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Long Covid Advocacy

@longcovidadvoc.com
16.8K 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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Long Covid Advocacy @longcovidadvoc.com · 17/10/2026
📻 Full interview with @binitakane.bsky.social on BBC Radio 5 Excellent discussion on ME & Beth Dobbin that looks at: 🔹why ME has been dismissed 🔹 why it's seen as psychological 🔹 the sickest patients have no NHS care. #pwME #longcovid #medsky
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Long Covid Advocacy @longcovidadvoc.com · 16/10/2026
📺 Quality interview with Beth Dobbins on @BBCSport Thank you Beth for your precious energy for this. We understand the impact this can have.
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Long Covid Advocacy @longcovidadvoc.com · 13/10/2026
Our Psychologisation infographic is out! By coincidence, The Guardian published an article today reporting that women with autoimmunity are 74% more likely to be told their symptoms are psychological than men. Psychologisation is still a huge problem in medicine. Our article & The Gs 🖇️👇️
Long Covid Advocacy infographic on psychologisation, with pastel boxes, icons, and text on harms, myths, and evidence-based care.
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Long Covid Advocacy @longcovidadvoc.com · 09/10/2026
🧠Not related to #LC but fascinating article in The New Scientist about how pressure on the shin bone eases traumatic brain injury through the bone-brain axis. And how it might be beneficial for those who can't exercise. 🖇️👇
Microscopic view of bones from frontispiece of article in The New Scientist Compressing bones releases molecules that ease traumatic brain injuries.
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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
📻 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 · 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
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
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 · 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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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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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 · 21/08/2026
Our autumn book club has been voted in! 'Nodody's Empire' by Stuart Murdoch @nee_massey Starting on Sept 1st on Fable or follow #cripademiabookclub hashtag. 📚💙 #booksky 🖇️👇
Book club graphic featuring Stuart Murdoch’s Nobody’s Empire, with vintage photo of a young man, autumn book club details, and Belle & Sebastian sticker.
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Long Covid Advocacy @longcovidadvoc.com · 21/08/2026
Our autumn book club has been voted in! 'Nodody's Empire' by Stuart Murdoch @stuartmurdoch.bsky.social Starting on Sept 1st on Fable or follow #cripademiabookclub hashtag. 📚💙 #booksky 🖇️👇
Book club graphic featuring Stuart Murdoch’s Nobody’s Empire, with vintage photo of young man, autumn book club details, and Belle & Sebastian sticker
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Long Covid Advocacy @longcovidadvoc.com · 31/07/2026
We're breaking up for August - our usual month break to recharge and recoup. Thank you all for your support and we will be back in September. Solidarity ✊ 💙
orange album cover of Alice Coopers Schools out
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Long Covid Advocacy @longcovidadvoc.com · 29/07/2026
101: Visual Summary for The Biopsychosocial Model
Infographic titled Visual 101: The Biopsychosocial Model by Long Covid Advocacy. It explains that the biopsychosocial (BPS) model considers biological, psychological and social factors in illness but argues it has often overemphasised psychological explanations. A diagram shows biology, psychology and social factors interacting. Another panel summarises George Engel's 1977 origins of the model. A flow chart describes how the model shifted from a broad framework to an explanatory model, leading to greater emphasis on psychological factors, behavioural treatments such as CBT and mindfulness, and potential patient harm. It contrasts rehabilitation-led multidisciplinary care with specialist medical care. Final panels outline why the model became popular, key criticisms (vagueness, prioritising psychology, legitimising harmful treatments and psychogenic explanations), and proposed alternatives: evidence-based biomedicine, transparency about uncertainty, more biological research, and supportive mental healthcare without blame.
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Long Covid Advocacy @longcovidadvoc.com · 29/07/2026
No.03 in our 101 series covers The Biopsychosocial Model. A vital topic as much of our clinical care is BPS. Lack of progress in care, research & treatment rests on this theory. Yet, it's a complex topic, so we have created an accessible article AND a 1-page visual summary. Link 👇
Cover image for a series titled "101: 03. The Biopsychosocial Model." Against a textured background in shades of yellow, orange and ochre, a large cracked surface dominates the image, with deep black fissures radiating from a central break, suggesting fracture or instability. In the upper left stands an engraved-style illustration of Lady Justice, blindfolded and holding a sword in one hand and balanced scales in the other. In the lower right is a small line drawing of a human head in profile with the brain illustrated in intricate detail. The title appears in dark blue text over the orange centre of the image. The overall design evokes themes of justice, critical examination and a model under strain.
