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
#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/
#meaction #mecfs #LongCovid #resources #patientled
"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"
#MEcfs #LongCovid #PwME #PwLC #PatientLed #Disability #ChronicIllness #HealthCare @mecfs
#mecfs #LongCovid #pwme #pwlc #patientled #disability #chronicillness #Healthcare
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
#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/
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
#weekendreads #mecfs #LongCovid #PostViralIllness #epsteinbarr #amreading #books #meaction #ryanprior #covid #COVID19 #nih #patientled #lyme #disability #NEISvoid #PostCovid #epidemics #patientscientists #pwme #PEM
@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!
#PLRC #LongCovid #researchfunding #patientled