I was diagnosed with POTS years before COVID When the first cases of Long Covid were reported, I thought we would see breakthroughs in POTS, MCAS, ME/CFS and more. I assumed the problem was too big to ignore. Unfortunately I was wrong, and most LC patients have been abandoned like the rest of us.

It has indeed. In my case to 38years of chronic disabling illness; my academic career, my psychotherapy career, my very young daughter and my marriage were all irredeemably damaged by medics who were either ignorant or just plain cruel. And I’m one of the lucky ones who didn’t end up dying.

Sickness, Disability, and Death in NHS England Staff The three graphs that *every person* needs to see. The question that every single person needs to ask their government: What are you doing to protect me from Covid infection?

The world's richest 0.1% took just three days to exhaust their annual carbon budget The UK’s richest 1% produced more carbon pollution in eight days than the poorest 50% used in a year. We can't afford the rich - they produce corruption, poverty, environmental degradation; destroy democracy.

Today's Post : "The Addenbrookes Infection" How does a Trust become so toxic, it ends with a Letby or an AlderHey? Like this..... open.substack.com/pub/undercla... Please read, subscribe and share. We have to start hearing uncomfortable truths about the NHS, or we can't fix it.

[email protected] Thanks for your support on the Other Place. "Sue is a tireless & effective campaigner for people with disabilities, knows many people with ME & sadly, has Crohns disease & knows plenty about IV feeding from personal experience."

My first post of 2026! "I'm all out of Spoons" If you're a seasoned #spoonie please RT for others. If you don't know the term, but have a long term condition, then this is for you! open.substack.com/pub/undercla...

it’s all i’ve got

German public radio station Deutschlandfunk has published a 3700-word article & radio piece on how #MECFS & #LongCovid impact life & autonomy. Article is titled: "Die Grenzen der Autonomie Wie Post-Covid & ME/CFS das Leben verändern” Translation www-deutschlandfunk-de.translate.goog/wie-postcovi...

Next time you see an article quoting a transphobe from one of the fauxminist ‘gender critical’ transphobic hate groups - email/ tag the journalist and ask them why they’ve not asked @nionwomen.bsky.social for a quote - as they’re MUCH more representative of UK women! notinourname.org.uk

Peter Thiel’s Christmas party had an odd theme this year: “all things Britain.” (per NYT) As Trump sunsets and backlash builds, expect a focus shift to the UK—where some see brighter possibilities for fascism,network states, and monarchies.

GOOD NEWS! Researchers have shown Alzheimer’s disease can be REVERSED- not just prevented. Using a potent neuroprotective compound called P7C3-A20, they found RESTORING balance to a central cellular energy molecule (NAD+) not only PREVENTED disease features but REVERSED them, EVEN at late stages.

Day #395 Non-stop pro-Euro #protests in #Tbilisi #Georgia #Regime continues to silence us, but... here we are! #GeorgiaProtests #terrorinGeorgia

I have worn a mask in public for over 5 years. My husband has had profound, life-changing long Covid for over 4 years, and now our kid does as well. I can’t imagine I will stop masking unless their circumstances change. And for what it’s worth I haven’t had even a cold for the last four+ years.

Zuckerberg settles $8 billion lawsuit over Cambridge Analytica scandal, avoids testifying www.france24.com/en/americas/... @carolecadwalla.bsky.social

Oh my goodness, this is such a lovely story www.bbc.com/news/article...

📝 The one from Substack I’m most pleased with from 2025. Primarily because people rarely make the comparison between Farage and Johnson, despite the fact they share the same brand of elitist, chaotic, egomaniac politics 👇🏻

Rhys ab Owen MS shares the story of a woman with #MECFS who spent decades housebound & bedbound. Her mother describes >30 years of neglect, abuse & being ignored because professionals would not set aside their beliefs, e.g. a child protection referral that caused years of stress.

Highlights — Adam Price warns that the failures in Maeve Boothby O’Neill’s case could happen in Wales, and asks the Cabinet Secretary to respond to the Prevention of Future Deaths Report and implement lessons learned from the Devon Trust into an all-Wales protocol.

A quick plug for The Hope Projects: a charity that houses refugees made absolutely destitute by Britain’s brutal asylum polices. Every time you give them some money somebody eats and Farage cries. hope-projects.org.uk/about-hope/ Donate here: cafdonate.cafonline.org/9696#!/Donat...

8) "The sheer magnitude of the unmet needs is devastating: this population live with disabling and life-limiting symptoms, yet they feel alone and abandoned, receiving little to no institutional support, care or recognition of their suffering."

Is the government going to sit and watch while the #PalestineAction hunger strikers die? Is most of the media going to carry on ignoring them? Just how callous has the Establishment become? www.theguardian.com/uk-news/2025...

