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14 Dec, 25 tweets, 9 min read
22 months in, and I still can find more accurate info about Covid on Twitter than if I had to instead rely on articles in NYTimes by Monica Gandhi, New Yorker by Dhruv Khullar, etc, and official signs from my govt (all emphasize hand-washing) 1/
I went from giving keynote talks warning about disinformation (2019) to helping @jeremyphoward make multiple YouTube videos contradicting the CDC & WHO (#masks4all, starting March 2020), even though I believe trustworthy institutions are essential for combating disinfo. 2/
Our institutions failed: saying masks don’t work; denying covid airborne; failing to address #LongCovid; treating disabled & elderly as expendable; claiming pandemic over; wishful thinking as policy; overpromising vaccines definitely end pandemic; ignoring pre-symptomatic 3/
There was plenty of scientific evidence FROM THE START to suggest that covid may be airborne, it is not just like the flu, masks help, post-viral illness can cause permanent mass disability, spread can be pre-symptomatic,.. This is not about being right "in hindsight" 4/
And these failures are ongoing.

🧵of 🧵 of my various attempts over the past 22 months to make sense of these failures. 5/
March 2020: I reshared @noUpside essay on move from consolidated media w/ consensus narrative (everyone mostly heard the same “facts”, even if those were sometimes lies of the powerful) → information inundation of social media & fracturing of narratives
While social media is rife with disinfo, I was able to find higher quality covid information (and sooner) on Twitter than what friends/family found in mainstream media. I still consider this to be the case. 7/

Many voices that have been excluded from prominent media & scientific advisory positions (in govts, public health orgs) can be found on social media, including voices of disabled people, aerosol scientists, research from experts outside the West 8/

Related: race, gender, & prestige influence who is perceived as "rational" and who is perceived as "too emotional" and "panicking" (hint: it is often not about the evidence or quality of their arguments) 9/

April 2020: I listed the overemphasis on randomized control trials & precision (we don’t have data on the EXACT new thing), CDC & WHO not designed for real time updates, & how ignoring threats seen as more “rational”. All of these are still issues 10/

Only later did I see how emphasizing hand-washing aligns with an ideology of personal responsibility as the solution to systemic problems. Improving the quality of our shared indoor air require a more collective response 11/

Late April 2020: thread of quotes from a great article by @edyong209 on why the pandemic was hard to understand 12/

Mid-May 2020: A thread on the victim-blaming & lack of empathy I was seeing for covid patients, including those suffering from "long-tail covid." This has been an ongoing issue. 13/

July 2020: Articulating how patients have crucial medical expertise, distinct from doctors. I shared this (+ some of my personal story) in my @StanfordAIMI keynote 14/

Oct 2020: The psychology of many people not being able to recognize their own vulnerability is significant: believing that they will never be disabled or chronically ill, that they won't be impacted, etc 15/

[Long personal interlude while I immigrated, with my partner and our child, during the pandemic, changed jobs, & spent months getting set up in my new country]
Sept 2021: Reasons why western countries believe in their own exceptionalism and refuse to learn from other countries’ experiences, even as they keep making the same mistakes 17/

The evidence was becoming increasingly clear of coordinated, corporate-funded campaigns to downplay covid, with parallels to climate change denialism 18/

Medicine is inherently political: which hypotheses get funded, whose expertise is recognized, whose suffering is counted. 19/

Oct 2021: Pre-pandemic, I had been frustrated by how disagreeing with doctors is painted as inherently “anti-science”, given how often doctors disbelieve patients with chronic illness (like me). The pandemic heightened this. 20/

I'm sometimes told I should shut up about public health issues. Here is part of why I want people from all backgrounds & domains to be able to participate in discussions of issues that impact them 21/

Nov 2021: There is often more focus on whether the public trusts key institutions, than on how those institutions have eroded our trust (& what they could do to rebuild it) 22/

It is disturbing to watch doctors share misinformation while advising the government, writing for mainstream media pubs, being quoted by journalists, etc. 23/

Dec 2021: Gatekeeping & lack of diversity contribute to why our institutions sometimes get things so wrong 24/

Pre-pandemic, I knew that doctors often disbelieve patients and that medical system can be error-prone, hostile to patients, & traumatizing, yet I still didn't expect the pandemic response to be quite this bad

essay I wrote in Jan 2019: medium.com/@racheltho/the… 25/ Trust people to understand their own bodies & experiences MaA few years ago, I went to the ER in the worst pain of my li

