Another year has passed and another ME Awareness Day/Week/Month is needed - revisiting a past series of events Moving Mountains ran with @meactionuk.bsky.social - short readings from some of the contributors will be linked below: #BookSky #MillionsMissing www.youtube.com/watch?v=LiBN...

A link with all 8 videos - featuring Louisa Adjoa Parker, @nicwilson.bsky.social @jaxxi.bsky.social @felinecharpentier.bsky.social @alecfinlay.bsky.social and me #MEAwarenessDay In celebration of the brilliant writers & creatives who live with ME/CFS, Long Covid & many other poorly treated illness.

Government announces £4.75 million funding for Sequence ME research project Building on the findings from DecodeME, the new SequenceME study should provide a deeper understanding of the underlying disease process.    Find out more: https://meassociation.org.uk/xa0z   #pwME #MEAwareness #MECFS

M.E. Kills Wow, this work is incredible!! I haven't been able to read everything yet, but it's already an emotional roller-coaster. Make sure to check out the beautiful, emotional & intimate art works!! www.aquietstorm.me/myalgic-ence... #pwme #myalgicE #millionsmissing #severeME #art2cureME

The The Neurological Alliance of Scotland has asked us to share a survey being undertaken by The Migraine Trust to find out about people's experience of accessing migraine treatments. The survey should take approximately 20 minutes to complete.

𝗡𝗼 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁, 𝗻𝗼 𝘄𝗮𝗿𝗱, 𝗻𝗼 𝗡𝗛𝗦 𝘀𝗲𝗿𝘃𝗶𝗰𝗲. 𝗧𝗵𝗲 𝗺𝗼𝘀𝘁 𝘀𝗲𝘃𝗲𝗿𝗲𝗹𝘆 𝗶𝗹𝗹 𝗽𝗲𝗼𝗽𝗹𝗲 𝘄𝗶𝘁𝗵 𝗠𝗘 𝗵𝗮𝘃𝗲 𝗻𝗼𝘄𝗵𝗲𝗿𝗲 𝘁𝗼 𝗴𝗼. #MillionsMissing 2026 read our article & our templates to contact your MP shorturl.at/uSfz6#MillionsMissing #VerySevereME

We are supporting @longcovidadvoc.com on #MEAwarenessDay on behalf of the #MillionsMissing & have signed their letter to @rcpsych.bsky.social You can add your signature using the link in the post below.

✉️ Anyone is welcome to sign the open letter. The form is open for 2 weeks & then will be sent to President-Elect Prof Subodh Dave on May 26th. With collective effort we hope for change from the Royal College that will benefit all people with ME & Long Covid. forms.gle/UCNpAs2d43yd...

🩵On #MEAwarenessDay we are sending an open letter to @rcpsych.bsky.social calling for alignment with current evidence. Supported by 20 organisations. +35 advocates, clinicians & academics! In democratic spirit we are offering a public sign-on opportunity 🔗👇️ #RCPsychIC #Garner

A link with all 8 videos - featuring Louisa Adjoa Parker, @nicwilson.bsky.social @jaxxi.bsky.social @felinecharpentier.bsky.social @alecfinlay.bsky.social and me #MEAwarenessDay In celebration of the brilliant writers & creatives who live with ME/CFS, Long Covid & many other poorly treated illness.

Another year has passed and another ME Awareness Day/Week/Month is needed - revisiting a past series of events Moving Mountains ran with @meactionuk.bsky.social - short readings from some of the contributors will be linked below: #BookSky #MillionsMissing www.youtube.com/watch?v=LiBN...

‘Research by the Joseph Rowntree Foundation published last year showed that the proportion of the population living in deep poverty has increased from 33 per cent in the mid-1990s to 47 per cent in the early 2020s.’ @richardhywelking.bsky.social on Labour in Wales. www.lrb.co.uk/the-paper/v4...

Wes Streeting wants new laws to force your GP to share your medical records. The bill was not in Labour's Manifesto and Palantir has explicitly said, under a new Government, it would be happy to use medical data for other purposes. Be afraid.

youtu.be/ohHdYWngR-g The 2026 trailer is here for Blue Sunday - The Online Concert for M.E. #pwME #MyalgicEncephalomyelitis

Huge congratulations to our WIMEL group on the publication of their incredible book. What is Myalgic Encephalomyelitis Like? Patient & Caregiver Perspectives The book is now available to purchase via Amazon.

Dancing Shadows: connecting with nature through chronic illness, published last month in @tgomagazine.bsky.social, can now be read online if you didn't catch the print version (backdated editions can also be ordered): #NatureWriting #MovingMountains www.thegreatoutdoorsmag.com/long-reads/c...

Dancing Shadows: connecting with nature through chronic illness, published last month in @tgomagazine.bsky.social, can now be read online if you didn't catch the print version (backdated editions can also be ordered): #NatureWriting #MovingMountains www.thegreatoutdoorsmag.com/long-reads/c...

walk through the underworld

Portrait of a PhD student who has just passed the second formal review of her PhD @centreplacewriting.bsky.social @dcahf-met.bsky.social - (big coat & boots are back out) with a celebratory coffee #phdstudent

London folks... Come to this! London walking festival conference day, 15th May, with me, @thelrm.bsky.social Saira Niazi and many more www.ticketsource.com/active-trave... 🚶‍♀️🏙️👨‍🦽

Today is the last day of #LongCovidAwarenessMonth. Four years ago, after a mild infection, I became one of the 400 million people worldwide who live with Long COVID. #LongCOVID is NOT RARE and there is NO CURE for it. Until there is, everyone remains at risk of developing it. Why does no one care?

