ICYMI, the video of Hannah Wei's @OpenBio/ @BOSC webinar on "“Re-Thinking the Patient’s Role in a Learning Health System" is now available! https://open-bio.org/2023/03/17/hannah-wei-webinar-video-now-available/
#PatientLed #CitizenScience #OpenScience #LongCovid

#MEAction, in partnership with Patient-Led Research Collaborative, has published an updated Clinician’s Pacing Guide:

https://www.meaction.net/wp-content/uploads/2023/02/Pacing-Guide-Clincians.FINAL2_.pdf

This document and other resources are available on the MEAction website here:

https://www.meaction.net/resource/pacing-and-management-guide/

#MEcfs #LongCovid #Resources #PatientLed

@mecfs
@longcovid

"In late 2022, OMF was honored to be awarded with three research grants from Patient Led Research Collaborative (PLRC). These research projects will investigate three key areas: sleep, drug repurposing, and multi-omics of ME/CFS and Long COVID.

These studies will provide further understanding of the complex mechanisms underlying these diseases and may help us identify new treatment options."

#LongCovid #MEcfs #Research #PatientLed #OMF

"Open Medicine Foundation (OMF) is dedicated to finding diagnostic tools, treatments, and a cure for ME/CFS and related multi-system chronic complex diseases (msCCDs).

Our current Long COVID and ME/CFS research is providing us with valuable insights into post-infection disease. We hope to use this knowledge to find solutions for all those affected by these debilitating illnesses."

#LongCovid #MEcfs #Research #PatientLed #OMF

From the Open Medicine Foundation (OMF):

"OMF & Patient-Led Research Collaborative

Pioneering Progress for ME/CFS and Long COVID"

https://www.omf.ngo/pioneering-progress-for-me-cfs-and-long-covid/

I'll post a couple of extracts in this thread.

#LongCovid #MEcfs #Research #PatientLed #OMF

from Newsweek:

Long Haul COVID: Like 'Demon Had Hijacked My Nervous System' Says Author

"former CNN reporter and COVID long hauler Ryan Prior…discusses his chronic fatigue syndrome diagnosis as a teenager, how patients can best advocate for themselves, the importance of patient-led medicine going forward and how Long COVID has catalyzed the disability movement and more"

https://www.newsweek.com/2022/12/23/long-haul-covid-like-demon-had-hijacked-my-nervous-system-says-author-1766502.html

#MEcfs #LongCovid #PwME #PwLC #PatientLed #Disability #ChronicIllness #HealthCare @mecfs

From Medscape:

Long COVID: Who's Working to Find Treatments?

https://www.medscape.com/viewarticle/984510

"Dr Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke, talks with Medscape contributing editor Maggie Fox (@maggiefox) about the goals of the clinical trials being sponsored by the National Institutes of Health."

Video with transcript.

#COVID #COVID19 #LongCovid #NIH #NINDS #Medscape #PatientLed #Research #Treatment

RT @LisaAMcCorkell@twitter.com

I am so honored to be included @Nature@twitter.com's 10 for 2022. This is a testament to the #patientled movement: together, building off the work of many who came before us, patients (#LongCovid, ME, dysautonomia, & more) are shaping science for the better https://www.nature.com/immersive/d41586-022-04185-3/index.html 1/

🐦🔗: https://twitter.com/LisaAMcCorkell/status/1603114394723885056

RT @LisaAMcCorkell@twitter.com

I am so honored to be included @Nature@twitter.com's 10 for 2022. This is a testament to the #patientled movement: together, building off the work of many who came before us, patients (#LongCovid, ME, dysautonomia, & more) are shaping science for the better https://www.nature.com/immersive/d41586-022-04185-3/index.html 1/

🐦🔗: https://twitter.com/LisaAMcCorkell/status/1603114394723885056

RT @LisaAMcCorkell
I am so honored to be included @Nature's 10 for 2022. This is a testament to the #patientled movement: together, building off the work of many who came before us, patients (#LongCovid, ME, dysautonomia, & more) are shaping science for the better https://www.nature.com/immersive/d41586-022-04185-3/index.html 1/

#WeekendReads

I'll be working on these for awhile (reading is tiring), but they're topically interrelated, with Osler's Web focusing on #MECFS history and The Long Haul on #longCOVID. #PostViralIllness is also discussed more broadly to an extent.

#EpsteinBarr #amReading #books #MEAction #RyanPrior #COVID #COVID19 #NIH #PatientLed #lyme #disability #NEISvoid #postCOVID #epidemics #PatientScientists #pwME #PEM

@longcovid @mecfs
@bookstodon

@longcovid
Patient Led Research Collaborative has announced the 9 research projects funded by $4.8m in grants from Balvi. Selected by a panel of patients, we hope they will accelerate progress towards understanding, diagnosis, and eventual treatment of Long COVID and related diseases.

https://patientresearchcovid19.com/press-releases/

#PLRC #LongCovid #ResearchFunding #PatientLed

Details in thread!