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Long Covid Advocacy @longcovidadvoc.com · 16/07/2026
Excellent letter from Dr Mark Harper and the Cambridge ME and Long Covid Support group & co-sigs. It is a response to the RCPsych letter to our open letter signed by 58 orgs. It primarily deals with their claim as experts in the BPS model & well worth a read.
Screenshot of a two-page open letter from Cambridgeshire ME and Long Covid Support, co-signed by Suffolk Youth & Parent Support Group and Bury & Bolton ME/CFS & Fibromyalgia Support Group, addressed to Professor Subodh Dave and Dr Jade Smith of the Royal College of Psychiatrists, dated 12 July 2026. The letter responds to the College's reply to an earlier open letter, arguing that reliance on the biopsychosocial model does not reflect current evidence. It cites the 2021 NICE guideline (NG206), post-exertional malaise, WHO classification of ME, and the DecodeME genetic study, contending that behavioural models have harmed patients and diverted biomedical research. The authors urge the College to align its activities with current evidence and NICE guidance.
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Long Covid Advocacy @longcovidadvoc.com · 05/07/2026
We have two treats in store: 1. An excellent article by writer @tedmonroe91.bsky.social on Levinovitz & the brain retrainers. 2. A giveaway of 'On Being Ill' by Woolf with 12 new essays by modern writers, including one on Long Covid by Ted! Just like & comment VIRGINIA to enter 🎁 #booksky
Promotional graphic with a muted gray engraving-style background showing an elderly hooded figure embracing a younger person, with a medieval city skyline behind them. In the upper right is the cover of *On Being Ill* by Virginia Woolf with the text: “feat. Ted’s essay!” An arrow points to the book with the words “Signed copy” and “with Giveaway.” The main text reads: “ARTICLE BY TED MONROE: ‘That agony returns’: What Coleridge’s ancient mariner can teach us about the Long Covid brain re-trainers.” At the bottom: “Excellent commentary reflecting on Alan Levinovitz’s WIRED piece.”
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Long Covid Advocacy @longcovidadvoc.com · 03/07/2026
We have a new look & name for our disability #bookclub Cripademia! Our Summer read is the phenomenal 'Disfigured' by @amanda.leduc which examines fairy tales & disability. We're on Fable! bit.ly/crp-fable 💙📚 #booksky
An graphic for the Cripademia Bookclub featuring a background of dimly lit bookshelves.
In the center, large white text reads: "How many lives have been smothered or disappeared or haven't been allowed to flourish because of the stories we tell?"
In the bottom left, a circular, gold-bordered black and white portrait shows author Amanda Leduc smiling gently.
To the right of the portrait, text in gold reads: "AMANDA LEDUC" followed by "Disfigured: On Fairy Tales, Disability & Making Space".
The top features the "Cripademia Bookclub" logo with an illustration of glasses on a stack of books, and the bottom right corner shows the "Long Covid Advocacy" logo.
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Long Covid Advocacy @longcovidadvoc.com · 01/07/2026
We have responded to the Royal College of Psychiatrists after former President Dr Lade Smith responded to our Open Letter signed by 58 orgs & 1200 people We are committed to continuing the dialogue to improve the experience of people with Long Covid & ME #RCPsychIC 📩 PDF download in article👇
A formal letter from Long Covid Advocacy to Prof. Lade Smith and Prof. Subodh Dave of the Royal College of Psychiatrists, dated 1st July, 2026. Titled "Response to the Royal College of Psychiatrists," the document features a two-column layout with a purple and blue theme.
The letter advocates for patients with ME and Long Covid, emphasizing that psychiatric care must begin with an accurate understanding of biological disease rather than relying on outdated psychological models. It highlights that the NICE guideline NG206 downgraded the certainty of CBT and graded exercise therapy, and mentions research like DecodeME. It expresses concern over a lack of balanced research representation at a recent Congress session, references the College's Women's Mental Health Action Plan, and calls for a collaborative meeting to ensure future educational programming aligns with current evidence. Signed by Long Covid Advocacy with website and social handles at the bottom.
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Long Covid Advocacy @longcovidadvoc.com · 23/06/2026
☀️The #heatwave is upon us☀️ To help people stay safe and cool we have prepped a: 👁️101 Visual Summary of our Cooling Tips High quality PDF download on our website 🖇️👇
An infographic titled "Cooling tips for people with chronic illness" from Long Covid Advocacy in the file 18857.png. It details advice across several sections:
 * Summary: Heat increases symptom burdens; accommodations are vital.
 * Medication: Beta blockers and antihistamines can impair sweating.
 * Cool on the outside: Use soaked towels, ice packs, cooling mats, mist.
 * Cool on the inside: Suck ice cubes, store iced water, drink electrolyte lollies.
 * Cool Zone: Use AC, fans with ice packs, open loft hatches, wet sheets.
 * Cool House: Open windows early/late, close blinds during peak heat, use reflective film.
 * Pacing, Sensory, Check-in, & Care: Rest more, reduce sensory load, check on vulnerable community members, and pre-prep meals/cool boxes.
 * Rights: Outlines UK workplace accommodations under the Equality Act 2010 (e.g., remote working, flexible hours).
