It's 2025 and we are still using the 6 minute walking test as a primary outcome measure in long covid clinical trials. Yikes.

Vanaf vandaag elke week Antifa-leestips (voor het hele gezin) uit de collectie van de bibliotheek. We beginnen met de stripbewerking van HET DAGBOEK VAN ANNE FRANK door David Polonsky. #leesvaardig #informatievaardig

One Covid infection = Long Covid 4.5 years of “exhibiting abnormally low activation in the parietal lobe” ✅ problems with coordination, movement, and balance ✅ poor hand-eye coordination and spacial awareness ✅ inability to find the names of objects ✅ difficulty with multitasking #disabled

Would love to see RECOVER-TLC & RECOVER prioritize these findings. ➡️ Oxygen extraction issues ➡️ Preload failure ➡️ Reduced V̇O2peak ➡️ Skeletal muscle O2 diffusion

JK Rowling has literally made it impossible for me and my partner to travel to Scotland, my spiritual home I've wanted to live in since I was 10 I only wish upon her what she wishes for every trans person: a permanent disappearance from public life

Can we try not to undermine all the international guideline processes? I'm so much done with the continued propagation of exercise as a cure for PEM. No, tolerance will NOT increase even if you stay within your energy limits. PwME have been saying this for DECADES.

Prusty's new pre-print is out. Please somebody apply for MRC funding to test this in a replica study. We know from observation the mitochondria are affected. This . . . could be how. #Research #ME #PlanForME www.medrxiv.org/content/10.1...

So you're going to "teach AI" this year. That's great! Start with "How Eugenics Shaped Statistics" nautil.us/how-eugenics... #mtbos #ITeachMath #AIinEd

Could this be why our T cells are fucked? Review by people at my previous job. I had no idea that anything else than antigen priming and cytokine communication (and recently, autonomic nerve innervation) guided T cell dynamics www.sciencedirect.com/science/arti...

“Boomers bought houses at a time when saving a couple of pounds per day taking a packed lunch to work would give you a house deposit in eight years. For a millennial this would take two centuries…”

Yay finally the colleagues seem to be waking up!

Ik roep het nog maar een keer: Doordat ik erg ziek ben kan ik niet naar #Castlefest. Daarom verkopen wij onze kaartjes. 4 dagen toegang + camping + campingcabin met relaxpakket + parkeerkaart. Voor € 975 plus € 120 borg. Die krijg je terug als we hem terugkrijgen. De cabin kan niet via

I wonder why everyone is more concerned about courageous doctors prescribing off label treatments for long covid than about how we as patients are gaslit and left to rot in our beds. 1/

I discovered this beautiful piece by Andrea Casarrubios for solo cello. It was written in 2020 for frontline workers and it sooo directly hits into the feels! youtu.be/SBzzfhI9xRM Turns out this is a whole genre of music. 🧵

I can't even like where to begin with everything that's wrong with that AHS position statement! Don't you think that pwME tried exercising themselves out of it?!?

I hate hate hate it that doctors are still trying to make our lives worse at every turn they can. Whyyyyyy. How hard is it to listen to patients?

When you open a substack newsletter you signed up for years ago and never read and are suddenly met with the most vile transphobic vitriol. Yikes. Anyone who calls the Cass review a good systematic review, please unfollow me.

#pwME do we think that infamous flawed trial might actually be shown for the bad science it is? 👀

"Of respondents who had transitioned, 9% had gone back to living as their sex assigned at birth at some point in their lives, at least for a short while—but in almost every single case, the reason was anti-trans discrimination from one’s family, friends, or community."

From @meresearchuk.bsky.social New findings highlight the need for tissue biopsy studies to investigate pathogen reactivation in people with ME/CFS. Find out more: bit.ly/45ntdNV #MECFS #PathogenReactivation

I'm exploring options to import Virx to the Netherlands. Anyone interested? Please send a DM so I can add your name to the list and make an estimate of how much to order. (No need to dm if you replied via Instagram).

Microvascular obstruction is known to be a #LongCovid feature. Now a potential mechanism found for the obstruction induced by death of endothelial cells->sticky red blood cells. Which wouldn't respond to blood thinners or anti-platelet Rx www.nature.com/articles/d41... www.nature.com/articles/s41...

“It is destabilizing, frustrating and enraging to feel like my daughter, who wasn’t even 18 months old, has done more for public health than some people who are now currently in charge of it,” Giglia said.

Net een fantastische harples van @kathelijne.bsky.social ! Voor alles waar ik tegenaan loop heeft ze n oplossing! Blijft echt magisch hoe de juiste aanwijzingen echt iets kunnen transformeren.

