#patientled — Public Fediverse posts

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

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

#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

#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

Calling all #Patients #PatientAdvocates #PatientExperts, family members, care givers, #PatientOrganisations and group leaders

PiCC United is coming in October, find out more here: https://linkedin.com/feed/update/urn:li:activity:7241813432818089986 #patients #PatientExperts #Collaboration #Involvement #PatientLed #CommunityEngagement

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

Email from #MEAction:

"We are less than a month away from launching #MillionsMissing 2024, and we are thrilled at the success we’re already seeing with the campaign!

We know the impact of #TeachMETreatME will be HUGE with thousands more clinicians across the country being educated on how to diagnose and treat the ME. Some of these clinicians will become the specialists we so desperately need."

Full email -

https://mailchi.mp/meaction/teachmetreatme-payoff-will-be-huge

@mecfs

#MEcfs #LongCovid #MedEd #MedMastodon #PatientLed

Email from #MEAction:

"We are less than a month away from launching #MillionsMissing 2024, and we are thrilled at the success we’re already seeing with the campaign!

We know the impact of #TeachMETreatME will be HUGE with thousands more clinicians across the country being educated on how to diagnose and treat the ME. Some of these clinicians will become the specialists we so desperately need."

Full email -

https://mailchi.mp/meaction/teachmetreatme-payoff-will-be-huge

@mecfs

#MEcfs #LongCovid #MedEd #MedMastodon #PatientLed

Jaime Seltzer of #MEAction gave her first "Teach M.E., Treat M.E." talk yesterday, part of a campaign to educate health care workers about ME/CFS and Long Covid.

Lots more talks scheduled for May and June.

This whole initiative is led by people who have ME/CFS and Long Covid.

Link: https://bsky.app/profile/exceedhergrasp1.bsky.social/post/3kpwzjiiqcl2l

[New link added - the old thread on Bluesky was deleted]

#MEcfs #LongCovid #MillionsMissing #MedEd #MedMastodon #PatientLed

Jaime Seltzer of #MEAction gave her first "Teach M.E., Treat M.E." talk yesterday, part of a campaign to educate health care workers about ME/CFS and Long Covid.

Lots more talks scheduled for May and June.

This whole initiative is led by people who have ME/CFS and Long Covid.

Link: https://bsky.app/profile/exceedhergrasp1.bsky.social/post/3kpwzjiiqcl2l

[New link added - the old thread on Bluesky was deleted]

#MEcfs #LongCovid #MillionsMissing #MedEd #MedMastodon #PatientLed

From New York Amsterdam News:

"The continuing fight for Long COVID and Myalgic Encephalomyelitis patients"

"Billy Hanlon, who has been living with ME/CFS since 2017, spoke with the Amsterdam News in a Q&A about Long COVID, ME/CFS, and ongoing advocacy efforts. He is the director of advocacy and outreach for the Minnesota ME/CFS [Myalgic encephalomyelitis/chronic fatigue syndrome] Alliance…"

https://amsterdamnews.com/news/2024/01/11/the-continuing-fight-for-long-covid/

@longcovid @mecfs

#COVID #LongCovid #MEcfs #Advocacy #PatientLed

From New York Amsterdam News:

"The continuing fight for Long COVID and Myalgic Encephalomyelitis patients"

"Billy Hanlon, who has been living with ME/CFS since 2017, spoke with the Amsterdam News in a Q&A about Long COVID, ME/CFS, and ongoing advocacy efforts. He is the director of advocacy and outreach for the Minnesota ME/CFS [Myalgic encephalomyelitis/chronic fatigue syndrome] Alliance…"

https://amsterdamnews.com/news/2024/01/11/the-continuing-fight-for-long-covid/

@longcovid @mecfs

#COVID #LongCovid #MEcfs #Advocacy #PatientLed

I saw three patient activists (listed as "Lived Experience Speaker") on the agenda - Vox Jo Hsu, Ashanti Daniel, and Chimére Sweeney.

I recognize those names from different events but I think several spoke at the #MEAction demonstration in DC on May 12:

https://millionsmissing.org/dc-protest/

(Quick skim, so I may have missed some names! And I think one speaker was still TBD)

@mecfs @longcovid

#LongCovid #MEcfs #PatientLed #Research #NIH

I saw three patient activists (listed as "Lived Experience Speaker") on the agenda - Vox Jo Hsu, Ashanti Daniel, and Chimére Sweeney.

I recognize those names from different events but I think several spoke at the #MEAction demonstration in DC on May 12:

https://millionsmissing.org/dc-protest/

(Quick skim, so I may have missed some names! And I think one speaker was still TBD)

@mecfs @longcovid

#LongCovid #MEcfs #PatientLed #Research #NIH

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

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

#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

"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

"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 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 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

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

#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

#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!

@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!