Long Covid Awareness Video showcasing before and after images of people with Long Covid. And them telling us what Long Covid has stolen from them. Please watch it, share it. We need allies. #longcovidArawenesDay #LongCovidAwareness #longcovid

I am once again asking my body to behave like a body. You know, like, the bare minimum.

Many disabled people experience grief. The grief of losing your abilities over time. The grief of being abandoned by friends and family. The grief of never having the life you wanted. The grief of not being thought of in society. The grief of not being seen. It can be so heavy.

Something exciting is happening in POTS/ME/CFS/Long COVID research right now. Multiple labs and clinicians, working independently, are converging on overlapping mechanisms - neuroinflammation, autonomic and brainstem dysfunction, immune-driven pathways, approached from completely different angles: imaging, immune markers, clinical observation, structural findings. That kind of convergence is usually a marker of a field reaching scientific maturity. Early-stage fields tend to be scattered and contradictory. A field converging from multiple independent directions toward the same underlying biology is a sign there's real signal to chase. This is what it looks like when a research area starts to click into focus after years of being dismissed or fragmented. Patients have waited decades for this kind of momentum. Grateful to see so many people pushing in the same direction.

5 years ago today I developed Long COVID. 5 years since I last had a day without suffering and awful symptoms. I was 21 years old and lost my life 5 years ago.

I built longcovidbot.com (a work-in-progress) to help people with Long Covid make sense of an overwhelming body of research. Its highest-value function is translating your lived symptom pattern into a structured phenotype, then helping identify the most informative, higher-specificity biomarker strategies (often using panels rather than single tests) and generating clear if–then questions to discuss with your clinician - instead of chasing broad, low-specificity labs and one-size-fits-all treatments. It's a research and educational tool, not a replacement for medical care, but my hope is that it helps patients ask better questions and make more informed decisions.

When I was talking to my gp yesterday the thought that what if we are really sitting here 20 years from now and nothing changed was so defeating. I Feel like all I do is for nothing. We NEED to get results and Treatments in the Next years. Lost my 20s and my 30s

Seeing everyone's graduation photos is hitting me so much harder than I expected. If I didn't get sick and therefore dropout that likely would've been me standing there with them. It’s breaking me because achievements like that meant so much to me. #chronicillness #mecfs

So, please hear me out, what if the viral infection that killed millions upon millions of people, and keeps on reinfecting people... what if it also has an effect on the people it didn't kill? Like, it disables some of them?

4 Monate lang ging es mir besser. ich kam von fast bettgebunden (Ausnahmen: Badgänge) raus in die Etage, auch der Garten war immer wieder möglich. ein paar Mal habe ich es sogar bis zum Straßenrand geschafft. 1 Crash- und 50% meiner Baseline sind aktuell wieder hinüber.

Sick every day with ME/CFS for 3,085 days. How much longer?

You’re not poor because you bought coffee and avocados. You’re poor because billionaires bought Congress and the Presidency.

My cat vomited on the tiles and not the rug. Everyone clap please.

RT @DebHolloway: So, here is my situation. I can't stand for more than a minute or two without this happening. I can shuffle around the con…

People want their suffering acknowledged with a commensurate response. That’s all. A diagnosis does that. So does a FUNCAP score. It’s evidence of suffering in a way that can be validated.

And people find themselves in these communities because the experience of chronic illness makes you almost a sub-species of the human race. Your daily reality becomes *so different* & usually nobody around you relates. And again it's *dangerous* to psychologize it beyond that.

🖤#RIP Mirjam🖤 🪽„Einem Engel, der uns alles bedeutet hat. 💕Einer Liebe, die nie vergeht. 🕯️Einem Licht, das uns immer leuchten wird.“ 💔Unendliche Trauer - in jedem Wort der berührenden Traueranzeige schmerzhaft zu spüren... trauer.hna.de/traueranzeige/…

Do I go to the restaurant? NO Do I go to the pub? NO Do I go to concerts? NO Do I go to the gym? NO Do I go swimming? NO Do I meet people for coffee? NO Do I go to yoga? NO Do I go on holiday? NO Do I fly abroad? NO Do I attend meetings? NO Do I go to festivals? NO