We need more nuanced ways to talk about medical & public health disagreements, without the simplistic black-and-white reductions that you either trust ALL doctors in ALL matters OR you must be anti-science. 1/
"Science is less the parade of decisive blockbuster discoveries that the press often portrays, and more a slow, erratic stumble toward ever less uncertainty." @zeynep 2/

Pundits urge people to “listen to the science,” as if “the science” is a tome of facts and not an amorphous, dynamic entity. @edyong209 3/

I cried w/ joy when I got my Pfizer vaccine. I am grateful to everyone who contributed to the vaccines. And I am grateful to the scientists who proved that #COVIDisAirborne & advocate for better ventilation

@jljcolorado @kprather88 @trishgreenhalgh thelancet.com/article/S0140-… 4/
Modern medicine saved my life. I will forever be grateful that I got a prompt diagnosis & effective treatment when I had a life-threatening brain infection a few years ago 5/

Also: As a woman with chronic illness, doctors have doubted & misdiagnosed me, repeatedly. I was sent home from the ER in unbearable pain with only aspirin & no tests, when I actually needed *brain surgery*. 6/
A doctor told me the severe heart palpitations that kept me from sleeping for 4 days were “anxiety”, when actually I had a foreign object in my heart (PICC line 5cm too deep). 7/
I wasn’t believed the 1st time I dislocated my shoulder. After the 2nd time, my orthopedic surgeon said I could have avoided my shoulder surgery if I had gotten treatment the 1st time. 8/
Almost all patients with chronic illnesses or disabilities have experiences like this-- of being dismissed, disbelieved, misdiagnosed, given inaccurate info, & harmed by the healthcare system. 9/

bbc.com/future/article…
None of this is surprising if you are familiar with the research on sexism, racism, ableism, anti-fat bias, and other biases & blindspots in medicine. Medicine is not absolute truth. 10/

Black people, including Black children, are given less pain medication. One study found medical students believe that Black people feel less pain than white people. And yet medicine is supposed to be infallible? 11/

washingtonpost.com/health/racial-…
I’ve written about the political and cultural and historical context of medicine. We can’t understand medicine apart from this. 12/

fast.ai/2021/10/12/med…
I know “do your own research” is a tagline for anti-vaxxers & conspiracy theorists (who have done so much harm)
BUT as a patient, all my personal experience has been that patients absolutely need to read research papers. 13/
Most doctors are unreasonable time constraints. They don’t have enough time to spend with each patient or to keep up with research outside their specialization. Many patients with complex or neglected conditions have more time & motivation to keep up on the latest research. 14/
I admire the long covid patient advocates of @patientled @itsbodypolitic @C19LH_Advocacy and other orgs. It saddens me to see a few doctors in their hubris dismiss their valuable expertise. 15/

ME/CFS patients have been compared to anti-vaxxers for pushing back on a now discredited study that actively harms them. We need more recognition that pushing back on faulty science is a crucial part of science. 16/

statnews.com/2016/09/21/chr…
Vaccines are safe & effective. I admire the work of CDC & WHO to promote vaccine science AND I supported @jeremyphoward in contradicting the CDC & WHO (in March 2020 he argued that masks were useful for ordinary people) 17/

I contradicted several MDs I knew in early March 2020, who were telling people that they should worry more about the flu than covid. I co-wrote this viral post (this was before there was shelter-in-place anywhere in the USA) 18/

We got some criticism that we should shut up about public health issues & trust the experts. But we also got many responses like the one below, that we helped people take covid seriously 19/

I was concerned about long-term effects and skeptical of “young people have zero reason to worry” from the start (tweet from march 12, 2020) 20/

Jeremy got tremendous pushback against #masks4all in the early days (including from people that now act like they supported masks all along). Advocacy work is stressful & exhausting, and I admire him for doing it. 21/

washingtonpost.com/national/at-th…
People have selective memories, and forget how common some now (mostly) disproven stances were back then among doctors, that flu kills more than covid, that masks are harmful for ordinary people, no reason to worry about long-term effects, etc 22/
I still see a lot of arguments that are solely appeals to authority: “This one doctor is THE expert, so you’re automatically wrong and they’re right [that long covid is no big deal, that kids can’t wear masks, etc]” on topics that are highly debated. 23/
Some doctors are advocating for public safety, recognize the seriousness of long covid, and listen to patients. There are some great doctors & researchers out there, including @drajm @DrZoeHyde @dgurdasani1 @PutrinoLab @VirusesImmunity @drgregkelly @MBVanElzakker & more 24/
It is deeply disturbing to see a few doctors given platforms to intentionally mislead and for “contrarian” MDs to launch careers as pundits with false & harmful messages about covid. 25/
I see a few doctors being both incorrect (LongCovid is just “a little fatigue”, it’s probably psychogenic, etc) AND very patronizing (suggesting that those of us without MDs shouldn’t be allowed to speak up on these topics), a disastrous combo. 26/
Medical expertise is valuable AND doctors disagree on many issues AND many doctors are great AND some doctors get some things seriously wrong AND all these things are true at once. 27/
Patients have valuable and essential expertise.

