“We have a panic/neglect cycle. People panic with news of infectious diseases, then become complacent instead of bolstering safety measures.” Laura Pensiero, Certified Meditation Teacher, developed #LongCOVID from catching COVID the first time 3 months ago, int. by @msjulieslam.bsky.social

Sometimes I read papers and have a literal nerdgasm. Reading about the Speer Allergic Tension-Fatigue Syndrome was one of those moments. Enjoy my latest blog 👇 Speer Allergic Tension-Fatigue Syndrome: MCAS, ADHD, and more? dontbelievehype.co.uk/covid-%26-va... 🧵

[10] The transphobic obsession with women’s spaces is a way of distracting from the crimes of a million cis straight men. Rather than reply to the transphobic poster, I hid, blocked & reported him. Life is too short to respond to rape-apologists. I do think their hard drives need checking.

*taps the sign*

I can never forgive this UK government for getting on the anti-immigration bandwagon. We are real people with real lives directly impacted by this hostile environment. How can I not feel passionate about rejecting such pandering?

I wonder how much of the "trained response" of the innate immune system is part of the reason for MCAS. MCAS could be an example of the innate immune system over-applying this response to things that aren't actually dangerous, kinda like developing autoantibodies in the adaptive immune system.

So much calmongering when actual experts agree we simply don't know enough about this strain of hanta virus and how it is evolving. And how exactly will the chain of infection be broken for something with an incubation time of 40+ days when most countries aren't actually enforcing quarantine...

Wanted to chime in on the Top 100 books thing, but any time I talk about not being able to read with my chronic illness, someone always suggests audio books, and I'm too tired today. It has been 15 years for me, I promise you did not come up with the magic solution after 15 seconds. #pwME #MECFS

youtu.be/6iRbQNX07zY Please watch & share this fabulous online music concert organised by Isaac Greer for Blue Sunday to help raise awareness & funds for the #MyalgicEncephalomyelitis #ME/CFS research @edinburgh-uni.bsky.social led by @cgatist.bsky.social Prof Chris Ponting youtu.be/6iRbQNX07zY

One of the best lessons I have learnt is: Listen to, defer to, and support the right to speak of, people who are not white/cis/male/straight/able-bodied etc. As well as learning from and centring them, you’ll start to notice just how much people *much like yourself* talk over them.

I understand this landscape somewhat, through friends irl and online, and reading. There is a power imbalance regarding health that can't be ignored. Doctors like to pretend medicine is a 'completed' science and where they don't understand they blame the patient. The victim blaming blocks learning.

Sorry, I know this is likely to upset people, but I have given up caring. If you support Starmer and Labour right now you are supporting a government which in the last nearly two years has proven itself more racist, xenophobic, anti-human rights, anti-trans rights etc than the Tories managed in 14

Great to see @martinruecker.bsky.social reporting on our local ME science superstars for @thesicktimes.org! Martin Rücker has a long history of carefully reporting on MECFS issues here in Germany, and the patient community trusts him, as much as we trust any reporter (we have media trauma too!).

REMINDER: MCAS survey opportunity 👇 Survey link: forms.office.com/e/N4RDJYVep0 Survey is due to close on 20th May!

The fact that a neo-Nazi teenager who attempted to behead a Kurdish barber in Bristol last year has just been sentenced to almost 20 years in prison isn’t *national* news is enormously telling. It’s really not just a South West story, is it?

"Every time a new disease emerges, they want dead bodies before they’ll permit respirator use. " 🔥🎯🤬

Fucking monstrous Anyone who has ever put a child in one of these deserves to be beaten unconscious with sticks

A friend of mine has become unable to work due to his Long Covid induced #ME/CFS. They'retrying to survive til he is able to get on disability. Please donate and share if you are able! 💙 www.gofundme.com/f/aid-for-a-...

This👇 keeps happening to #pwME who are experts in their field - & not where it can be seen by the wider #ME community @meassociation.org.uk & @actionforme.bsky.social do need to understand that this is a sign of their failure & it has a highly detrimental impact & change their strategy immediately

Please sign this petition. Many people with #ME are too till to attend GPs' surgeries, outpatients' appointments, or A&E. #MEAwarenessWeeek petition.parliament.uk/petitions/73...

We are in the Meningitis B outbreak area with a teen in hospital from our school. 1 family has lost their child 🥺 3 colleges affected - private school has vac for all the yr group. State schools - nope. If @UKHSA had offered national vac program?! www.theguardian.com/society/2026...

Schroedinger's hantavirus

Liegenddemo in Frankreich www.ici.fr/auvergne-rho...

#Ebola Oh 😒

@tessamunt.bsky.social between Drs Weir and Speight we have the expertise in the UK to do a much better job at protecting people with #SevereME in hospital. The NHS just refuses to engage with them. Hides behind the unknown cause and mechanism rhetoric. Then carries on torturing us...

Sleep hygiene can be just as “damaging as graded exercise” for patients with #MECFS Dr Nigel Speight describes a girl with severe sleep reversal. She walked into hospital and was carried out a month later needing to be tube fed.

