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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/
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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.
Reposted by Long Covid Advocacy
workwellfoundation.bsky.social
Our latest work now posted as a pre-print on Research Square: "ME/CFS and Long COVID Demonstrate Similar Bioenergetic Impairment and Recovery Failure on Two-Day Cardiopulmonary Exercise Testing"
Read more: www.researchsquare.com/article/rs-8...
#MECFS #LongCOVID #PEM @sunsopeningband.bsky.social
January 22, 2026 at 6:31 PM
longcovidadvoc.com
"I got COVID in hospital - my kidneys started to back up, you know, everything that started that could, all seemed to converge at the same time"

Interview with Phil Collins on his hospital acquired Covid infection. Hospitals + need to be safer 😷

#cleanair #ventilation
www.bbc.co.uk/sounds/play/...
Eras - Phil Collins - Episode 4: Against All Odds - BBC Sounds
Retirement is easier said than done for the hardest working man in pop.
www.bbc.co.uk
January 22, 2026 at 9:16 PM
longcovidadvoc.com
💙 During the Mendenhall debate we noticed a significant shift to Bluesky. Usually key community moments 'happen' on the 'other place'. Yet, Bluesky led the way and held its own. Go Bluesky!

If there is anything else the community would like us to cover about 'Invisible Illness' please 💬
January 22, 2026 at 12:06 PM
longcovidadvoc.com
Dr Diane O'Leary has made an excellent comment on Emily Mendenhall's Substack, revealing she had a similar experience with Wessely.

We agree that the world would be a better place if the silenced material could be published.
A social media post by Diane O’Leary dated Jan 20. The text reads: "I had a similar encounter with Wessley, who was selected as a reviewer for an article on ME/CFS I submitted to Journal of Medical Ethics. Reviewers messed with that thing for a full year! Finally we got it into a form that everyone was excited about - even Wessley - but he had raised some serious legal concerns along the way. Just when the paper was enthusiastically recommended by all reviewers, JME changed editors and the new one flatly refused to publish it. He wouldn’t admit that the legal issues worried him, so there was literally no justification. He just would not budge. It was an appalling thing to do to an author after demanding a year of work on an article. I sent it to Bioethics then, along with the comments and final refusal to publish at JME in spite of an unusual level of enthusiasm from all reviewers. They accepted it immediately, with no revisions. " A screenshot of a text-based post or comment. The text reads: "The recommendations I made in that article - along with many of the wise recommendations made by the ME community in the UK - were ultimately embraced in the new NICE guideline. I have often wondered whether Wessely recommended my paper knowing that, in the end, his legal concerns would override it. For what it’s worth, I’m guessing the world would be better off overall if you went ahead and published that silenced material. I don’t know the legal issues you’re dealing with, but the power he has over ME discourse is certainly not consistent with usual standards for peer review." At the bottom, there is a heart icon next to the text "LIKE (3)" and a three-dot menu icon.
January 21, 2026 at 4:20 PM
Reposted by Long Covid Advocacy
longcovidadvoc.com
1/ Emily Mendenhall has now responded to criticism of her “threshold” theory and expanded it by invoking polyvagal theory. While framed as biological and integrative, this is possibly out of the frying pan and into the fire territory?
open.substack.com/pub/emilymen...
Thresholds is a Biological Theory that Incorporates Social and Ecological Realities
Thresholds is not a theory of trauma but rather one of entanglements, with a spotlight on biological inflections
open.substack.com
January 21, 2026 at 2:34 AM
longcovidadvoc.com
1/ Emily Mendenhall has now responded to criticism of her “threshold” theory and expanded it by invoking polyvagal theory. While framed as biological and integrative, this is possibly out of the frying pan and into the fire territory?
open.substack.com/pub/emilymen...
Thresholds is a Biological Theory that Incorporates Social and Ecological Realities
Thresholds is not a theory of trauma but rather one of entanglements, with a spotlight on biological inflections
open.substack.com
January 21, 2026 at 2:34 AM
Reposted by Long Covid Advocacy
abrokenbattery.bsky.social
My #MECFS scandal explainer video has just passed 200,000 views.

Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since.

medium.com/@abrokenbatt...
ME/CFS Scandal Follow up
The ME/CFS scandal goes much deeper than my 27-minute explainer video. That was just an introduction — how for decades patients were told…
medium.com
January 19, 2026 at 7:53 AM
longcovidadvoc.com
At the heart of the Wessely revelations & Mendenhall controversy is the reliance of applying theory models on to patient populations.

