Vanessa Naylon

@SalvMattera seems like a good idea. not sure if you’ve already cross-posted but zero covid community on reddit may yield some stories too

Had a section on Helpforlongcovid called "success stories" - I decided to delete it. I'm going to replace it with "in memorium" - a page to document people who have died from Long COVID, ME/CFS, Lyme or other similar diseases. It's not my place to document anyone I don't personally know, but if you were close family or friends to anyone that has passed and would like their story featured, please get in touch with me. Ideally, I want to include things like: "Died from cardiac complications following Long COVID." "Died by suicide after years of untreated ME/CFS." "Died from complications of autonomic dysfunction." Etc

@SleepyJim0 GLP-1s also cause hair loss and many don’t know this

There’s this airborne virus that’s been going around over the last six or seven years that causes hair loss (and other things). Best avoided.

Still out here and still building community

The different chronic illnesses are not inherently political, but they obviously map onto certain political structures in the culture. You can see this very evidently when, for example, Joe Rogan has had multiple guests talking about Chronic Lyme, but denies Long COVID exists. My theory on this is that, within certain communities, it's acceptable to frame your illness in certain ways, but unacceptable to frame it in other ways. Chronic Lyme aligns with much of Rogan's thinking: The central narrative is that the CDC, FDA, and IDSA are suppressing the truth about Chronic Lyme. The government is lying to you. The establishment is the enemy. Chronic Lyme doctors frame themselves as outsiders challenging the establishment. "Lyme-literate doctors" operate outside mainstream guidelines, prescribing things the establishment says are unnecessary. The framing is individual doctors versus institutional authority. It has a bioweapon component and conspiracy theory ties: Plum Island. etc. Beyond that, the people who suffer from it largely come from a Rogan-audience background: rural. Outdoorsy folks. Hunting and fishing is an ideal time to pick up a tick. Harder to deny when people you know will have personal experience with it. In contrast, ME/CFS is very much left-wing coded. Identity-based advocacy. Community-building around diagnosis, lived experience language, intersectionality frameworks, "nothing about us without us." These are progressive movement structures. ME/CFS advocacy works through institutions: NIH funding, academic conferences, federal advisory committees, NASEM. A left-liberal relationship with power. Add in disability justice framing, accommodation, identity-first language, "dynamic disability" word borrowed from progressive rights movements. People will probably (mis) read this and think I'm saying these illnesses are simply political constructions. They aren't, and that's not what I'm saying. Rather, what I'm saying is that people who might identity as having Chronic Lyme in one community could instead identity as having ME/CFS in a different community, and vice-versa. A rural conservative woman in Wisconsin with post-infectious fatigue, joint pain, and brain fog will be told she has Chronic Lyme. A progressive woman in Brooklyn with the same symptoms after a viral infection will be told she has ME/CFS. Same symptoms, just a different zip code and a different political culture which results in different diagnoses. I've heard from many people who say they won't use the Long COVID label anymore because it results in them being shunned by others and by the medical community. I think this is clearly part of the larger phenomenon of pandemic denial - it is increasingly unacceptable to blame your sickness on the pandemic, as it forces others to come to terms with the reality of the situation.

NOW: Even as anti-war protester Guido Reichstadter remains on top of the adjacent bridge, fireworks are fired from a barge in the river as the nearby Washington Nationals Baseball game concludes.

It’s Bandcamp Friday, all proceeds go to me if you buy my music on there today🫶🏾 drewempire.bandcamp.com/music

@DrewEmpire718 Thank you for sharing your story. I’m glad you’re getting support. Good luck with the new music you’re working on!

Grateful for the amount of support I’ve been getting recently!!😁

@nickelpin Thank you for spreading the word about mask decorating. I’ve just sent chains and links to buy decals to a friend who wants to go back to masking. And I suggested she follow you

@iPsychApps @SolidEvidence Then why mention a tablespoon at all?

@vnaylon @SolidEvidence Football field.

This is crazy. Imagine a hole the size of a football field that is 700 feet deep. Now fill it up with wastewater, and remove a tablespoon. That was our starting material for this study. 1/

The difference between not-ad and “stealth ad” seems to be the existence of the Grok circle. If it’s a regular tweet, it has a grok circle. It’s it’s an Ad that isn’t labeled with “Ad”, it doesn’t have the Grok circle

@Nicole_Lee_Sch Gerson 🤍

Last day of the semester for this covid aware prof! Another successful academic year with no symptomatic covid infections or positive periodic tests! Thankful I have the resources, knowledge, and solidarity of other cc folks to keep myself and others safe! 1/2

Hot take: Incarcerated people should have the right to vote.

Is 5 ACH good for a dentist’s office? #sarscov2

@LostitNft @brownecfm yeah. i see it in certain friends. you can also see a lot of stories like that in @envidreamz posts (tons of screenshots of examples)

@vnaylon @brownecfm That 30 yr old complaining of a achy back - LC. That 40 yr old with a sniffle - LC sequelae. That 20 yr old with sudden need for glasses - LC. They don't know that have LC. This is the problem. The time period is how long it takes for them understand/admit to themselves it's LC.

I rarely share anecdotes, making an exception here. I've spoken to too many people recently who have developed chronic health problems that are temporally correlated with a recent Covid infection but who weren't aware that Covid was likely the cause. No idea they had Long Covid.

@Biff234523 Curious for examples. Are these the types of posts you’re referring to?

Well, this is getting a pretty good amount of engagement lol, I guess maybe I’ve curated a pretty good list of followers in that regard. And thanks to everyone for the thoughts. But my question was still mainly inspired by the fact that I haven’t seen all that much engagement when I’ve retweeted origins stuff in the past, so🤷‍♂️

Can anyone explain to me what’s up with most people in the COVID conscious community not caring about the origins of the pandemic (which does involve a lab leak, we at least know that much) and holding those responsible accountable? Is it some sort of cognitive dissonance (which, of course, CC folks are not immune to) where it’s too painful to imagine that a handful of real people, who continue to go free, are directly responsible for everything that we’ve been dealing with for the past 6+ years and continue to deal with? So it’s just dismissed, and mostly just people who have “moved on” from the pandemic who are capable of caring? That maybe seems most likely to me, but I’m often left thoroughly confused, and I have no real idea. Whatever it is, it’s certainly annoying.

@SalvMattera Out of the hospital and back on the grind 🔥 Love it, take my energy

Carmen Scheibenbogen is one of the most prominent ME/CFS researchers in Europe. Yet, it appears she has no idea how the immune system actually works. Here she is on a podcast in 2026 telling people that masking weakens your immune system, citing the debunked "immunity debt" hoax, and recommending "otherwise healthy" people not bother protecting themselves. Even if we accept that as true, her own list of risk factors (female, atopic, overweight) covers most of the adult population. If you want to know why there's been almost no progress in the ME/CFS space for the last 40 years, this is why. The researchers actively spout dangerous nonsense.

TIL if you have a gene linked to disease, then you can legally be denied insurance for long-term care

@vvalkyri Thanks, I’d forgotten that about flu.

@vnaylon @brownecfm Flu can do the same things; the timing of the heart rate stuff in the screenshot tracks with that