#patientled — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #patientled, aggregated by home.social.
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2026-1-7 Worst POTS day ever
https://www.illmarks.com/2026-1-7-worst-pots-day-ever/
#anatomy #art #bodyHorror #bodyMapping #bodyhorror #cfs #chronicIllness #CovidIsntOver #Dysautonomia #FediArt #illustration #ink #longCovid #longcovid #mastoart #me #mecfs #medart #medicalArt #MillionsMissing #Patient #PatientLed #POTS #potsie #publicHealth #pwLC #pwme #SciArt #SciComms
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#SalamonSMD on X wrote:
Calling #MedTwitter and #LongCOVID, #PEM & #MECFS circles:
I am compiling evidence against graded exercise therapy. Please share your favorite papers in replies.
#PatientAdvocacy #BelievePatients #PacingNotPushing #PatientSafety #LongCovidAwareness #pwLC #PatientLed
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Exiting News!
In October, we’re launching PiCC United (Patient Involvement and Collaboration Community), a global community aimed at enhancing healthcare partnerships. Whether you identify as a patient, care partner, family member, or advocate, stay tuned for details on a community with a difference.
PiCC United will simplify how you get involved helping you to feel in control.
Follow us for updates
#PiCCUnited #PatientInvolvement #PatientEngagement #PatientLed #Community
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"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."
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"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."
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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
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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
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@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!