ME/CFS publications haven't increased since 2005. An international scandal.

Most of the PAIS disease burden is ME. We need to communicate that better. I'm really glad about all the media attention for PAIS in the Netherlands right now, and glad that ME is being mentioned more and more often. (Thread transposed from Dutch) 1/10

Yesterday we held a beautiful PAIS Protest Vigil in The Hague. We called for long-run research funding like a Decade Against PAIS. 500 people showed up, we made the evening news, were covered in the major newspapers, and had politicians attend! It was also beautiful 🕯️ 1/7

So much ME research treats PEM either as an afterthought, or at best as something only triggered by physical overexertion. But PEM should be absolutely central in ME research, as I argue in my latest blog post viralpersistence.sub... 🧵 1/10

Make PEM central to ME research

Most research fails to explain the disease’s central feature

viralpersistence.substack.com

We all know that there are few PAIS doctors. But when I asked X why, people just said "they don't care about us". I found this a lazy explanation. Most problems have systemic explanations, so I dug into the Dutch healthcare system to find out 👇🏻

Why are there so few ME/Long Covid doctors?

Without a (sub-)specialty, there will be no specific insurance codes. Without specific insurance codes, there will not be much specialist care.

viralpersistence.substack.com

New blog post, in which I argue that science should be about delivering solutions, but too often functions as a hope-delivery system for patients. viralpersistence.sub... 1/2

Since the 1950s, the cost of developing a new drug has increased by ~80x. It now costs on the order of a billion dollars to get one drug approved (including the cost of failures). ➡️ fewer drugs get invented, ambitious but risky areas are avoided, and patients pay the price 1/3

Doe jij ook mee? Praat mee met onze plannen. En als je wil kun je zelfs meehelpen als vrijwilliger. Maar word in ieder geval lid van de ME/cvs Vereniging, want of je nu wel of niet actief meepraat of helpt: met elk extra lid wordt onze vuist weer sterker en groter.

I re-analyzed the n = 3,925 TREATME survey and the results are.. pretty interesting! The original treats any improvement the same regardless if it's small or large. I instead calculated weighted average effect scores. 1/

PAIS getting labeled 'unmet medical need' would be worth >$1B in research funding! It takes ~$1B in public funding to lead to 1 successful drug. UMN would probably lead to MULTIPLE effective drugs <10y

ALERT🚨 The EU is redefining "unmet medical need" as part of its pharma reform. Drugs meeting this standard get extra market exclusivity and regulatory priority. But the proposed criteria will likely keep excluding non-progressive & "non-lethal" diseases like ME/CFS & long covid

Hier zijn 3 concrete wensen die ik heb voor PAIS in Nederland: 🧵

How much does public research funding affect drug development & market success? Two papers have looked at this (h/t @mattsclancy @Atelfo ). Based on these, I ran some quick calculations for ME/CFS and Long Covid 🧵 1/

@jonfavs.bsky.social @chenoweth.bsky.social @mattyglesias.bsky.social @natesilver538.tweet.pub

Siebe@siebepersists.bsky.social · last yr.

I already left comments on their spreadsheet yesterday saying that many numbers were greatly and obviously inflated. @gelliottmorris.com pushed out these claims based on bad data 🧵

I already left comments on their spreadsheet yesterday saying that many numbers were greatly and obviously inflated. @gelliottmorris.com pushed out these claims based on bad data 🧵

G Elliott Morris@gelliottmorris.com · last yr.

Our unofficial crowdsourced estimate of yesterday’s protest turnout is rising to 4.2-7 million as we gather more data. At this point potentially the second-largest single day of protest in U.S. history! www.gelliottmorris.com/p/no-kings-d...

I wrote up some quick thoughts on the different levers we can pull to solve a disease: 1. Research quantity (increase funding) 2. Research quality 3. Market incentives Seems to me that patient advocates tend to focus on #1 and neglect #3. (Link in reply)

I don't like the BSky Discover algorithm. It's showing so much irrelevant stuff to me, and not taking my feedback into account enough: here's 6/7 irrelevant

This large (n= 1,455) biomarker study from August last year used UK Biobank data. It's generally a well-conducted study, but the Biobank doesn't use reliable ME/CFS case definitions like CCC/ICC for which PEM is necessary. Instead, it relies on doctor/self-diagnosis www.medrxiv.org/content/10.1...

