I HATE how little faith gastroenterologists/dieticians have in the value of life for #pwME. Who said they should decide who lives or dies? @theandrewgwynne.bsky.social (being the only other person who actually knows what I'm referring to, apart from a former senior civil servant who presided 1/2

🥳 Well done Carolyn 👏

Proposals to Department of Health and Social Care forward-me.co.uk/wp-content/u...

Forward ME has published proposals for urgent improvements to the care of people with very severe #MECFS. It highlights two Prevention of Future Deaths reports and that delays to do not remove the need to address immediate patient safety risks. #SevereMEAwarenessWeek

#SevereMEDay 25% group People seem to think M.E. is this mild, ineffectual disease. It is not. It’s a severely life affecting, life limiting, life changing neurological, neuro-immune disease of the brain and spinal cord. In turn, a multi-system issue (lack of oxygen to tissues, perfusion etc)….

#Bloomscrolling #Nature #Gardening #Flowers #Photography

Polyommatinae, the blues, are a diverse subfamily of gossamer-winged butterflies (family Lycaenidae) 🩵 #blue #blues #bluebutterfly #butterfly #savebutterflies #butterflies #wildlife #nature #wildlifephotography #bugs #bsky #BigButterflyCount #insects #butterflyconservation #pollinator

© Seong Ryul. 'Cloud 16,' 2026. Acrylic, gouache on canvas. 162.2 × 130.3 cm.

“ME is a very dangerous & debilitating condition.” Karen Gordon’s mum, explains why travelling 100 miles for an assessment could cause a serious relapse. Karen needs tube feeding & would be better off at home but is effectively trapped in hospital. #MECFS #SevereMEAwarenessWeek

Thank you for creating a beautiful musical pause in my scrolling! 🫶🏼🎶

Tristan Bouchard@tristanbouchard.bsky.social · 2w ago

Monday morning jazz ☀️ I'm immensely enjoying this daily tradition here on Bluesky as I work through the many fake books I've collected. Today's pick is a Cole Porter tune from 1936, nominated for an Academy Award (losing to "The Way You Look Tonight"). I've Got You Under My Skin- Cole Porter

Yes! Epistemic injustice is exactly what this is. Decades of falsifying the testimony of tens of thousands of people too unwell to defend themselves from the slander.

Long Covid Kids@longcovidkids.bsky.social · 2w ago

Recommendations for journalists to counter epistemic injustice in reporting Long Covid and similar conditions. pmc.ncbi.nlm.nih.gov/articles/PMC... #Journalists #LongCovid #Children #Childhood

Thursday morning jazz 🪊 🎹 ☀️ Join me every morning here for more jazz tunes and take a break from the news awhile. It will still be there! Also, please don't set our world on fire! It's all we have. I Don't Want to Set the World on Fire

“Very ill person lives here. Please do not knock.” Rosalind Amor has had #ME since the age of 8. Aged 25, she could not tolerate much light or noise, could not get out of bed, was partly fed by tube and could only speak in a whisper. (Clip from 2017.) #MECFS

The neurological issues we already knew about in Myalgic Encephalomyelitis were pretty bad. Add this to the mix and it's no wonder people with ME have so many cognitive issues. We need more neurologists to understand the reality and take patients seriously. #medsky #neurosky

Science X / Phys.org@sciencex.bsky.social · last mo.

First MRI evidence in ME/CFS points to impaired brain waste clearance. The sleep-linked disruption may help explain brain fog. doi.org/hb9gsf

When I could hide my disabilities, people accepted me. When I couldn’t hide them, they tolerated me. When I became vocal & demanded ableism be addressed, they abandoned me. This is why we need a Disability Pride month. This is why we need advocates. We shouldn’t have to hide.

I support Wikipedia, where information is still human-created, fact-checked, and 100% free. Join me! donate.wikimedia.org

The Soil Matters podcast interviewed Professor Simon Jeffery and me about the Earth Rover Program and the rapid advances in soil science it enables. We explain why soil has been so hard to study, how our new approach is helping, and how it might transform farming. 🧵 soils.org.uk/soilmatters/...

Soil Matters Podcast - British Society of Soil Science

Soil Matters is brought to you by the British Society of Soil Science, the professional body for soil scientists in the UK. Soil Matters is dedicated to bridging the gap between scientific research an...

soils.org.uk

How many times can these people do the same trial and get the same pathetic results? virology.ws/2026/07/18/t...

1/ 🚨 Big news: @solveme.bsky.social has awarded @renegaderesearch.bsky.social a Catalyst Award to launch SIGNAL - a decentralized platform to test promising therapeutic devices for ME/CFS and Long COVID. Here's what it means for patients 🧵

We're excited to host @amaticahealth.bsky.social for a Research Roundtable on July 23 at 12 pm ET! Amatica has one of the largest patient-driven RNA Sequencing datasets in #MECFS & #LongCOVID. Nick Boyd-Gibbins will share what the data is revealing. Register: us06web.zoom.us/webinar/regi...

Welcome! You are invited to join a webinar: Amatica's RNA Sequencing Research. After registering, you will receive a confirmation email about joining the webinar.

Amatica Health joins Renegade Research for a roundtable on the biology of Long COVID and ME/CFS, and how large-scale RNA sequencing can advance research into these underserved conditions. Amatica is ...

us06web.zoom.us

Coming over here, winning the World Cup ...

Men in Blazers Media Network@meninblazers.bsky.social · 4w ago

Spain’s Nico Williams gave his mother, Maria, his World Cup winner’s medal after Sunday’s final ❤️💛 Nico's parents trekked some 2,000 miles across the Sahara from Ghana to Spain as refugees. Now, their son is a world champion 🥹

Support wild life where you can! #ClimateEmergency

nobody, repeat nobody, is counting. Imagine. Visualise. The impact of conflate a very serious mental illness with a lethal physical illness. This is how #MEKills

#Poetry #Painting #Fireflies She knows where the blue flag grows wild and the grass is deep where the fireflies blinking their little lights, hurry toward one another. And the world continues, God willing. - Mary Oliver 🎨 Amanda Clark

#Haiku #Woodblock #Fireflies Come, let’s go see the fireflies, right past the water-gate! Yosa Buson 🎨 Kobayashi Kiyochika (1847-1915)

Peacock butterfly. #ButterflyWeek #nature

Such a magnificent and magical world… 🦋✨🫶 www.sunnyskyz.com/blog/4101/Ch...

A Bumblebee resting on a vibrant pink Cosmos flower, Westport, County Mayo, Ireland #BeesNeeds #Pink #Pollinators #BloomScrolling #Flower #Bee #Wildflower

Summer! Butterflies flutter over flowers, collecting nectar and spreading pollen.

It’ll be helpful when it starts trickling down into healthcare. Currently no depts within NHS are aware & ill-informed or make no accommodations, still ongoing in 2026, harm to all levels of severity is happening every single day in these settings,often on NHS still under dept of psychology! #pwME

Adam@abrokenbattery.bsky.social · 4w ago

"This is serious neglect, and in some situations, abuse... As a former child protection social worker, I've seen some harrowing things and the way some people with severe ME are treated is up there.” Sonya Chowdhury, CEO of @actionforme.bsky.social #MECFS