Long Covid Advocacy
LightNews LightNews
banner
longcovidadvoc.com
Long Covid Advocacy
@longcovidadvoc.com
16K followers 5.4K following 2K 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/
Posts Replies Media Videos
Pinned
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
We are off on our Christmas break until January - to restore, recharge & eat too many mince pies!

Wishing the community a peaceful & restful holiday ❄️

Thank you to all who have been there for others 🕯️
A detailed Christmas wreath with frosted green pine boughs and clusters of bright red berries, tied at the top with a sparkly red ribbon. Below the wreath, in a dark green font, are the words "HAPPY CHRISTMAS" followed by "Long Covid Advocacy" in a lighter green script.
December 12, 2025 at 8:01 PM
longcovidadvoc.com
🐯We are full of "big cat" energy in our reading of Year of the Tiger in memory of Alice Wong.

It's iconoclastic, fun and incisive as a laser beam.

🖇️👇to join us on Fable
tinyurl.com/3r2ctufh

#pedanticzebra #bookclub #booksky
Alice Wong, an East Asian woman with dark hair and a tracheal tube, sits in a power chair, wearing a blue sweater and red lipstick, holding her book "Year of the Tiger: An Activist's Life" against a dark background with a purple-to-blue circular gradient behind her head. Above her is the text, "For the disabled oracles out of time I join you in the choir of our wisdom."
December 12, 2025 at 7:03 PM
longcovidadvoc.com
💙 What a shift from @loosewomen.bsky.social 👏

We wrote to them to counter their mocking tones towards Violet Affleck masking.

💙 Here we have Judi Love saying "protect yourself, protect others" in support of masking.

💙 Hope your family recovers soon Judy.
December 12, 2025 at 3:16 PM
longcovidadvoc.com
❌ Punitive Attendance Policies are unlawful discrimination.

👉 They breach the Equality Act ignore DfE guidance, and are a safeguarding & public health issue.

Schools should not punish children for illness especially during a flu surge.

What we received today 😓👇
A screenshot of a school announcement titled "Detentions" and dated "Dec 11 2025". The text reads: "Please make sure detentions are attended on the day they are set or they will be escalated. The criteria for attending Prom will be announced after Christmas but will include: attending detentions on the day set, attendance being over 95% and positive behaviour." The last part of the sentence, "attendance being over 95% and positive behaviour," is highlighted with a transparent red underline.
December 11, 2025 at 5:40 PM
longcovidadvoc.com
🧵PUBLIC HEALTH SHOULD NOT BE A CULTURE WAR

😷 It’s bizarre watching politicians, like Kemi Badenoch perform trauma around masks while millions live with the reality of not masking; death, disability, ME, Long Covid.

The Guardian are asking for opinions on masking 🖇️👇 /1
December 11, 2025 at 9:56 AM
longcovidadvoc.com
❄️ This winter’s flu & Covid surge is exposing how we need effective public health leadership.

We’ve sent an updated open letter to @greenparty.org.uk calling for bold, evidence-based leadership on Long Covid, ME & prevention.

Read it here 👇

@zackpolanski.bsky.social @adrianramsay.bsky.social
Open letter graphic from Long Covid Advocacy addressed to Zack Polanski and Adrian Ramsay of the Green Party. The page has a purple and blue header and footer with the Long Covid Advocacy logo. The body text congratulates the Greens and urges bold systemic reform for infection-associated chronic illness, including Long Covid and ME. It highlights fragmented services, disbelief, post-viral care inequality, and rising ME cases after Covid. Bulleted priorities include co-produced trauma-informed NHS care, evidence-based medical education, biomedical research and RECOVERY-style trials, centres of excellence, and public health leadership on clean air, infection control, vaccination, and equitable access to care. The letter calls for restoring hope, justice, science, and compassionate health reform for disabled and chronic illness communities.
December 10, 2025 at 12:05 PM
longcovidadvoc.com
🙏Thank you for listening Visible and for prioritising patient safety.
💙 This is ace trauma-aware governance.
💪 When digital health treats UX as curated space and epistemic harm as real, we all move forward - and Visible becomes an even stronger community partner.
Text from an email titled "Building Visible, Harry here" that addresses concerns raised by the ME community regarding the 'Clinical Trials Near You' feature in the Visible app. The sender, Harry, acknowledges they "got something wrong" by scraping clinicaltrials.gov without proper vetting, which led to the tacit endorsement of a researcher, Trudie Chalder, whose views are harmful to the ME community. The email explicitly states that Visible does not endorse or partner with Trudie Chalder, and they reject her work on Graded Exercise Therapy (GET), calling it a "harmful narrative" that has been "rightly debunked." The email announces that they have temporarily turned off the Clinical Trials Near You feature to review all trials and "build the necessary guardrails," and they are exploring a mechanism to support community moderation of trials. The closing paragraph thanks the community for holding them accountable.
December 9, 2025 at 4:19 PM
longcovidadvoc.com
💌 Excellent letter by
the Minister for Children & Families @joshmacalistermp.bsky.social to @washable95.bsky.social that recognises that Covid is airborne

