Span

Forgot to tag @jenchanfreau.bsky.social , who is also part of this (which I'm so excited for!)

6. There can be controversy over drug approvals for people with rare conditions because there doesn't have to be as much evidence that it works. But people with rare conditions deserve treatment.

Justice4me.uk lawyers have asked me for evidence of my submissions to DHSC and NHS England 2022 - ongoing. I have obliged; why would I not? What Maeve and I went through has not stopped, despite a 3 year inquest and 6 national institutions being cited in the Prevention of Future Deaths report 2024.

in the development of autoimmune conditions like lupus & multiple sclerosis, and chronic ME/CFS, as well as cancers. Folks wanting to know about EBV vax research can look here: pmc.ncbi.nlm.nih.gov/articles/PMC... and: www.nature.com/articles/s41...

Yes: Sunlight, vitamin D, diet, age at EBV infection, hygeine, rate of diagnosis.

Matthias Wielscher (Vienna) showing significant genetic associations to ME/CFS via rare gene disruptive variants in UK Biobank to C2orf66 and OBSCN genes. Wishes to use long read Oxford Nanopore Technologies approach in a replication study.

I wonder where dopamine disorder “encephalitis lethargica” and other virus-triggered complications sit in the ranking. “Experience”? life history, known as “age”and stage?

#DVparty #NF RAISING HARE X BODY WEATHER Excited to present my mood board for THE CALL OF THE DUNNOCK, a nature memoir about discovering the wildlife in my suburban garden while grappling with being housebound due to a chronic illness. #mecfs

Oh this is so good. Adore this game thank you thank you. Anthropeum.com · Sep 21 2026 🟥🟨🟩🟦🟥🟥🟩🟨🟨🟨 50,764 · top 52% of players today!

Spotting Extinction Debt in the wild (including Aotearoa based research) Thanks for introducing me to this term @endofthepier.bsky.social @xriskology.bsky.social concept might interest

Why are all those tech dudes so especially weird about fertility rates? It's not just misogyny or eugenics or greed. Their twisted definition of "human" and their odd conceptions of types of extinction and their fundamentally not human goals for the future are all part of the weird story.

immersive and compulsive listen from @legroff.bsky.social “the hummingbird with its invisible wings, darting among the flowers” 👀 awww not in Engleterre, hummingbird moth perhaps ok, ok, back in 🎧

**Please repost** If you're enjoying Paper Skygest -- our personalized feed of academic content on Bluesky -- we'd appreciate you reposting this! We’ve found that the most effective way for us to reach new users and communities is through users sharing it with their network

2/ "we identified 26 genetic risk loci for fibromyalgia, providing robust characterization of its genetic architecture. These findings establish a firm biological basis for a long-debated condition." #Fibromyalgia #Fibro #FMS #FM

Most HPV16 research treats the virus as genetically static. It is not. HPV16 isolates differ by up to ~2% of its ~7900 bp genome, and can differ in cervical cancer risk by >100-fold. We analyzed 4704 carefully-curated HPV16 genomes to study this variability. 2/9

It's never in my entire life worked 😂 For decades, docs told my parents & me, "it's anxiety, she has panic attacks" In my 30s: got an x-ray of my heart. Radiologist wrote "her heart is fine, but why does she have COPD lungs??" Saw a pulmonologist. Raging lifelong asthma. Lungs 150% normal size 🫠

truly the problem is the idea that you can and should maximize utility from other people's reproduction.

Great paper. Can we then also conclude that rare recessive diseases would have been more common, where it not for the negative effects that are exerted on carriers?

Not the NYT literally claiming the decline in teen births is an apocalypse *and* that it’s because of phones and not an active international campaign to f’ing reduce teen births as a Moral Good www.nytimes.com/2026/06/18/o...

You might enjoy “Shakespeare is Hard, but so is Life” by Fintan O’Toole, a short book. It also includes some asides about Renaissance period in surprising consonance with Palmer.

Fun fact: Mendel originally planned to breed mice but the abbot at his monastery took offense at the idea of a priest having anything to do with sex, so Mendel switched to peas. Mendel was grateful that "the bishop did not understand that plants also have sex.”

An accurate diagnosis can give us so much, yet many people wait years to receive an accurate diagnosis, causing a physical and emotional toll. What underlies this and what can we do about it? In this week’s TPWKY book club, Alexandra Sifferlin joins to discuss her book The Elusive Body. Listen now!

Hard-to-detect mutations explain how common autoimmune diseases arise www.nature.com/articles/d41...

‘The Wonder of Life on Earth’, illustrations by Raxenne Maniquiz, published by @twohootsbooks.bsky.social

Mutation-selection-drift balance models of complex diseases https://www.biorxiv.org/content/10.1101/2025.05.18.654722v1

By the early 1900s, the work of Goddard & others had led many Americans to embrace negative eugenics, or the idea that "unfit" individuals should not be allowed to reproduce.

The drug is trimetazidine (seems very paternalistic to not mention it)

A fun paper explainer, with sci fi references

Rita Levi-Montalcini Thanks for highlighting, this lady’s career is fascinating. “one of the first scientists to point out the importance of the mast cell in human pathology.”

Prevention may have wider spillovers than we thought: Eric Topol explores the evidence that older adults who received a shingles vaccine had a roughly 20% lower risk of developing dementia in later years buff.ly/iuMmX9U #ShareGoodNewsToo

1490s 💫 reading @adapalmer.bsky.social book Inventing the Renaissance, I lately learn “the #earlymodern “ could be that old* too *for some

Apt

“it can be hard not to marvel at certain empirical blind spots that ought not have been there by the middle of the twentieth century.” Yah. Jaw dropping to glimpse the mirror mid century researchers held up to themselves when writing about women patients .

The idea that getting surviving a disease is proof of strength and fitness has deep and largely disgusting roots in American history (see Olivarius’ book). In this case, they are drawing the lOgIcAl conclusion that needless exposure to disease is therefore a valuable test of strength…

People distrust healthcare, and often it's not the medicine itself. It's because of exceptionally negative experiences with medical "professionals." I'm a white male. And even I have experienced doctors treating me like total garbage. Makes me scared of how marginalized people are treated.

”Long COVID is sometimes described as an anything-goes sequela. This study shows the opposite. A consistent, reproducible biological signature across independent cohorts.“ (from the Zdenek tweet thread on the nature paper)

In this week’s TPWKY book club episode, Dr. Homer Venters joins us to discuss his latest work, Outbreak Behind Bars: Spider Bites, Human Rights, and the Unseen Danger to Public Health. Dr. Venters has extensive firsthand knowledge of the barriers in care - and he has evidence-based solutions.

A few charts we created for this analysis.