"Long Covid individuals and families, just like M.E. sufferers and a host of others learn the hard way: authority figures can have humility, but they can also be tragically and structurally hysterical...

"What if Dora wasn’t hysterical at all, but Freud was? What if, in this example, and in the current mass wave of gaslighting, what we are witnessing is not the hysteria of the vulnerable, but the hysteria of the citadel, requiring itself ...

Interesting article flipping the script on medical hysteria: Long Covid Is Hysteria—But Not The Patients’ sceneofbecoming.substack.com/p/long-covid... Some quotes 🧵 👇🏻 though its worth a read in its entirety to properly capture the context

I know you already have more than enough reasons to wear a mask but in a new BMJ article several scientists argue: “WHO should say plainly that ANDV should be managed as a pathogen with plausible airborne transmission,” so now you have yet another reason to wear a mask.

Wes Streeting, the member for Palantir North.

I’m grateful that @vashetc.bsky.social trusted me to share their words on the steps of HHS earlier this week. Check out their reflections on ME Awareness Day and some of the preliminary findings on their Rest and ME/CFS research study. Learn more & take the survey here: www.restandmecfs.com

TIL that “haunts minds” is apparently slang for causes cognitive, neurological, and psychological issues. Interesting. #COVID

It was a pleasure to meet with Tracey Williams at the Welsh Government offices in Cardiff to discuss the possibility of all-Wales service for ME. With her background in nursing, Tracey truly ‘gets it’ and the conversation was refreshingly honest.

"It can't tell you about anything where a real person hasn't already done the work, and in that case it's stealing the answer from them" was when it sank in, at least partway.

Dr Nicola Clague-Baker, co-founder of Physios for ME, needs the help of people with ME. She is working on developing simulation training for health care professionals caring for patients with #SevereME and #LongCovid in hospital 👇🏼

DWP figures ‘show self-employed disabled people have been put to the back of the Access to Work queue’ #DWP #AccessToWork www.disabilitynewsservice.com/dwp-figures-...

Annual cost of Long Covid is said to be approx £8bn annually. Plus that of ME. And I 'reckon' that's seriously underestimated. UK gov ought invest for economic sense as well as social responsibility; www.elaros.com/elaros-featu...

‘…there is more to do, and this must be only a start to the significant investment in ME/CFS research that is so desperately needed….’ Government must show greater ambition in investing in this U.K. world-leading research to bring treatments for the scourges of ME and LC that cost us all so much.

People are still dying of Covid, Valéry. Last year my mother died of complications of COVID. She believed as you do, that it’s been years and did not mask or take precautions despite being immunocompromised. People aren’t talking about Covid still because we LIKE doing so.

New review with @resiapretorius.bsky.social Kell, D. B., Zhao, H. and Pretorius, E. (2026) Fibrinaloid Microclots-Induced Microcirculation Dysfunction: Mechanism and Laser-Based Haemodynamic Validation. Cardiovasc Sci. 3, 10005. doi.org/10.70322/cvs... #TeamClots @livuni-ismib.bsky.social

A SECOND review with @resiapretorius.bsky.social also published today Kell, D. B. and Pretorius, E. (2026) Assessing the Health and Functionality of the Microcirculation Using Thermal Imaging. J Biophotonics. 19, e70270. doi.org/10.1002/jbio... #TeamClots @livuni-ismib.bsky.social

We got this request this morning from the Limerick Today show on Live 95 FM: -- "Ahead of the Limerick event next week, would you have a Limerick resident who suffers from ME and would be willing to chat about it on our show? I'm looking at next Tuesday morning?" #MEcfs #PwME 1/

today, I'm posting for a friend from my very severe ME/CFS group. she's been dealing with malnourishment and has to make a trip to the hospital ASAP, but she doesn't have any ear defenders. sensory issues are extreme at this depth. she could really use the support. ko-fi.com/lidiafin #NEISvoid

Claire Hirst (It's All About M.E. on Facebook) has shared this post, and has asked folks to share, so I'm sharing here. 🙏💙 www.facebook.com/permalink.ph... #SevereME #SevereMErgency

what's especially upsetting is they've written in the email that I agreed that the method of communication wasn't working when I NEVER said that, nor would I have. it is literally the only way I've been able to communicate with anybody and was a huge help. I just want to cry again #MECFS

and that I would be "best served" by attending in person appointments with services in future. which I cannot do. so I'm cut off from healthcare again. they found communicating with me a hassle and are framing out as if they're helping me out lmao #MECFS

the ONLY way I can do appointments is via Teams, where I use the chat function and read their captions. that's it. being able to do that removed the barrier which had prevented me from accessing healthcare for 2 years. now they're saying it's not doable and makes communication too difficult #MECFS

COVID-19 didn't end for Thousands. The Inquiry heard from adults and representatives of children about living with long COVID – including Long Covid Scotland, about and the challenges faced by a lack of understanding. Read the full Narrative Record: www.covid19inquiry.scot/report/narra...

1) 🇳🇱 The Dutch research agency ZonMw announced € 1.5 million in funding for 4 new Long Covid studies. It includes a project by Dr. Rob Wüst that will investigate physical changes (muscle, blood, autonomic function) in people with severe Long Covid who are homebound.