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More from @math_rachel

Rachel Thomas Profile picture
15 Dec
Algorithmic mechanism design (eg ad tech auctions such as Google, multi-sided platforms such as Uber) contains an inherent contradiction:
- theory of preserving autonomy & rationality of participants
- reality of opaquely generating & exploiting information asymmetries
@jakusg 1/
The point of an auction is to incentivize truthful disclosures of preference & valuation; by contrast, Google, acting as an auction platform & multi-sided mechanism designer, is effectively profiling market actors so that it can extract more surplus for itself. 2/ Google's technical designs ...
In privately controlled & highly automated digital platforms, algorithmic market-like mechanisms simulate how a market might behave without necessarily including any of the features necessary to constitute a market, such as freedom to deal or knowable information rules. 3/ Using platformed applicatio...
Read 7 tweets
Rachel Thomas Profile picture
14 Dec
How can we think about building systems not for individual end users, but for groups and communities? So much of computer science is limited by the assumption that there is an individual end-user who should be the benefactor of what we build.
- @marylgray keynote #NeurIPS2021 1/
ML gravitates to large scale data, even though it has rarely had a robust account of where that data comes from & under what conditions, and is almost always deeply disconnected from the social relationships that produced it. 2/
Data is power. Because data has become so powerful, we must transfer the tools of data collection, aggregation, & sharing from engineers to the communities in society that carry the risks. 3/
Read 9 tweets
Rachel Thomas Profile picture
11 Dec
All the public health messaging I see is incorrectly based on droplet transmission (wash hands, keep 1.5m distance, clean surfaces, cover cough) with NO mention of masks, ventilation, air filters, #COVIDisAirborne 1/ Sign with Australian govern...Sign reading: unite against...Sign reading: Protect yours...Sign reading: covid-19 hygi...
My state is reopening borders tomorrow with NO masks. There are vaccine passports & a QR check-in app, but these are insufficient.

Vaccine passports don't account for breakthroughs, waning immunity, kids unvaxxed, & now Omicron. 2/
Check-in app is retrospective (eg after exposure), whereas ventilation & masks would be proactive (keep covid from spreading). Also, I suspect the check-in app is more effective for small outbreaks/when maintaining covid zero, and will be less useful once covid is widespread. 3/
Read 5 tweets
Rachel Thomas Profile picture
7 Dec
There is widespread, well-documented ableism, racism, & unnecessary gatekeeping in STEM & medicine, and this is damaging our pandemic response in the West.

Pointing this out does not make you anti-science (I love science, but this is a huge problem). 1/
Disabled & chronically people have crucial expertise, and this expertise is being ignored 2/

Prominent health institutions were warned about the severe risk of post-viral illness BEFORE the pandemic 3/

Read 8 tweets
Rachel Thomas Profile picture
5 Dec
We can not fix public health until we reckon w/ how institutions have failed public’s trust (harmful advice, contradictory rules, overconfidence, disbelief of suffering patients). Patronizing "shut up & trust the experts" is not going to address this 1/
Some folks tell me experts gave the best advice known at the time, that nobody knew, that the evidence changed.

I need to share a few receipts. In March 2020, I publicly advocated for ordinary people to wear masks, at a time when CDC & WHO said not to 2/ Screenshot of tweet from @math_rachel Mar 29, 2020: Please rtweet from @math_rachel, Mar 29, 2020: Medical-grade masks stweet from @math_rachel, April 14, 2020. Excited about this screenshot of a youtube video. Image of Rachel and Jeremy.
In March 2020, I said young & healthy people should NOT assume they were safe from potential long-term impacts of covid. I shared historical review of flu pandemics leading to neurological problems. 3/ tweet from @math_rachel, March 12, 2020: This is something mtweet from @math_rachel: Mar 13, 2020: "For more than atweet from @math_rachel, Mar 13, 2020: Don't just assume tha
Read 7 tweets
Rachel Thomas Profile picture
3 Dec
A problem w telling people "just trust the medical experts" is that they still need enough time & scientific literacy to discern whether to trust "experts" promoting mass infection of kids, droplet transmission, & claims LongCovid is psychogenic, OR experts who say opposite 1/
(to be clear, do NOT trust the 1st group)

There seem to be ZERO professional consequences for repeatedly being wrong for last 22 months. Some folks in 1st group have prestigious credentials & platforms in major media outlets. General public may not know their track records 2/
So general public needs to invest a fair amount of time (which many do not have) just to know who to trust, what is true, & how to stay safe. At the same time, will be condescended to & criticized for disagreeing w/ "experts" 3/
Read 4 tweets

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