 * Bonus tips: Includes an ORS recipe for 1L water, treat ideas, and pet care.
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Long Covid Advocacy @longcovidadvoc.com · 21/06/2026
It's been a week since we were at #RCPsychIC and received a reply from Prof Lade Smith to our Open Letter signed by 58 orgs & 1200 individuals. We are just consulting for and drafting our response. LMK if you have any thoughts. We also had a kind volunteer translate the letter into French 💙
French translation of Long Covid Advocacy Open Letter to Royal College of Psychiatrists.French translation of Long Covid Advocacy Open Letter to Royal College of Psychiatrists.
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Long Covid Advocacy @longcovidadvoc.com · 15/06/2026
We enthusiastically wish the Royal College to engage & present Long Covid in a beneficial way for patients. Why did 58 orgs present concerns about #RCPsychIC 2026? 👇️ #HearOurVoices
An open letter in double open letter from Long Covid Advocacy to the Royal College of Psychiatrists regarding ME and Long Covid medical frameworks, signed by 58 supporting organizations.
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Long Covid Advocacy @longcovidadvoc.com · 15/06/2026
In light of the Long Covid presentations at #RCPsychIC today it is worth sharing this from the £3.25 million genetic study on ME & Long Covid about the lack of genetic overlap with depression & mental illness. From Prof Chris Ponting who led the study:
An image with a yellow border at the top and bottom, featuring text under the bold heading "Is ME a mental illness?".
The text reads:
"One of the great strengths of genetics is that we can ask questions without bias. One of the questions we asked was whether the genetic markers for ME overlap with those for other diseases. We found one overlap – with chronic pain. But we found no overlap with diseases such as diabetes or mental health conditions such as depression or schizophrenia."
"Based on the current evidence, we can say that ME appears to be a distinct disease – with its own genetic profile. We have not seen any genetic overlap with mental health conditions. That may change, but for now, there is no evidence of a genetic link with mental health conditions."
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Long Covid Advocacy @longcovidadvoc.com · 15/06/2026
Why are we trending?
An advocacy campaign graphic from 18094.png titled "#HearOurVoices Social Media Campaign," which outlines a call to action regarding the Royal College of Psychiatrists. The top left features a photo of a person pushing a young individual in a wheelchair down a paved path. A numbered "How" section directs supporters to join community outreach on June 15th (the opening day of the congress), post their personal stories, and amplify their message using the hashtags #RCPsychIC and #HearOurVoices. A "Why?" sidebar notes that 58 organizations and 1,200 people signed an open letter expressing concern over the framing of Long Covid at the 2026 International Congress, adding that while they welcome the RCPsych response, concerns remain. The graphic includes a text template for sharing, a bright pink QR code linking to the open letter at longcovidadvoc.com, and the logo for Long Covid Advocacy.
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Long Covid Advocacy @longcovidadvoc.com · 15/06/2026
And we are trending in the UK with #RCPsychIC Well done everyone! 🥳
trending in the united kingdom #RCPsychIC
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Long Covid Advocacy @longcovidadvoc.com · 15/06/2026
The Long Covid Community are asking for dialogue & meaningful patient engagement to ensure safe and appropriate education for psychiatrists. #RCPsychIC #HearOurVoices Why? Read our open letter signed by 58 orgs 👇️
An open letter in double open letter from Long Covid Advocacy to the Royal College of Psychiatrists regarding ME and Long Covid medical frameworks, signed by 58 supporting organizations.
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Long Covid Advocacy @longcovidadvoc.com · 15/06/2026
People with Long Covid and ME deserve excellent supportive mental health care. That is why we are reaching out to #RCPsychIC to include current patient expertise in future policy. What can be done to move forward? Why did 58 charities & orgs sign an open letter with concerns?👇️ #HearOurVoices 🔄
An open letter in double open letter from Long Covid Advocacy to the Royal College of Psychiatrists regarding ME and Long Covid medical frameworks, signed by 58 supporting organizations.
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Long Covid Advocacy @longcovidadvoc.com · 15/06/2026
Why did 58 orgs & 1200 individuals (9% Drs) sign an Open Letter asking the Royal College for better Long Covid representation at Congress? #HearOurVoices #RCPsychIC 👀🔄 👇️
An open letter in double open letter from Long Covid Advocacy to the Royal College of Psychiatrists regarding ME and Long Covid medical frameworks, signed by 58 supporting organizations.
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Long Covid Advocacy @longcovidadvoc.com · 14/06/2026
The full open letter signed by 58 orgs & 1200 individuals is here. Our aim is to engage with @rcpsych.bsky.social constructively to ensure that future policy on Long Covid is safe, effective and reflective of up-to-date framing & research - so all patients can benefit. #HearOurVoices 📩 👇️
A two-page digital document titled "Open Letter to the Royal College of Psychiatrists," dated 12th May, 2026. The top right features a logo for "LONG COVID ADVOCACY" with a neon hand and brain icon.

