Instagram story viewer> @patientled> Tagged

patientled

@patientled

7.6K

followers

1605

following

We are a self-organized group of #LongCOVID patients and patients of associated illnesses such as #MECFS and #POTS working on patient-led research.

POSTS STORIES REELS TAGGED

Welcome to our first #MedEdMonday! We are excited to introduce the first video in a four-part series focusing on post-exertional malaise and pacing created by @patientled Research Collaborative and #MEAction. https://ow.ly/Neh750Tjcro Link also in our bio!

Our first episode focuses on understanding post-exertional malaise and features an excellent presentation with Dr. Brayden Yellman from @bateman_horne_center with a follow-up by Chimére L. Sweeney @chimereladawn. Dr Yellman is a board-certified physician in internal medicine and rheumatology at Bateman Horne Center and also serves on the Scientific and Medical Board for #MEAction. This presentation focuses on the importance of pacing and PEM (post-exertional malaise). Pacing is a crucial intervention for ME and Long COVID.

Let us know what you think in the comments. Thank you to Dr. Yellman for your time and effort.

#pwME #LongCovid #MECFS #MyalgicEncephalomyelitis #MedEd

Image description: Screenshot from a video showing Dr. Yellman (white man with short hair wearing a tie and sweater) sitting in an office speaking to the camera. Text above: Understanding Post-Exertional Malaise with Dr. Brayden Yellman. Text below: #MedEdMonday Four-part video series created by Patient-led Research Collaborative and #MEAction Screenshot from a video showing Dr. Yellman (white man with short hair wearing a tie and sweater) sitting in an office speaking to the camera. Text above: Understanding Post-Exertional Malaise with Dr. Brayden Yellman. Text below: #MedEdMonday Four-part video series created by Patient-led Research Collaborative and #MEAction

256

8

What could adequate care and precision treatment for Long COVID look like?

Join us for a conversation with a panel of patient advocates & researchers, who will discuss the importance of patient-led research efforts and how that has shaped emerging research on Long COVID.

We need inclusive research that centers patient voices and draws from patient wisdom & experience with Long COVID and associated diseases like ME/CFS. Nothing about us without us!

This panel is hosted by @AAHealthDisability in partnership with @AllofUsResearch. We’re looking forward to hearing from these great panelists – including Jacqueline Luciano, who is a participant in Long COVID Justice’s Listening for the Long Haul project and a member of our new Long COVID Communicators cohort.

“LONG COVID, DISABILITY AND ALL OF US”
⏰ Tues April 30, 2:00-3:30pm ET
🔗 Register: bit.ly/April30-Panel
➕ ASL & CART will be provided, and additional accommodations can be requested.

Panelists:
- Claudia Sherman (Long COVID Moonshot)
- Dr. Monica Verduzco-Gutierrez (UT Health San Antonio)
- Lisa McCorkell (Patient-Led Research Collaborative)
- Jacqueline Luciano (Long COVID Justice)
- Moderated by Ezra Spier (Long COVID Moonshot)

This is the fourth conversation in the 2023-2024 Disability & Health Webinar Series - follow @aahealthdisability for future events & recordings of past webinars.

〰〰〰〰〰

From Pandemics Are Chronic, our statement of commitment to Long COVID justice:

“We center, platform, and resource those with Long COVID, complex chronic illnesses, and other disabilities at the forefront of policy, advocacy, and action related to these issues. . . We recognize that the COVID-19 pandemic and Long COVID have disproportionately impacted already marginalized communities. We call for research justice, community-accountable data, and truly equitable policy based on considerations of race and ethnicity, class, age, immigration status, gender and gender identity, sexuality, religion/ spirituality, culture, family structure, incarceration, housing status, disability, and co-morbidities.”

🖊️ Read the full statement & add your name tiny.cc/pac-2022

〰

🔗 Lynx you-know-where, IDs in comments Aqua, yellow, and purple background with wavy-edged text boxes. Text says: “Long COVID, Disability + All of Us, Tues April 30, 2 pm ET, Zoom. Can we develop precision medicine for Long COVID & associated diseases (LCAD)? Hear from patient advocates & researchers on the importance of inclusive health research to support people living with LCAD. REGISTER: bit.ly/April30-Panel ASL and CART provided, additional accommodations can be requested. Hosted by All of Us Research Program and the American Association on Health & Disability.”

343

6