We just need @ashleydaltonmp.bsky.social & the DHSC to do the same & ensure schools are safe with air filters that:
⬆️ performance
⬆️ attendance
Text from a letter dated 30 October 2025 to Ian Murray MP. The letter addresses a previous correspondence regarding clean air in schools. The letter is from the Minister for Children and Families. The content details the department's efforts to reduce school absence by promoting good ventilation to reduce the risk of airborne respiratory illness (including COVID-19, flu, and strep A). Key actions include: * Delivering over 700,000 CO2 monitors to over 45,000 education settings (September 2021–April 2023). * Providing over 9,000 air cleaning units to over 1,300 settings with sustained high CO2 readings (January 2022–April 2023). The letter also states that there are no current plans to centrally fund air cleaning units, but schools can purchase them. It provides two GOV.UK links for recommended specifications and guidance on using CO2 monitors and air cleaning units. It also emphasizes that air cleaning units are not a substitute for fresh air. A red arrow points to the text: "reduces the risk of airborne respiratory illness (including COVID-19, flu, and strep A) and can improve pupils’ alertness and concentration."
December 9, 2025 at 12:13 PM
Reposted by Long Covid Advocacy
kirsties.bsky.social
Very concerning development given the history with these characters who continue to attempt to offer psychological interventions for a physical biomedical illness.
I hope Visible take our concerns seriously.
Thank you @longcovidadvoc.com for raising this.
longcovidadvoc.com Long Covid Advocacy @longcovidadvoc.com · 28d
1️⃣ Visible Health has launched a local clinical trial feature. One of the first surfacing to users is an ACT (Acceptance & Commitment Therapy) trial led by Trudie Chalder, a researcher whose work has been highly controversial in ME. This raises important patient-safety concerns.
December 8, 2025 at 1:52 PM
longcovidadvoc.com
1️⃣ Visible Health has launched a local clinical trial feature. One of the first surfacing to users is an ACT (Acceptance & Commitment Therapy) trial led by Trudie Chalder, a researcher whose work has been highly controversial in ME. This raises important patient-safety concerns.
December 6, 2025 at 8:07 PM
longcovidadvoc.com
🗞️ On Relationships & illness

"One of my friends did say to me: ‘This is quite savage, but if I was one of his friends I’d be telling him to think twice before proposing to you, because if this lasts for ever then your relationship will be different for ever." - Jess with #longcovid

🖇️👇
December 6, 2025 at 2:50 PM
longcovidadvoc.com
The recordings are up for our interview, On ME Representation, with the brilliant @tinywriterlaura.bsky.social author of Awakened. #pedanticzebra
🖇️ 👇
🍿 Clip: They'd Steal Sleep to Make More Money
December 5, 2025 at 7:34 PM
longcovidadvoc.com
We are happy to support @apresj20 by being a signatory on their open letter to the damaging op-ed in Le Mondeo that advocates & pushes a psychosomatic view of biological disease.
apresj20.bsky.social #ApresJ20 - Association Covid Long France @apresj20.bsky.social · Dec 5
📢Opinion piece: “A Parallel Science of Symptoms: A Dangerous Impasse for Patients”

🤝Over 130 international signatories among which 30 professors and senior investigators (some 50 physicians) and more than 30 representatives of patients’ advocacy groups in France and abroad!
Le Monde “Creating a parallel science of symptoms would lead doctors to exempt themselves from searching for organic causes.” In an op-ed in Le Monde, a group of experts and patients warn against the consequences of such a system in the treatment of patients. Published today at 12:30 p.m. | O Reading time: 4 min.
December 5, 2025 at 1:56 PM
longcovidadvoc.com
It's International Day of Persons with Disabilities.