And in case you were under the impression it’s over, last month an average of 350 people per week died of #COVID in the US.

The BMJ has a long history of publishing stuff promoting the "biopsychosocial" approach to ME and ME/CFS: virology.ws/2025/05/24/t...

The first hundred pages. The first eighteen pages.

"The... NICE no longer recommends therapies based on deconditioning and exercise avoidance theories ...recognising that these can cause people with ME/CFS to become more severely unwell...my qualitative data illuminates additional harms provoked by these approaches to, and beliefs about, ME/CFS" 👏

Med school: you need to learn the Krebs cycle by heart! And all the inborn errors of metabolism too! Medical professionals: won't even read a paper about metabolic disturbances in ME.

This is my 9th year advocating for #MyalgicEncephalomyelitis #MillionsMissing #MEAwarenessMonth. My health has only worsened since then (9 years ago I was able to work FT! Now I can't even work PT and am mainly housebound), but I'm hopeful because: (1/6)

CN: mention of self-harm in article What this article fails to mention is that LLMs like ChatGPT or AI companions just reflect back what the user wants to talk about. Charitably, these AI are just us talking to ourselves, or less so, these AI are "yes-men".

This exactly! Prescribing mestinon 10mg twice daily isn't really going to help anyone.

FWIW, same convo with ppl taking pyridostigmine several times, now. Doc knows "start low & go slow" but doesn't know frequency. Pt experiences high acetylcholine/low acetylcholine on a loop Conclusion: "pyrido doesn't work for me" I want drs to look up its use in myasthenia gravis! I beg

The mods of r/ChangeMyView shared the sub was the subject of a study to test the persuasiveness of LLMs & that they didn't consent. There’s a lot that went wrong, so here’s a 🧵 unpacking it, along with some ideas for how to do research with online communities ethically. tinyurl.com/59tpt988

Why can't we just accept that exercise is not a cure for PEM? It keeps popping up, often disguised as pacing but it's actually graded exercise. The whole point of GET is that it uses super tiny increments. Like 30s-1min. That's still unsafe and puts people at risk. Please stop pushing GET!

If exercise worked we'd genuinely know by now Studies that claim success through 'small wins' - that is essentially bias - does not mean exercise is the answer But, unfortunately, we have a research community who cannot move on from lifestyle interventions

If a researcher or clinician is still invested in exercise or 'pacing up' it shows: 👉 devastating alienation from the patient experience 👉 wilful disengagement from the scientific research 👉 career, ideology & 'being right' is more important than the patient #wrongparadigm

Ik heb een korte animatie gemaakt naar aanleiding van mijn brief aan minister Keijzer. #WonenZonderDrempels Willen jullie dit delen? Alvast bedankt!😊 *Geluid aan voor mijn voice-over.

The sun is out, and there must be thousands here. This is giving me life.

JKR funded the campaign group behind all this btw. This is why we beg you to stop engaging with Harry Potter media.

I can't emphasize enough that the most important thing journalists can do right now is publish exactly this kind of article

This is where your Harry Potter money goes

@davidvergucht.bsky.social hoi! Ik heb een vraagje over beschikbaarheid van med in België, mag ik je een dm sturen?

When masks are illegal in public, disabled people are illegal in public.

Tussen 2013 en september 2021 nam het aantal arbeidsongeschikte niet toe. Sindsdien wel. Wat is er toch gebeurd in 2020-21 dat hier aanleiding toe kan hebben gegeven?

I’m quoted in this important piece. I really hope that more patients can avoid unnecessary tilt table testing if they can take articles like this to their doctors. Many ppl warned me of the risks, but I didn’t feel like I could decline my doctors request for the test. I’ve not been the same since 💔

Naar aanleiding van de actie op #LongCovidAwarenessDay2025 sprak @redpers.bsky.social met @bart-lefermier.bsky.social, @evahamming.bsky.social, @fvrhijn.bsky.social en mij over de situatie rondom #LongCovid en andere #PAIS. Lees het artikel hier: redpers.nl/2025/04/07/o...

@knmg.bsky.social wat leuk dat jullie me volgen! Ik hoop dat jullie na 5 jaar eens een inventarisatie willen doen naar long covid onder artsen, in Engeland hebben ze dat twee jaar geleden al gedaan. Ik denk en help graag mee!

Folks, very bad news for #LongCOVID. Deep breath. 29 awarded grants to do with COVID and Long COVID have been rescinded by NIH. 🧪 www.science.org/content/arti...

Three years ago I received this email. I didn't know that my life would change forever. Instead of almost having finished specialty training, three years later I'm stuck home horizontally on the couch and got fired from my dream job. This can happen to anybody, so please mask up!