The letter is addressed to "Dear Prof. Subodh Dave, President-elect" and expresses concern over the framing of ME and Long Covid at an upcoming Congress. It objects to the inclusion of speakers Paul Garner, Alan Carson, and Trudie Chalder due to their association with psychiatric-led psychosocial frameworks. The text argues that the programming centers on behavioral models rather than biomedical evidence, contrary to NICE guideline NG206.

The second page lists bulleted demands for evidence-based programming and features a two-column list of supporting organizations, such as Action for ME, Long Covid Support, and #There4ME. It concludes with a note claiming "+ 1200 individual signatures" and lists social links at the bottom.
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Long Covid Advocacy @longcovidadvoc.com · 14/06/2026
We would like to sincerely thank our volunteer who attended. 👏 Please join us in conveying thanks and appreciation for being so valiant and committed to ensuring that the delegates of #RCPsychIC Congress are aware of the community's concerns with the framing of Long Covid.
A close-up shot of the top half of a printed flyer titled "Open Letter" held in the foreground, with a blurred outdoor walkway in the background leading toward the historic Royal Albert Dock in Liverpool under a clear blue sky.

The flyer has pink and black text that includes the hashtag "#HearOurVoices" and states: "58 orgs 1200+ signed / Calling on the Royal College of Psychiatrists to align with evidence." It features two columns below titled "Why this matters" and "Our concern," mentioning Long Covid & ME, alongside a small photo of a person in a wheelchair.