To mark this we are looking at ways to help those house-bound or bed-bound with Long Covid or chronic illness with vital screening & testing. 🇬🇧 /1
🧵👇
December 3, 2025 at 1:42 PM
longcovidadvoc.com
How the writing of Tom Stoppard was a catalyst for a medical breakthrough.

A demonstration of the fluidity of metaphor, creativity & insight.
An opinion piece titled "Saved by Stoppard" by Michael Baum. Baum recounts seeing the first production of Tom Stoppard's play "Arcadia" in 1993. During the interval, he had a "Damascene conversion." As a clinical scientist studying breast cancer, he was operating on the assumption that it grew linearly. In Act I of the play, Thomasina asks her tutor, Septimus: "If there is an equation for a curve like a bell, there must be an equation for one like a bluebell, and if a bluebell, why not a rose?" Baum explains that with that, Stoppard explains chaos theory, which better explains the behavior of breast cancer. The hypothesis that cancer must have already scattered cells into circulation before diagnosis led to the birth of "adjuvant systemic chemotherapy," which caused a "striking fall of the curve that illustrated patients' survival." The piece concludes, "Stoppard never learnt how many lives he saved by writing Arcadia." Michael Baum is identified as Professor emeritus of
December 2, 2025 at 5:40 PM
longcovidadvoc.com
🐯 Ready for some big cat energy?

Here's What You Can Expect from Year of The Tiger by Alice Wong🧵/1
Alice Wong, a disabled Asian woman, is sitting in her wheelchair outdoors, holding up her book, "Year of the Tiger: An Activist's Life." The book's cover is yellow with a red tiger graphic. Next to her is a digital mock-up of the book cover, and text promoting the Pedantic Zebra Bookclub, stating: "Our Winter Book – is fierce and unforgettable, a memoir that roars with activism, vulnerability, joy, and the unapologetic brilliance of disabled life." The image includes logos for "Pedantic Zebra Bookclub" and "Long Covid Advocacy."
November 30, 2025 at 12:12 PM
Reposted by Long Covid Advocacy
tinywriterlaura.bsky.social
less than an hour to go until this one, friends in my phone! ☺️
longcovidadvoc.com Long Covid Advocacy @longcovidadvoc.com · Nov 28
💙📚We're excited to be going live with Laura Elliott @tinywriterlaura.bsky.social this evening at 7pm!
Any questions let us know!
🖇️👇
Bookclub Pod flyer with a dark purple background and bright blue and magenta accents. The title "Pedantic Zebra Pod" is prominent in a bright blue font. Below it, the episode details read "03. On ME Representation Delve into the dystopian debut 'Awakened' with author Laura Elliott." A circular headshot of a white wohttps://youtube.com/@longcovidadvoc?si=KXey0ZhpHT1agtVMman with short red hair and a slight smile is shown on the left. On the right, a bright magenta circle highlights the date and time: "FRIDAY 28 NOV At 7 PM GMT." The bottom of the flyer shows logos for LIVE, X, YouTube, and Facebook, and says "Hosted By: LONG COVID ADVOCACY."to
November 28, 2025 at 6:15 PM
longcovidadvoc.com
💙📚We're excited to be going live with Laura Elliott @tinywriterlaura.bsky.social this evening at 7pm!
Any questions let us know!
🖇️👇
Bookclub Pod flyer with a dark purple background and bright blue and magenta accents. The title "Pedantic Zebra Pod" is prominent in a bright blue font. Below it, the episode details read "03. On ME Representation Delve into the dystopian debut 'Awakened' with author Laura Elliott." A circular headshot of a white wohttps://youtube.com/@longcovidadvoc?si=KXey0ZhpHT1agtVMman with short red hair and a slight smile is shown on the left. On the right, a bright magenta circle highlights the date and time: "FRIDAY 28 NOV At 7 PM GMT." The bottom of the flyer shows logos for LIVE, X, YouTube, and Facebook, and says "Hosted By: LONG COVID ADVOCACY."to
November 28, 2025 at 12:07 PM
longcovidadvoc.com
💫Why it is vital that PUBLIC MITIGATIONS to protect people from infection are a priority.
#cleanair
Smiling woman in a pink sweater and green apron presenting text on a dark blue background. The text, titled "The Economic Argument," states, "The NIHR warns average loss of earnings is: £10929 per year." Below the image, in large pink letters, is the question, "CAN YOU AFFORD TO GET LONG COVID?" In the top right corner is the logo for Long Covid Advocacy.
November 27, 2025 at 3:21 PM
longcovidadvoc.com
🧵1️⃣ It’s UK Budget Day - so here’s a budget #RachelReeves hasn’t announced: a proper Long Covid Budget. We've estimated the real economic burden of Long Covid at £12-15 BILLION A YEAR.

