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Long Covid Advocacy

@longcovidadvoc.com
17K followers 5.6K following 2.5K posts

A non-profit social enterprise dedicated to people with Long Covid + ME. Shifting the paradigm one step at a time... 💙📚Home to the #cripademia book club. www.longcovidadvoc.com 🛍️ longcovidadvoc.shop

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Reposted by Long Covid Advocacy
Adam @abrokenbattery.bsky.social · 06/10/2026
“The harm you have done is incalculable. It’s not me who has been spreading great harm around the world. It’s you, mate.” George Monbiot on being accused by Prof Michael Sharpe of “spreading” #LongCovid by writing about it and why he started writing about the #MECFS scandal.
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Long Covid Advocacy @longcovidadvoc.com · 06/10/2026
Link to paper: www.sciencedirect.com/science/arti...
sciencedirect.com
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Long Covid Advocacy @longcovidadvoc.com · 06/10/2026
Outstanding. Thank you for your work, time, energy & dedication on this article.
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Long Covid Advocacy @longcovidadvoc.com · 06/10/2026
Extraordinary article about ME - its history, controversialisation & how medical ignorance is systemically maintained. Clear & thorough 💫 Brilliant 🧵by Chloe 👇
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Long Covid Advocacy @longcovidadvoc.com · 05/10/2026
With pneumonic plague threatening, it reminds us that we are in a worse place if another pandemic strikes: 🔸Mitigations has been minimised 🔸Masks are political 🔸'Normal' has been pushed at all cost 🔸Compliance with public health is lower 🔸Disinformation is prominent AND the immune damage from Cvid
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Long Covid Advocacy @longcovidadvoc.com · 02/10/2026
We have taken part in the Government consultation on fireworks and pyrotechnics, with the view that #pwME & Long Covid are at risk of deterioration & PEM due to the noise & sensory risk of fireworks. Consultation closes: 7th Oct. Details 👇 www.gov.uk/government/c...
gov.uk
Fireworks and pyrotechnics in the UK
We are seeking views on the regulation of pyrotechnics and fireworks in the UK.
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Reposted by Long Covid Advocacy
ThereForME @thereforme.bsky.social · 01/10/2026
The Guardian has published our letter responding to George Monbiot's article about how people with ME are abandoned, dismissed and gaslighted. We point out the inadequate political attention, and call for action from the Health & Social Care Select Committee. www.theguardian.com/society/2026...
George Monbiot is right to draw attention to the “shocking social crisis playing out behind closed doors” for people living with ME. Not only is ME a devastating condition, but too often those affected are failed by the very systems meant to care for them.

