I've used 225.2 out of my daily 7 pace points in just the hour I've been awake. Got up, washed, cleaned teeth and went downstairs to sit in the recliner. Is it my Visible band or my body that's f**cked? #SevereME #pwME #POTS #hEDS #Knackered

Soon, MPs will have a final chance to amend the Mental Health Bill. I’m supporting Mind’s campaign to improve the Bill to give people more say in their treatment, end racial inequalities and make it work for young people. I’ve emailed ill you email yours too? campaigns.mind.org.uk/page/176593/...

When’s the last time you saw a hedgehog? 🦔 Their numbers are falling, so I just signed a petition to make hedgehog highways - tiny gaps in fences to help them - mandatory in ALL new builds. Add your name: act.38degrees.org.uk/act/hedgehogs

MPs must attend the POTS parliamentary debate – it’s a crucial moment for those struggling www.thecanary.co/uk/analysis/...

Tell Japan: shut down the ivory market, save elephant lives. action.eko.org/a/japan-ivor...

Nigel Farage, Richard Tice, Dr David Bull, Paul Nuttall, still haven’t said a word about their MEP colleague from UKIP to Reform UK, the Reform UK Leader in Wales Nathan Gill. 8 charges of Russian bribery, all admitted. Reform UK are on the hook for this.

Tell Japan: shut down the ivory market, save elephant lives. action.eko.org/a/japan-ivor...

People will not stop asking me if I'm going to get better. It's CHRONIC illness. I have a DEGENERATIVE condition. Best case some symptoms calm temporarily or progress slows. That isn't for sure and is a new possibility for me but so far meds aren't working. Just let me be sick. This is not support.

Just wait until you see what Satan has planned for us www.councilestatemedia.uk/p/tony-blair...

Please show your support! Write to your MP today asking them to attend the Westminster Hall debate on PoTS on 14th October at 11am. Vist: potsuk.eaction.org.uk/westminsterd....

Check out this from We Own It. weownit.org.uk/act-now

I've asked my MP to support us, have you?

#mecfs #spoonies #longcovid #pwME

Update (UK), 15th September 1976 - forty-nine years ago today. Melvin Ramsay. “While treatment is essentially empirical it cannot be too strongly stressed that rest is imperative in the acute phase of the disease.” #myalgicencephalomyelitis #cfs #mecfs #myalgice #cfsme #chronicfatiguesyndrome.

Reform UK leader Nigel Farage has finally confirmed that his party would cut support for many claimants of disability benefits if it won power at the next general election, with the cuts focusing on those he claims do not “genuinely deserve help”. www.disabilitynewsservice.com/farage-final...

Three in four English hospitals failing to hit two cancer targets in league tables

Peeling the Diagnostic Onion - is your doctor falling for too many red herrings and missing your #hypermobility? ohtwist.com/peeling-the-... #HSD #EDS #hEDS #EhlersDanlos #pain #MedEd #MedTwitter #Fibromyalgia #fibro #zebras #NEISvoid #autistic #ADHD

Whaaat?? Yeah, this totally passed me by. Why is this government being so shortsighted and stupid on so many issues. Again and again... #SaveOurNHS

Can we reach consensus on an ME research case definition? Prof. Leonard Jason et al. from the De Paul University in Chicago are seeking #pwME’s and their carers’ input thorough a new survey: redcap.is.depaul.edu/surveys/?s=P... #ME/CFS

Please donate if you can xxx www.crowdjustice.com/case/justice... via @CrowdJustice

🤩 @vladvexler.bsky.social has a public profile DESPITE #MEcfs & #LongCovidME on top. Ty @alastaircampbell2.bsky.social @restispolitics.bsky.social for the acknowledgement. #MEKills (mostly females) #Justice4ME Justice4me.uk please share

A massive, dangerous and disgusting scandal, of which far too few people are yet aware. At @fightingdirty.bsky.social we'll keep pushing to stop it. Congrats to @rachelsalvidge.bsky.social for continuing to shine the light: www.theguardian.com/environment/...

Dr Ian Lipkin: "There's no question that threshold for triggering inflammation with ME/CFS is lower than the threshold in people who are healthy. So anything can set this off." www.youtube.com/watch?v=-_ih...

I've just emailed my MP, asking them to meet with Marie Curie at their party conference. Will you email yours and help fix end of life care for good?

Starmer can sack Peter Mandelson US Ambassador, but he can't sack Lord Peter Mandelson who has a job for life making laws that affect all of us. We need a House of Citizens to hold politicians to account. Join now www.858.org.uk #ukpolitics youtube.com/shorts/QnyL0...

Today on #WSPD we spotlight a hidden but urgent link between Ehlers-Danlos syndrome (EDS) neurodivergence & suicide risk. Changing the narrative on suicide requires systemic change. It's about shifting from silence & stigma to one of openness, understanding & support #WorldSuicidePreventionDay #EDS

New evidence: Glyphosate causes cancer -- even at exposure levels that authorities consider safe. We've got to BAN #GLYPHOSATE EVERYWHERE! action.eko.org/a/glyphosate...

Billionaires have broken Britain. #MakeThemPay to fix it. On Saturday 20 September, thousands of us will take to the streets to demand the government: ✅ Tax the super-rich ✅ Protect workers, not billionaires ✅ Make polluters pay Spread the word today!

1/5 📢 Early Day Motion (EDM) tabled on the Final Delivery Plan We’re pleased to see this EDM tabled by @tommorrisonmp.bsky.social to discuss the Final Delivery Plan on ME/CFS. #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #EDM ⬇️

The rich cannot escape tax. All their money comes from you, the Government could stop it entirely if they wanted. The only reason we have the lie the rich can't be taxed is because they own the Media and have bought the politicians.

Tesco could pay every worker an extra £10,000 and still make a profit. British Gas could pay every worker an extra £35,000 and still make a profit. Shell could pay every worker an extra £300,000 and still make a profit. It is the billionaires who are ripping you off.

Please donate if you can x

🔥 Please share - Very important care campaign for anyone with ME #pwME #pwLC ♥️💙🫂 "Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness" justice4me.uk

INIM: 'What Spike Proteins Reveal About Long COVID and ME/CFS' 'Dr. Nancy Klimas, immunologist and Director of the Institute for Neuro-Immune Medicine, joins Haylie Pomroy to explain how persistent spike protein may be the missing link behind long COVID' www.youtube.com/watch?v=Gifd...

'Research reveals molecular details of ME/CFS and long COVID' 'Patients with myalgic encephalomyelitis have heightened innate immune responses..' "...may inform clinical research and lead to targeted interventions," stated senior author W. Ian Lipkin, MD www.news-medical.net/news/2025090...

They said Brexit was taking back control, now they say leaving the ECHR is taking back control How about we really take back control, of the Energy, of the Water, of the Public Transport, of the Housing, of the Banks They would be terrified of that, actually taking back control

Stop being Joey. Start being Phoebe.

"PEM warrants recognition as a neurological pathology resulting from metabolic and immune dysregulation (3). Approximately 48 hr after a triggering event—physical, cognitive, or emotional—patients experience what is colloquially termed a “crash.”" www.bmj.com/content/390/...

Please donate to Justice For ME if you can and/or help spread the word; shorturl.at/x1Vyx #meawareness #Justice4ME @swastrosarah.bsky.social 💙💪

HuffPost: 'COVID-19 Is Surging Again — And These Regions Are Facing The Sharpest Spikes' '...a COVID infection can still lead to complications such as long COVID, hospitalization and death" - Dr. Sarah Whitley Coles, University of Arizona College of Medicine www.huffpost.com/entry/covid-...