iiinova — where your digital self keeps evolving

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Tristan Bouchard @tristanbouchard.bsky.social · 17/09/2026

Another Carole King tune for your evening, perfect for when you're missing that special someone 💙 Rest well my friends 🌙 So Far Away - King

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Tristan Bouchard @tristanbouchard.bsky.social · 17/09/2026

Max Richter's pieces, while harmonically and structurally simple, are direct and dense in feeling and atmosphere. This one was featured in the TV show "The Leftovers". 🌲 🎹 Departure - Max Richter

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Adam @abrokenbattery.bsky.social · 17/09/2026

"In just my mind, my body felt like it was dying." Emma Donohoe talking about having Severe ME at 19, bed bound 90% of the time, unable to eat without symptoms, unable to think straight or even remember the names of friends. #MECFS

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Island Girl (IG)🇨🇦🇨🇦🇨🇦 @tenoaks6.bsky.social · 15/09/2026

Yesterday I found this little buddy growing up the side of a piece of driftwood & I felt happy. Life can be gutting, yet if you look for simple joy it doesn't feel quite as ominous. I hope today you encounter something that causes a smile💕 #gratitude #bloomscrolling #photography #nature

A pretty little pink daisy with a purple centre set in greenery growing against a large piece of driftwood

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💙🪄 Keep Rising 🪄💙 @keeprising.bsky.social · 12/09/2026

🌿💖 cat supervisors are best 🤎💚♥️ #caturday ♥️💛🤍🌱

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sarah boothby @swastrosarah.bsky.social · 11/09/2026

Great start to OMF symposium from Todd Davenport, setting the stage with #pwME at the centre

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sarah boothby @swastrosarah.bsky.social · 11/09/2026

Is this reliable, or an internet fake @lucibee.bsky.social, @davetuller1.bsky.social do you know?

social media exchanges between Netherlands and Professor Michael Sharpe in which Sharpe apologises, indirectly, for confusing CFS with ME. How many people died or were maimed because he did?

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sarah boothby @swastrosarah.bsky.social · 11/09/2026

The UK ME organisations were involved in hitching #ME as a suffix to CFS. I have been told this is because CFS was the only name given in USA. White's PACE trial led policy makers into the disastrous decision to view post infectious diseases as behavioural. @davetuller1.bsky.social is this right?

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𝕯𝖆𝖓🍂🎃🕸️ @arepublic86.bsky.social · 05/09/2026

Charlotte Wainwright restoring and saving old/ancient books. www.wainwrightbookbinding.com

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sarah boothby @swastrosarah.bsky.social · 05/09/2026

Justice4ME.uk donors

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Tristan Bouchard @tristanbouchard.bsky.social · 05/09/2026

This evening's selection, Proserpina, was the last song written by Kate McGarrigle, later covered by her daughter Martha Wainwright. It tells the story from the perspective of Ceres (Hera in the lyrics) mourning the loss of her daughter Proserpina from Pluto, god of the underworld.

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Adam @abrokenbattery.bsky.social · 06/09/2026

“For children, for both Long Covid and ME and CFS and Lyme, the situation remains dire. There are not really any services.” Stuart McIver, Long Covid Scotland, giving evidence to the Scottish Parliament. Sept 2026. #MECFS #LongCovid

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sarah boothby @swastrosarah.bsky.social · 05/09/2026

Good to speak in person with @sunsopeningband.bsky.social and wishing him a happy holiday weekend. His upcoming #research is bang on target for #ME #LongCovidME. Meanwhile, better clinically informed guidance from @england.nhs.uk - before it dies - is urgently needed & possible. What's the hold up?

justice4me.uk

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Firstname Lastname #FuckTrump @notunpackedyet.bsky.social · 05/09/2026

#MEcfs #pwME #LongCovid loads of us have always wanted to see the government sued for its criminal lack of action on #SevereME. This is a claim for judicial review, w back & forth with gov legal dept currently, doing letters before action. It needs more cash to keep fighting. Plse donate if u can!

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💙🪄 Keep Rising 🪄💙 @keeprising.bsky.social · 05/09/2026

🌿♥️ this pure love between sentient souls 🤎🩷💛❤️🤎🌱

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Massimo (mirror) @rainmaker1973-m.bsky.social · 05/09/2026

Anthony Howe is a kinetic sculptor who creates wind-driven sculptures resembling pulsing, alien creatures and vortices. This one is in downtown Montreal. Original post

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sarah boothby @swastrosarah.bsky.social · 05/09/2026

bacme.info/wp-content/u... The BACME tube feeding #ME/CFS survey report. A fine example of the distance between safe medical practice and death from neglect where #PEM is not clinically assessed by knowledgeable doctors and clinicians. Families should not have to be educating NHS providers.

bacme.info

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valebodi.bsky.social @valebodi.bsky.social · 05/09/2026

Post-exertional malaise (PEM) in #ME/CFS 15 August 2026 Post-exertional malaise ( #PEM), the cardinal feature of ME/CFS, is particularly debilitating as it involves the amplification of existing symptoms, alongside the potential appearance of new ones, following minimal exertion. However, the term

meresearch.org.uk

Post-exertional malaise (PEM) in ME/CFS

Post-exertional malaise (PEM), the cardinal feature of ME/CFS, is particularly debilitating as it involves the amplification of existing symptoms, alongside the potential appearance of new ones, follo...

