Speakers include Christopher Armstrong, Chris Ponting @cgatist.bsky.social , Oystein Fluge, David Putrino @putrinolab.bsky.social , Carmen Scheibenbogen @scheibenbogen.bsky.social , and many other ME/CFS experts. #MEcfs #LongCovid

M.E.: "How it can shrink one's world, bit by bit" by Kornelia Paulsen (who no longer appears to be on X or IG). #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #SevereME

“We have much more technology available now than we did years ago - proteomics, metabolomics, genomic analysis, immune profiling. We may not yet have ideal biomarkers, but we are finding objective, biological changes.” - Dr. Hector Bonilla Watch our interview here: https://ow.ly/3gYA50YksmX

"don’t criticise the psychologisation of ME because I feel stigmatised by mental illness; I criticise it because it doesn’t fit the facts" "the lack of even the will to understand it among people whose job it is to do so is more traumatic and it is culpable" 1/2

"The problem... [is not] how much you can do in the first place. The problem is how much you can recover from" ⬆️ 💯 This ♥️🙏 #pwME #pwLC #pwvsME

For non-Substackers it's also on our website: www.longcovidadvoc.com/post/psychol...

🌟The first in our new 101 back to basics series. In this article we look at Psychologisation. If there's a topic you'd like us to cover please let us know in the comments! 🎧 Audio available 🖇️ tinyurl.com/52vthd5b

The book Invisible Illness has caused a bit of a stir among many patients. Here are some further thoughts on the controversy. virology.ws/2026/02/16/t...

Yo, #NEISvoid? Anyone with #MECFS or related conditions notice any unusual fx from meloxicam?

(Now I have moderate ME with #LongCovid additions & exacerbations and really wish #GreatestMEdicalScandal gets more coverage (!) and that researchers at @openmedf.bsky.social @polybiorf.bsky.social @mecfsresearch.bsky.social get more funding so these illnesses stop causing endless grief & suffering)

and there were a lot of great people to chat with!) But the boom & bust caught up with me & I had to also stop my little yet financially essential freelance work from home. And I’m wondering how many people with #LongCovid with mild ME now (& able to go to Tulum) will be where I am in 10 years 😮‍💨

Realizing this part is especially egregious to me because I’m Mexican and 15 years ago I had very mild and undiagnosed yet very limiting ME and moved to Puerto Vallarta and did all the ‘wellness’ things and even considered yoga teacher training and couldnt figure out why aerobic & strength training…

In-depth article from Cournoyer examining Invisible Illness by Emily Mendenhall. It's an astute critique that makes clear that whilst the author tried to take a disability justice stance it ultimately failed because it didn't hold to crucial systemic disability justice issues like masking 👇

Emily Mendenhall’s new book, Invisible Illness — which promises a history of poorly understood chronic conditions — fails to convey the severity of infection-associated chronic conditions, demands for treatment, or importance of infection prevention. bit.ly/3MO4BGZ

For @thesicktimes.org, I looked at the state of COVID safety in live music and how artists and event producers can still protect themselves and audiences thesicktimes.org/2026/02/17/t...

Disabled people & those who cannot afford to get Covid deserve to be able to see art in public and make art in public.

While most of the music industry has “moved on,” COVID-conscious performers have been working to prevent their shows from being superspreaders. Read more from @katiechow.bsky.social: bit.ly/3ZIW4YQ

Not quite the same but I’ve been thinking about how so many of us do audio, radio, DJ, performance work in respirators. I’m live on the radio for 2-3 hour shifts plus prep work, masked the whole time. No one can tell who’s masking on a radio or podcast mic, but we’re out there!

Dr. Christopher Armstrong and his team at OMF's Melbourne ME/CFS Collaboration have been awarded nearly $1 million through the Australian government’s Medical Research Future Fund (MRFF) for the project Energy inefficiency in #LongCOVID and #MECFS. 👉 Learn more: https://ow.ly/hj9F50Yh6TY

International ME/CFS Conference 2026: Registration for the online livestream is now open. 7-8 May, 2026. Latest research on #mecfs and #LongCOVID from leading international experts. Register now: https://t.ly/Ow2Co

(UK) @thereforme.bsky.social co-founder @karenlhargrave.bsky.social writes about applying for Continuing Healthcare funding www.thereforme.uk/p/why-is-con... Screenshot from latest Science for ME weekly update #SevereME #SevereMECFS #VerySevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis

🚨‼️ We are beyond an emergency situation regarding Nevra's well being‼️🚨 Nevra currently has a UTI with fever which is causing her other conditions to flare dangerously. Please donate and share! PayPal: paypal.me/SaveLizNevra GoFundMe: gofundme.com/f/save-nevra #pwME #MECFS #SaveLizNevra

@georgemonbiot.bsky.social please will you write about #pwME again? Savannah needs your help urgently 🙏🏻 #VerySevereME #MECFS

"Refusing" is such an incredibly loaded word in hospital contexts. #SaveSavannah #SevereME www.gofundme.com/f/severemerg...

The Sick Times: “Invisible Illness” could have been transgressive. Instead, it minimizes Long COVID By Shielding Cournoyer 'The book fails to convey the severity of infection-associated chronic conditions, demands for treatment..importance of infection prevention' thesicktimes.org/2026/02/13/i...