In the background, a brick pathway is lined with green trees and bushes. Vertical orange and purple banners hang from poles, and a large multi-story red brick building displays a sign that reads "Welcome to Albert Dock."
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Long Covid Advocacy @longcovidadvoc.com · 14/06/2026
It was a glorious British summer evening, and in typical British style, the delegates politely accepted MANY leaflets, and the gathering grew busier throughout the drinks event. We think there was a sighting of PG, and we're pretty sure even Trudie Chalder took a leaflet!
An exterior, low-angle shot of a modern convention center entrance featuring a grand, multi-story glass facade and an arched steel canopy roof under a clear blue sky. Large white lettering across the glass front reads "LIVERPOOL EXPERIENCE CAMPUS" next to a stylized "X" logo. The reflective glass panels mirror nearby white buildings and a bright, sunny sky. A person is visible walking through the glass sliding doors at the base of the entrance.
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Long Covid Advocacy @longcovidadvoc.com · 14/06/2026
Our valiant volunteer spoke engagingly with psychiatrists & delegates present, many of whom were interested. What was poignant was the majority spoken to - all knew someone with Long Covid - some severely. This shows us that so often, most people know someone affected.
Based on the text displayed on the hanging banners and registration desks, this image was taken at the Royal College of Psychiatrists (RC Psych) International Congress.

The glass facade in the background also features backwards text reading "LIVERPOOL EXPERIENCE CAMPUS," indicating that the event is being held at the ACC Liverpool (Arena and Convention Centre) in Liverpool, UK.
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Long Covid Advocacy @longcovidadvoc.com · 14/06/2026
Long Covid Advocacy in Liverpool on an outreach mission at the International Congress of The Royal College of Psychiatrists. #RCPsychIC As always, our aim was to engage politely and openly with those present. It was a resounding success. To read more...
An outdoor shot featuring a stack of printed "Open Letter" flyers held up in the blurry foreground, directly in front of a digital event sign at a convention center entrance.

The digital sign is framed in purple, branded with the "LIVERPOOL EXPERIENCE CAMPUS" logo at the top, and displays a colorful, interlocking bubble graphic above the text: "ROYAL COLLEGE OF PSYCHIATRISTS International Congress." The flyer in front of it displays the headline "Open Letter" and subheadings "58 orgs 1200+ signed" and "Calling on the Royal College of Psychiatrists to align with evidence."

In the background, the modern, multi-story glass facade of the convention center stands beneath a clear blue sky, reflecting nearby buildings. People can be seen entering the glass doors to the right of the sign.
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Long Covid Advocacy @longcovidadvoc.com · 14/06/2026
We will do a thread with a catch up to keep you all informed asap. Keep an eye out or loop back to our page to check (if the algo is squishy) #HearOurVoices Tomorrow! 💫👇
An advocacy campaign graphic from 18094.png titled "#HearOurVoices Social Media Campaign," which outlines a call to action regarding the Royal College of Psychiatrists. The top left features a photo of a person pushing a young individual in a wheelchair down a paved path. A numbered "How" section directs supporters to join community outreach on June 15th (the opening day of the congress), post their personal stories, and amplify their message using the hashtags #RCPsychIC and #HearOurVoices. A "Why?" sidebar notes that 58 organizations and 1,200 people signed an open letter expressing concern over the framing of Long Covid at the 2026 International Congress, adding that while they welcome the RCPsych response, concerns remain. The graphic includes a text template for sharing, a bright pink QR code linking to the open letter at longcovidadvoc.com, and the logo for Long Covid Advocacy.
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Long Covid Advocacy @longcovidadvoc.com · 14/06/2026
We are LIVE at the Royal College of Psychiatrists Congress NOW. This is to ensure the concerns of the community are heard about the framing of Long Covid (in a very British. polite way!) #RCPsychIC More details & about our social media campaign 👇️ 🖇️ www.longcovidadvoc.com/post/rcpsychic
An image featuring a digital flyer or promotional graphic for a health campaign. The background is a slightly desaturated, darkened photograph of the Liverpool waterfront skyline, prominent with the historic Royal Liver Building and its distinct clock tower under a clear, pale sky. Overlaid on the center of the image is white serif text that reads: "Long Covid Advocacy at the Royal College of Psychiatrists Congress - Now!" Below this main headline, a subtitle reads: "#HearOurVoices Campaign: Help us ensure our community is heard". Near the bottom of the image, the source is credited in italicized white text as "Long Covid Advocacy", with the website URL "LONGCOVIDADVOCACY.SUBSTACK.COM" printed in small, clean sans-serif capital letters at the bottom left corner. In the bottom right corner, there is a small white icon depicting a stylized architectural symbol consisting of three horizontal bars under a pointed roof line.
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Long Covid Advocacy @longcovidadvoc.com · 14/06/2026
Template: I'm joining the call for up-to-date scientific representation & meaningful patient engagement in Long Covid and ME. I'm proud to support the Open Letter to RCPsych, backed by 58 orgs & 1200 signatories. #HearOurVoices #RCPsychIC 📩 tinyurl.com/46enh82n (add image 👇️)
Two-page Open Letter from Long Covid Advocacy to Prof. Subodh Dave, President-elect of the Royal College of Psychiatrists, dated 12th May, 2026.

