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longcovidadvoc.com
Long Covid Advocacy
@longcovidadvoc.com
16K followers 5.3K following 1.7K posts
A non-profit social enterprise dedicated to people with Long Covid + ME. Shifting the paradigm one step at a time...

💙📚Home to the #pedanticzebra book club.

https://www.longcovidadvoc.com/

🛍️ https://longcovidadvoc.shop/
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longcovidadvoc.com
Long Covid Advocacy @longcovidadvoc.com · Apr 22
👋 Welcome to our Master Thread 🧵
We’re here to shift the paradigm for #LongCovid + #ME 🖖
This is our low down in what we do, what we offer and why it matters.

Our 1st principles:
⚖️ Legislate
🔍 Investigate
💨 Ventilate
📚 Educate

Let’s go 👇 1/18
A bold dark navy banner featuring the acronym “L.I.V.E.” in large white capital letters, each separated by a colorful dot (pink, purple, blue, cyan). Below, the words spelled out in matching colors: “LEGISLATE. INVESTIGATE. VENTILATE. EDUCATE.” The design is modern, punchy, and professional—reflecting a strong advocacy brand.
longcovidadvoc.com
🔬🧠Brain‑training games for LC cognitive dysfunction? The RECOVER‑NEURO trial shows they don’t address the underlying pathology. Games can’t fix inflammation, microvascular issues, or neuro‑immune dysfunction - we need interventions that understand the biology not candy crush 🍭
November 10, 2025 at 9:25 PM
longcovidadvoc.com
We continue to see lessons about post-acute viral illness not learned.

We never see warnings about those who will have long-term sequelae.

'Long Flu' has been dismissed as 'not a thing' by some Drs.

But ME can be triggered by a wide range of viruses.
www.bbc.co.uk/news/article...
New flu virus mutation could see ‘worst season in a decade'
Leading flu experts say they will not be surprised if this year's is the worst flu season for a decade.
www.bbc.co.uk
November 9, 2025 at 6:06 PM
longcovidadvoc.com
Exulansis -the moment you simply give up trying to explain the in‑between.

📖 This article gives voice to the silent struggle of families living with #LongCovid, where recognition, care and empathy often fail them.

www.longcovidadvoc.com/post/exulans...
Exulansis - The Gulf of Understanding
An Ongoing Battle for Adequate Treatment and Care: The Impact of Long Covid on Families' by Marianne Lynch.
www.longcovidadvoc.com
November 8, 2025 at 3:41 PM
longcovidadvoc.com
🧵 Important new study out in Cell Reports Medicine (Shahbaz et al. 2025):
👉 Long Covid with ME/CFS isn’t the same in women and men - biologically.
👉 And it’s not “fatigue.” It’s immune, hormonal, and neurological chaos.

Let’s break it down layperson style 👇
A young woman sits on the edge of her bed in a slightly cluttered room decorated with string lights. She is wearing a tank top and shorts and looks pensive or unwell. The text on the image reads "LATEST RESEARCH," "LONG COVID," "SEX SPECIFIC DIFFERENCES," and below the image, "Long COVID patients with ME/CFS show sex-specific immune, hormonal, and neuroinflammatory disruptions, with women exhibiting stronger inflammation, gut dysfunction, cognitive gene changes, and lower testosterone/cortisol." The source is listed as "Shahbaz et al 2025, Cell."
November 8, 2025 at 11:47 AM
longcovidadvoc.com
🔥This is a killer quote by @tinywriterlaura.bsky.social in 'Awakened':

👉denoting when the CDC 'renamed' ME to CFS in 1988 after the outbreak in Lake Tahoe.

#pedanticzebra
Text in image: 'Pedantic Zebra Bookclub. I've always hated the name chronic fatigue syndrome for its total manipulation of perception. Myalgic encephalomyelitis described the intense pain of its sufferers, and recognised Ramsay's discovery of brain inflammation at the onset of illness in a number of his patients. These patients, like my mother, weren't simply fatigued; they were incapacitated by the most basic exertion. Laura Elliot, Awakened. #pedanticzebra LONG COVID ADVOCACY' Below the text is a stylized, dark image of a crow with bright blue eyes, partially obscured by the text. A large blue/purple circle is in the upper left corner. A logo of a purple hand is in the bottom right corner above the text "LONG COVID ADVOCACY".
November 7, 2025 at 7:03 PM
Reposted by Long Covid Advocacy
bmhughes.bsky.social
Many thanks to @davetuller1.bsky.social for the chance to chat about my book and its resonance with #MECFS, #LongCovid, and the war on disabled people