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Adam @abrokenbattery.bsky.social · 05/09/2026

“My daughter was told to exercise and ended up in a wheelchair... For GPs not to be aware of the harm that exercise can do is hugely damaging.” Janet Sylvester (MEAction Scotland), speaking about her daughter Emma, who has ME, while giving evidence to the Scottish Parliament. Sept 2026.

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Bateman Horne Center @batemanhornecenter.bsky.social · 19/08/2026

Lisa Marie of the WIMEL Writers shares an excerpt from When My Myalgic Encephalomyelitis Was Severe, offering a glimpse into a reality too often unseen. Watch the full conversation: youtu.be/HlfbfyRl3K8 #SevereMEAwareness

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sarah boothby @swastrosarah.bsky.social · 17/08/2026

This is what care for severe #ME looks like. @janetdafoe.bsky.social and I wept at the sight. Norwegian with English subtitles. Thank you @investinmeresearch.bsky.social youtu.be/j9PnqMWPVx4?...

youtu.be

IIMEC18 Mari Gamme Sollie / Trine Alm

YouTube video by InvestinME Research

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Petra Michaela @petramichaela.bsky.social · 18/08/2026

Let the dandelion remind you that not everything beautiful comes packaged in perfection. Some miracles grow wild, uninvited and absolutely necessary

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Paul Bassett Davies @thewritertype.bsky.social · 15/08/2026

Dear government, don’t send startling, high-pitched alerts about wildfires to ordinary people's phones. Send them to the CEOs of fossil fuel companies and make them impossible to switch off until they stop the destructive plunder that's contributing to climate change.

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Petra Michaela @petramichaela.bsky.social · 14/08/2026

One in every three bites of food you eat exists because a bee flew. The bee is not a detail. The bee is the system. And we are poisoning it to produce crops that are then used to make food products whose profit margins fund the lobbying that prevents the regulation that might stop the poisoning.

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sarah boothby @swastrosarah.bsky.social · 11/08/2026

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

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sarah boothby @swastrosarah.bsky.social · 09/08/2026

🥳 Well done Carolyn 👏

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Adam @abrokenbattery.bsky.social · 09/08/2026

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

forward-me.co.uk

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Adam @abrokenbattery.bsky.social · 09/08/2026

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

• Introduce a patient safety improvement programme aimed at eradicating preventable harms, ensuring
that avoidable deaths become ‘never events’ (see 3.1.1 for details);
• Develop comprehensive national guidance for the management of very severe ME, including nutritional
failure, applicable to both hospital and community settings. If requested by the DHSC, Forward ME can
convene an expert panel of clinicians to commence this work;
• Establish a national NHS clinical support group on very severe ME, consisting of clinicians who have
experience of working with people with very severe ME, to provide an escalation pathway for complex
cases and to support national care quality improvements (see 3.1.3 for details);
• Ensure that the template service specification under development includes robust advice for ICBs on
caring for people with very severe ME and that ICBs are strongly encouraged to put these measures in
place (see 3.1.4 for details); and
• Establish workforce education measures to improve the uptake of NHS e-learning modules among
medical staff caring for people with very severe ME.

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Mads @blueforpwme.bsky.social · 08/08/2026

#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)….

Bold white text in capital letters reads: SEVERE M.E. DAY and underneath reads the date: 08.08.2026 set against a gradient blue background from dark to light top to bottom.

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Gary Buckley @garybuckley.bsky.social · 04/08/2026

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Adam @abrokenbattery.bsky.social · 04/08/2026

“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

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Mads @blueforpwme.bsky.social · 04/08/2026

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

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sarah boothby @swastrosarah.bsky.social · 02/08/2026

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.

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Tristan Bouchard @tristanbouchard.bsky.social · 30/07/2026

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

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Adam @abrokenbattery.bsky.social · 31/07/2026

“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

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Colleen Steckel @colleensteckel.bsky.social · 03/07/2026

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

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Kelly @broadwaybabyto.bsky.social · 24/07/2026

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.

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George Monbiot @georgemonbiot.bsky.social · 20/07/2026

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/...

soils.org.uk

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...

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Renegade Research @renegaderesearch.bsky.social · 20/07/2026

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 🧵

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George Monbiot @georgemonbiot.bsky.social · 20/07/2026

Coming over here, winning the World Cup ...

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sarah boothby @swastrosarah.bsky.social · 19/07/2026

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

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Art & Nature @capecodfairytales.bsky.social · 19/07/2026

#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

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Art & Nature @capecodfairytales.bsky.social · 19/07/2026

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

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