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Long Covid Advocacy

@longcovidadvoc.com

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. https://www.longcovidadvoc.com/ 🛍️ https://longcovidadvoc.shop/

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Long Covid Advocacy@longcovidadvoc.com · last wk.

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.
Long Covid Advocacy@longcovidadvoc.com · 3w ago

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.
cbme-mark.bsky.social@cbme-mark.bsky.social · 3w ago

Three ME support groups have written an open letter to the Royal College of Psychiatrists challenging its defence of last month’s Congress session on ME and Long Covid. A vague “biopsychosocial” framework cannot rescue treatments the evidence has already rejected.

Patient-Led Research Collaborative@patientled.bsky.social · 3w ago

Great article on a PLRC-funded project! "Her idea has, over time, become a familiar one: an infection which the body failed to clear or deal with properly has left one of the big guns of the immune system–the cytotoxic T-cells–in a state of chronic activation." @cortjohnson.bsky.social #LongCovid

Hitting the Target? ME/CFS and long COVID T-Cell Researchers on Uncovering the Precise Drivers of the Illnesses - Health Rising

Dr. Selin and company believe they can solve one of the key mysteries of ME/CFS and long COVID: exactly why the T-cells are getting pummeled.

healthrising.org

Tatiana Trifan #FBLC@tatianatrifan.bsky.social · 3w ago

If one looks at what types of studies on Long Covid got funded, you think they were aimed at Complementary and Alternative Medicine, disregarding biomedical research. Music apparently "heals" LC, meditation, reframing thoughts to get healthy, and other pseudoscience. Similar to Conspirituality 👇

Screenshot from the book Conspirituality by Beres, Remski and Walker: Parts of it read: "In 2012, the Journal of the American Medical Association came out with a paper slamming the NCCIH for funding study after study, yet failing "to prove that CAM [Complementary and Alternative Medicine] therapies are anything more than placebos." They pointed out that the agency spent $250,000 to test the effects of energy healers on rabbits with high choles-terol, $374,000 to find out whether aromatherapy heals wounds, $406,000 on coffee enemas as a cure for pancreatic cancer, $417,000 on distance heal-ing for HIV patients, $2 million on using magnets for arthritis, carpal tun-nel syndrome, and migraine headaches, $22 million on prayer for treating diseases, and a whopping $110 million on a range of fringe methods to re-duce diabetes symptoms-including the therapy of expressive writing. For the studies in which results were reported-many rendered no results at all-no treatment performed better than placebo."The cover of the book Conspirituality: How New Age Conspiracy Theories Became a Health Threat, by Beres, Remski and Walker.
Long Covid Advocacy@longcovidadvoc.com · 3w ago

Winner of our giveaway is no.91 @alivemiracles.bsky.social on Bluesky. We numbered the entries and @tedmonroe91.bsky.social chose the number by random generator. Congratulations! 🎉

Long Covid Advocacy@longcovidadvoc.com · last mo.

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.”
Long Covid Advocacy@longcovidadvoc.com · 4w ago

1/ The long awaited STIMULATE-ICP Long Covid drug trial has dropped in the Lancet. It needs careful interpretation. But essentially we have another trial that's a dud because phenotypes weren't considered. It was also high risk because...

Long Covid Advocacy@longcovidadvoc.com · 4w ago

Last 2 days of giveaway! (Closes midnight 12th July) #longcovid #neisvoid #pwME #booksky #chronicillness #disability

Long Covid Advocacy@longcovidadvoc.com · last mo.

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.”
Long Covid Advocacy@longcovidadvoc.com · last mo.

We have written a private letter to Susanna Clarke regarding her response to the centenary Virginia Woolf's 'On Being Ill' and narratives of safety and blame in her Guardian article. www.theguardian.com/books/2026/j...

Susanna Clarke: ‘I had been ill for 11 years. I felt like I was about to fall off the world’

One hundred years after Virginia Woolf explored the limitations of language in On Being Ill, the Piranesi author reflects on the power of storytelling to shape our experience of sickness

theguardian.com

Long Covid Advocacy@longcovidadvoc.com · last mo.