(For those interested in reading more, pls check here: link.springer.com/book/10.1007...)
Interview with Brian Hughes, professor of psychology and University of Galway in Ireland.
YouTube video by David M Tuller
www.youtube.com
November 6, 2025 at 1:43 PM
longcovidadvoc.com
🗞️PRESS RELEASE:
UK Workforce Strategy by Sir Charlie Mayfield Overlooks Long Covid, Ignoring Serious Public Health and Economic Risks.
🖇️
tinyurl.com/2rewc475
UK Workforce Strategy Overlooks Long Covid, Ignoring Serious Public Health and Economic Risks
The government’s...
tinyurl.com
November 5, 2025 at 3:23 PM
longcovidadvoc.com
1️⃣ 🧵 NEW: The government’s Keep Britain Working report claims to tackle the UK’s crisis of ill health & economic inactivity.

But it never mentions Long Covid.
Not once.
Not the pandemic either.

That’s not a small oversight — it’s a fundamental flaw. Let’s unpack why 👇
🔗 www.gov.uk/government/p...
Keep Britain Working Review: Final report
Keep Britain Working is an independent review of the role of employers in tackling health based economic inactivity and promoting healthy and inclusive workplaces.
www.gov.uk
November 5, 2025 at 1:22 PM
longcovidadvoc.com
Anita is attempting to walk 140 miles by the end of December with Long Covid.

Whilst the motivation is admirable we are seriously concerned about the impact on her health, as she is describing symptoms of PEM.

www.bbc.co.uk/news/article...
'I have long Covid, but some say it isn't real'
Anita Widdowson says she battles with her symptoms every day, and is unable to work or study.
www.bbc.co.uk
November 3, 2025 at 1:49 PM
longcovidadvoc.com
There are 2 articles in the Guardian:
1️⃣ stating that exhaustion is at EPIDEMIC levels
2️⃣ "The UK’s productivity crisis is one of the biggest challenges facing our economy and long-term health conditions in the workforce are a major factor in this"

🤦‍♀️Neither mentions #LongCovid
UK to lose 600000 workers to illness without better health support at work Tired all the time? There may be a simple reason for that Levels of fatigue among women in Britain are soaring, and this isn’t the kind that can be cured by a nap. What lies behind the exhaustion epidemic?
November 2, 2025 at 5:15 PM
longcovidadvoc.com
👋 Community Help!
Compiling good sources that were countering the GET/CBT narrative in ME before 2012.
Any suggestions?! Can be papers, media, advocates, doctors.
#pwME #MEcFS #longcovid

Any boosts appreciated - 💙🔄 💬
November 2, 2025 at 4:58 PM
Reposted by Long Covid Advocacy
thesicktimes.org
We're kicking off our biggest fundraiser of the year by participating in NewsMatch, a national campaign to support newsrooms across the US run by the Institute for Nonprofit News.

We need your help to keep telling #LongCOVID stories. Will you donate today? the-sick-times.fundjournalism.org/donate/
ID 1: Purple background with white text reads: Your support powers every Long COVID story we tell. DONATE TODAY. The Sick Times + NewsMatch. ID 2: Purple background with white text reads: New donations (followed by a thermometer reaching $60K). New monthly supporters (followed by a thermometer reaching 200). Until December 31, NewsMatch and the Philanthropic Access Partner Fund will match new donations from our readers, up to $1,000 a person! At the bottom is a graphic showing how financial impact is doubled. ID 3: Purple background with white text reads: In spring 2024, we were lucky to receive a grant that has funded much of our work over the last two years. But that grant concludes this fall. We’ll be honest: we really need more reader support to help keep operating in 2026. The Sick Times + NewsMatch. ID 5: Purple background with white text reads: Other ways to support us. We understand that many people in our community aren’t able to donate. This is why we’ll never have a paywall — our stories will always be completely free to read. If you aren’t in a position to donate yourself, here are a few ways you can help: Share this email/this post with a friend/family member Tell us why you find our work valuable Send us any ideas you have for potential funding sources / connect us with potential funders
November 1, 2025 at 2:39 PM
Reposted by Long Covid Advocacy
erictopol.bsky.social
We've just launched the first large, site-less (home, direct to participant) randomized trial for treatment of #LongCovid, testing tirzepatide (a GLP-1 drug) vs placebo. Please help spread the word
www.scripps.edu/news-and-eve...
Scripps Research scientists launch new digital clinical trial to test repurposed drug for long COVID symptom relief
www.scripps.edu
October 31, 2025 at 5:07 PM
longcovidadvoc.com
🎃 HALLOWEEN SPECIAL 🎃

Our shop has been tootling away & a huge thank you to those who have supported it!

