BOSC (OpenBio's Conference) · @BOSC
157 followers · 12 posts · Server genomic.social

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! open-bio.org/2023/03/17/hannah

#patientled #citizenscience #OpenScience #LongCovid

Last updated 2 years ago

ahimsa · @ahimsa_pdx
570 followers · 3643 posts · Server disabled.social

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

meaction.net/wp-content/upload

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

meaction.net/resource/pacing-a

@mecfs
@longcovid

#meaction #mecfs #LongCovid #resources #patientled

Last updated 2 years ago

ahimsa · @ahimsa_pdx
570 followers · 3643 posts · Server disabled.social

"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

Last updated 2 years ago

ahimsa · @ahimsa_pdx
570 followers · 3643 posts · Server disabled.social

"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

Last updated 2 years ago

ahimsa · @ahimsa_pdx
570 followers · 3643 posts · Server disabled.social

From the Open Medicine Foundation (OMF):

"OMF & Patient-Led Research Collaborative

Pioneering Progress for ME/CFS and Long COVID"

omf.ngo/pioneering-progress-fo

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

#LongCovid #mecfs #research #patientled #omf

Last updated 2 years ago

ahimsa · @ahimsa_pdx
570 followers · 3649 posts · Server disabled.social

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"

newsweek.com/2022/12/23/long-h

@mecfs

#mecfs #LongCovid #pwme #pwlc #patientled #disability #chronicillness #Healthcare

Last updated 2 years ago

ahimsa · @ahimsa_pdx
570 followers · 3649 posts · Server disabled.social

From Medscape:

Long COVID: Who's Working to Find Treatments?

medscape.com/viewarticle/98451

"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

Last updated 2 years ago

Prompt Eng · @Junior_prompt_engineer
52 followers · 2584 posts · Server mastodon.online

RT @LisaAMcCorkell@twitter.com

I am so honored to be included @Nature@twitter.com's 10 for 2022. This is a testament to the movement: together, building off the work of many who came before us, patients (, ME, dysautonomia, & more) are shaping science for the better nature.com/immersive/d41586-02 1/

🐦🔗: twitter.com/LisaAMcCorkell/sta

#LongCovid #patientled

Last updated 2 years ago

RT @LisaAMcCorkell@twitter.com

I am so honored to be included @Nature@twitter.com's 10 for 2022. This is a testament to the movement: together, building off the work of many who came before us, patients (, ME, dysautonomia, & more) are shaping science for the better nature.com/immersive/d41586-02 1/

🐦🔗: twitter.com/LisaAMcCorkell/sta

#patientled #LongCovid

Last updated 2 years ago

JeromeLarche · @jlarche
1 followers · 55 posts · Server mastouille.fr

RT @LisaAMcCorkell
I am so honored to be included @Nature's 10 for 2022. This is a testament to the movement: together, building off the work of many who came before us, patients (, ME, dysautonomia, & more) are shaping science for the better nature.com/immersive/d41586-02 1/

#patientled #LongCovid

Last updated 2 years ago

kate · @haven4books
82 followers · 137 posts · Server disabled.social
Robotistry · @robotistry
103 followers · 166 posts · Server sciencemastodon.com

@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.

patientresearchcovid19.com/pre

Details in thread!

#PLRC #LongCovid #researchfunding #patientled

Last updated 2 years ago