The new Writing School Summer Festival has been announced! Open to all (& free for current English/creative writing students at MMU) 4 days of writing events 15–19 June from @manmetuni.bsky.social School of English, 2 days online & 2 days in person. mmu.estore.flywire.com/products/202...

here's the "module 2" report of the inquiry

This week over 100,000 ALCS members will receive their share of £34m. Let's celebrate the value of human creativity, something that isn't going anywhere 💡📖🌳

ICYMI: Around 10,000 authors have come together to publish Don’t Steal This Book, an empty book protesting the government’s proposed "commercial research exception" to copyright law 👇 #BookSky

#Chronicillness #invisibleillness #mecfs #ME/CFS #writing #Chronicpain

The House of Lords Digital & Communications Committee just published their report on AI, copyright & the creative industries, and their conclusions could not be clearer. 🧵 1/5

Morolake Dairo & Sharon Nunoo feature in Dressing Through Pandemics: a special issue launch for Intellect @intellectbooks.bsky.social - how clothing & dress became central technologies of care, identity, politics & resilience during a period of global disruption. www.eventbrite.co.uk/e/dressing-t...

Speakers include Christopher Armstrong, Chris Ponting @cgatist.bsky.social , Oystein Fluge, David Putrino @putrinolab.bsky.social , Carmen Scheibenbogen @scheibenbogen.bsky.social , and many other ME/CFS experts. #MEcfs #LongCovid

First time I've seen the paperback of #MovingMountains in the wild! 😁 @louisekenward.bsky.social uk.bookshop.org/p/books/movi...

Online poetry workshops with Helen Mort? Yes please! Poems that make things happen. One off or book the whole series - 1 hour sessions of creativity. @helenmort.bsky.social www.eventbrite.co.uk/e/poems-that...

Last call for entries @anthonyburgess.bsky.social Prize for Arts Journalism. www.anthonyburgess.org/observeranth...

As poster says, ignore the seemingly homophobic heading, this is a good read, particularly on her disability and challenges of access to public spaces. I still think she was foolish, voting Tory at one point, but her convictions seem generally sound.

About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS... 🧵 1/n

I've updates my website with details of my TWO books - yes that's TWO books - out this year: 1. My 3rd poetry collection #EmergencyDream out with @serenbooks.bsky.social March 16th 2. #SwimmingTheSeasons: A freshwater Almanac, out with @saraband-books.bsky.social May 7th #BookSky #BookNews

👀 well this is good news!

The NHS is under pressure to adopt Palantir software. Palantir’s founder openly despises the NHS. You can push back – use our tool to see if your local trust is using the software, then send an email to say no to Palantir https://goodlaw.social/658abc

Huge thanks to all the US indie booksellers who've taken #TheCompanyOfOwls to heart and to their shelves, meaning it's squeezed into the @lithub.com.web.brid.gy Indie Top 40 pre official pub date. My 1st time on a bestseller list other our own shop's. As a writer and bookseller it means so much.

I also listened to a coastal themed essay by @louisekenward.bsky.social on BBC Sounds. Yes please, to have art accessible like this so I can enjoy it from home or wherever I might be ✨️ www.bbc.co.uk/sounds/play/...

This in person (UK) and online! A reading and discussion of Annah, Infinite, an experimental work of creative non-fiction that challenges #ArtHistory, confronts colonial #ableism, and reclaims a stolen spirit… the young girl in Annah la Javanaise (1893-94), Gauguin’s famous painting. #Lit #ArtSky

And a great post from @chronicliving123.bsky.social I think I missed at the end of last year - an update on the BPS guidelines for psychologists working with #pwME - essential work that is being co-produced w @actionforme.bsky.social & @meassociation.org.uk chroniclivingtherapy.com/bps-guidelin...

What a lovely list to be a part of, thank you Tom! #BookSky #CreativitySky

Wild Women Writers. We will be talking about portals, edgelands, peatbogs & other marginal places. Here's the link for tickets: www.eventbrite.co.uk/e/wild-women...

And a great post from @chronicliving123.bsky.social I think I missed at the end of last year - an update on the BPS guidelines for psychologists working with #pwME - essential work that is being co-produced w @actionforme.bsky.social & @meassociation.org.uk chroniclivingtherapy.com/bps-guidelin...

2/ - Jeremy Jeffs, Photography project @jeremy-jeffs.bsky.social - ‘I would be there if I could’ – Alison Larkman’s Mirrorbox project - Moving Mountains, edited by @louisekenward.bsky.social - Crafting a Path Through Illness – by @germainehypher.bsky.social #chroniclife #PwME #mirrorbox #CFS

What a lovely list to be a part of, thank you Tom! #BookSky #CreativitySky

Writers w. #disabilities & chronic #illnesses explore perspectives on #nature & #environment in a unique anthology, “Moving Mountains.” Editor @louisekenward.bsky.social discusses the recent volume in a new #SEJournalBookShelf Q&A: www.sej.org/publications... @sejorg.bsky.social

While compelled to live at Netherne Hospital for thirty years, Gwyneth Rowlands created many hundreds of work on flints & other found objects retrieved from the surrounding fields. Believing she had no imagination or aptitude for art, she was initially reluctant to attend the art therapy studio