Unfortunately Wessely's BPS model and Mendenhall's Syndemics are close cousins - which is a key cause of the issues.

To read: 👇
open.substack.com/pub/longcovi...
January 19, 2026 at 2:13 PM
longcovidadvoc.com
"And, since the pandemic, case numbers have been far higher, leaving many doctors, ahem, scratching their heads."

At the same time confirmation that Cvd weakens immunity is published 🙋‍♀️
The sudden rise of scabies: ‘I wouldn’t wish it on my worst enemy’
These microscopic mites, which burrow under your skin and cause ferocious itching, are incredibly hard to get rid of – and cases in the UK have soared. What is causing the outbreak, and is there…
www.theguardian.com
January 19, 2026 at 8:31 AM
longcovidadvoc.com
1/ In response to Emily Mendenhall’s recent Substack on critiques of her book Invisible Illness by the community & Wessely's legal threats.

Anthropology is often open to dialogue & critique, so let’s situate this moment historically & structurally. 🧵
open.substack.com/pub/emilymen...
Bluesky Blowup
How the ME/CFS patient community is reading Invisible Illness
open.substack.com
January 19, 2026 at 12:51 AM
longcovidadvoc.com
“Wessely read a version of the writing & threatened to sue me if it didn’t include the other side.” - Mendenhall

This raises serious questions about academic pressure, power, and whose voices shape the narrative around ME and Long Covid.
longcovidadvoc.com Long Covid Advocacy @longcovidadvoc.com · 5d
🗞️We have a fascinating article by guest writer @drelke.bsky.social on Mendenhall's new book 'Invisible Illness'.

Suffice to say there are complexities & controversies...

🖇️ tinyurl.com/vct9n5ez
A promotional graphic with a dark, blurred gradient background. The text reads: "'These are not verifiable conditions' Thoughts on Emily Mendenhall's new book 'Invisible Illness: a history, from hysteria to Long Covid' - by Dr Elke Hausmann. Long Covid Advocacy." The bottom includes the website "LONGCOVIDADVOCACY.SUBSTACK.COM" and a Substack logo.
January 18, 2026 at 5:20 PM
longcovidadvoc.com
🗞️We have a fascinating article by guest writer @drelke.bsky.social on Mendenhall's new book 'Invisible Illness'.

Suffice to say there are complexities & controversies...

🖇️ tinyurl.com/vct9n5ez
A promotional graphic with a dark, blurred gradient background. The text reads: "'These are not verifiable conditions' Thoughts on Emily Mendenhall's new book 'Invisible Illness: a history, from hysteria to Long Covid' - by Dr Elke Hausmann. Long Covid Advocacy." The bottom includes the website "LONGCOVIDADVOCACY.SUBSTACK.COM" and a Substack logo.
January 18, 2026 at 8:30 AM
longcovidadvoc.com
🧪We are seeing more and more evidence of the devastation that Cvd plays on the immune system

This increased risk in autoimmune disease is not reassuring

We know autoimmunity predominantly affects women who are often roadblocked in medicine to a dx

Cvd again plays into systemic inequalities

🖇️👇
An infographic from Long Covid Advocacy titled "Latest Research: Long Covid." The headline in pink text reads, "49% RISK INCREASE FOR AUTOIMMUNE DISEASE." Below the headline is a photo of a stethoscope resting next to a small chalkboard that says "autoimmune disease." The main text states: "This meta-analysis of 97 million people found COVID-19 increases the risk of new-onset autoimmune diseases by 49%, particularly vascular and connective tissue conditions. Risk was higher after severe infection and significantly lower in vaccinated individuals." The source is listed as "Chih-Chen Tzang et al, 2025, Clin Rev Allergy Immun." The Long Covid Advocacy logo is at the bottom.
January 17, 2026 at 5:26 PM
longcovidadvoc.com
An entire column (again) by Zoe Williams about being barred for one night, with no reflection on what hospitality staff endured enforcing Cvd rules for minimum wage - or the risks they still face.