I speak about this more in my @StanfordAIMI AI in Medicine keynote: bit.ly/MLmed. I was invited to speak as an AI researcher, but my expertise as a patient is just as valuable. 28/

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More from @math_rachel

13 Oct
It is funny when the "only doctors are allowed to speak about public health" crew suggests I wouldn't want outsiders weighing in on AI, because one of my core values/driving motivations is that I want people from all backgrounds involved with AI & AI ethics 1/ slide saying: ethics issues...
Most problems related to AI/automated systems are inherently interdisciplinary, benefiting from having experts from many domains involved, spanning STEM, social sciences, and the humanities.

And those who are most impacted by a system should be centered most. 2/
Too often, there has been unnecessary gatekeeping & credentialism in AI, narrow definitions of who has the "right" background. I talk about this more here, but our vision for fast.ai was a community for ppl w/ the "wrong" backgrounds. 3/

bit.ly/rachel-TEDx slide reading: AI needs mor...
Read 7 tweets
12 Oct
My new essay: In topics ranging from covid-19 to HIV research to the long history of wrongly assuming women’s illnesses are psychosomatic, we have seen again and again that medicine, like all science, is political.

fast.ai/2021/10/12/med… 1/
We are not prepared for the surge in disability due to #LongCovid. The physiological damage covid causes can include cognitive dysfunction, GI immune system damage, immune dysfunction, increased risk of kidney outcomes, dysfunction in T cell memory generation, pancreas damage, 2/ Experts warn that we are not prepared for the surge in disab
We are seeing concerted efforts to downplay the long-term health effects of covid using strategies straight out of the climate change denial playbook... Many have a significant financial interest in distorting the science around long term effects of covid. 3/ As the evidence continues to mount of alarming long term phy
Read 9 tweets
11 Oct
Designing recommender systems to depolarize:
- algorithmic social media isn't primary driver of polarization, but could be useful intervention
- goal: to transform conflict, not to suppress or eliminate it
- 3 stages: moderation, ranking, & user interface
paper by @jonathanstray Abstract Polarization is im...
Polarization is involved in variety of feedback loops:
- it leads to less intergroup contact, which causes polarization
- it is a precursor to violence, which causes
- polarization it leads to selective information exposure, which causes polarization

arxiv.org/abs/2107.04953 Or as Ripley puts it: The c...
3 key places where changes to recommender systems could be used for depolarization:
- which content is available (moderation)
- which content is selected (ranking)
- how content is presented (interface) 4 Algorithmic depolarizatio...
Read 5 tweets
5 Oct
Pundits urge people to “listen to the science,” as if “the science” is a tome of facts and not an amorphous, dynamic entity. The naive desire for science to remain above politics meant many researchers were unprepared for a crisis that was both scientific & political to its core. Pundits have urged people to “listen to the science,” as
The pandemic hasn’t just been a science story. It is an omnicrisis. One must understand not just virology, but also the history of racism & genocide, the carceral state, nursing homes, historical attitudes toward medicine, social media algorithms, & more.
theatlantic.com/science/archiv… But the pandemic hasn’t just been a science story. It is a
Much of journalism is fragmentary. For science, that means treating individual papers as a sacrosanct atomic unit and writing about them one at a time. But for an omnicrisis, this approach leads only to a messy, confusing, & ever-shifting mound of jigsaw pieces. @edyong209  Much of journalism is fragmentary: Big stories are broken d
Read 4 tweets
4 Oct
"My concern is that reducing humans to acting as data sources is fundamentally inhumane."
-- Alan Blackwell 1/ dl.acm.org/doi/abs/10.714… What if the human and computer cannot be distinguished becau
"But whereas the core problem of symbol-processing AI was its lack of connection to context – the problem of situated cognition – the core problem of machine learning is the way in which it reduces the contextualised human to a machine-like source of interaction data." 2/ To summarise this section, it has drawn comparisons between
The user is effectively submitting to a comparison between their own actions and those of other people from which the model has been derived. In many such comparisons, the effect will be a regression toward the mean. 3/ Whether or not the result is immediately useful, the work of
Read 5 tweets
1 Oct
When patients reject a mental health (mis)diagnosis for symptoms they know have physiological origins, it is *not* bc they are devaluing mental health.

Patients do this bc they know that it will lead to ineffective treatments & useless research. 1/5
There's a pernicious cycle: label a poorly understood illness as psychogenic ➡️ don't invest money in researching the physiological origins ➡️ claim the lack of evidence on physiological mechanism proves it's psychogenic ➡️ repeat

2/5
Bonus: if patients are not "rational" enough in their suffering as medical establishment offers them nothing ➡️ use this as further evidence that their symptoms can't have physiological origins 3/5 During the pandemic, America has often seemed divided betwee
Read 6 tweets

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