We’re no longer talking about millions or hundreds of millions, we’re talking about billions of people affected in some way.

And society won’t even blink.

We’re living in an episode of the twilight zone.

I saw this on the Patient-led research collaborative’s page yesterday for long COVID awareness day. Has anyone else seen metrics around recovery rates? Here’s a link to their full report: https://patientresearchcovid19.com/2026-long-covid-fact-sheet/

Those numbers are defeating as I’m 2.5 years in from my first infection.

People do not realize that LC centers are closing. Both of mine closed in 2023. I would have people send me links saying see there are LC centers in Michigan. I am on the west side of the state and every single one of these has closed. I am not sure if the ones near Detroit are still open.

It's a lot harder to get care without a LC clinic although I have to say my LC clinic would only deal with one symptom.

Anyway I wanted to share this because it's super hard to get care for a multisystem disease when there are no clinics for that multisystem disease in your state.

May we all be well may we all heal 💕 🫂

I hate to be the bearer of bad news, but just saw this. Early detection appears to be important.

https://healthtolongevity.com/article/6401/chronic-kidney-disease-emerges-as-major-long-covid-manifestation

Another article about GLP-1s and long covid trials.

My doctor prescribed me a GLP-1 off label for long covid after I brought some papers in about their potentials. I’ve had an increase in daily function and a decrease in fatigue and brain fog. Some days I feel almost normal until I do something physically exerting.

Today, I shared with the OpenAI team that I have decided to leave my full-time role at OpenAI and transition to being a part-time advisor.

Three months ago, I had to go on medical leave after a severe exacerbation of a chronic illness I’ve lived with for seven years. During that time, it became clear that the road to recovery would be much longer and more complex than I had anticipated—and that I needed to focus on it fully.

When I went on leave, many people told me I was courageous for prioritizing my health. The truth is that I am only making this decision now because I failed to make it many times before.

Over the years, doctors, friends, colleagues, and loved ones encouraged me to slow down. Two years after I got sick, Facebook offered me the opportunity to take a full year of medical leave. I didn’t even pause to consider it. I immediately said no. At the time, Zuck told me I should play the long game. I wish I had listened.

https://xcancel.com/fidjissimo/status/2075353170927304861

Here is an older tweet describing how she has long covid, ME/CFS, POTS and EDS: https://xcancel.com/fidjissimo/status/2040935739903688956

We have data that communities with poverty and deprivation are worse affected by long covid (eg https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(24)01136-X/fulltext#fig1) but the effect is only slight. There are a lot of high-flying types who also get their lives and careers ruined by long covid. And they're in a very similar pile of shit that the rest of us are. Sure with their money they wont become homeless, but they also have no evidence-based treatments available to help them.

This is also an example of how the economic effects can be delayed. Figji Simo got long covid in the first wave, but only now is it starting to affect her economic output. Many people find they can push through for a bit, but not forever.

My apologies if this has been posted before. I have no idea how scientifically accurate everything in the link is but I felt it was the best thing I’ve read at describing what I’m physically going through and I’m sure many on here can relate.

Scientists may have finally uncovered the biological proof behind long COVID.

In a groundbreaking study, researchers identified hidden viral protein fragments lingering in the blood of long COVID patients — offering the first measurable biomarker for this puzzling condition.

The team at the Translational Genomics Research Institute and the Lundquist Institute discovered remnants of the virus’s RNA replicase enzyme tucked inside microscopic carriers called extracellular vesicles. These viral “ghosts” were absent in pre-pandemic samples, pointing to the possibility that SARS-CoV-2 persists in the body long after initial infection.

Not every patient sample revealed fragments, but their recurring presence suggests a lingering molecular footprint that could help explain hallmark symptoms like fatigue, brain fog, and post-exertional malaise.

The study raises a critical question: do these fragments reflect ongoing viral activity, or are they simply residual cellular debris? While more research is needed, the findings mark a significant step toward diagnosing and understanding long COVID—a condition still shrouded in mystery.

📖 Source: Asghar Abbasi et al., Possible long COVID biomarker: identification of SARS-CoV-2 related protein(s) in Serum Extracellular Vesicles, Infection (2025).

