@bendyhedsandco
For Awareness & Support of #Hypermobility #hEDS/HSD #POTS #ME/CFS #MESpine #Stenosis #MCAS & co. #PANS/PANDAS & #LongCovid ally #NEISVoid #MedEd for EDS/HSD & co 🔗 conditions go to: 👉 https://gptoolkit.ehlers-danlos.org/ 👈
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
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?...
image shows sad boy crouching with arms round his kneed in fromt of a colourised image of the DfE
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...
“Stop blaming special schools for government failures” Claire Dorer at NASS doesn’t hold back: “I don’t think I’ve ever worked under a Minister who shows such contempt” for special schools, their children and families “who have found them a lifeline” www.nasschools.org.uk/stop-b...
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
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
Image of NEU gen sec Daniel Kebede over a colourised image of some children at an interactive whiteboard
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...
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...
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:...
A black and white photo of 7 people, one in a wheelchair. They are standing in a foyer of a meeting room, and looking at the camera, the carpet is patterned and there is glazing of offices behind. A logo for the overlapping illness alliance is bottom right. It’s purple, pink and turquoise.
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,
A group of eight people stand together in a meeting room beside a tall banner for the Overlapping Illness Alliance. The banner displays the Alliance logo and partner organisation logos. The group are smiling for the photo, and several are wearing visitor lanyards. A table in the foreground holds leaflets, and the room has large windows and modern wooden paneling.
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.
Still waiting on the new hEDS and HSD criteria? You’re not imagining the delay.Here’s what’s happening, why it matters, and what to hold onto meanwhile.
#EDS #hEDS #HSD #ChronicIllness #InvisibleIllness #PatientVoices #UnremarkableMe
www.unremarkableme.com/post/waiting...
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.
‘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...
Action on Covid and Long covid We call on the government to protect us all from covid. Air quality improvements in public indoor spaces e.g.schools,hosoitals,public transport, workplaces NHS that is safe for patients and sraff Free lateral flow tests Sick pay for supported isolation Research into improved vaccines and therapeutics Post viral chronic illness research task force for better understanding of and treatment for Long Covid, ME and Chronic fatigue syndromes Comprehensive, safe, evidence bases vaccination and booster programme
www.youtube.com/live/5BP5Fi9...
1st Day of the 2 is live now & you can rewind it. Unsure if the live is available to all while live, I preregistered.
The conference aims to raise awareness and understanding among healthcare professionals, researchers, policy makers, patients and advocates about ME/CFS, long Covid and other post-viral illnesses.
📆 When? 12-13 November 2025
📍 Where? Online
Graphic from Action for ME promoting the 2nd International Conference on Clinical & Scientific Advances on ME & Long Covid, 12-13 November 2025. Photo of people sat at a conference with Action for ME logo in top right corner.
📢 The International Conference on Clinical and Scientific Advances on ME and Long Covid is taking place in Porto, Portugal next week and you can register to attend online for free!
Photo of a wooden angel ornament hanging on a Christmas Tree. Text beneath provides details about Action for ME’s Christmas Angels project and includes a QR code to the sign-up form.
Would you like to send or receive a card from another person with ME this Christmas? 🎄
Or do you know someone severely affected by ME who would appreciate a card?
Join our Christmas Angels project! 😇
Momentum is growing for our Making the invisible visible campaign on 8th November 2025, to mark World Ventil8 Day - why not join us?
Visit the campaign website to learn more and register 👉 bit.ly/mtiv25
#MTIV25 #MTIV #SaferAirProject #IndoorAirQuality #MTIVNews
Logo of Greens Against Covid. Text: Greens Against Covid. World Ventil8 Day logo. Text: Clean air for health: Protection from pollution AND from infectious diseases. Collaborate to Ventilate. Symbols for Youtube, Instagram and X. #WorldVentilateDay #Collabor8Ventil8 worldventil8day.com #CleanAirIsAHumanRight Imprint: Promoted by Covid and Long Covid Campaign Working Group (Green Party), c/o PO Box 78066, London SE16 9GQ. Colours - apple green, fair green, vivid azure and white.
Tag your friends to help get the message out! @greensagainstcovid.bsky.social 💚
✅ We demand #CleanAir to stop the spread of airborne infectious diseases & protect schoolkids, workers & vulnerable friends & family from #Covid & #LongCovid
Headshot of Cat Smith MP, who has shoulder-length blonde hair and glasses, smiling against a grey background. The Action for M.E. logo appears in the top right corner. Below, a banner reads: “Policy news – Cat Smith joins our Parliamentary Champions network.”
A statement from Cat Smith MP on joining Action for ME as a Parliamentary Champion. She speaks about hearing from constituents about the devastating impact of ME, recognising the overlap with other long-term illnesses, and the need for more awareness, research, and joined-up care.
We are delighted to welcome @catsmithmp.bsky.social as our newest Parliamentary Champion!
We would like to thank Cat and we look forward to working with her. Read more here: www.actionforme.org.uk/cat-smith-mp...
Statement from the APPG on Myalgic Encephalomyelitis (ME) by Jo Platt MP explaining that a planned evidence session did not go ahead because many MPs were in their constituencies, reassuring that MPs remain committed, and noting efforts to reschedule the session soon.
2/2
We are currently working to rearrange the session to ensure that the evidence session still goes ahead and will share further news on this once a new date has been secured.
An update from the APPG's Chair, @joplatt.bsky.social MP, is attached.
#MyalgicE #MyalgicEncephalomyelitis
Graphic with DecodeME and Action for ME logos, laptop illustration, and text: “Want to find out more? Read more about DecodeME and our partnership with the University of Edinburgh, on our website!”
More on DecodeME and our partnership with the University of Edinburgh 👇
www.actionforme.org.uk/research-cam...
#MyalgicE #MyalgicEncephalomyelitis #MEAwareness
People with disabilities have been victimised by successive governments for a long time. Reform has threatened more cuts for this. How do you propose to support people with disabilities?What can you say to encourage them to support the Green Party?
Labour cancelled 13 million covid vaccines to clinically vulnerable. This week 188 people have died from COVID. I feel nothing has been learnt. It’s made a mockery out of the COVID inquiry. We now need another inquiry to investigate this governments mishandling.
Live 10pm channel 4. Last leg. Questions for Polanski. Craic with Zack
🎉 I’ll be appearing live on #TheLastLeg tomorrow night. 10pm on Channel 4.
🎤 Reply below or text The Last Leg on 07956 175 908 with any questions you’d like me to answer on the show!
