Canary in the Coal Mine: 'Long Covid in Fiction' 'The ongoing pandemic is affecting authors just as it's affecting everyone else. We’re not supposed to talk about it, and we’re treated with disdain..just the same, authors are not supposed to write about it' www.whoevenreads.com/canary-in-th...

Artists illustrating Long COVID thesicktimes.org/2026/01/16/d...

All members of the APPG on ME need to read this article from @abrokenbattery.bsky.social which clearly shows how much work needs to be done if there is to be any real, lasting change for #pwME medium.com/@abrokenbatt...

Can't recommend this article highly enough. Seeing key events listed chronologically clearly shows how much work remains to be done if there is to be justice for #pwME & an end to the relentless corruption. #ME #MEAwareness #MedSky medium.com/@abrokenbatt...

Great to have this new review for a relatively neglected area in the research literature An Overview of Severe Myalgic Encephalomyelitis Free fulltext: www.mdpi.com/2077-0383/15... #MyalgicEncephalomyelitis #SevereME #MEcfs #CFS #PwME #ChronicFatigueSyndrome #SevereMECFS

Given this & the close involvement of the #ME orgs with BACME, I feel there's a strong case for #pwME to petition to have BACME shut down completely, in order to protect #pwME.

11/ Characterising reactions to patients as “shocking” while Wessely appears eloquent is in danger of feeding a stereotype of difficult patients vs benevolent expert. First-hand evidence & transparency are crucial here, so counter-claims are clear, especially when there is a power imbalance.

This is why BACME should be shut down & why the ME orgs should not be working with them in any capacity. @meassociation.org.uk @actionforme.bsky.social #ME #pwME

6/ Second, the dysregulation / threshold framework Mendenhall proposes is conjectural, much like historical theories of hysteria. It isn’t a demonstrated disease mechanism for ME or other de-legitimised illnesses or extensive patient testimony.

5/ Critics raising concerns about psychologising aren’t insisting on dualism or mental purity. They’re pointing to how integrated unevidenced models have been used to manage uncertainty & dissent, rather than actually resolve the biology of the illness.

4/ One of the most persistent and pernicious issues we have in the community is people claiming they do not psychologise but then proceed claiming mind-body intergration or "physicality". This is the norm in fact, be it brain trainers, BPS Drs, advocates. open.substack.com/pub/longcovi...

Given the news that W☠️ssely threatened to sue Emily Mendenhall author of "Invisible Illness", it's not at all surprising that David J Black's long awaited book on #ME the #PACETrial & the BPS Cabal hasn't been published Here's his '23 blog post on SW www.scottishlegal.com/articles/dav...

“Wessely read a version of the writing & threatened to sue me if it didn’t include the other side.” - Mendenhall This raises serious questions about academic pressure, power, and whose voices shape the narrative around ME and Long Covid.

1/ In response to Emily Mendenhall’s recent Substack on critiques of her book Invisible Illness by the community & Wessely's legal threats. Anthropology is often open to dialogue & critique, so let’s situate this moment historically & structurally. 🧵 open.substack.com/pub/emilymen...

@georgemonbiot.bsky.social @davetuller1.bsky.social An academic has been intimidated into downplaying her views on CBT and GET by Wessely threatening to sue. The book is out in the world and will influence readers. We need this story to be more widely known. Can you help? #LongCovid #ME

And here are the links: ▶️ Original Explainer Video (27 mins) youtu.be/RiwX9Y0NbiQ?... 🗒️ Explainer Video Transcript medium.com/@abrokenbatt... ✏️ New Follow up article medium.com/@abrokenbatt...

My #MECFS scandal explainer video has just passed 200,000 views. Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since. medium.com/@abrokenbatt...

You may not think you argue this but you do. You should get #pwME to proof-read your book if you want to write about us. Because you got a lot of things wrong about #MECFS. And accepting the UK MRC calling the PACE trial "robust" shows how little about our illness you have grasped, fundamentally.

The timeless work of Norwegian illustrator Kornelia Paulsen (who no longer appears to be on Twitter or Instagram). 😕 #MyalgicEncephalomyelitis #MECFS

🗞️We have a fascinating article by guest writer @drelke.bsky.social on Mendenhall's new book 'Invisible Illness'. Suffice to say there are complexities & controversies... 🖇️ tinyurl.com/vct9n5ez

Thanks to @longcovidadvoc.com for hosting my essay. #LongCovid #ME

🧪We are seeing more and more evidence of the devastation that Cvd plays on the immune system This increased risk in autoimmune disease is not reassuring We know autoimmunity predominantly affects women who are often roadblocked in medicine to a dx Cvd again plays into systemic inequalities 🖇️👇

BBC Radio 4 Inside Science interview with Professor @daltmann.bsky.social (8 mins) discussing the Rosetta Stone study, a £1.1m research programme funded by the @meassociation.org.uk to investigate shared immunological pathways between #MECFS and #LongCovid. youtu.be/eu8Lj_R-OtQ?...

It was great visiting the University of Edinburgh today to learn more about their DecodeME and PRIME projects. It was fantastic meeting so many researchers and specialists in the ME field too.