The letter expresses concern over Congress programming framing ME and Long Covid through outdated psychosocial/behavioural models rather than current biomedical evidence. It flags the inclusion of speakers Paul Garner, Alan Carson, and Trudie Chalder, arguing their frameworks risk misaligning with NICE guideline NG206.

The text outlines four demands:

    Ensure programming reflects biomedical evidence, not psychosocial models.

    Review how speaker sequencing shapes evidence interpretation.

    Position patient expertise as independent knowledge.

    Align all teaching with NICE guideline NG206.

The letter is signed by a two-column list of 58 supporting organizations (including Long Covid Advocacy, Action for ME, ME Association) and "+ 1200 individual signatures of patients, clinicians, researchers, carers & family members." Footer lin
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Long Covid Advocacy @longcovidadvoc.com · 14/06/2026
SOCIAL MEDIA OUTREACH TOMORROW! At 10am Paul Garner, Trudie Chalder & Alan Carson are presenting on Long Covid at RCPsych Congress. The community have serious concerns about this framing. 58 orgs & 1200 signed an open letter. Template to C+P below 👇️
Campaign infographic titled "#HearOurVoices" and "#RCPsychIC", demanding better ME and Long Covid framing from the Royal College of Psychiatrists. Left side shows a woman pushing a young woman in a wheelchair on a path. Below this, a dark block titled "1 Why?" states 58 orgs and 1200 people signed an Open Letter regarding concerns over Long Covid framing at the 2026 International Congress, noting "our concerns remain."

The main text outlines a "Social Media Campaign" with three steps: 1) JOIN community outreach on June 15th, 2) POST your story for congress attendees, 3) AMPLIFY using tags #RCPsychIC and #HearOurVoices. It provides a post template supporting up-to-date scientific representation and meaningful patient engagement. Bottom right includes a pink QR code, a link to "longcovidadvoc.com", and the "LONG COVID ADVOCACY" logo. A bright pink footer reads: "International response raises concern about Congress framing of Long Covid."
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Long Covid Advocacy @longcovidadvoc.com · 13/06/2026
📱You can save and share this leaflet on MON 15th to bring awareness to the open letter signed by 58 orgs & 1200 individuals about the communities legitimate concerns about the framing of Long Covid at the #RCPsychIC #socialmediacampaign #HearOurVoices
An advocacy campaign graphic from 18094.png titled "#HearOurVoices Social Media Campaign," which outlines a call to action regarding the Royal College of Psychiatrists. The top left features a photo of a person pushing a young individual in a wheelchair down a paved path. A numbered "How" section directs supporters to join community outreach on June 15th (the opening day of the congress), post their personal stories, and amplify their message using the hashtags #RCPsychIC and #HearOurVoices. A "Why?" sidebar notes that 58 organizations and 1,200 people signed an open letter expressing concern over the framing of Long Covid at the 2026 International Congress, adding that while they welcome the RCPsych response, concerns remain. The graphic includes a text template for sharing, a bright pink QR code linking to the open letter at longcovidadvoc.com, and the logo for Long Covid Advocacy.
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Long Covid Advocacy @longcovidadvoc.com · 13/06/2026
Template: I'm joining the call for up-to-date scientific representation & meaningful patient engagement in Long Covid and ME. I'm proud to support the Open Letter to RCPsych, backed by 58 orgs & 1200 signatories. #HearOurVoices #RCPsychIC 📩 tinyurl.com/46enh82n (add image 👇️)
Two-page Open Letter from Long Covid Advocacy to Prof. Subodh Dave, President-elect of the Royal College of Psychiatrists, dated 12th May, 2026.

The letter expresses concern over Congress programming framing ME and Long Covid through outdated psychosocial/behavioural models rather than current biomedical evidence. It flags the inclusion of speakers Paul Garner, Alan Carson, and Trudie Chalder, arguing their frameworks risk misaligning with NICE guideline NG206.

The text outlines four demands:

    Ensure programming reflects biomedical evidence, not psychosocial models.

    Review how speaker sequencing shapes evidence interpretation.

    Position patient expertise as independent knowledge.

    Align all teaching with NICE guideline NG206.

The letter is signed by a two-column list of 58 supporting organizations (including Long Covid Advocacy, Action for ME, ME Association) and "+ 1200 individual signatures of patients, clinicians, researchers, carers & family members." Footer lin
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Long Covid Advocacy @longcovidadvoc.com · 13/06/2026
IN TWO DAYS, on MON 15th, you can have your voice heard directly by those attending the RCPsych Congress. Congress is well attended, with a strong online presence. By including #RCPsychIC we can connect directly & continue the conversation. Template to C+P below 👇️
Campaign infographic titled "#HearOurVoices" and "#RCPsychIC", demanding better ME and Long Covid framing from the Royal College of Psychiatrists. Left side shows a woman pushing a young woman in a wheelchair on a path. Below this, a dark block titled "1 Why?" states 58 orgs and 1200 people signed an Open Letter regarding concerns over Long Covid framing at the 2026 International Congress, noting "our concerns remain."

The main text outlines a "Social Media Campaign" with three steps: 1) JOIN community outreach on June 15th, 2) POST your story for congress attendees, 3) AMPLIFY using tags #RCPsychIC and #HearOurVoices. It provides a post template supporting up-to-date scientific representation and meaningful patient engagement. Bottom right includes a pink QR code, a link to "longcovidadvoc.com", and the "LONG COVID ADVOCACY" logo. A bright pink footer reads: "International response raises concern about Congress framing of Long Covid."
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Long Covid Advocacy @longcovidadvoc.com · 12/06/2026
Template: I'm joining the call for up-to-date scientific representation & meaningful patient engagement in Long Covid and ME. I'm proud to support the Open Letter to RCPsych, backed by 58 orgs & 1200 signatories. #HearOurVoices #RCPsychIC 📩 tinyurl.com/46enh82n (add image 👇️)
Two-page Open Letter from Long Covid Advocacy to Prof. Subodh Dave, President-elect of the Royal College of Psychiatrists, dated 12th May, 2026.

The letter expresses concern over Congress programming framing ME and Long Covid through outdated psychosocial/behavioural models rather than current biomedical evidence. It flags the inclusion of speakers Paul Garner, Alan Carson, and Trudie Chalder, arguing their frameworks risk misaligning with NICE guideline NG206.

The text outlines four demands:

    Ensure programming reflects biomedical evidence, not psychosocial models.

    Review how speaker sequencing shapes evidence interpretation.

    Position patient expertise as independent knowledge.

    Align all teaching with NICE guideline NG206.

