"The patients treated with [Amylyx] experienced a 25% slower rate of decline in performing essential activities such as walking, talking and cutting food compared with those receiving a placebo."

https://twitter.com/lauriemcginley2/status/1575600030731276288

When ALS news breaks, I turn to on-the-ground experts who follow every twist & turn, like @alsadvocacy

https://twitter.com/alsadvocacy/status/1575810718569353216?s=20&t=o0hfMlZ6VSh0TqmTTyqdUQ

On #TransDayOfVisibility I want to lift up the voices of trans young people who shared how they use social media & digital tools to pursue health & resilience (thread)

Full report: #CopingWithCovid @Hopelab @CommonSense @CHCFNews @vjrideout commonsensemedia.org/research/copin… "I guess just seeing people expressing themselves the way they want makes me happy because I can't really do that." —14-year-old non-binary, trans person #CopingWithCovid #TDOV

Re-reading: LET PATIENTS HELP, by @ePatientDave + @DrDannySands (because I learn something new every time) epatientdave.com/let-patients-h… Since I'm a card-carrying geek who likes to read footnotes and click, click, click until I get to the original source, I finally read a classic paper by Warner Slack, MD, and cited by @ePatientDave + @DrDannySands ncbi.nlm.nih.gov/pmc/articles/P…

Thank you for 6 years of learning & laughter! #TechTonics

https://twitter.com/VentureValkyrie/status/1366241289310642177

Thanks to @VentureValkyrie and @DShaywitz I got to learn from some of the superstars of health & technology - here are some of my favorite shows & guests...

A friend of a friend was recently diagnosed with #LongCovid. She is receiving good clinical care but asked for recommendations for where she could find #PeerHealthAdvice. Here's what I wrote back (and yes, I'm looking for feedback & more suggestions!): The @itsbodypolitic COVID-19 support group is a useful #LongCovid resource: wearebodypolitic.com/covid19

If it's @zeynep appreciation day, please let me join in! [THREAD]

https://twitter.com/nytimes/status/1297881409022038017

In 2014, many of us were shocked and dismayed by a cruel and senseless attack on @AdamsLisa, who was living with metastatic breast cancer. @zeynep wrote one of the best take-downs in response: medium.com/technology-and…

I’m reflecting on a challenging week as a caregiver for an elder who lives 3 hours away from me. Thanks to luck and preparation, he is OK. [THREAD] I want to share resources for anyone who has family members living alone -- young, old, and in-between. If we had not done the work to prepare for a crisis, my loved one may not have survived this week.

@S4PM Like a swimmer coming to the surface for oxygen I am finally out of my meetings and can say THANK YOU for the wonderful surprise of the award! #S4PM2019 @S4PM Thanks to @ePatientDave and @WheezyNurse for helping me send a message, which I want to share here, too:
#S4PM2019

A conference organizer emailed to ask for advice about topics, speakers, and panelists for an event focused on patient-controlled data sharing. Here are some of the ideas I shared (thread)... The @quantifiedself movement is full of people with ideas about capturing and controlling their own data, then using it to solve problems quantifiedself.com

Nine out of ten U.S. teens & young adults with moderate to severe depressive symptoms say they have gone online for information on mental health issues (compared to 48% of those without depressive symptoms) bit.ly/2DEqW4G 75% of teens & young adults with moderate to severe depressive symptoms say they have watched, listened to, or read people sharing about their health experiences online (compared to 54% of those with no depressive symptoms) - @Hopelab @WellBeingTrust study

Checking out @RealTalkAppNC "a community for teens packed with real stories about cringey moments" - example of #PeerHealthAdvice apple.co/2Ca8wIn More teens use Instagram than Twitter so it's smart that @RealTalkAppNC has a robust presence there: instagram.com/realtalkapp/ #PeerHealthAdvice

Kudos to @wbur, @healthblawg, and @ESchattner for explaining in plain language why Facebook is a lifeline - and a hazard - for patients & caregivers wbur.fm/2Ntz5ef People's eyes often glaze over when we geeks talk about health privacy, but this is important: A Facebook loophole allowed marketers to discover the names of people in private groups cnb.cx/2L8IPZp

I was recently asked what trends I pay attention to, what makes me hopeful or despairing about health & tech. Today’s examples… Hopeful: ONC's Proposed Rule On Information Blocking: The Potential To Accelerate Innovation In Health Care by @SavageLucia healthaffairs.org/do/10.1377/hbl…

The Instant, Custom, Connected Future of Medical Devices nyti.ms/2E9WeiR <- catching up on recent (fabulous) #InventHealth examples There's something in that @nytimes story for everyone: #wearenotwaiting for innovation in diabetes tech; "smart pills" and bottles; mobility aids -- even mention of the bogeyman of device innovation: Theranos

In the aftermath of a flood, residents support one another in ways that mental health experts say are critical for coping with disasters - great reporting by @livia_ar nyti.ms/2ULvxGH "Some people are in trouble, and other people have the tools to help them. Why wouldn’t they?" - another great story of peer help, by @GrahamDavidA theatlantic.com/politics/archi…

Shared today in my personal #foodallergy community group:
Food allergies are on the rise, but new science offers new solutions, by @SeattleMamaDoc babycenter.com/609_food-aller…? "'Babies aren't born with food allergies, they develop them.' I hope things are so simple as this doctor says." - parent who shared the article. Quick thread on what I wrote back (first disclosing that I advise @BEFOREBrands)...