I've now had #MyalgicEncephalomyelitis 37 years (since age 16), 31 years with #SevereME🙁 We need more public & private* research money to speed up progress Here's my story in Irish Independent m.independent.ie/life/health-... *List of research funds phoenixrising.me/myalgic-ence... #MEcfs #PwME

Just remembered this winter is my 20-year anniversary of developing ME/CFS. Two decades later; more than three million Americans affected; still zero FDA-approved treatments. #TripleTheNIHBudget and start funding ME/CFS research.

If anyone has old #MECFS materials they might need to downsize, I’m still interested in Chronicles (though I don’t know when I’ll be well enough to scan them) and a local university has a small archive from CT ME advocates that they said they would be interested in expanding.

As we look forward to honoring National Caregivers Day on Feb. 20th, we are excited to share 3 new resources for our caregivers - 2 webinars & a compilation of wisdom from caregivers who are sick themselves. Thank you to Kim Moy & Denise Lopez-Majano! https://ow.ly/70Gp50YeANv

Grateful for Cournoyer’s review 🙏🏻 @thesicktimes.org “Unexamined are the politics involved in authorities betting on patients performing free labor as the solution to their suffering, rather than betting on healthy people investing time, energy, and money into repurposing or developing medication.”

This piece started as a letter to the editors that Shielding wrote in response to our posting an excerpt from the book (which we later took down). I really appreciated that we were able to expand it into a full review, and of course pay Shielding for this important critique!

Today @thesicktimes.org: Shielding Cournoyer reviews the book "Invisible Illness." "Though Mendenhall accurately acknowledges the harm of psychologizing illness, her thesis does exactly that." thesicktimes.org/2026/02/13/i...

Thrilled to get to be part of this!

A fantastic opportunity for budding writers! Registration link in post 👇

The risks of SARS-CoV-2 and other airborne pathogens can be severe, but the media continues to stigmatize Olympians taking precautions as "worried" and "extreme". We know #LongCOVID can affect anyone, even elite athletes. In the @thesicktimes.org today 😷🦠 thesicktimes.org/2026/02/10/w...

🧸 Study recently connected “chronic absenteeism” to pediatric Long COVID 🩸 Study found that IgG isolated from people with ME can destroy mitochondria in endothelial cells 🧠 ADDRESS-LC (assessing Bezisterim), has opened two more study sites #LongCOVID research updates: bit.ly/464c7Eh

Time's 100 leaders in health 2026. Immunologists, virologists, epidemiologists, neurologists, oncologists, activists. Not one mention by any of them. Not a word. The disconnect often hurts my brain, but today, it's breaking my heart. 7/7 #LongCOVID #MECFS #ChronicIllness #MedSky

I went from climbing summits, playing competitive basketball, producing music, organizing climate actions and playing with my child to being bed bound — subject to Post-Exertional Malaise following any physical or mental activity whatsoever. A 2025 reinfection made it worse. 5/7 #LongCOVID

Not only does this glaring omission by #Time100 make it harder for people to justify keeping up precautionary measures #CleanAir, #MaskUp; it implies that what's happened to me mustn't be that bad or that common. Isn't it though? #LongCOVID #MECFS #MedSky #CleanAir 3/7

Some fabulous speakers at this symposium: Ponting, Klimas, Holgate, Altmann, Wust, Scheibenborgen, Morten, Alwen Presentations, workshops and next steps. 🖇️ mecfsalliance.org.uk 👇

This week’s cartoon is about the astonishing rise of these people and their awful ideas. They built their careers on our bodies! @theguardian.com @davetuller1.bsky.social #ME #Chronicillness #LC #PEM #POTS #LivesWeCannotLive #MissingMillions @meassociation.org.uk @longcovidsupport.bsky.social

Doesn’t capture how devastating it is, but I appreciate the absurd/gross/embarrassing lack of self awareness

“…whispering because our muscles cannot hold the volume of injustice.” As a currently homeless person w/ #SevereME my cries for help are only done on the internet now & even those are mostly ignored💔 #pwME #disability #SOS #MyalgicEncephalomyelitis #GreatestMEdicalScandal bsky.app/profile/diat...

Anne Frank died from a typhus epidemic that spread through the concentration camp where she was imprisoned.

What #pwME #pwLC artwork, cartoon, short video conveys the irony that, while stress is not the cause to explore, it can certainly trigger #PEM etc, and a major source of stress for patients is the misinfo that mind-body remedies appropriately treat #ME #LC (thus blocking biomedical $ & benefits 🔄)

#mecfs #pwME There's an update on Savannah's fundraiser and it is fucking grim. The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks. This is MURDER. All 3 updates are from today.

Rassemblement aujourd'hui à Marseille pour dénoncer le scandale politique et sanitaire de l'EM/SFC en France : maladie non reconnue, soins inadaptés, droits bafoués, recherche absente. En pensée, la rage au cœur, depuis mon lit. @voxem.bsky.social instagram.com/voxem.sfc #voxEM #MECFS #EMSFc

Forschende können sich jetzt bewerben: ME/CFS Research Foundation startet das Research Funding Programme 2026. 2 Mio. Euro für biomedizinische #MECFS - Forschung in Deutschland. Bewerbungsfrist: 30. April 2026. 🔗 https://mecfs-research.org/researchfunding2026