It lands as grievance, not insight - & feels wildly out of touch.
The pub that changed me: ‘The barman banned me – no process, no second chances, no appeal’
The world’s largest Wetherspoon’s has seal-spotting views, a green leather banquette and a grand central staircase. I would do anything for that pub, so imagine my surprise when I was given my…
www.theguardian.com
January 17, 2026 at 8:30 AM
longcovidadvoc.com
We are well into our read of 'Year of the Tiger' in memory of Alice Wong, for our disability & chronic illness reading collective, The #PedanticZebra Book Club.

This is a super quote about holding & unifying the many aspects of ourselves.

💙📚 To join us on Fable: tinyurl.com/3r2ctufh
A woman sits in a wheelchair, holding a yellow book titled "Year of the Tiger: An Activist's Life" by Alice Wong. She wears a blue sweater and red lipstick, looking directly at the camera. A large pink quotation mark is in the top left corner. Below the image, on a dark blue background, white text reads: "The many identities you hold and your lived experiences are not in conflict with each other; they make you sharp, whole, and extraordinary." This is followed by "- YEAR OF THE TIGER, ALICE WONG" in pink. The bottom left features the Long COVID Advocacy logo.
January 16, 2026 at 7:02 PM
longcovidadvoc.com
The risk of neurological degeneration after Covid has been discussed and been a concern in the community for years.

It is not reassuring to see this research.

Covid is not mild.

@wesstreeting

🖇️👇
An infographic from Long Covid Advocacy titled "Long Covid & Alzheimer's Biomarkers." It features a side profile of a person with a glowing, digital representation of a neural network inside their brain, set against a background of soft bokeh lights. The text states that in essential workers with neurological Long Covid, plasma pTau-181 rose by approximately 59% after infection. It explains that pTau-181 is a core Alzheimer's biomarker, and its increase suggests the activation of neurodegenerative pathways without implying a clinical diagnosis of Alzheimer's disease. The source is cited as Yang et al, 2025, eBioMedicine - Lancet. Would you like me to find more information on the specific study mentioned in this graphic?
January 15, 2026 at 5:37 PM
longcovidadvoc.com
🐱 Using translational medicine can we make a step forward in understanding how FIPV in cats can also affect humans?

This study shows a wider extent of viral influence in immune cells than previously thought.

A reason why antivirals aren't working?

🖇️ tinyurl.com/y89sru6e
Infographic titled "LATEST RESEARCH: LONG COVID" featuring a photo of a long-haired calico cat. The headline asks, "DO CATS HOLD A CLUE TO LONG COVID?" Text below explains that FIPV (Feline Infectious Peritonitis Virus) infects macrophages, T and B lymphocytes, and persists after treatment, mirroring human coronavirus infections and providing a model to study immune dysregulation in Long COVID. At the bottom is the Long Covid Advocacy logo and a source citation for Balakumar, 2025, Vet MicroBio.
January 15, 2026 at 8:30 AM
longcovidadvoc.com
The TRPM3 ion channel is a protein in cell membranes that allows calcium & other ions to flow into cells.

The significance in ME is that its function is reduced in natural killer cells. This can impair immune cell activity.

An important clue in the biology & a possible biomarker.

🖇️👇
An infographic titled "LATEST RESEARCH" and "TRPM3 DYSFUNCTION CONFIRMED." It features a 3D medical illustration of a cell membrane with an ion channel. Below the image, text reads: "A large, multi-site electrophysiology study confirms significant TRPM3 ion channel dysfunction in natural killer cells from people with ME/CFS, independent of laboratory site, strengthening evidence for a biological pathomechanism and supporting TRPM3 as a reproducible diagnostic biomarker." The source is cited as Sasso et al, 2025, Frontiers. The bottom of the graphic includes the Long COVID Advocacy logo.
January 14, 2026 at 9:32 PM
Reposted by Long Covid Advocacy
mamatoronto.bsky.social
Clean air for kids & staff in schools & daycares shouldn’t be controversial

No IAQ policy at any level of govt ensuring indoor air is clean & safe to breathe atm

Petition to Toronto Board of Health to direct TO Public Health to adopt Health🇨🇦's new IAQ Guidance
preview.mailerlite.io/preview/1297...
Clean Indoor Air Toronto
cleanindoorairto.ca
December 23, 2025 at 10:40 AM
longcovidadvoc.com
Just a note to say we are back after our break! Hoping people managed some radical rest over the holidays.

Anything interesting happened in the community?!
January 12, 2026 at 4:09 PM
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