2) After a virus I was unable to eat because of MCAS complaints and lost a lot of weight. I was also unable to speak properly for a couple of years. I could only manage a few words, mostly whispering. Speaking would make me crash because I could not push the air out of my lungs or properly use

Hey, I gave this a signature. Please do take a look! #MECFS #PANS #LongCOVID

#Urgent Appeal: Help Anna Escape #Abuse – Time is Running Out! @phonakins.com kindly helped make a Chuffed ♥️ Please help: 🔄SHARE, 💬 COMMENT, 📝QUOTE &💸 GIVE if you can. Share on all social media platforms. chuffed.org/project/1619... #SevereME #MutualAid #Disability #MECFS #ChronicIllness

1 of 9 My #SevereME Christmas * All day mostly alone * No TV, music or twinkly lights due to extreme sensory sensitivities * I won’t be able to see anyone except my husband (also my caregiver) as I don’t have enough energy to interact with them. We’ll mostly sign for the things I need …

Christmas can be a difficult time for people with chronic illness. Thinking of everyone with severe #MECFS and #LongCovid, particularly those who are living alone or isolated in darkened rooms.

Gutted to get 2 messages from kids in my family telling me I need to try harder to socialize at the holidays & “get over” being sick I do so much disability advocacy to try and help people understand that it’s not our fault We can’t “try harder” Yet I can’t get my family to understand Crushed

Just a reminder: you are NOT unusual, weird, or unlovable if you have: - no one to see on Christmas Day, - no presents, or - no contactable relatives. Very few people live the idealised version on TV. Those of us who live differently—whether by choice or trauma—matter as much.

UK residents can use this template letter from @pscupdates.bsky.social to write to David Lammy: palestinecampaign.eaction.org.uk/LammyHungerS...

This is proper #Brummie: the Sikh Langar Seva Society feeding the homeless in New Street station: www.bbc.co.uk/news/article...

Sending love to everyone in the #MEcfs, #SevereME and #LongCovid family today As @whitneydafoe.bsky.social says: Alone, Together 💙💙💙

Some facts… the 72 LibDems are 11% of MPs but… 👉🏾 Have asked 43% PQs on ME 👉🏾 Constitute 23% of MPs in the APPG ME 👉🏾 ALL signed a letter to Wes Streeting 👉🏾 Secured the only debate on ME in this Parliament. We were consistently there for #pwME. Thanks #ThereForME for this acknowledgement.

When coming down with #ME 4y ago I felt betrayed and dissapointed by all parties in the UK like never before in my life. I have never been a 'one-issue' voter but the treatment of #pwME/LC is so scandalous and criminal, so disabling, that everything, including politics, reduced to that... 1/3

The decades long neglect of #pwME is a great injustice and we are all poorer for it. I’m proud to be one of the 72 LibDem MPs who have fought to address this. And I know that I’m not alone in committing to continuing the fight to see real change in 2026.

December 24th. Thank you for being #ThereForME, Rosie Barrett! Rosie is a carer to her sister Alice and was featured this year by BBC Spotlight championing our #FundThePlan campaign. Nominated by Lauren. ✨

This kind of work is absolutely central. And deeply traumatising. Even for someone who has experienced it directly, the #GreatestMEdicalScandal is still beyond belief when you 'read' similar stories. Thank you Katherine Cheston.

1) Moving paper by young ME/CFS researcher Katherine Cheston. She was aware of the great disability it causes but "encountering the reality of this suffering first-hand was still shocking and deeply saddening." She gives examples of patients who do not get appropriate care.

I’m sharing a Palestinian account every day and today is Hasan. Hasan is a ux/ui designer and his wife Duaa taught English. They have two sons, Amir, 6 and Osama, 3. I spoke with him this morning and like everyone in Gaza his family is terrified and heard bombs all night. Help if you can ❤️

How I'm turning up to the Bluesky Christmas party.

1) Dutch researchers found an unexpected and profound abnormality in ME: instead of increased CRH activity, there were almost no CRH-producing neurons visible in the hypothalamus, with strongly reduced CRH in fibers to the pituitary. me-cvsvereniging.nl/nieuwsberich... According to ChatGPT this

#NEISvoid Letterboxd squad: have you rated Unrest yet? There’s some pretty frustrating ableism in the reviews that’s dragging the score down. I’d love to boost it to encourage other Letterboxd viewers to check it out!

Greta Thunberg Arrested in UK for Supporting Palestine Action and Opposing Gaza Genocide www.commondreams.org/news/greta-t...

2025 edition. It never gets old... #pwme #myalgicE #millionsmissing #millionsmissing #severeME

A horrid part of #SevereME is developing new worrying symptoms (eg. currently have breast rash & swelling) as you can’t get to a hospital. If you manage it, it’s dangerous due to prejudice & lack of understanding. Same issue with home-visits but you risk a ‘safeguarding’ report as well #JusticeForME

Once again but in pink. The wise words of Sara Ahmed…

Their demands are reasonable, their treatment is disgraceful. The government's intransigence is killing the #PalestineAction hunger strikers. Just as its complicity has assisted the genocide in Gaza. It needs to wake up right now to the moral consequences. www.theguardian.com/uk-news/2025...