“If everyday tasks like standing in line or taking a shower leave you dizzy, exhausted, or foggy, you’re not alone.” — Melanie Hoppers, MD OI & #POTS is common in #MECFS & #LongCOVID. Learn signs + management tips: https://bit.ly/4eLc3eY #POTSAwarenessMonth #UnitedForME

Wild so many chronic illness creators don't give a fuck about covid? pls I beg if you're a chronic illness creator, look into disability justice. Listen to disabled people as well & understand covid NEVER went away. You think your chronic illness is bad, it'll get worse with repeat infections.

We need preventative medicine back - which includes making covid boosters available freely to ANYONE who wants one - which means masking in healthcare at the very least, which means a focus on clean air in schools, hospitals, workplaces. You can't limit long covid without limiting covid infections.

I long to study, to work, to go out, to help others, to contribute to society, to hike, and look out at the views. Instead I cried this morning because I am so exhausted that digesting my feed through my feeding tube had taken all my energy.

And what will happen to all the disabled people who can't work - and those who could work in theory but can't under these ableist conditions - what happens to them when the Overdiagnosis Bureau takes away the trickle of support they get to live. You know. I know. They know.

This isn’t an unavoidable fact of life. It’s the direct result of policy choices made my those in power. It doesn’t have to be this way.

Am wondering if all of those suddenly deciding they’re against communities living “parallel lives” might reconsider their support of religious schools? Or indeed private ones?

Labour's new immigration plans are pandering of the worst kind and no way to treat overseas nursing staff who have come to the UK to care for patients. Without their dedication and expert care, our health system would cease to function.

"Even people with Long COVID themselves sometimes buy into this idea. I see it in our support groups. We’re the unlucky ones, everyone else is walking around getting it a billion times and they’re “completely fine”."

The MILLIONS of people who were denied vaccines are suddenly realising. @rthonwesstreeting.bsky.social this was a terrible idea. Not only will the NHS struggle this autumn / winter, but people will suffer and die unnecessarily. It isn't too late for a U-turn!

Before the start of this Covid pandemic, people used to stay off work (or school) when they were unwell - coughing, sneezing etc. How can it be that people are now happy taking Flu, Covid, or any other illnesses into work/school, threatening the lives and livelihoods of others?

Eligibility for an NHS Covid booster has been HUGELY restricted this Autumn. Studies show that both acute & long-term impacts of Covid are substantially WORSE than flu on almost every measure. www.thelancet.com/journals/lan... So why are the government offering so much LESS protection for Covid?

"It’s a travesty that children routinely go to school well and come home ill. It’s a travesty because this outcome is not inevitable. It’s a travesty because we know what’s causing it, we know what the potential harm is and we do nothing to stop it" stevebheadteacher.wordpress.com/2025/09/30/d...

Long Covid Risk for Children Doubles After a Second Infection, Study Finds www.nytimes.com/2025/09/30/h...

We are pleased to share that our full witness statement is now available online. You can read the statement ,and associated documents that were highlighted during evidence today. Go gently. www.longcovidkids.org/uk-covid-inq... #CovidInquiry #Statement

Interesting to see that the study states: "The unit's professional approach is guided by the UK NICE guidelines of 2021" Though no such care yet exists in the UK, despite the NICE guidelines.

⚠️ No parent should ever be in this position, no child should be refused healthcare. If the truth had been shared with the general public, we wouldn’t have been left without support. Module 8. U.K. COVID Inquiry @longcovidkids.bsky.social #CovidInquiry #LongCovidKids #Parenting

“Had the UK followed the same strategy and achieved the same excess cumulative death rate by March 2024 as South Korea, 69 instead of 344 deaths per 100,000, it might have prevented up to 180,000 UK deaths.” bmjgroup.com/failure-to-f...

Today @larawong.bsky.social gives evidence at the #CovidInquiry, sharing the voices of children in Clinically Vulnerable Families. Alongside, we launch our new report: Children & Young People in Clinically Vulnerable Families. No child should ever choose between #educationANDlives.

How in the year 2025 are researchers still using the Fukuda criteria? 🤦🏻‍♀️ Whenever you see a new #MECFS study always check how they select ME patients. Fukuda’s giant flaw 👇

Interviewer: "You have said that Reform's policies are racist. Do you think Reform voters are racist?" MP: "People vote for numerous reasons. I'd ask those supporting obviously racist policies to question in themselves how they justify supporting racist policies if they don't support racism". 5/

Today is the first day of the UK Covid Inquiry for Children and Young People. We will be represented by our barrister, Sangeetha Iengar @gardencourtlaw.bsky.social We wish Sarah Hannet KC well, having tested positive for COVID-19 she will be isolating at home. #COVIDInquiry #LongCovidKids

do people not realise that everyone already legally has to prove right to work in this country, using a combination of ID forms, and any job that currently skirts the law in this is just… gonna keep doing that

I struggle with pacing every damn day of my life. But like everyone else with ME, I have no choice - if I don’t do it, my illness gets worse, sometimes permanently. Pacing is a deeply tedious management strategy but until there’s more proper research, it’s pretty much all we have.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PASC

happy anniversary to me. i ask folks who aren't affected to sit with the discomfort of knowing that your life can be taken away from you at any moment. that there are things you can to to protect yourself, and to help those who are already suffering. and that we need your solidarity more than ever.