🖇️
longcovidadvoc.shop
Image showing a Halloween special offer from Long Covid Advocacy. At the top, the logo reads LONG COVID ADVOCACY. Below this, in large, bright pink neon text is the offer: FREE DELIVERY. The middle of the image features three carved Halloween pumpkins (jack-o'-lanterns) with different smiling faces. Below the pumpkins, there is a line of pink text: ALL PROFITS TO RESEARCH! The next line reads: Halloween spesh offer open all weekend. Underneath that, in smaller pink text, is the duration: FRI - SAT - SUN. At the bottom right, the website address is listed: longcovidadvoc.shop. In the bottom left corner, there is a small photo of a man with a white beard wearing a black t-shirt.
October 31, 2025 at 12:03 PM
Reposted by Long Covid Advocacy
tomkindlon.bsky.social
UK Covid Enquiry, article in The Mirror newspaper
www.mirror.co.uk/news/uk-news...

Screenshot from latest Chronic Living Therapy @chronicliving123.bsky.social e-newsletter
chroniclivingtherapy.com/5-elsewhere-...

#LongCovid #LongCovidKids #LCKids @longcovidadvoc.com @lammasleaves.bsky.social
UK Covid Enquiry, article in The Mirror newspaper The Mirror published an article on children and the Covid Inquiry currently taking place in the UK, featuring activists and people with experience of pediatric Long Covid as well as expert critics of the school closure implementations. Our friends from Long Covid Advocacy are amongst families and activists quoted in the article. Their spokesperson is quoted saying: ‘The government’s failure to prepare schools for Covid-19 wasn’t accidental – it was ideological. When Boris Johnson compared Long Covid to ‘Gulf War Syndrome,’ he exposed a belief system that dismissed biological illness as psychologically influenced. That same mindset drove policies that left children unprotected, unresearched, and unheard.’ Claire Every, spokesperson for Long Covid Advocacy, quoted by The Mirror newspaper
October 29, 2025 at 6:42 PM
longcovidadvoc.com
We've signed. It's long past time when N95s should be the norm not the exception.

Patients & staff deserve to be protected & safe.
October 29, 2025 at 2:37 PM
longcovidadvoc.com
🗞️Extract from Washington Post interview with @philippullman.bsky.social

🖋️It's still concerning the impact #LongCovid is having on writers.

🔥PEM, fatigue, pain & cognitive dysfunction are brutal companions for this vital profession.

🖇️
www.washingtonpost.com/books/2025/1...
Cover of the book The Rose Field, The Book of Dust, Volume Three by Philip Pullman. The cover art shows a camel and rider silhouetted against a dramatic, cloudy, orange and yellow desert sky. In the lower right corner, there is a quote from the author that reads: "Was this one more of a struggle than previous books? Yes, for several reasons, not the least because it's longer. I didn't want it to be long - I wanted it to be a nice little short book - but somehow it grew and grew and grew. Another reason is, of course, I've got to tie up all the different threads, to get them all knotted together. And the third reason is simply that I'm older. I've always written by hand, three pages a day - about a thousand words every day, but this book was more difficult because covid came along, and it's left its mark on me. I'm tired all the time. My hands hurt. In fact, my wrists hurt so much I can't hold the pen very easily anymore. So I couldn't write this one by hand as I had for the
October 26, 2025 at 1:03 PM
longcovidadvoc.com
🐦‍⬛More fantastic M.E. representation in 'Awakened' by @tinywriterlaura.bsky.social our autumn 🍂 read for the #pedanticzebra book club

#booksky
Dark blue graphic with a quote in pale pink and cyan text that reads: “They called the illness postviral, which meant a number of different things depending on who you asked. For most people, it simply meant that you'd been sick with something and it was taking too long to get better. For others, it meant that you were crazy, or lazy, or perhaps neither of these things, but at any rate that you weren't really sick. Some doctors thought she'd get better. Some didn't. Some listened to her and ordered blood tests that never found anything. Some wouldn't even go that far.” — Laura Elliot, Awakened. Design elements include the header “Pedantic Zebra Bookclub,” a stylised blue-purple gradient circle, and a black crow illustration near the bottom. The Long Covid Advocacy logo appears in the lower right corner with the hashtag #pedanticzebra.
October 24, 2025 at 7:15 PM
longcovidadvoc.com
🔥
cvcev.bsky.social Clinically Vulnerable Families 💙💜💗 @cvcev.bsky.social · 18d
CVF💙💜💗's Closing Statement

⚠️SAFETY
- Schools must be made safe.

