Sign in

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

PostsRepliesMedia
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
36533
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
14717
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.
24615
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 🖇️👇
194
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 🙏
16630
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!
1278
Long Covid Advocacy @longcovidadvoc.com · 26/09/2026
George Monbiot is on LBC NOW!
0144
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
1157
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.
24417
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
0257
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.
29537
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.
3318
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.
22615
Reposted by Long Covid Advocacy
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.
17223
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
28769201
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
03411
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
1204
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.
1197
Reposted by Long Covid Advocacy
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.
212348
Long Covid Advocacy @longcovidadvoc.com · 15/09/2026
Need to investigate further, but a trial for Long COVID with initial phase two promise.
3203
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...
37237
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.
043
Reposted by Long Covid Advocacy
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
0268
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”.
218282
Long Covid Advocacy @longcovidadvoc.com · 05/09/2026
👋 Hello all Just a quick note to say that we are back from our August break and easing our way back into advocacy. If there's anything you think needs our attention please just drop a comment. 💙 Solidarity as ever
1312
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.
171
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
131
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
0270
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.
1248
Reposted by Long Covid Advocacy
Renegade Research @renegaderesearch.bsky.social · 20/07/2026
1/ 🚨 Big news: @solveme.bsky.social has awarded @renegaderesearch.bsky.social a Catalyst Award to launch SIGNAL - a decentralized platform to test promising therapeutic devices for ME/CFS and Long COVID. Here's what it means for patients 🧵
1228
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.
23916
Reposted by Long Covid Advocacy
Patient-Led Research Collaborative @patientled.bsky.social · 14/07/2026
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
healthrising.org
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.
1268
Reposted by Long Covid Advocacy
Tatiana Trifan #FBLC @tatianatrifan.bsky.social · 13/07/2026
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.
43611
Long Covid Advocacy @longcovidadvoc.com · 13/07/2026
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! 🎉
162
Long Covid Advocacy @longcovidadvoc.com · 11/07/2026
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...
1355
Long Covid Advocacy @longcovidadvoc.com · 11/07/2026
Last 2 days of giveaway! (Closes midnight 12th July) #longcovid #neisvoid #pwME #booksky #chronicillness #disability
091
Long Covid Advocacy @longcovidadvoc.com · 07/07/2026
Giveaway is still open!
063
Long Covid Advocacy @longcovidadvoc.com · 06/07/2026
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...
theguardian.com
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
3131
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.”
11309
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.
1115
Long Covid Advocacy @longcovidadvoc.com · 03/07/2026
✍️ Another excellent article by Dr Elke Hausmann. Her point that the prevalent medical textbook 'Kumar & Clarkes' STILL has ME as CFS in the psychiatric section despite a well-supported petition is well worth a read 👇 #longcovid #medsky
0258
Long Covid Advocacy @longcovidadvoc.com · 03/07/2026
💌 FREEPOST until midnight on Sunday! Summer items available like cool, organic cotton t-shirts, water bottles and lite totes. All profit goes to research 👩‍🔬 longcovidadvoc.shop
longcovidadvoc.shop
Home
033
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.
12914
Reposted by Long Covid Advocacy
Miles W. Griffis @mileswgriffis.bsky.social · 29/06/2026
"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...
virology.ws
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 ...
12310
Reposted by Long Covid Advocacy
Quadram Institute @quadraminstitute.bsky.social · 30/06/2026
🆕 Ground-breaking @horizoneu.bsky.social Grant Awarded to EMERG-led Consortium to Advance Biomedical Research in Myalgic Encephalomyelitis (ME) buff.ly/78IMqzH
quadram.ac.uk
Quadram Institute Announces Major European Research Milestone in Myalgic Encephalomyelitis (ME) - Quadram Institute
Ground-breaking EU Horizon Grant Awarded to EMERG-led Consortium to Advance Biomedical Research in Myalgic Encephalomyelitis
02813
Reposted by Long Covid Advocacy
Justine Barron @jewstein3000.bsky.social · 25/06/2026
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...
fair.org
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.
410247
Reposted by Long Covid Advocacy
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.
14542
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.
14542
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.
151
Long Covid Advocacy @longcovidadvoc.com · 21/06/2026
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...
longcovidadvoc.com
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…
14013