An @Age-Uk.bsky.social report shows healthy life expectancy has fallen by 2 years. Good food, warm homes and active and purposeful lives are out of reach for far too many in the UK — and it is a matter of emergency. #PublicHealth | #HealthJustice

I've always found it really hard to explain #AutonomicDysfunction in everyday life without it just getting too complicated, longwinded, or missing things. So here's a card that explains it for us! They arrived today, and are now in our shop, www.stickmancommunications.co.uk/autonomic-dy...

We've got all six books on @thebookerprizes.com shortlist free to download, and on DAISY CD and USB. 📚 Thanks to publishers @penguinrandomhouse.bsky.social, @faberbooks.bsky.social and @hachetteuk.bsky.social for their donations! Join our Library to download or borrow: https://rnib.in/TalkingBooks

Trump: "We've got a lot of stupid people in this country running things."

Harry had heard of Long Covid before but didn’t think he would get it because he had heard that ‘children don’t get badly ill’ from Covid. Before catching Covid in September 2021, Harry enjoyed activities and sports. Listen to Harry: www.hexi.ox.ac.uk/Family-exper... #COVIDInquiry #LongCovidKids

Jasmine is 16. She first caught Covid in Aug 2020. She took a couple of wks off school but found she couldn’t manage going back. After 1yr, she went back to school on a reduced timetable - after 2wks caught Covid again -her symptoms got worse. bit.ly/4nF3vu5 #CovidInquiry #LongCovidKids #Pandemic

Abigail, age 13, wished there was a factsheet about #LongCovid. "With my ADHD diagnosis I could ask the questions and they would answer my questions, with Long Covid diagnosis, they were asking me the questions, I am not used to that, it was really scary" www.hexi.ox.ac.uk/Family-exper...

It never sinks in how completely miserable life with chronic illness. Medicine is completely delusional about it. Their descriptions are so far off the mark it's pathetic. I keep reading dystopian scenarios that I would trade for in a heartbeat. People have no idea how miserable this is.

Once you've disappeared by means of chronic illness, disability, lack of access, and general ostracization due to your situation, nobody will hear you because who listens out for those missing from the table? Inclusion is a decision, and so is exclusion. #Writing #Comics #Art #Disability #EDI

One of the worst articles I have read on assisted dying, and exemplifies why I am against the Bill currently going through parliament. Miscomprehension and oversimplified opinion on what others' lives are like to live, are rife.

❗ 14 MILLION people are facing hunger and hardship in the UK. In 2025. In one of the richest countries in the world. We don’t need more food banks – we need change. Repost if you agree.

Play is not frivolous. It is essential — for children’s physical and mental health, for developing independence, for learning to take and manage risks. That’s why I back a play sufficiency duty in planning, to secure and protect spaces for play. #RightToPlay #HealthyCommunities

I need you to understand what this country feels like right now for those of us who look different. I'm sitting here, trying to plan for Saturday, make sure I don't even need to go to the corner shop for milk, like it's Christmas Day or lockdown. Why? Because I live near where Yaxley-Lennon will 1/

🫶 HIV went from a death sentence to a manageable chronic disease. 🫶 We are getting closer to a cure. 🫶 We can prevent babies from getting HIV. This progress took decades of relentless research by brilliant & motivated researchers. Cutting funding now is both reckless and immoral.

Great to see a UK GP writing a BMJ e-letter like this: "Research must consider Post Exertional Malaise as a neurological event underpinning fluctuating cognitive dysfunction in Long Covid" www.bmj.com/content/390/... #PEM #LongCovid

BUT they have also advised that they need you—as constituents—to keep writing in. To make it easy, we have a template letter here: docs.google.com/document/d/1... Please share this post far and wide, and encourage others to do the same. Together, let’s get writing! #ScrutinyDebateVote

Starting a thread of online/ virtual art and writing events happening this autumn. Drop them below and I'll share! #writing #art #Comics #Disability #VirtualEvents #DisabledArtists #DisabledWriters #ChronicIlness

AN EMERGENCY ALERT FOR GOVERNMENT ⏰This weekend saw hundreds queuing to access dental care. ⏰Unmet need for NHS dentistry now stands at 14 million. ⏰1 in 4 of those unable to to secure care attempt 'DIY' dentistry We need fair funding and real reform.

The APPG for Access to Disability Equipment has a short survey on barriers to accessing community equipment. If you have something to say on this please complete the survey here www.surveymonkey.com/r/9Q3KFVR

#Paediatric Long Covid must not be overlooked, especially when it comes to current and future #SEND support. I hope this contribution will help the Committee consider the real impact of this new childhood disease on #education and #support systems. #LongCovidKids

www.science.org/doi/full/10.... Mandating Indoor Air Quality in Public Buildings. Our paper in Science. 🧪 #healthpolicy

#KeepCovidBoosters Can you help our petition to grow? We have had support across the country! Ask your loved ones to help you by signing. 👪Kids can sign too - if they like! 🇬🇧Brits abroad 👷‍♀️& UK residents Link on next page!

Save the date! Saturday 4 October is a Black British Folk Renaissance and you are invited. I’ve nurtured this idea for a few years now, so I’m thrilled that @efdss.bsky.social will be hosting it at @cecilsharphouse.bsky.social See you there! 🖤 www.efdss.org/whats-on/26-...