The level of political attention the issue has received is nowhere close to the scale of the problem. The government’s strategy on ME, published over a year ago, lacked both substantive funding and outcome targets. Its key action for those affected by the most severe form of ME – “exploring” whether a specialised service could be commissioned – is now delayed until April 2027. We hope that, as a first step, the health and social care select committee will take up this critical issue as a matter of urgency.
Karen Hargrave and Emma Gore-Lloyd
Co-founders, ThereForME charity
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Reposted by Long Covid Advocacy
Karam Bales @karambales.bsky.social · 28/09/2026
Why is discussing lack of Covid vaccine access taboo in the UK? Guardian article criticises RFK JR while ignoring greater restrictions in the UK Other ignored issues includes IPC Guidance, Long Covid, clean air counterdisinformationproject.substack.com/p/why-is-dis...
counterdisinformationproject.substack.com
Why is discussing lack of Covid vaccine access taboo in the UK?
Guardian article criticises RFK JR while ignoring greater restrictions in the UK
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Reposted by Long Covid Advocacy
Chris Ponting @cgatist.bsky.social · 28/09/2026
The 2026 PRIME symposium kicks off with reflections from Kelly McLellan on the importance of Patient and Public Involvement in ME/CFS research. #Prime26 #pwME #mecfs
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Reposted by Long Covid Advocacy
Alem Matthees @alemmatthees.bsky.social · 28/09/2026
(1/12) No. The painful truth about #LongCOVID is not the alleged suppression of brain retraining, but that the scale of the pandemic and aftermath were preventable. Systemic and collective failures emerged from a chain of poor decisions. Millions dead. Millions of lives ruined. Trillions $ lost.
wired.com
The Painful Truth About Long Covid
There might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.
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Long Covid Advocacy @longcovidadvoc.com · 27/09/2026
Also on your favourite podcast platform, just search Cripademia! Full interview: www.youtube.com/live/N0VOLdc...
youtube.com
On Fairy Tales and Disability with Amanda Leduc - Cripademia Book Club
YouTube video by Long Covid Advocacy
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Long Covid Advocacy @longcovidadvoc.com · 27/09/2026
We spoke to Amanda Leduc for our Cripademia book club. Here she talks about the idea of complex embodiment a disability model between the social & medical models. It's particularly important for those with #LC & #ME Full 🖇️👇
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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026
#longcovid #MEcfs #millionsmissing #disability #pwME
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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026
📻 Superb @georgemonbiot.bsky.social Interview on LBC with Natasha Devon. "A long & vicious history in this country of dismissing predominantly female diseases & calling them hysterical." 🔥 Thank you George & Natasha 🙏
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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026
The George Monbiot LBC interview with Natasha Devon is EXCELLENT! It's on at 7.33 pm. Can't record it due to DRM capture. BUT will keep an eye out for the recording. share-gp.globalplayer.com/live/lbc/uk/
globalplayer.com
LBC UK - Listen Live | Global Player
Leading Britain's Conversation. Access your favourite LBC shows now!
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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026
George Monbiot is on LBC NOW!
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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026
Anna is also taking part in the diverse voices pitch event with her amazing non-fiction book of wildlife observation from her Glasgow garden! Do show her some ♥️ & support #pwME #MEcfs
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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026
Ahhhhh, thank you everyone liking, it's really helping! 🙌💙🙌💙🙌💙
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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026
💬 Reminder that George Monbiot will be talking to Natasha Devon on LBC today about #ME. 📻 6-9pm Saturday 🔥 Both have been exceptional allies to #pwME so it should be a good one! Note: if listening on phone, you need the LBC app which needs setting up before. www.lbc.co.uk/radio/
lbc.co.uk
LBC Radio - Listen & Watch Live | LBC
Talk radio for the UK, letting you have your say on the big issues of the day, with breaking news and opinion.
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Long Covid Advocacy @longcovidadvoc.com · 24/09/2026
Excellent news. The coverage on the ME scandal is continuing! @georgemonbiot.bsky.social will be on Natasha Devon's LBC show this Saturday 6-9pm 📻 #longcovid #pwME #NEISVoid #Disability
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Long Covid Advocacy @longcovidadvoc.com · 24/09/2026
Important topic: #longcovid #pwME #chronicillness #disability #NEISVoid #inquiry #MEcfs #publicinquiry @yvettecooper-mp.bsky.social @andyburnham.bsky.social @zackpolanski.bsky.social @eddavey.libdems.org.uk @tessamunt.bsky.social
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Long Covid Advocacy @longcovidadvoc.com · 24/09/2026
Phenomenal article. Thank you George. An inquiry is desperately needed. But Wessely also got himself appointmented to the JAC Judicial Appointments Board, which also advises on tribunals. Covered here: www.longcovidadvoc.com/post/the-wes...
longcovidadvoc.com
The Wessely Wizard of Oz
Part Two - The Wessely Files. Do we have a wizard in our midst?
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Long Covid Advocacy @longcovidadvoc.com · 24/09/2026
An inquiry is desperately needed. But we have the added complication that Wessely is on the 15 member JAC, Judicial Appointments Board. They appoint judges & have advisory power for tribunals. Covered here: www.longcovidadvoc.com/post/the-wes...
longcovidadvoc.com
The Wessely Wizard of Oz
Part Two - The Wessely Files. Do we have a wizard in our midst?
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Long Covid Advocacy @longcovidadvoc.com · 24/09/2026
Let's get this viral everyone! www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Long Covid Advocacy @longcovidadvoc.com · 24/09/2026
Extraordinary to see ME covered like this in mainstream media. The truth is the neglect is so staggering people can't believe it. As George says " has seldom been a stronger case for a public inquiry." 🖇️article 👇
Across the decades, millions of people have been neglected, dismissed and mistreated, and still it goes on. We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond. In other words, there has seldom been a stronger case for a public inquiry.
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Long Covid Advocacy @longcovidadvoc.com · 23/09/2026
Well said.
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Long Covid Advocacy @longcovidadvoc.com · 23/09/2026
Our original article to Miranda's 'I Haven't Been Entirely Honest with You' We still hope Miranda can use her considerable platform to advocate responsibly & amplify that people with severe ME have no commissioned NHS care. www.longcovidadvoc.com/post/dear-mi...
longcovidadvoc.com
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Long Covid Advocacy @longcovidadvoc.com · 23/09/2026
Yes, we did note all the instances she said this in the book.
Text in italic serif font, preceded by vertical pink lines, reading:
I decided to only do the brain rewiring to recover.
