I just read “Chronic fatigue syndrome from vagus nerve infection: A psychoneuroimmunological hypothesis” by Michael B. VanElzakker. It’s very well written and explains various things well, like what are Glial cells & what substances they can pump out to cause sickness behaviour & neuropathic pain>

The WHN-PAIS Conference, which focuses on Post-Acute Infection Syndromes (PAIS) like #LongCovid, will happen for the first time in August and in Amsterdam! 😍 We are also launching The International Society for Long COVID and Post-Acute Infection Syndromes, more info soon! With @thewhn.bsky.social

#ME #LongCovid #Lyme #POTS #PEM #LivesWeCannotLive @meassociation.org.uk @longcovidsupport.bsky.social #Justice4ME @ashleydaltonmp.bsky.social @decodemestudy.bsky.social @thelancet.com @nhsengland.bsky.social

Presentation to SHBN (Safer Healthcare Biosafety Network) on behalf of CATA (Covid Airborne Transmission Alliance) with comment on the UK Covid-19 Public Inquiry Module 2 report published in November. tinyurl.com/DO-SHBN-21-1... (Apologies: Tech issues prevented earlier posting)

Describing deskilling via AI-assisted taskification of work as *upskilling* is some chutzpah People will buy into it, too - like they did the last time

I think I might take one of these "under 20 minutes" AI skills courses the UK Govt. seems very keen on everyone doing and live-post it here... Maybe we can all learn something together! The press release sends me to aiskillshub.org.uk/aiskillsboost/ - let's go and see!

Heartfelt email to GP practice manager No.46383 sent, in the hope of a genuine and caring response re #pwME, GP training and accessible healthcare. Not holding my breath, obviously.

Last autumn, #MEAction Scotland went to the Scottish Liberal Democrat Party Conference & spoke to journalist, Justin Bowie of @thecourieruk. We then put Justin in touch with our supporters. www.thecourier.co.uk/fp/politics/...#MEAction #MyalgicEncephalomyelitis

Perfect 🧵

I get one event a week. On a good week. By "event" I mean "leaving the house or interacting with people". It takes several days to recover. If life events (usually gp appts or emergency plumbers etc) mean I have to do 2 things in one week, you can write AT LEAST the whole next week off. #mecfs

As I lie here in a post-exertional malaise (PEM) crash, I keep reminding myself to read my own post from a few months ago, Why I Can’t Just Meet You for Dinner. #PEM #LongCOVID #MECFS open.substack.com/pub/centerle...

This is how many people with #LongCovid and #ME live. The daily calculations and struggles. There is not much scope for actively changing your ‚lifestyle‘, when you are constantly in reactive mode to what your body needs you and allows you to do. Thank you for such a clear description 🙏

£1 per classroom per day. That's what it costs to protect children from 5 health conditions: asthma, infections, heart disease, learning loss & long-term brain health. The Corsi-Rosenthal Foundation UK donates air cleaners to schools & clinically vulnerable people. #CleanAir

One of my dear friends is raising money to buy a wheelchair accessible vehicle. I can't even begin to tell you the amount of crap she's had to go through to get this far in her journey. If you attended my ME/CFS election debrief she was the one who did a grief session <3 please share.

Two years today since my friend @dutchlauren.bsky.social passed away 🕯💙 Going to eat some nuggets (which she loved) and will try to watch one of her favorite movies. #severeME #reMEmberLauren

An #MECFS calculation — we do this countless times a day: I am hungry for a substantial meal, with protein. My caregiver is unavailable to prepare me food. My teen is unavailable to stand in. Remaining children too young. I feel like I could go to the kitchen and make a grilled ham and cheese. BUT

Vielleicht sollte ich das klarer formulieren: Das #biopsychosoziale Modell ist kein wissenschaftliches Modell. Es versäumt es nicht nur, die Konzepte richtig zu definieren, sondern unterscheidet auch nicht zwischen kausalen, korrelativen und falschen Korrelationsbeziehungen. 1/4

Governments, public health and medical authorities know much of this is caused by COVID & other infections, that a lot of this is Long Covid, which they choose to do nothing about and cover up. They know it. They're lying about not knowing why. They're doing what the tobacco industry did.

This could have been written today, applies just as well to Long Covid. Absolutely nothing has changed since, a disaster of choice that has destroyed millions of lives and will continue to do so until there's accountability for it.

The #ME community need an update on Savannah from the Lewisham & Greenwich NHS Trust Chief Executive Dr Ben Travis & from @actionforme.bsky.social If Savannah isn't safe no #pwME is safe while under @england.nhs.uk 'care'

I recognize what my nervous system cannot tolerate, and the system still refuses to acknowledge the harm it has caused, continues to cause, or how to responsibly support those traumatized by its own practices. #MEcfs #FQToxicity #Fluoroquinolone #Toxicity #MedicalTrauma #IatrogenicCPTSD

There are people trying to stop others from using whistles, and next they'll say it's ableism. As your disability advocate friend, I will be the first with serious sensory sensitivity to say that I would rather be in pain than someone get abducted, or shot. Block/mute this argument, it's an op.