At a £ a minute that puts us back in 26,500 BC - the Late Upper Paleolithic 😳
#Budget2026
November 26, 2025 at 11:18 AM
longcovidadvoc.com
🧵#CLoCK Update
New paper released on #longcovid paediatric fatigue that demonstrates UK research culture has not made the vital steps needed to meet need or understand the disease.
Let's critically assess the issues:
/1
November 25, 2025 at 8:01 PM
longcovidadvoc.com
📺 Exciting News!
We will be talking to author Laura Elliott aka @tinywriterlaura.bsky.social about ME representation & more in her debut 'Awakened'.

Think Zombies, Tower of London, Neural Chips, Billionaires, the Apocalypse & a slice of ME.

Livestream & recordings 🖇️👇
Digital poster for the 'Pedantic Zebra Pod' book club event featuring author Laura Elliott, hosted by Long COVID Advocacy. The main title is 'Pedantic Zebra Pod' in large, bright blue text. The event is Episode 03, titled 'On ME Representation', where they will "Delve into the dystopian debut 'Awakened' with author Laura Elliott." A circular headshot of Laura Elliott, a white woman with short, reddish-orange hair, smiling, is featured on the left. On the right, a bright blue oval highlights the date and time: 'FRIDAY 28 NOV At 7 PM GMT'. The bottom right indicates it is 'Hosted By: LONG COVID ADVOCACY' with a purple hand icon. The bottom center includes logos for 'LIVE', 'X', and 'YouTube', indicating the streaming platforms.
November 25, 2025 at 1:41 PM
longcovidadvoc.com
❄️ This Christmas, send more than a card. Sending one of our cards means profits go to vital Long Covid & ME research.

🎄 longcovidadvoc.shop
Christmas Cards Available! Image promoting three Christmas card designs and a charitable cause. The top left card shows a small gnome wearing a red hat sitting on a snow-covered branch. Text in red says "Happy Christmas." The top right card shows a small snowman doll sitting in grassy, misty field. Text in red above it says "MERRY CHRISTMAS." The bottom card is a nighttime illustration with Santa Claus in a sleigh pulled by a reindeer over a snowy landscape with dark blue pine trees and a crescent moon. Text in red above the illustration says "MERRY CHRISTMAS." Below the images, text reads: "All our profits go to Long Covid & ME research" and "Go to longcovidadvoc.shop".
November 24, 2025 at 2:27 PM
Reposted by Long Covid Advocacy
claguenjc36.bsky.social
71 responses in 4 days. Thank you to all hcps who have answered the survey so far. Please keep sharing. You can stop and restart the survey so it does allow for pacing. Thank you for all your insights, so valuable. @physiosforme.bsky.social
physiosforme.bsky.social Physios For ME @physiosforme.bsky.social · Nov 18
🚨New survey alert 🚨

The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME

All information can be found on the landing page here.

www.physiosforme.com/hcpwithmesur...
hcps with ME survey | Physiosforme
www.physiosforme.com
November 23, 2025 at 7:55 AM
longcovidadvoc.com
🧵 Thread: The Economic Cost of Long Covid – new 2025 study in Nature

1/ A new paper has modelled the economic burden of Long Covid in the U.S. and globally. Spoiler: it’s massive. Here’s a breakdown. 👇
November 22, 2025 at 5:08 PM