I already believed the treasures to be right and true, but to experience them all in a 10-minute moment in my garden to placate myself was extraordinary...I now knew what to do in any moment of chronic crisis. I knew what to do in the next 10 minutes. All the treasures releasing me. Wow.
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Long Covid Advocacy @longcovidadvoc.com · 23/09/2026
Miranda Hart is doing media about her chronic illness (ME & Lyme) & Traitors. We wish Miranda the best & hope she can pace. But also caution celebrities that writing to sell books saying they've recovered with dodgy brain retraining does not help the community. www.rte.ie/entertainmen...
Text in italic serif font, preceded by vertical pink lines, reading:
PS I got better with play.
I want to share the answers that were vital for my recovery - from long term illness to living my life in a much more meaningful, free and joyful way.
With the discipline to keep working on the tools that reduce the stress response, and the surrender to release control over what I can't, my ordeal is over.
I was experiencing the physical and emotional lift of walking, nature and play. I don't believe, with the disease I had been dealt, I couldn't have recovered without them.
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Long Covid Advocacy @longcovidadvoc.com · 22/09/2026
It is a film flam!
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Long Covid Advocacy @longcovidadvoc.com · 22/09/2026
Exactly
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Long Covid Advocacy @longcovidadvoc.com · 22/09/2026
Our article on the Biopsychosocial model. www.longcovidadvoc.com/post/bps
longcovidadvoc.com
101: 03. The Biopsychosocial Model
To clearly name the problem: The term is accepted in medicine as a common-sense position that on the surface makes a great deal of sense. Yet, there is often a hidden psychosomatic interpretation that...
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Long Covid Advocacy @longcovidadvoc.com · 22/09/2026
Thanks George. Capital is behind so much of the issues to. The state doesn't want to pay for: -est actual clinical pathways -research -benefits The problem & gap is soo big it's easier to ignore or use the BPS model www.longcovidadvoc.com/post/bps
Concise 1 page 101 of the biopsychosocial model
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Long Covid Advocacy @longcovidadvoc.com · 22/09/2026
Thanks again to George for writing about ME with clarity & precision. And there is definitely room for a story about ME & capital - it's the reason the BPS model stays strong especially since Blair's adoption of it in the 90s to punch down on the disabled - & not pay benefits.
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Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026
📢 Our paper is published in Oxford Open Immunology: The ERASE_LC trial evaluated whether a 5-day course of intravenous remdesivir is feasible, safe, and acceptable for people living with Long COVID. This is the first study to specifically examine remdesivir as a treatment for LC.
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Reposted by Long Covid Advocacy
George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice. #ME/CFS
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Long Covid Advocacy @longcovidadvoc.com · 21/09/2026
Amplifying! Excellent news that GM is writing another ME article. If relevant email address below 👇 #pwME #NEISVoid #LongCovid #ChronicIllness
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Long Covid Advocacy @longcovidadvoc.com · 20/09/2026
We are reading this Autumn, over three months (we take our time!) Stuart's book 'Nobody's Empire', which features ME representation. All are welcome to read/listen or follow extracts on social media #cripademia fable.sng.link/Ali7l/etuk?_...
fable.sng.link
Fable | Stories for everyone
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Long Covid Advocacy @longcovidadvoc.com · 20/09/2026
The Metro reporting on Stuart Murdoch & ME "Due to his myalgic encephalomyelitis/chronic fatigue syndrome (ME, Stuart & the band too) remained reclusive, doing rare shows and interviews." We are reading Stuart's book 'Nobody's Empire' in our Cripademia book club! 🔗👇 metro.co.uk/2026/09/18/u...
metro.co.uk
UK band plays impromptu gig in a park after show was cancelled last minute
Belle and Sebastian forced to play impromptu gig in a park after 30th anniversary show was cancelled last minute in Australia
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Long Covid Advocacy @longcovidadvoc.com · 18/09/2026
TONIGHT 🧚‍♀️🧌 at 7pm UK time! On Fairy Tales & Disability with Amanda Leduc. Apt seeing the amount of people trying to convince us we can cure ourselves by the fairy tale trope of magical thinking! 📺 Livestreaming on our twitter, YouTube & Facebook Recording will be available.
Promotional graphic for Cripacademia Pod Bookclub featuring a background of leather-bound books. The text reads "Cripacademia Pod with Amanda Leduc, 05. On Fairy Tales," alongside a circular portrait of Amanda Leduc and the Long Covid Advocacy logo in the bottom right.
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Miles W. Griffis @mileswgriffis.bsky.social · 16/09/2026
"Mainstream outlets have published misinformation on Long COVID, calling it [psychosomatic] despite the plethora of research that proves it’s a biological disease. This parallels climate nonexperts questioning climate change’s seriousness and calling it a “hoax.”" thesicktimes.org/2026/09/15/d...
thesicktimes.org
Denial is a tactic for both the COVID-19 and climate crises - The Sick Times
Corporate interests have had more say in our behaviors toward both COVID-19 and the climate crisis than any evidence-based public health response.
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Long Covid Advocacy @longcovidadvoc.com · 15/09/2026
Note: one always has to be careful when an invested drug company report positive results.
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Long Covid Advocacy @longcovidadvoc.com · 15/09/2026
Need to investigate further, but a trial for Long COVID with initial phase two promise.
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Reposted by Long Covid Advocacy
It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026
Master post of each talk re: the Stanford #MECFS Community Symposium: 🧪 Talk 1: bsky.app/profile/exce...
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Long Covid Advocacy @longcovidadvoc.com · 11/09/2026
Exciting news! We will be talking to Amanda Leduc about her book 'Disfigured: On Fairy Tales, Disability & Making Space.' Particularly pertinent seeing that so many books about Long Covid rely on the 'magic cure' trope. Live: 18th Sept 7pm BST on X • Youtube • FB Recording will be available
Event flyer for "Cripacademia Pod Bookclub with Amanda Leduc" titled "06. On Fairy Tales." Features a photo of author Amanda Leduc, her book cover "Disfigured: On Fairy Tales, Disability, and Making Space," and event details: Livestream on Friday, 18th Sept at 7pm, broadcast on Long Covid Advocacy YouTube, X, and Facebook.
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Tom Kindlon @tomkindlon.bsky.social · 09/09/2026
I’m sure I can speak for the PACE Trial investigators [Peter White, Michael Sharpe & Trudie Chalder] when I say they love when the re-analyses are highlighted online. 😜 #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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Long Covid Advocacy @longcovidadvoc.com · 06/09/2026
3/3 We deserve better than internalised misogyny that invalidates & demonises women in response to a forgotten pandemic.
Women with poorly understood illnesses have a long history of having their physical symptoms dismissed as psychological. We should be asking why patients aren't being believed, diagnosed and treated — not finding ever more sophisticated ways to blame them.

