iiinova — where your digital self keeps evolving

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Frances Ryan @francesryan.bsky.social · 26/09/2026

It’s brilliant to see two key government reviews will likely seek to end the pointless reassessment of many disabled people. I’ve written for years it’s a waste of resources and has a huge strain on disabled people forced into regularly proving their condition. www.theguardian.com/society/2026...

theguardian.com

Severely disabled young people should get fast-track access to benefits, Milburn says

Alan Milburn said 16- to 24-year-olds with most complex needs should not have to keep proving they cannot work

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Frances Ryan @francesryan.bsky.social · 28/09/2026

Do you know anyone looking to get into journalism? Maybe with a disability or chronic illness? I’m writing a free newsletter that gives tips & advice on breaking into journalism. Also, gossip. If you know anyone who might find it useful, please pass on! Subscribe: open.substack.com/pub/frances336

open.substack.com

Press Access | Frances Ryan | Substack

The things nobody tells disabled journalists about an industry that wasn’t built for us. Click to read Press Access, by Frances Ryan, a Substack publication with hundreds of subscribers.

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Colleen Steckel @colleensteckel.bsky.social · 24/09/2026

There has been a lot of good research. I think there is more than many realize. I track it as best I can. See here: (all my articles are free) substack.com/@colleenstec...

substack.com

Myalgic Encephalomyelitis Research Lists Updated

Patient selection key to moving us forward

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George Monbiot @georgemonbiot.bsky.social · 24/09/2026

Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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Lucibee @lucibee.bsky.social · 24/09/2026

If folks need an impression of how dismal things are wrt treatment of ME and LC in the NHS, you just need to look at the services stocktake that was done in January 2025. There was "no data" for ME/CFS clinic referrals.

Annex 1 - Data Dashboard - Long Covid ME/CFS Stock take December 2024.

Highlighted box shows that there is NO DATA for total referrals to ME/CFS clinics for the period examined in the stocktake.

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Paula Knight 🎨✒️♿ @paulaknight.bsky.social · 26/09/2026

@georgemonbiot.bsky.social was on top form tallking about ME on @natashadevon.bsky.social Packed a lot of important info in: Pace Trial, GET harms, benefit cuts, insurance etc. It was like a potted history and didn't mince words about how awful it is. Listen back! #MEcfs #MyalgicEncephalomyelitis

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ME Association @meassociation.org.uk · 26/09/2026

#NatashaDevon shared on social media that she'll cover The Guardian article ME/CFS on the LBC radio programme on Saturday evening (6pm-9pm) and will be joined by the author George Monbiot. Listen here: www.globalplayer.com/catchup/lbc/uk… #MECFS #LBCRadio

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@BendyHEDS&Co @bendyhedsandco.bsky.social · 27/09/2026

youtube.com/watch?v=H2rR... Thanks again Natasha & George @natashadevon.bsky.social @georgemonbiot.bsky.social 1 thing to add many, maybe the maj. have ME + linked conditions primarily: Hypermobile #EDS ( #hED / #HSD ) #POTS #MCAS #FIBRO which too often than not, puts you in the severe category.

youtube.com

LBC | Natasha Devon interview with George Monbiot

YouTube video by Broken Battery

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Bluesky Safety @safety.bsky.app · 02/09/2026

Dogpiling or harassing users is unacceptable. We have taken recent action against accounts for this behavior, and we will be increasing our efforts, consistent with our Community Guidelines.

bsky.social

Community Guidelines - Bluesky

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Emma Mooney @moonchild09.bsky.social · 22/07/2026

I just told Burnham to scrap the Trump NHS drug deal. One click to join me: the.organise.network/campaigns/ne...

the.organise.network

Scrap the Trump drug deal: save our NHS!

Add your name:

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BladeoftheSun @bladeofthes.bsky.social · 02/07/2026

Andy Burnham looks like he might cancel the NHS England contract with Palantir, they also have one worth 2.5x as much with the MoD. RT if you want them both out of the UK.

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@BendyHEDS&Co @bendyhedsandco.bsky.social · 04/07/2026

Newly available #ND #Neurodiversity sensory rooms & ramped decking lodge available to charities. At Unity Beach, Brean, Somerset youtube.com/watch?v=efDp...

youtube.com

Beverly Olive Caravan: A Magical Kids’ Retreat for Charity”?