#ME #LongCovid #Lyme #POTS #PEM #LivesWeCannotLive @meassociation.org.uk @longcovidsupport.bsky.social #Justice4ME @ashleydaltonmp.bsky.social @decodemestudy.bsky.social @thelancet.com @nhsengland.bsky.social @georgemonbiot.bsky.social @profstevegriffin.bsky.social @davidjoffe64.bsky.social

Wish me luck. It was 34°Celsius today. It will be 44° tomorrow & I’m NOT ALLOWED air conditioning. #Abusers have air conditioning next door & in their spare room. I have #POTS #Dysautonomia Help me escape 🥺🥵🔥 #MutualAidMonday #MutualAidAustralia #HelpSky #MutualAid 💕💸

This article describes a case report in which a patient with #severeME dying of malnutrition was denied the home parenteral nutrition she needed. #EndMalnutritionInME www.mdpi.com/2077-0383/15...

30 years waiting for this material to be shown in a court of justice. How many more years we will have to wait? #GreateatMEdicalScandal Million thanks @abrokenbattery.bsky.social and hundreds #pwME for your unrelentess work.

On the dangers of ‘mildwashing’ #LongCovid thesicktimes.org/2026/01/13/s...

If you read one thing on Emily Mendenhall & her book "Invisible Illness" I can highly recommend this article. Huge thanks as always to @longcovidadvoc.com for their excellent & incredibly important work. #ME #pwME #LC #MEAwareness #MedSky

I cannot imagine living with severe ME, let alone doing so in an actual war zone. I have just donated. Can you?

Severe #MECFS can often feel like your body is a war zone. I can’t imagine living with it and being in a war zone aswell - with bombs falling outside your home. I’ve just donated to help Daryna escape from Ukraine to Germany.

Labour are treating disabled, and trans women and girls the same way. They're only listening to the people who want to hurt us. It doesn't matter what reports or studies or evidence say let alone the law. They're weaponising the state to satisfy their egos.

So much loss in a decade - from my ME/CFS photo project glass.photo/andrewgiffor... ALT: colour photo of a dying blue-purple butterfly plant leaf dangling precariously from a blue-grey plant pot #Photography #MECFS #LongCovid #StillLife

@zackpolanski.bsky.social @greensagainstcovid.bsky.social Zack please can you have a look at the below. Identical circumstances to how Maeve died 5 years ago. Nothing has changed in the meanwhile. We have to stop the NHS from killing people with ME. Can you help?

You’d think this is made up. That it can’t be true But then you read about the death of Maeve Boothby-O’Neill and others and you realise it’s happened before - it’s absolutely unbelievably cruel and bizarre #MEcfs

This is your reminder Savannah needs our help to stop the NHS starving her to death. Please email the hospital she is in. Details in post below www.thecanary.co/uk/analysis/... #mecfs #pwME #GreatestMEdicalScandal

It’s happening again. How can any medical ‘professional’ withhold food and fluid like this. It goes against everything I was taught in my training. Preserve life, prevent deterioration, promote recovery. Actively forcing someone to starve and dehydrate to death is morally wrong. Time to prosecute.

A friend surprised me with a Nice Thing and now I think I’m crying because I don’t know how to deal with Nice Things. Please share. mehrforschungmecfs.wordpress.com/2026/01/24/t...

People with ME/CFS will never get the protection we deserve unless people without ME/CFS decide to start giving a damn. We're all in this together.

The CFS-CARE study showed: After inpatient #rehabilitation 44% experienced a worsening of symptoms, only 13% showed improvement in the #Bell score. Furthermore, there were no effects on fatigue, pain, or cognition. This is not merely a null result; the data show: Rehabilitation is a risk for serious

A Black women with very severe ME is being denied care & nutrition by the NHS. Instructions and a template to email are contained in the posted article.

Does anyone know what is happening with #justice4ME ? I remember donating as did many other #pwME but haven’t heard since. It might be useful in the case of Savannah. #ME

I started subscribing to The Canary because it seems to be the best at covering the many stories of abuse of people with severe ME in hospital. This story should be everywhere. #greatestmedicalscandal

Why do I post all this shit on American fascism, when I'm an Australian? Cos it's coming for us all, everywhere, and we have to know how to escalate a lot fucking faster than America has if we don't want to have to live through this. The UK is next. You've gotta start your prep now. It's coming.

If you haven't seen it, you don't need to. People are providing plenty of verbal descriptions. I absolutely assure you, it is enough.

#ME #EndMalnutritionInME @bapen.bsky.social @mnpathway.bsky.social www.thecanary.co/uk/analysis/...

We know that @greenparty.org.uk has many members who are affected by long term conditions as a result of prior infections and live with #ME/cfs and #LongCovid. We know this because they are members of #greensagainstcovid. Some have joined the party because of our policy.

"Through collective effort and strong community support, we were ultimately successful in resolving Ghufran’s case. Before Christmas, her Universal Credit and Adult Disability Payment were reinstated, and after the New Year 2026, she returned to new council accommodation."

'100 Minnesota clergy arrested at MSP airport while denouncing ICE surge, abductions in Minnesota' 'Clergy members prayed together, sang songs and hymns and shared stories of those who have been abducted by ICE..' www.hometownsource.com/caledonia/10...

I'm not currently clear on whom in my trust is the right person to voice my concerns to. My trust is under pressure to use the software. I'm building a coalition of colleagues and I'm starting with my ethnic diversity champion ... Suggestions all, and especially @goodlawproject.org please.

We're going to steal people's ideas and content so people can use AI to produce stolen ideas and content. And then we're going to steal back a cut of anything you make from the stuff we all stole.