Everything about this is ill-advised

A very tiny percentage of creators go on to be famous, but that doesn’t mean that people don’t remember little things you did for years and years. Who came up with most of the world’s most famous jump rope rhymes? Who coined some of the famous idioms we use in daily speech? Who made up ‘Jingle Bells, Batman Smells?” Somehow, all of these things stuck and spread around.

When I was a small child, I saw a high school put on a production of the musical HONK. In one song, the mother duck describes various dangers that her baby should avoid in the water, including fishing line, which could strangle him. A member of the ensemble played the role of fishing line, doing a maniacal laugh and over-the-top strangling motions, and I found it hilarious– and to this day, that’s an example I often think of when talking about how ensemble members can still stand out in theatre. The guy who played the role might not even remember that he did that, but I do.

I took Suzuki violin lessons as a kid. The teacher made up lyrics to some of the songs, and she let her students make some up, too. Now whenever I hear the instrumental of one of those pieces, I always remember these ridiculous lyrics about a skunk that we sang in violin class. I don’t even know which student invented them!

In middle school, I found a video about atoms parodying Bill Nye made by some kids for a school product. It probably had less than 1,000 views, but I think of quotes from that video all the time. They had a parody of “We Will Rock You” with the chorus, “Protons, neutrons, electrons” that I think about a lot.

Flamingos can survive in low oxygen, high altitude, high temperatures, low temperatures, high alkaline, they can and will drink boiling water and they can be completely frozen at night and still get up the next morning

(animal death) this is a real undoctored photograph (*though the body was stood up for the shot) of a dead flamingo on the surface of lake natron, a lake so salty and so alkaline that it’s naturally carbonated like soda and would eat through your stomach lining if you drank from it.

When this photo went viral years ago, most people assumed this poor flamingo must have been killed by the lake.

It is actually the lake where 75% of its global population are hatched. This is a photo from the same lake:

This is the story of Mira, a dying kitten I rescued. I have started a GoFundMe to help pay for her medical bills as I am in a rough place financially. Her full story is posted on the GoFundMe.

Any support is appreciated, either through donations or shares 💖

Thank you for taking the time to read my little comic~ have a lovely day! ✨

Papa shook the cross road demons hand and said "yeah okay sure deal" thinking she would forget - but the Deals Warlock never forgets and she's here to collect.

6.5 hours later and tiny hand is outstretched and saying "Papa you made a DEAL let's go to the pool"

Me: (walks a friggen mile up to the house to relay the message)

your dad to come out here and

fix the pool filter

I mostly do this by following the relevant advocacy and research entities' facebook pages. They will update very frequently with new information.

Some good ones that I follow are The Ehler-Danlos Society and Dysautonomia International (this group particularly is funding/organizing a TON of long COVID research atm.)

There are several pages that collate stuff about ME/CFS also, but I have yet to find like, One Research Entity in the way that Dysautonomia International is. this may be partially because that framing of post viral illness has been primarily used in the UK and I'm in the US; I am sure such organizations exist. If anyone else has any suggestions, please do add them.

I have not found one central advocacy and research hub for long COVID, likely because it is so new and groups like DysInt, which already had decades of connections and experience, are shouldering a lot of the organizing/research stuff. (Although as always if anyone knows of additional trustworthy entities please do leave them in the replies!) If you join some of the long COVID support groups, people will often post links to new studies and articles, although of course this requires more legwork to determine whether the source is credible, it's still very useful for staying up to date on the newest stuff.

All in all: If you aren't embedded in the communities for the people who are most impacted by this, you won't know as much as they do. Because keeping abreast of this is like... the only way we can manage our lives. So. I really truly cannot overstate the value of joining some support groups on FB (or reddit or where ever a lot of patients exist and are talking to each other in large groups) and just listening. Yes, some people will be barking up some very wrong trees, but you will absolutely get people who have the critical thinking skills necessary to understand 1. what we know so far and 2. have hypotheses based on both that information and their lives experience.

It is also possible to find and follow medical professionals who treat these & adjacent illnesses who are talking about their observations and get info that way. Which, again, I do not pretend is the same as Peer Reviewed Studies. But here is the thing. This is emergent. By the time something has been Definitively Proven With High Quality Reputable Research, you're often a decade late. Obviously do not take every single thing someone says at face value, and always, ALWAYS remain willing to update your understanding of something as you gather additional information. But like...

This specifically is a topic where I find the really smug skeptical "cite your sources" type stuff really exhausting, because this is a case where listening to lived experience is actually really fucking useful, and as soon as you say those words people immediately tune you out. (I don't say this to you who sent this ask, you have not phrased it in a demanding or skeptical way at all and I appreciate your ask!) But being in spaces where hundreds and thousands of patients are all talking about their experiences gives you the ability to spot patterns in both symptoms of the illness and the current medical response TO the illness. It's a LOT of information. Information of varying quality, certainly, but using that as an excuse to simply NOT GATHER IT is absolutely bonkers unscientific, ironically!

You know how I'm often talking about alternate epistemologies? This is one of those situations where if you are either unwilling or unable to parse reports of lived experiences as information, you will be significantly less informed.