@kags7.bsky.social
Just an old hippy at heart. Trying to still be a person despite long term #ME
Here mainly for research and advocacy
Here mainly for research and advocacy
"The myth that the community are just some rabid keyboard warriors having a go at those on high (as perpetuated by one chairman of a particular charity) is one that needs dismantling." More from @longcovidadvoc.bsky.social on their new online shop.
#pwME #PwLC #MECFS #LongCovid #MyalgicE
#pwME #PwLC #MECFS #LongCovid #MyalgicE
🗞️A bit more behind the scenes about our new shop & a mini delve into how art & design has been used in activism
🙏Huge thank you to those who have made an order, we've sold over 30 products already!
🔊audio available
⏳3 min read
www.longcovidadvoc.com/post/art-des...
🙏Huge thank you to those who have made an order, we've sold over 30 products already!
🔊audio available
⏳3 min read
www.longcovidadvoc.com/post/art-des...
November 23, 2024 at 12:36 PM
Reposted
#pwme Please sign this open letter. An MEA chairman is mocking & patronising pwme, worse, those with severe/very severe ME. What he said is unacceptable anywhere, worse in a ME charity publication. This will be seen by newly dx ppl. It's not only ignorant & dismissive, it's dangerous. #MEcfs
The full text of the column from the chairman of the MEA is here: docs.google.com/document/d/e...
It's condescending, scientifically wrong & undermines the key message of rest helps movement.
An open letter in response you can sign if you wish to is here: docs.google.com/forms/d/e/1F...
It's condescending, scientifically wrong & undermines the key message of rest helps movement.
An open letter in response you can sign if you wish to is here: docs.google.com/forms/d/e/1F...
November 18, 2024 at 12:48 PM
Reposted
🔗 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...
Reposted
#mecfs community Nicola Jeffery is on here now nicolajeffery.bsky.social
Nicola Jeffery (@nicolajeffery.bsky.social)
Disabled activist and writer for The Canary.
nicolajeffery.bsky.social
November 18, 2024 at 8:39 AM
#mecfs community Nicola Jeffery is on here now nicolajeffery.bsky.social
Reposted
Action for ME have chosen to leave X & the 13,000+ followers they have there without consulting #pwME
#pwME are dependent on social media & as the contact between #pwME & the APPG for #ME & the Parliamentary Champions for #ME this is counterproductive.
AfME should have a presence where #pwME are
#pwME are dependent on social media & as the contact between #pwME & the APPG for #ME & the Parliamentary Champions for #ME this is counterproductive.
AfME should have a presence where #pwME are
November 15, 2024 at 11:59 AM
Good morning. The lovely Penny is struggling to connect with the #MECFS community. She has very limited spoons, please say hello & give her a follow. You may recognise her from her profile in the other place. bsky.app/profile/theo...
November 14, 2024 at 10:39 AM
Reposted
Please sign and share:
📢New UK Government petition just out: "Introduce new air quality and PPE rules for health and social care settings". If you're a British citizen or UK resident it would be great if you could sign it, & even if you're not if you could share it. Thank you! 🙏 petition.parliament.uk/petitions/70...
Petition: Introduce new air quality and PPE rules for health and social care settings
We want the Government to set new rules on air quality and infection control in health and social care settings, to prevent and control airborne infections, with new ventilation and filtration require...
petition.parliament.uk
November 11, 2024 at 11:04 AM
Please sign and share: