Rachel

long COVID patient and advocate | she/her pronouns | @patientled

[Rachel @rach_r0bles]

Incredibly honored to be a part of this project. It's coming to fruition!!

[Sen. Bernie Sanders @SenSanders]

Right now, 98 MILLION people on the East Coast are under air quality alerts from Canadian fires and, last night, NYC had the worst air quality in the world. Climate change makes wildfires more frequent and widespread. If we do nothing, this is our new reality. It's time to act.

[Hannah Davis @ahandvanish]

Enough is enough. Allies: please send an email to one of these @UCSFMedicine folks about Prasad’s continued mocking of patients.

It’s completely unreasonable not to know basic mechanisms of post-viral illness in 2023, let alone be allowed to continue to cause harm. #LongCovid

[Heather Hogan @theheatherhogan]

The Long Covid Survival Guide is out today! I'm so honored and proud to be part of this brilliant, resilient, compassionate, powerful group of people who have come together to share what we all wish we knew when we first got sick. #LongCovid

[Rachel @rach_r0bles]

Doing Harm was one of the first books I read once my brain fog started to lift, and it changed the way I viewed medicine / got me fired UP about medical gaslighting. It's an honor seeing the author recognize a book I contributed to about that very topic. Thank you, @mayadusenbery

[mayadusenbery @mayadusenbery]

Happy pub day to the #LongCovid Survival Guide! Enter a giveaway to get a copy (and a copy of my book!) and join our panel @itsbodypolitic on Thursday: https://t.co/olcZOQPmeA @fi_lowenstein

[Putrino Lab @PutrinoLab]

Many folks have tagged me in the @ManvBrain article about #LongCOVID and I have just been so swamped that I haven't had a minute to respond, but I've retweeted some stuff by @meghanor and @sunsopeningband that say a lot of things that I wanted to say. I'll say a few more 🧵1/

[Radley Balko @radleybalko]

Fearmongering works:

OK violent crime rate: 458 per 100K
NY violent crime rate: 364 per 100K

OK murder rate: 7.25
NY murder rate: 4.11

% of Oklahomans who say crime is most urgent issue: 5
% of New Yorkers: 28

[BODY POLITIC @itsbodypolitic]

An update from our Board about our current situation & an ask for our community: to be blunt, our financial situation is dire.
We estimate Body Politic, including our Slack support group, will cease to exist by early 2023 without funding (goal: $500k) https://t.co/IH260glR2t
🧵1/

[Putrino Lab @PutrinoLab]

I am thrilled to share that the incredible @resiapretorius is in-house teaching us to look for microclots and platelet pathology in folks with #LongCovid!! Watch this space, but massive gratitude to @VitalikButerin, @polybioRF and Balvi for making this possible! 🫶🏼#teamclots

[Putrino Lab @PutrinoLab]

Proud to have the #LongCovid Survival Guide sitting in the @ARC_Mount_Sinai waiting area. Gratitude to my fellow contributers, @fi_lowenstein @LisaAMcCorkell @chiluvs1 @dunkindona @karlitaliliana @rach_r0bles, @VirusesImmunity,
@WildNycgirl and so many extraordinary others. 1/

[Rachel @rach_r0bles]

So excited to be a part of these upcoming events! I'll be reading an excerpt at the virtual #LongCovid Survival Guide book launch

[Rachel @rach_r0bles]

We're celebrating you from our couches as well. Thank you for everything you do @ahandvanish

[Hannah Davis @ahandvanish]

I didn’t go to the #time100next gala tonight for covid safety reasons, but dressed up anyway (my partner got me a nice dinner 💕)

But feeling bummed about it, and bummed that high risk people are excluded from participating in society, seemingly indefinitely…

#LongCovid

[Ravi Veriah Jacques @RaviHVJ]

The decades-long neglect of post-viral illnesses is the biggest medical scandal you've never heard of. It's a story of medical sexism, psychologists working hand-in-hand with insurance companies, and very sick patients fighting for their most basic rights.

[Rep. Don Beyer @RepDonBeyer]

A huge number of Americans are suffering from the effects of Long Covid. This problem and the people it affects get far less attention than they deserve. I am working with colleagues in both parties to push House leaders for increased support for people suffering from Long Covid:

[Padma Priya D @priyakamal]

she was prescribed anti-anxiety meds prior to this & constantly invalidated until she self-advocated armed with info on post-covid issues. PE can be fatal if not found and treated on time. She is now on a course of blood thinners.

[Padma Priya D @priyakamal]

Just got a call from a 23yo who has been experiencing post covid symptoms since Jan and wasn’t getting help. her symptoms - chest pain, breathlessness among others only worsened over last few days. I advised her to go meet a pulmonologist & turns out she had a Pulmonary embolism.

[Rachel @rach_r0bles]

If you're in NYC and have Long COVID, please consider sharing your story. I'll be testifying via Zoom!

[Council Member Tiffany Cabán (D22) @CabanD22]

TOMORROW @ 1pm:

My committee is holding a hearing on The Gendered Impact of #LongCOVID.

Register to testify: https://t.co/g4uhcQigjk
Tune in: https://t.co/pOWa2S4bj7

[Cat Fraser @catsocialintel]

Remember the #HIV #AIDS ACT-UP protests in the 80’s? Today it’s the #MECFS #MyalgicEncephalomyelitis and #LongCovid communities that are fighting to be heard and taken seriously in Washington. @POTUS declare this a public health emergency 🆘