Concerning! manifold.markets/Gabrielle/wi...

Will the US deport an American citizen before 2029?

84% chance. This market will resolve to YES if at least one verifiable case occurs where a person who was a U.S. citizen at the time (either by birth or naturalization) is deported from the United Sta...

manifold.markets

Aaron Rupar@atrupar.com · 2y ago

Trump to Bukele: "Home-growns are next. The home-growns. You gotta build about five more places. It's not big enough."

A couple of crowd size amateur estimates for the #handsoff protests 🧵 Boston, Massachusetts 50K - 63K

I'm looking for aerial footage of the DC protest. I want to estimate the crowd size. Can anyone find it?

I bet @moskov.goodventures.org could submit a good list :)

Krassensteins@krassenstein.bsky.social · 2y ago

I'm experimenting with Claude AI, and had it do a peer review of a paper, including its own analyses: 🧵 Claude here, AI assistant. I've completed a peer review of a PLOS ONE paper examining hippocampal changes in Long COVID and ME/CFS. Here's my analysis:

Nostalgia is largely a desire for the naivete of childhood - life seemed simple, good, because you got sheltered by adults from the real world and its complex reality

Colin Camerer@cfcamerer.bsky.social · 2y ago

Great data journalism: people report “best times” is when they were 10-15 yo www.washingtonpost.com/business/202...

Madrid’s metro was 71 miles long in 1995. That would be the world’s 51st longest today, reasonable considering Madrid is the 57th largest city by population. Yet over 12 years, the metro would ~3x in length at costs much lower than was thought possible. Here’s how they did it. 🧵

for sure - co-infection (e.g. in humans, or species like pigs that carry ex-human viruses) and reassortment is a real concern, particularly during flu season. Though this wouldnt change the fact the haemagglutinin would need to be from H5, so would need to adapt for human transmission

Het vogelgriepvirus bij koeien in 🇺🇸 bindt aan “avian-type” receptoren. Voor mens-op-mens overdracht is binding aan “human-type” receptoren nodig. Eerder waren daar meerdere mutaties voor nodig, in deze studie nog maar 1. Dit vergroot het risico op een nieuwe pandemie. www.science.org/doi/10.1126/...

A single mutation in bovine influenza H5N1 hemagglutinin switches specificity to human receptors

In 2024, several human infections with highly pathogenic clade 2.3.4.4b bovine influenza H5N1 viruses in the United States raised concerns about their capability for bovine-to-human or even human-to-h...

science.org

An excellent point. Note by contrast how ineffective social media bullying is at thinking through how a better health care system would manage provider payments or decide which treatments do and do not get coverage.

Michael Caley@michaelcaley.bsky.social · 2y ago

something I've started asking myself to what degree are we choosing a fight because it's easy to accomplish online? eg, text-based micro-blogging platforms make it very easy to check if someone uses certain words in their posts but what is the theory of change here, what follows from word usage?

Groep ME-Den Haag, die veel hebben bereikt voor ME in Nederland, trekt zich terug uit de klankbordgroep van ZonMw Zeer treurig en zorgwekkend. Ik ben ze ontzettend dankbaar voor wat ze hebben gedaan en opgeofferd.

ME Centraal@mecentraal.bsky.social · 2y ago

Tot zwijgen gebracht mecentraal.wordpress.com/2024/12/06/t... & www.facebook.com/MECentraal/p...

“A Bird Flu Pandemic Would Be One of the Most Foreseeable Catastrophes in History” Why are we not taking this vastly more seriously given the potential downside? Still time for Biden officials to do more and for senators to prevent the RFK clown show from succeeding them.

zeynep tufekci@zey.bsky.social · 2y ago

We’re entering flu season with bird flu raging among US dairy cattle: ~third of CA herds infected. The danger is flu viruses have a trick: they can swap segments —one farmworker co-infected by human and avian flu— to cause pandemics. We may get lucky. I hope so. 🎁🔗 www.nytimes.com/2024/11/29/o...