The letter is signed by a two-column list of 58 supporting organizations (including Long Covid Advocacy, Action for ME, ME Association) and "+ 1200 individual signatures of patients, clinicians, researchers, carers & family members." Footer links: longcovidadvoc.com, @LongCovidAdvoc.
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Long Covid Advocacy @longcovidadvoc.com · 12/06/2026
🗞️ Stop Press: MON 15th - We are coordinating an outreach campaign to the Royal College of Psychiatrists Congress to ensure the community's concerns about the framing of Long Covid are heard. This is a powerful opportunity for them to #HearOurVoices Template post to C+P 👇️
Campaign infographic titled "#HearOurVoices" and "#RCPsychIC", demanding better ME and Long Covid framing from the Royal College of Psychiatrists. Left side shows a woman pushing a young woman in a wheelchair on a path. Below this, a dark block titled "1 Why?" states 58 orgs and 1200 people signed an Open Letter regarding concerns over Long Covid framing at the 2026 International Congress, noting "our concerns remain."

The main text outlines a "Social Media Campaign" with three steps: 1) JOIN community outreach on June 15th, 2) POST your story for congress attendees, 3) AMPLIFY using tags #RCPsychIC and #HearOurVoices. It provides a post template supporting up-to-date scientific representation and meaningful patient engagement. Bottom right includes a pink QR code, a link to "longcovidadvoc.com", and the "LONG COVID ADVOCACY" logo. A bright pink footer reads: "International response raises concern about Congress framing of Long Covid."
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Long Covid Advocacy @longcovidadvoc.com · 12/06/2026
Note: Our concern has never been that the Congress NOT debate biological illness. We would welcome informed, up-to-date & well presented discussions. Our concern is the framing of Long Covid through outdated & pseudoscientific models.
An open letter from Long Covid Advocacy addressed to Prof. Subodh Dave, President-elect of the Royal College of Psychiatrists, dated 12th May, 2026, as shown in 18080.png. The letter expresses concerns regarding the inclusion of speakers Paul Garner, Alan Carson, and Trudie Chalder in Congress programming due to their association with psychiatric-led psychosocial frameworks for ME and Long Covid. It argues that the programming positions psychosocial and behavioural frameworks as the primary lens, rather than relying on expanding biomedical evidence showing multi-system physiological dysfunction. The letter outlines four main requests to ensure programming reflects biomedical evidence, aligns with NICE guideline NG206, and values patient expertise independently. The document is co-signed by dozens of support and advocacy organizations, including Action for ME and Long Covid Support, alongside over 1200 individual signatures from patients, clinicians, researchers, carers, and families.
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Long Covid Advocacy @longcovidadvoc.com · 12/06/2026
Continue our outreach to Congress attendees for respectful dialogue with our planned Social Media Campaign on Monday 15th. The day Long Covid is being presented at Congress. More details to come 💙 #HearOurVoices #RCPsychIC
An advocacy campaign graphic from  titled "#HearOurVoices Social Media Campaign," which outlines a call to action regarding the Royal College of Psychiatrists. The top left features a photo of a person pushing a young individual in a wheelchair down a paved path. A numbered "How" section directs supporters to join community outreach on June 15th (the opening day of the congress), post their personal stories, and amplify their message using the hashtags #RCPsychIC and #HearOurVoices. A "Why?" sidebar notes that 58 organizations and 1,200 people signed an open letter expressing concern over the framing of Long Covid at the 2026 International Congress, adding that while they welcome the RCPsych response, concerns remain. The graphic includes a text template for sharing, a bright pink QR code linking to the open letter at longcovidadvoc.com, and the logo for Long Covid Advocacy.
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Long Covid Advocacy @longcovidadvoc.com · 12/06/2026
...about 🔹better evidence 🔹appropriate representation 🔹patient expertise 🔹constructive engagement 🔹future policy ...remain. We will therefore...
The concluding page of a formal letter from the Royal College of Psychiatrists, shown in 18086.png. The text states that the views and comments of all speakers, panellists, and participants are their own and do not represent the established views of the College. It notes an expectation for all event program content, as well as the behavior of speakers and delegates, to be professional, respectful, and aligned with organizational values. The letter concludes with "Yours sincerely," followed by the signature and printed name of Dr Lade Smith CBE, President. The footer contains institutional registration details and the tagline "NO HEALTH WITHOUT MENTAL HEALTH."
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