YouTube video by Nigel The Caravan Man

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Douglas Kell @dbkell.bsky.social · 20/05/2026

If folk are interested, I am giving a @BiochemSoc talk on our work with @resiapretorius.bsky.social on Fibrinaloid Microclot Complexes in Long Covid and ME/CFS on June 17 at 2pm. Registration needed but free register.gotowebinar.com/register/226... #TeamClots #pwLC #pwME

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Adam @abrokenbattery.bsky.social · 26/05/2026

“They’re in a darkened room, they can’t tolerate light or sound… some are even tube fed. They’re so unwell, you almost can’t fathom it” Former Team GB rower @oonagh_cousins on people with very severe #MECFS and #LongCovid and the importance to advocate for those who can’t.

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Adam @abrokenbattery.bsky.social · 31/05/2026

Post exertional malaise (PEM) is the hallmark symptom of #MECFS It’s not fatigue following activity. It is a dramatic deterioration and worsening of symptoms. Short video explainer - triggers, symptoms, and management. Repost for the last day of #MEAwarenessMonth

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Adam @abrokenbattery.bsky.social · 02/06/2026

Full segment (9 mins): youtu.be/HHzVXSVvi4o?... New BBC webpage on #MECFS www.bbc.co.uk/articles/c3d...

youtu.be

BBC Morning Live Explains ME/CFS After Viewer Feedback

YouTube video by Broken Battery

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Adam @abrokenbattery.bsky.social · 02/06/2026

BBC Morning Live addresses complaints after Dr Oscar Duke said that Chronic Fatigue Syndrome was “probably the best way to describe” the illness. Feedback from viewers outlines how it trivialises the illness, is just one symptom, and it does not reflect the reality of #MECFS.

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Carole Bruce @cabruce.bsky.social · 13/05/2026

Thank you so much for your support. The Heritage study funded by the government states the annual cost to the U.K. economy from #ME and #LongCovid exceeds £12 billion. That’s £32.8 million a day to the U.K. economy. Yesterday they pledged £4.75 million for research. This makes no economic sense.

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Long Covid Kids @longcovidkids.bsky.social · 12/05/2026

Today we stand in solidarity with children & young people affected by Myalgic Encephalomyelitis #ME, #LongCovid, and #OverlappingIllness. Many live with profound exhaustion, cognitive impairment, pain, sensory sensitivities, & post-exertional malaise #PEM. #MEAwarenessDay #EducateME #ChildHealth

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🤜❤️‍🔥🤛 Challenger 🧪 Sourcecontrol.bsky.social. 🦋 @sourcecontrol.bsky.social · 15/03/2026

March 13 at 1 pm ET (US) for a Research Roundtable with @resiapretorius.bsky.social of @livunipress.bsky.social @dbkell.bsky.social @jfvaughnmd09 discussing: Hypercoagulability, Clotting and Microclotting, and Blood Issues in ME/CFS and Long Covid 👇 youtu.be/FygtEROEqXE?...

youtu.be

Research & Clinician's roundtable on Hypercoagulability, and Blood Issues in MECFS and Long Covid

YouTube video by Renegade Research

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Bateman Horne Center @batemanhornecenter.bsky.social · 20/03/2026

Long COVID affects ~5.8M children, more than asthma, and is often missed or dismissed. It’s not just fatigue; it’s loss of function. This #LongCOVIDAwareness week, we’re sharing resources + education. Watch full session here: youtu.be/no1a1A4tMfw

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#MEAction Network @meactnet.bsky.social · 23/03/2026

The ME/CFS Advocacy Week Kickoff Call just ended. @solveme.bsky.social will be sharing the recording! The 2 main things to know: 1. Register to participate & everything you need will show up in your inbox. tinyurl.com/MEActionAdvo... 2. Save this quick start guide. www.canva.com/design/DAHEr...

Simple graphic with the two pages of the Quick Start Guide at the bottom. Text above: ME/CFS Advocacy Week 2026 Register: https://tinyurl.com/MEActionAdvo2026. Quick Start Guide Now Available!

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Natalie Bennett @nataliegreenpeer.bsky.social · 23/03/2026

Such a powerful account I heard at the weekend about a young woman bedridden with very severe Myalgic Encephalomyelitis following Covid-19 in 2021. We need to talk a lot more about #LongCovid www.theredtreeandme.com/p/red-leaves...

theredtreeandme.com

Red Leaves of Solidarity

Long Covid Awareness month landed at a time when the UK Covid-19 Inquiry is laying bare just how little attention was given to the long- term consequences of Covid infection for children and adults.

