Thx @guardian for inviting me to share these #LongCovid questions.

One of the most agonizing parts of this condition has been waiting for the world to catch up with what we know about the disease - & the abysmal lack of urgency to do anything about it. /1
theguardian.com/world/commenti…

Long Covid is a huge problem in the air industry.

It's contributing to this 👇

This LDN result only reinforces the need for subgrouping in long Covid clinical trials.

LDN was a lifesaver for me when it came to pain and I can guarantee it wasn’t placebo, it took my pain from a 9 to a 2 out of 10 in weeks after many other medications failed for pain relief.

Stanford researchers propose that Long COVID and ME/CFS may disrupt the brain’s waste removal systems.

Impaired autophagy and glymphatic clearance could allow toxic proteins to accumulate, contributing to brain fog, fatigue, and neuroinflammation.

mdpi.com/1422-0067/27/2…

Gisteren verscheen er een stukje in Men's Health @MensHealthMag over ons onderzoek, en waarom ook profatleten long covid kunnen ontwikkelen (en hoe je het kunt onderscheiden van overtraining/gewone vermoeidheid):
menshealth.nl/nieuws/wat-is-…

#coverboy :)

For anyone getting into biology, please consider taking airborne disease resistance more seriously.

It's a super important area of medicine that is a huge cause of death and sickness but easily gets forgotten. We're likely to get many more airborne plagues in the future due to the combination of not just extremely dense and interconnected society (including city and farm animals), but also accidents from bio research and offensive biotech (both from random people and from secret government programs that can easily get themselves exempted from safety restrictions), all enhanced by powerful AI.

Right now, this area is getting way less love than longevity research (which continues to be super important!), but it's an area where there are lots of unclaimed wins that we know exactly how to do (but are not yet doing) with present-day tech:

* early detection
* passive universal testing
* filtration/ventilation/UVC
* better vaccines (including making them open source and open science)
* cryptography to make all of the above privacy-preserving

We can have China-level pandemic resistance with Sweden-level limited intrusion into people's lives, and then go even further. We just have to actually do the work for it.

Researchers reviewed 105 Long COVID and ME/CFS clinical trials and found major gaps in how treatment success is measured.

Only 18% of Long COVID trials assessed post-exertional malaise (PEM).

Many relied on fatigue scores that miss disability & crashes.

frontiersin.org/journals/publi…

We met with Shionogi to Answer Your Questions about access to #Xocova (Ensitrelvir), a PEP (post-exposure prophylaxis) used to try to prevent a #COVID-19 infection after an exposure. Several studies are also underway evaluating its potential to prevent and treat #LongCOVID. Here is what we learned:

University of Perugia researchers reviewed evidence linking persistent JAK/STAT signaling to inflammation, autoimmunity, and dysautonomia in Long COVID.

JAK inhibitors show early promise, but larger trials are needed.

frontiersin.org/journals/pharm…

Made it! Just about. Good crowd. This one is more sound sensitivity conscious than last year’s, I think. Instead of clapping people raise and shake their hands. Respectful. Well organised.

I love everyone here. I hate that they make us do this.

This week, I received my first dose of Anktiva (N-803) for Long COVID as part of a clinical trial!

Feel free to ask me anything. I’ll be sharing updates on my progress and experience as time goes on!

@DrPatrick @Av8rLady @longcovidlabs @ImmunityBio @COVID19_disease

I just spoke to an 8th-semester medical student.

Not a SINGLE class on ME/CFS.

A neurological disease affecting potentially 70 MILLION people worldwide, yet future doctors aren’t even taught about it.

This isn’t just an educational gap. It’s a medical scandal.

Chinese scientists have found that hypoxia and inflammation induced by COVID-19 infection can trigger angiogenesis and accelerate lung tumor growth.
nature.com/articles/s4139…

@amyrochlin @CODA_research @tylerdmyers @PaigeSHansen @MIT_TRG @mhornig @technopolymath @TomerTalVH Did you know that in the incredible Invisible Illness TOPx @HHSGov Tech Sprint, our team is the only one with a core microscopy component? Please register to vote! invisibleillness.crowdicity.com/post/896951 or learn more at: talresearchgroup.mit.edu/maestro-health…

We are trying to get a clearer picture of the relationship between ME/LC and connective tissue disorder. If you are affected by this combination, we would be grateful if you could take the poll and if possible provide details. Retweets also much appreciated, to increase reach! 🙏🙏🙏

Grateful to @NPR for the chance to talk about how stress and infections like COVID can stir dormant viruses in our bodies, and what that may mean for our immune system. Still much to learn, and I’m thankful to my team and colleagues for their work 🎧 npr.org/2026/10/23/nx-…

University of Alberta researchers studied 1 patient with severe ME/CFS who experienced brief symptom remission after both Shingrix vaccine doses.

Immune testing showed reduced T-cell exhaustion markers and improved NK cell function.

Symptoms returned.

sciencedirect.com/science/articl…

I felt pressured to push through this illness and “walk my way out of it” so I decided to do 10,000 steps and I ended up crying in a field and had to get picked up. I was then in PEM for a solid 3 months from that walk alone. Don’t listen to Drs on here telling you to exercise.

At the Harvard/MIT Martinos Center, Dr. Mario Murakami and the VanElzakker lab are using ultrahigh-resolution 7T fMRI to understand how changes to cerebrospinal fluid (CSF) flow in people with Craniocervical Instability can produce a phenotype similar to that seen in ME/CFS and tions.

The brain relies on cerebrospinal fluid to carry out metabolic waste that builds up during normal physiological processes, acting as a “garbage disposal,” as explained by Murakami. Changes to healthy CSF flow may result in the buildup of these metabolites in the brain.

Said Murakami, “There is a compromised structure of CSF flow in CCI [patients] compared with healthy controls, which means that maybe this is part of the mechanisms which drive the symptoms—the brain fog, the pain, the fatigue, the autonomic dysfunction.”

You all know that people weren’t this sick all the time before 2020. You’re just ignoring it because the truth is too frightening.

For over a year, I hadn’t experienced a severe crash, barely had any PEM, and had finally reached mild ME/CFS.

After a recent infection, I first thought I was recovering quickly. But now it feels like severe PEM is coming back.

I’d be lying if I said I wasn’t scared. 💔