👩‍🏫SUPPORT
- Children must be given appropriate support to continue their education at home.

🛡️STATUS
- Clinical Vulnerability must be recognised as a distinct group in the Equality Act.

1/
@adamwagner1.bsky.social KC
October 24, 2025 at 9:10 AM
longcovidadvoc.com
Excellent article by @martin.bagot.bsky.social that covers:

👉 How severe #LongCovid can be in children
👉 The existing culture that assumes psychological influence in poorly understood illnesses - like GWS & M.E

Thank u to all who shared their story #covidinquiry
🖇️
www.mirror.co.uk/news/uk-news...
Claire Every, spokesperson for Long Covid Advocacy, said: "The government's failure to prepare schools for Covid-19 wasn't accidental - it was ideological. When Boris Johnson compared Long Covid to 'Gulf War Syndrome,' he exposed a belief system that dismissed biological illness as psychologically influenced. That same mindset drove policies that left children unprotected, unresearched, and unheard."
October 22, 2025 at 7:10 PM
longcovidadvoc.com
🗞️Excellent article about Johnson at the #CovidInquiry @thecanaryuk.bsky.social

Covers:
👉 Neglected voices of children
👉 Downplayed dangers
👉 Rooted in psychosomatic culture of M.E
👉 Need for air filtration & prevention
Bolshie Boris evades answers in Covid inquiry as young people take him to task
"Johnson’s contempt for the truth is written in the bodies of our children" - Johnson faces children and young people with Long Covid
www.thecanary.co
October 21, 2025 at 5:59 PM
longcovidadvoc.com
@martin.bagot.bsky.social on the Covid Inquiry, LCA featured

"Inquiry chair Baroness Hallett has described the impact on children as "severe and, for many, long-lasting", and the Long Covid Advocacy group has called Mr Johnson's actions as a "failure"

Full article👇
www.mirror.co.uk/news/politic...
A screenshot of an online news article from The Mirror with the headline "Long Covid Advocacy call for inquiry on long-term disability" written by Martin Bagot. The article text states: "Long Covid Advocacy warns Mr Johnson’s government’s failures contributed to delayed diagnoses, disrupted education and devastating isolation for affected children. The organisation is calling for the Inquiry to hold political leaders accountable for the long-term disability crisis it says is now affecting thousands of UK families. It points to Office for National Statistics data showing one in 165 children and young people, - 72 000 individuals - reported Long Covid symptoms after a second Covid-19 infection. Dr Rupert Higham, of the Institute of Education at University College London, said: 'Johnson’s contempt for the truth is written in the bodies of our children. We’re not interested in apologies. Children and young people deserve justice, recognition, and change. That means accountability for the past and prevention for the future.'"
October 21, 2025 at 12:14 PM
Reposted by Long Covid Advocacy
longcovidadvoc.com
Boris Johnson Faces COVID Inquiry as Long Covid Children Demand Recognition and Accountability.

He's called Long Covid:
👉 B*ll*cks
👉 Made up like "Gulf War Syndrome"

It's time for answers...

Our #PressRelease:
www.longcovidadvoc.com/borisjohnson...
Johnson's contempt for the truth is written in the bodies of our children. We're not interested in apologies - children and young people deserve justice, recognition, and change. That means accountability for the past, and prevention for the future. Dr Rupert Higham, University College London, Institute of Education. The text is presented on a dark purple/blue background with a bright pink and blue vertical gradient line on the left. The top banner reads: BORIS JOHNSON AT THE COVID-19 INQUIRY. The bottom right corner has the LONG COVID ADVOCACY logo.
October 21, 2025 at 5:45 AM
Reposted by Long Covid Advocacy
rfh1955.bsky.social
August 1995, Daily Telegraph.
October 21, 2025 at 8:14 AM
longcovidadvoc.com
Boris Johnson Faces COVID Inquiry as Long Covid Children Demand Recognition and Accountability.

He's called Long Covid:
👉 B*ll*cks
👉 Made up like "Gulf War Syndrome"

It's time for answers...

Our #PressRelease:
www.longcovidadvoc.com/borisjohnson...
Johnson's contempt for the truth is written in the bodies of our children. We're not interested in apologies - children and young people deserve justice, recognition, and change. That means accountability for the past, and prevention for the future. Dr Rupert Higham, University College London, Institute of Education. The text is presented on a dark purple/blue background with a bright pink and blue vertical gradient line on the left. The top banner reads: BORIS JOHNSON AT THE COVID-19 INQUIRY. The bottom right corner has the LONG COVID ADVOCACY logo.
October 21, 2025 at 5:45 AM