Sarah dreams of beansNov 20, 2024

Cool #LongCovid talk for clinicians tomorrow-- #HannahDavis and/or #LisaMcCorkell from #PLRC presenting at WHO with research about diagnosis and treatment.

https://www.who.int/news-room/events/detail/2024/11/20/default-calendar/post-covid-19-condition-science-research-and-policy

Post COVID-19 condition: Science, Research and Policy

The Clinical Management and Operations Unit, WHO Health Emergencies Program supports a webinar program on post COVID-19 condition (also referred to as Long Covid). The series aims to build the capacity of clinicians globally to identify, diagnose, and treat people with post COVID-19 condition. This webinar will provide an update on global scenario of research on post COVID-19 condition, what we have learnt so far, and initiatives to support patient care with long COVID.

RobotistryOct 5, 2024

New paper out in Cell @cellpress from #PLRC calling for #LongCovid research!

From: @patientled
https://mastodon.social/@patientled/113251089261217096

@longcovid

RobotistryOct 4, 2024

Thread on the new Patient-Led Research Collaborative paper on reinfections!

From: @patientled
https://mastodon.social/@patientled@mastodon.social/113249911218510249

@longcovid

#LongCovid #PLRC #MedMastodon

Sarah dreams of beansApr 1, 2024

How patient-led research could speed up medical innovation, with examples from #LongCovid and #mecfs, including #SolveME #PLRC and #MEAction

Of course they mention the speed of patient-led research, but I also love to see the recognition that patients help design better experiments and especially better controls. It's hard to control for dynamic conditions and lack of diagnostic lab tests, but patients have expertise.

https://www.sciencenews.org/article/patient-led-research-health-medicine

How patient-led research could speed up medical innovation

People with long COVID, ME/CFS and other chronic conditions are taking up science to find symptom relief and inspire new directions for professional scientists.

Science News
RobotistryNov 23, 2022

@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!

Press Releases – Patient Led Research Collaborative

Show threadRobotistryNov 21, 2022

@LongCovidAdvoc @longcovid Hi, I'm a roboticist with #LongCovid and I support LC research at #PLRC with the spoons I have left after working part time. I'm trying to establish a work-life balance that accommodates LC limitations - mainly through very strict pacing. Without #DisabilityAccomodations it wouldn't be possible at all.

And I'm interested in doing some rigorous research establishing titration & effectiveness of cognitive and emotional pacing for PESE management!

RobotistryNov 8, 2022

#Introduction - In my day job, I'm a researcher for the US Naval Research Laboratory (NRL) and the Director of NRL's Laboratory for Autonomous Systems Research (views my own and not those of the DoD; posts don't constitute endorsement). I'm particularly interested in developing a #ScienceOfRobotics that enables prediction of operational performance.

Outside of work hours, I'm a member of the Patient-Led Research Collaborative #PLRC, supporting #LongCovid research as my symptoms allow.