Paula Knight 🎨✒️♿

An NHS hospital is starving a severe ME patient and has now stopped giving her fluids Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk

URGENT:

An NHS hospital is starving a severe ME patient & has now stopped giving her fluids. Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk. @h-sharland.bsky.social has the story
www.thecanary.co/uk/analysis/...

Please consider donating to Savannah's fundraiser so she can afford care and continue legal representation. She has v severe ME with feeding problems and is being treated appallingly in QEH hospital right now.

Please share! 🙏

Any questions, please read the fundraiser updates.

#MEcfs #Disability

Wow.
www.theguardian.com/politics/202...

A hand-drawn text: ‘New look!’. Under it A Quiet Storm cloud logo. And below the logo a text: ‘Our updated website is now live!’.

We have finally finished updating our online art gallery into a dark theme!

A Quiet Storm showcases art made by people who have experienced severe ME/CFS.

Our full statement is below.

www.aquietstorm.me

#MECFS #pwME #Art #OnlineArtGallery

A photo of a robin on a curved red brick wall top. Words: I took meow worms today but no one was interested in them. This was the result of another photography twitcher with sunflower seeds. I'm jealous of his lens. It's bigger than mine, but I suppose it's what you do with it that counts.

A robin photo from when I was able to go out with my modest telephoto lens (I was unable to hold anything bigger than that up). I can't believe this was 10 years ago.

#Nature #Robins #Photography

Endless Horizons Book Club | Join & Read on Fable Join Endless Horizons on Fable. Connect with readers, discuss books, and explore curated reading lists.

📚💙 A member of our book club on Fable has set up her own space, 'Endless Horizons' for teens living with disabilities to help build community and connection.

If you know a disabled teen who would be interested here is the link! 👇

Looking forward to non-fiction workshop with Rae Earl this morning with @ldnwriterscentre.bsky.social

I'm attending three writing events this week, and I'm completely bedridden.

It wouldn't be possible without online provision. Disabled writers and artists deserve inclusion.

#DisabledWriters

#writingtip #writingtips #writingcommunity #amwriting #writerscommunity

I might be past my best by then, but I do hope to make it.

It's great to have successes in creative work but don't pull the ladder up after you. It's good to share knowledge, other people's work and help others on their path. The world is better for art, writing and creativity.

#DisabledArtists #DisabledWriters
#Writing #ArtSky #Comics

The Sisters are great guests. Come in person this evening or watch the improved live stream on www.youtube.com/@panelborder...

Today (23 Feb) reps from Forward ME are meeting with the DHSC and NHS England to discuss progress on the development of a clinical care pathway for people with mild-moderate ME/CFS. However, crucially, the pathway fails to include people with severe ME. 1/3

TW: Very distressing content

Clip from Austrian TV report on Samuel, who developed severe ME/CFS following Covid and chose assisted suicide on his 22nd birthday. Includes a brief interview with him before his death. #MECFS #LongCovid

My writing software doesn't recognise the word 'mither'. How very dare it?
#AmWriting

Update on Savannah’s case in The Times. She has severe ME/CFS, has lost 30kg and eaten nothing since January 18.

Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die.

archive.ph/J3Xv3

In my experience I found that if you pull on the connecting bit it gets smaller instead of freeing up.

Thank you.

A four panel comic with a teal background. image is of struggling white skinned hands clasped by a cable tie and resulting injuries. ME is like a cable tie. The harder you fight it the tighter its grip

A metaphor for PEM.
New short comic about ME.

#Comics #MEcfs #Disability
#DisabledArtists #pwME
#MyalgicEncephalomyelitis #GraphicMedicine

Don't miss this on Tuesday eve ONLINE - Morag's book is so brilliant and necessary - a vital amendment to so much walking lit - an intersectional feminist history of walking as creative practice, radical act and resistance, with a focus on queer, disabled & working-class lives. #BookSky #WalkingLit

Politics and dementia: Why it’s not okay to diagnose from a distance In recent years, there has been increasing questioning of the fitness of senior politicians to hold office on the basis that they have dementia or are otherwise mentally or physically unwell. It’s par...

www.alzheimers.org.uk/blog/politic...

CW Edited clip from an ORF report on the death of Samuel by assisted suicide.

Highlights that many people don’t know about the illness, there are no effective treatments, there is a lack of care, services, financial aid and support for people with #MECFS in Austria.

That's great.

Hat Festival tho - nice indeed!

I'll save 19th June!

People looking at Myf Tristram's pictures

ROAD TRIP (well, rail trip)!

I've got a load of events set up around the launch of Noisy Valley and I'd love to see you at one of them. I'm listing them all in a newsletter to go out tomorrow, so do sign up for all the details on the where and when! mailchi.mp/3e30144be390...

Yesterday, we launched Brave New World? a ground-breaking report about the impact of Generative artificial intelligence (GenAI). This major new study has been published in partnership with other creator-led organisations. buff.ly/vIuLqfn

London hospital STILL starving severe ME patient, Savannah — bias medical approach to blame A South London hospital is still putting severe ME patient Savannah's life at risk and a clinician who psychologises ME might be why.

NEW 🚨 A South London hospital is still putting severe ME patient Savannah's life at risk and a clinician who psychologises ME might be why.

www.thecanary.co/uk/analysis/...

This also goes for lists of protected characteristics in diversity discourse that miss disability.

A tabby cat with its back to the viewer sits on scrubland grass surrounded by dying fern fronds, harmonising but not camouflaged

Other work by the Ladybird artists.
‘Cat among ferns’
Artist: CF Tunnicliffe

If someone is listing anti- all the isms apart from ableism, I'm unlikely to follow back. I'm disabled and fed up of the left eliding this. Intersectional everything here.

#Disability #Ableism