Ylan Roy

Small but mighty 💪🏽 #earlyeducator, visual artist, health enthusiast advocating for #LongCovid awareness. No longer #essentialworkers, speak truth to power!🦋

[Ylan Roy @YlanRoy]

@chydorina Ah yes. And though my weight /eating has improved - I still spend most of the day reclined and use a power wheelchair in order to cook. Only have “energy “ to cook once or twice a week in the morning. Freeze everything. So yes- I remain quite sick. Will focus on nutrition. Thx!

[Ylan Roy @YlanRoy]

@chydorina Maybe I’ve healed my leaky gut. Sodium Butyrate, Custom Pro- 5 Bifo blend and D-lactate free blend for 6-8 months. MCAS stabilized also. Gained 22 lbs ( 90-112). HMO, zinc carnosine. How to know when to stop probiotics?

[Ylan Roy @YlanRoy]

@NikkiSchultek I’m diagnosed with Long Covid but also have Babesia- just confirmed through Igenex. I’ve had it before. What treatments are available?

[Kathryn @kadamssl]

You should really just read it yourself.

Seriously.

I’m pretty sure my cat lost three lives to my cheering and fist pumping.

Did I mention? SHARE WIDELY.

You’ve been waiting for this one 👇

https://t.co/X0GYLHtWI1

[Billy Hanlon @bhanlon15]

Medscape: “Long Covid Linked to Brain Changes, Cognitive Decline”

https://t.co/U5hC5o82UI

[Winter @PunkyBrewstuh]

It's finally done.

I built this for us because until now, there's *nothing* for us. And because our damaged brains shouldn't be the reason we're losing the fight for our health.

I wanted a way for us to see the patterns our brains are too tired to track, like realizing a crash today was actually triggered two days ago, or finally having the information handy when we need it for a prior authorization, or solid, ready proof for a disability appeal.

We are constantly told we're "over-focused on symptoms," but this is about turning that data into a defense. I want us to walk into those 15-minute appointments and change the conversation from being labeled to being taken seriously.

We deserve a system that remembers for us so we can focus on just surviving until there's a cure. 1/2 🧵

[Sonya @sonya_lala_]

Five years ago today, @NewsHour featured @Rivkatweets’ work, including images from my reality. Still relevant today. #MEcfs #LongCOVID #NationalAdvocacy

[Melissa Mazur @PhillyPhile215]

Continually in awe of this community! HUNDREDS in 2 days on short notice. Y’all are rockstars 🙌 Keep sharing the info about this campaign was other community members, friends, and family. Let’s keep reminding Senators we need funding NOW 🙏

[Melissa Mazur @PhillyPhile215]

📲CALL your Senators TODAY to remind them we are still here and need #FundLongCOVID in FY27 appropriations. This Senate Call tool makes its easy: https://t.co/8xfZWZ8HLG Leave a msg, if needed.🧵👇has more info about this @LCCampaign advocacy push

[Meighan Stone @meighanstone]

📣#LongCOVID Community📣 Will you call & email your Senators to sign the #FundLongCOVID "Dear Colleague" FY27 Appropriations letter by THIS FRIDAY? @LCCampaign set up free, easy tools because we have TWO DAYS to push for $200 million+ in research & care. So why take action? 1/x

[Ylan Roy @YlanRoy]

@royalhansen 💙 beautiful- he’s talented.

[Long COVID Campaign @LCCampaign]

📢#LongCOVID Community📢 Can you help advocate for $200m+ in funding THIS WEEK? Senators Markey, Kaine & Duckworth are again championing FY27 "Dear Colleague" #FundLongCOVID letter. If LCC gets an easy email & call tool up, would you ask your Senators to sign by THIS FRIDAY? 1/x

[Billy Hanlon @bhanlon15]

VT Digger: "Vermonters with long Covid look to senators for reform"

'Though millions of Americans have reported living with long Covid, there are no clear-cut diagnostic tests for the illness or widely accepted treatments'

https://t.co/WGbz1av8kF

[Congresswoman Valerie Foushee @ValerieFoushee]

I introduced a resolution to recognize March as Long COVID Awareness Month to raise awareness about the millions of people living with persisting symptoms after a COVID-19 infection.

These symptoms can be debilitating. Congress must step up and properly support research into long COVID.

https://t.co/bbEpbhH1PV

[CoRE at Mount Sinai @CoRESinai]

Excited to announce the decentralization of our lumbrokinase trial @polybioRF, now open it to patients with #LongCOVID, #MECFS, and #chronicLyme throughout the cont. US. You will receive the drug by mail & complete VIRTUAL study visits. Enroll at [email protected]!

[Ylan Roy @YlanRoy]

Testified today before the VT Senate Health and Welfare Committee. Long COVID is prevalent- as common as childhood asthma. Prevention is possible- reducing transmission should be a public health goal. We did this - 2020-21, in my toddler classroom. #LongCOVIDAwareness

[Billy Hanlon @bhanlon15]

Superb job to the Vermont team that was invited to testify (3/27) for the VT Senate Health and Welfare Committee- on the topic of Long Covid

Hats off to @YlanRoy, Dr. Katherine Menson, Cristine Selvidio and all who helped contribute

Appreciate you!

https://t.co/Xz4CHYqVF0

[Ylan Roy @YlanRoy]

@Dave_it_up @all_brains Thank you! I will be testifying on Friday as well- Senate Health and Welfare Committee. Wish me clarity and a short (rather than long/dreadful) post testimony crash.

[Ylan Roy @YlanRoy]

Vermont has just passed a resolution recognizing Long Covid Awareness Month/ Day. This is the time to reach out to legislators- to create the change we wish to see. Looking for Vermonters w/ Long Covid. @Dave_it_up (in case you know of folks). #Vermont #LongCOVIDAwareness

[Mike Hoerger, PhD MSCR MBA @michael_hoerger]

Meighan is a force. Watch this video and follower her.

Strategically, getting the CDMRP to fund #LongCOVID research would be among the most tactically important wins for moving the dial toward a productive research path. Find that pressure point, and act!

[Ylan Roy @YlanRoy]

@meighanstone @LCCampaign Your monumental efforts inspire so many to action. Thank you for leadership. 💙