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.
Miles W. Griffis@mileswgriffis.bsky.social · last mo.

"If Wired can’t even be honest in acknowledging and making corrections, it would be foolish to expect honesty in how they deal with larger issues about the piece." @wired.com spelled ME incorrectly, & then lied about it in their corrections note. Where are their ethics? virology.ws/2026/06/29/t...

Trial By Error: Furor Over Wired's "Mind-Body" Article Continues | Virology Blog

By David Tuller, DrPH The furor over the Wired epic about mind-body treatments for Long Covid simmers on. "The Truth About Long Covid," published ...

virology.ws

Justine Barron@jewstein3000.bsky.social · last mo.

NEW ARTICLE from me for @fairmediawatch.bsky.social. "Media Won't Stop Psychologizing Long Covid" An overview of this unfortunate propaganda trend in the media since 2020, including where it comes from and what it gets wrong. fair.org/home/media-w...

Media Won’t Stop Psychologizing Long Covid

Media outlets that trumpet their journalistic integrity have used their prestige to launder an unproven, anti-science conspiracy theory about Long Covid.

fair.org

Long Covid Advocacy@longcovidadvoc.com · 2mo ago

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.
Long Covid Advocacy@longcovidadvoc.com · 2mo ago

The UK is in another heatwave 🥵 Heat and Chronic Illness often do not mix well, especially Long Covid and ME when dysautonomia is involved. 📩 Sharing our cooling tips 101 Stay safe and cool 🧊 www.longcovidadvoc.com/post/cooling...

Cooling Tips 101

How to breeze through a heat wave with ME & Long CovidAudio version on SubstackHeat can significantly worsen symptoms for people with ME and Long Covid, particularly for those with a strong…

longcovidadvoc.com

Long Covid Advocacy@longcovidadvoc.com · 2mo ago

We've had a pretty busy few weeks with the Royal College campaign so we are having a few days breather. But we will be back soon with our next steps and a response to the Royal College of Psychiatrists!

ME Association@meassociation.org.uk · 2mo ago

1/3: Long Covid Advocacy are campaigning across social media for concerns about the framing of Long Covid at the Royal College of Psychiatrists Congress to be heard today, on the opening day of the Congress. If you'd like to support you can reshare their graphics, and or copy the following text:

#RCPsychIC #HearOur Voices Social Media Campaign Call to action to highlight our voices to the Royal College of Psychiatrists How 1 JOIN the community outreach on 15th June the opening day of the congress 2 POST on social media YOUR voice and story for congress attendees to see 3 AMPILFY your message with the congress tag #RCPsychIC and #HearOurVoicesOpen Letter to the Royal College of Psychiatrists Dear Prof. Subodh Dave, President-elect, LONG COVID ADVOCACY 12th May, 2026 We are writing on ME Awareness Day in relation to the Royal College of Psychiatrists' ongoing work on ME and Long Covid, and in the context of your stated commitment to integrating patient expertise into clinical practice and institutional decision-making...We therefore ask that the Royal College: • Ensure Congress programming on ME and Long Covid reflects current biomedical evidence and clinical guidance, and is not presented through outdated behavioural or psychosocial models. • Review how speaker sequencing and session framing influence the interpretation of evidence. • Ensure that patient expertise is positioned as an independent form of knowledge, not subsumed within pre-existing theoretical models...
Long Covid Advocacy@longcovidadvoc.com · 2mo ago

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."
Long Covid Advocacy@longcovidadvoc.com · 2mo ago

Fancy a longer read about our Open Letter concerning #RCPsychIC ? Signed by 58 charities & orgs & 1200 patients, clinicians, researchers, carers (9% Drs) 👀📩 Letter download 👇️ www.longcovidadvoc.com/post/open-le...

Open Letter: Solidarity, Engagement, and Next Steps

The response has been extraordinary. To date, the letter has received 1,200 individual signatories and the support of 58 organisations, including clinicians, researchers, patient advocates, and…

longcovidadvoc.com