 people have signed"
thesicktimes.org/2024/11/22/a...
Advocacy groups suspend ties with U.K. charity The ME Association over chairman’s op-ed - The Sick Times
Earlier this month, the chairman of the United Kingdom charity the ME Association, Neil Riley, published a controversial op-ed in the charity’s magazine arguing that many people with Myalgic Encephalo...
thesicktimes.org
November 23, 2024 at 9:31 AM
"The article caused ME advocacy groups & campaigns including @longcovidadvoc.bsky.social
& #ThereforME to suspend their support of the #MEAssociation. @alexisme.bsky.social
a Dr with #ME also penned a retraction letter that more than 1000 people have signed"
thesicktimes.org/2024/11/22/a...
& #ThereforME to suspend their support of the #MEAssociation. @alexisme.bsky.social
a Dr with #ME also penned a retraction letter that more than 1000 people have signed"
thesicktimes.org/2024/11/22/a...
The #MEAssociation reprint of this 2005 Dr Melvin Ramsay book is now available as an e-book at Kindle Direct Publishing, priced at £5. The ebook was added to the KDP list just last Friday. Please find it here:
www.amazon.co.uk/Myalgic-Ence...
#MelvinRamsay #mecfs #RoyalFreedisease
www.amazon.co.uk/Myalgic-Ence...
#MelvinRamsay #mecfs #RoyalFreedisease
August 3, 2025 at 9:22 AM
The #MEAssociation reprint of this 2005 Dr Melvin Ramsay book is now available as an e-book at Kindle Direct Publishing, priced at £5. The ebook was added to the KDP list just last Friday. Please find it here:
www.amazon.co.uk/Myalgic-Ence...
#MelvinRamsay #mecfs #RoyalFreedisease
www.amazon.co.uk/Myalgic-Ence...
#MelvinRamsay #mecfs #RoyalFreedisease
As holiday fundraising season rolls round it’s good to know there’s no need to donate to the @MEAssociation
By the time you’re finished training for that walkathon you’ll be cured, right!??
By the time you’re finished training for that walkathon you’ll be cured, right!??
We are sad to announce that #ThereForME has suspended our collaboration with the ME Association.
We feel that concerns from the community must be heard. The door remains open to continue our collaboration once action is taken and concerns addressed.
More here 👇
We feel that concerns from the community must be heard. The door remains open to continue our collaboration once action is taken and concerns addressed.
More here 👇
November 19, 2024 at 7:37 AM
As holiday fundraising season rolls round it’s good to know there’s no need to donate to the @MEAssociation
By the time you’re finished training for that walkathon you’ll be cured, right!??
By the time you’re finished training for that walkathon you’ll be cured, right!??