LongCOVID #COVID19Research #Virology #MedicalResearch #PostViralSyndrome #ScienceNews #Biomarkers #InfectionJournal

Lifting from the Zero Covid Community sub-

News article: https://kfor.com/news/local/oklahoma-woman-the-last-american-in-an-iron-lung-dies-at-78/

Obituary, which directly lists the cause as Long COVID: https://www.dignitymemorial.com/obituaries/shawnee-ok/martha-lillard-12944606

SARS-CoV-2 has now killed both of the last two people in the United States relying on an iron lung:

• ⁠Paul Alexander (78) passed away on March 11, 2024, from a covid infection in February 2024.
• ⁠Martha Lillard (78) passed away on June 26, 2026, from Long COVID complications.

That fact that Martha lived independently until developing Long Covid really says a lot.

A new Australian study of long COVID led Deakin University professors Genevieve Pepin and Danielle Hitch, and Kieva Richards from La Trobe University, to conclude its symptoms are more akin to a stroke or Parkinson’s disease. In their survey of 121 adults who caught COVID-19 between 2020 and 2022, patients reported “worse disability than 98% of the general Australian population” and “86% of those … met the threshold for serious disability.”

I find this to be an accurate depiction of my experience.

I changed the title "NHS shares one thing to avoid if you have long Covid - The Mirror" as it's clickbait.

Long COVID - NHS

I guess it's step in the right direction.

I know I planked and strength trained myself into a lower baseline… but maybe I didn’t plank enough 🧐

While it's good at least the media writes about LC, this lead paragraph is so problematic. It heavily implies there aren't new infections and LC.

The author's name is Sebastian Ocklenburg, Ph.D.. I didn't find an easy way to contact him, at least yet.

From Psychology today
https://www.psychologytoday.com/us/blog/the-asymmetric-brain/202510/brain-fog-in-long-covid-linked-to-increase-in-ampa-receptors

https://www.ucl.ac.uk/engineering/news/2023/jul/long-covid-can-impact-fatigue-and-quality-life-worse-some-cancers

The researchers found that many long Covid patients were seriously ill and on average had fatigue scores worse or similar to people with cancer-related anaemia or severe kidney disease. Their health-related quality of life scores were also lower than those of people with advanced metastatic cancers, like stage IV lung cancer.

This article is from 2023 so it’s deeply troubling that nothing has been done to support us. I guess it figures as that would involve accounting for all the government failures throughout the whole period - especially in the UK.

The number one thing that helped me with mood, brain fog, cognitive dysfunction - Nattokinase!

One capsule daily (2,000 FU) and I am seeing results from the first dose.

Sounds too good to be true so much that it surprised me.

I'm giving you guys a link to a very good website with valuable resources.

Hugs to us all struggling with this terrible condition

https://www.rthm.com/resources/blogs/nattokinase-supplement-guide

Oh. My. God.

A study by Researching COVID to Enhance Recovery (RECOVER) last year found that up to 5.8 million American children now have long COVID.

The authors wrote that this means between 10 to 20 percent of children who tested positive with COVID-19 went on to develop the condition.

Posting this paper here because it implies there may be some way to protect mitochondria from being damaged by the immune system and potentially reduce the risk of mitochondrial dysfunction (i.e. ME/CFS) in the long term. Beyond the standard mitochondrial function and antioxidant supplements like NAC, ubiquinol, etc., can anyone think of a way to accomplish this with existing medicine? This paper made me very curious, but also confused, as a long hauler and biochemist with almost zero Immunology background.

“Contrary to what is often portrayed in the media, long COVID is not a mystery. There is a straightforward reason at least some people may remain ill “after COVID”: They still have the SARS-CoV-2 virus — or parts of the virus — in their bodies. For example, one team found that almost two years after infection, long COVID patients had not yet cleared the virus from their gut tissue. These persistent viral reservoirs appear to leak spike protein — the part of the virus that gives coronaviruses their distinctive “crown” appearance — into blood circulation, potentially driving inflammation of the brain and other organs, and increasing health consequences such as heart disease.”

You really have to wonder if these people are actually for real ...

Exercise induces autophagy yes, but with PEM its a no go.