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Special Needs Jungle @spcialndsjungle.bsky.social · 21/02/2026

More leaks- and we'd rather not comment but we know others will and we want to ensure parents do not panic or worry unnecessarily. We’ll be analysing the White Paper when it's out so stay tuned. #SEND #EHCP #SaveOurChildrensRights

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Zack Polanski @zackpolanski.bsky.social · 05/02/2026

Decades of under investment have weakened our schools - and that weakens the whole country. We need real funding & care for education now. Here's my conversation with the General Secretary of the National Education Union @danielkebedeneu.bsky.social 👇🏼 youtu.be/MD-wBnLxOsM?...

youtu.be

What Happens When You Underfund Education | Daniel Kebede | Zack Polanski

YouTube video by Bold Politics with Zack Polanski

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Special Needs Jungle @spcialndsjungle.bsky.social · 20/02/2026

On SNJ Today: The DfE seem to be in a chaotic panic— leaks, nonsensical announcements about funding independent special schools, all guaranteed to blow your mind...Read our article to calm you down. A bit. www.specialneedsjungle.com/d...

image shows sad boy crouching with arms round his kneed in fromt of a colourised image of the DfE

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Special Needs Jungle @spcialndsjungle.bsky.social · 21/02/2026

Save this: SEND 2026: THE TRUTH: Nothing’s changed 🔴 EHCPs, legal rights and duties remain in force 🔴 Proposals don’t mean LAs & schools cannot lawfully downgrade, remove, or refuse support 🔴 Legal change won’t be this, or even next year #SaveOurChildrensRights

SEND 2026: THE TRUTH— Don’t let anyone tell you otherwise 1. Nothing has changed. 2. EHCPs remain in force. 3. Legal duties remain in force. 4. Local authorities and schools cannot lawfully downgrade, remove, or refuse support because of proposals. 5. Legislative change won’t be happening this year or even next year, whatever anyone tries to tell you. 6. Children’s existing rights stand. #SaveOurChildrensRights

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Special Needs Jungle @spcialndsjungle.bsky.social · 21/02/2026

On SNJ Today: An article by @danielkebedeneu.bsky.social General Secretary @neunion.bsky.social ahead of the White Paper next week. He says, #SEND Reform Cannot Be Done on the Cheap www.specialneedsjungle.com/n...

Image of NEU gen sec Daniel Kebede over a colourised image of some children at an interactive whiteboard

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Special Needs Jungle @spcialndsjungle.bsky.social · 22/02/2026

As soon as the White Paper is released we will be analysing it carefully and supporting you to respond. We will oppose any reduction in the rights of disabled children and young people. Watch this space. www.facebook.com/share/p/16x...

facebook.com

Department for Education

We have a once in a generation opportunity to transform our school system so every child can achieve and thrive 🫂🚸 But what is a white paper and what does it mean for your child's school experience?...

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Special Needs Jungle @spcialndsjungle.bsky.social · 10/04/2025

If you're looking for #SEND people to follow, this list by SNJ founder @tanialt.bsky.social is a good one! bsky.app/profile/did:...

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Long Covid Kids @longcovidkids.bsky.social · 12/02/2026

Partners across the Overlapping Illness Alliance (OIA) recently came together in person to reflect on our shared priorities, review recent advocacy activity, and agree the next steps for our collaboration. Our discussions focused on progressing joint commitments, strengthening how we work together,

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Long Covid UK @longcoviduk.bsky.social · 01/12/2025

1/ We were thrilled to see 50+ MPs and Peers at the Overlapping Illness Alliance drop-in last week. Thanks to your emails, nearly 80% of MPs got an invite, one even said it was the most letters they'd ever had about an event. Your support genuinely made a difference.

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@BendyHEDS&Co @bendyhedsandco.bsky.social · 28/11/2025

youtube.com/shorts/WbIjg... Love this guy he should've been recruited by labour as an advisor. He has already said in the past he doesn't want to go into politics sadly, he would be an amazing prime minister let alone a chancellor. I'm sure that Zack would have him advise the green party.

youtube.com

Martin Lewis: The Government needs to find and fix 100 small things that p*ss people off

YouTube video by Martin Lewis

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Natasha Devon @natashadevon.bsky.social · 22/11/2025

‘A deficit of scientific understanding at government level for which expert advice could not make up’. I enjoy this description on what went wrong during COVID in today’s guardian editorial (although not the implications, obviously). www.theguardian.com/commentisfre...

theguardian.com

The Guardian view on the Covid-19 inquiry: the UK did too little, too late. Lessons must be learned | Editorial

Editorial: The latest report on the pandemic shows that grave failings were not limited to Boris Johnson. The government needs to prepare for the next crisis

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