To have female doctors & journalists display
this internalised misogyny should cause reflection on their part.

This matters particularly now, as disabled people are increasingly being blamed for “economic inactivity” and welfare spending.
The old medical dismissal is being repackaged for a new political moment.

Disabled people are not the problem.
And “psychosomatic” should never become the answer simply because medicine doesn't yet have all the answers.
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Long Covid Advocacy @longcovidadvoc.com · 06/09/2026
2/3 Suzanne O'Sullivan - The Ultimate Sickfluencer
If they become knowledgeable about their condition, they're “too attached” to their diagnosis. If they speak publicly about their illness, they're “attention-seeking”.

Almost any patient response can be turned into evidence for the theory.

And there is an uncomfortable irony in repeatedly accusing others of seeking attention while becoming a prominent public figure through telling people that their physical symptoms may actually be psychological.

Perhaps if we're going to talk about “sickfluencers”, we should also examine who is rewarded with platforms, media attention, books and professional status for promoting these narratives. O'Sullivan has become the 
ultimate sickfluencer, fulfilling what she criticises others for.
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Long Covid Advocacy @longcovidadvoc.com · 06/09/2026
Our statement in response to The Telegraph article: 'How having a disability became cool' Young women, named 'sickfluencers', are turning chronic illness into a lifestyle trend & entrenching a culture of economic inactivity.' by Poppy Coburn, featuring Suzanne O'Sullivan. #longcovid #pwME #POTS
It is disheartening & predictable to see Suzanne O’Sullivan once again given a platform to promote psychosomatic explanations for chronic illness — this time in a Telegraph article attacking disabled people as influenced by social media, identity and attention.

There is a fundamental problem with this framework: it creates a self-reinforcing evidential trap. If patients accept a psychosomatic explanation, it confirms the theory.

If they reject it, their distress is interpreted as evidence that they are psychologically invested in being ill.

If they seek support from other patients, that's “social reinforcement”.
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Long Covid Advocacy @longcovidadvoc.com · 05/09/2026
Do you have a link to a good update? Happy to have a look.
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