Greenland

Via FNDNope #ME #pwME #LC #MEAwareness #MedSky

It is the source of so many of our evils: the astonishing concentration of wealth in the hands of a very few, and the immense political power that gives them. We cannot solve our problems until we tackle it. This week's column. www.theguardian.com/commentisfre...

What disability and illness advocacy groups are doing good work in Minnesota right now in terms of direct aid and background activism/advocacy?

Please nominate Invest in ME Research (charity number 1153730) #MECFS movementforgood.com/draws/1000

Excellent blog on the 2025 Big Survey by @kacheston.bsky.social which explains how the info shared by #pwME will be used & how it helps all pwME The survey is a great opportunity to share your experience & recommendations & generally rant if you need to 🔗📋👇 www.actionforme.org.uk/research-cam...

1) In a Bulgarian study, 65 ME/CFS and 54 Long Covid patients showed similar immune alterations when compared to healthy controls. They had lower NK and CD8+ T cells, but increased inflammatory cytokines such as IL-6 and TNF.

Excellent blog on the 2025 Big Survey by @kacheston.bsky.social which explains how the info shared by #pwME will be used & how it helps all pwME The survey is a great opportunity to share your experience & recommendations & generally rant if you need to 🔗📋👇 www.actionforme.org.uk/research-cam...

Thank you so much @thereforme.bsky.social for publishing this post about @actionforme.bsky.social's Big Survey! The Big Survey is open until 27 January. If you're yet to fill it out, we would love to hear from you! www.actionforme.org.uk/research-cam...

Fantastic to see this post from our v. own @kacheston.bsky.social on the @thereforme.bsky.social Substack. If you live with ME or Long Covid with ME symptoms, there is still time to take part in the @actionforme.bsky.social Big Survey (closes 27 Jan) Take part here: tinyurl.com/2025-Big-Sur...

🔴The EU’s ‘Farage Clause’ Shows the Damage Reform Is Already Doing to the UK As well as making us poorer each year, Farage’s Brexit is also making us more vulnerable to those who wish to do us harm, argues @chrisgrey.bsky.social bylinetimes.com/2026/01/13/t...

The government sits and watches as Heba dies. It's heartbreaking, horrible, almost impossible to compute. Didn't people vote in the hope (however forlorn) of ending the Tories' psychopathic mode of government? Yet on it goes, under Keir Starmer. www.theguardian.com/uk-news/2026...

"The short answer is that the Treasury took no action at all." At the UK Covid Inquiry (Module 9), the Long Covid Groups were clear: the economic impact of Long Covid was foreseeable and ignored, leaving many people without support. Watch our closing statement: www.youtube.com/watch?si=ikR... 🧵 👇

It's not the responsibility of seriously ill #pwME to do the hard work of raising awareness of #ME nor to raise funds for the MEA all of which could potentially jeopardise our own health. MEA have the funds to employ professionals to do this essential work

I'm probably preaching to the converted, but I did a little video on why you shouldn't call ME/CFS 'chronic fatigue syndrome'. www.youtube.com/watch?v=Dn41...

Comment today from Dr Nigel Speight #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #LongCovid #LongCovidKids #LCKids

"We lack such treatment (for ME) not because #ME is some “weird” “mysterious” illness that cant be understood Its because our political medical & scientific institutions have chosen to make ME the lowest-funded illness relative to disease burden by a mile"Nick Joliat 👇 massmecfs.org/members/memb...

1) This new theory by Resa Pretorius and colleagues focuses on endothelial dysfunction in ME/CFS and Long Covid. The endothelium is the layer of cells that forms the inner lining of blood and lymphatic vessels.

Medscape Multiple Abnormal Responses to Exertion Seen in #MECFS "People with ME/CFS showed multiple maladaptive proteomic responses to exercise compared with matched sedentary controls, a new study found." www.medscape.com/viewarticle/... #Research

Multi-omics identifies lipid accumulation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cell lines: a case-control study @danielmissailidis.bsky.social et al. #MECFS link.springer.com/article/10.1...

📘 The BHC Clinical Care Guide is now available on Amazon! More accessible, easy to order, and delivered right to you. Every purchase helps us get more guides to providers who care for people with ME/CFS, Long COVID, and other IACCs. 👉 Order your copy today: https://www.amazon.com/dp/B0G3CNDDSB

KPFA, 'Against the Grain': 'The Afterlives of Viral Infection' '..a look at the complicated history of long lasting post-viral conditions. Medical anthropologist Emily Mendenhall considers how the medical establishment has..ignored..invisible illnesses like long Covid..' kpfa.org/episode/agai...

The Sunday Times, UK. 4th January 1970. The only UK newspaper article we could find on Beard/McEvedy's 'Reconsideration' from the time. #myalgicencephalomyelitis #myalgice #cfsme #myalgice

Laila Solaris shares the beginning of her essay "The Color Orange" with us. The full essay can be found in Near-Life Experiences The Pillow Writers Anthology Issue 2. Learn more about the truly amazing @pillowwriters.bsky.social & how to get your copy here: ow.ly/6Grc50XT8VK #pwME #spoonie

If the Palestine Action hunger strikers die - which they could do at any moment, as they are now very close to the end - it will be the government that killed them. Today’s column explains why. Please share, and write urgently to your MP. www.theguardian.com/commentisfre...