#TheNicotineTest #MECFS #LongCovid #PASC #MECFSResearch #MEResearch #LongCovidResearch #PASCResearch #FundMECFS #FundLongCovid #Vielight #RedLightTherapy #Rutin #HRV #HeartRateVariability #PEM #GIP #PostPrandial #MedicalResearch #PatientLed #PatientLedResearch #FundMedicalResearch

#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

Honored to be a part of this! Speaking on Wed 9/17 10am Eastern on #LongCOVID & #HIV research & the vital need for #plhiv, #patientLed & community-led leadership/advocacy! @patientled.bsky.social @longcovidfam.bsky.social @longcovidjustice.org @plhivcaucus.bsky.social #hivresearch #disabilityjustice

Rebel Health Check out this great listen on Audible.com.au. Anyone who has fallen off the conveyer belt of mainstream health care and into the shadowy corners of illness knows what a dark place it is to land. Wher...

I'll be adding my favourite quotes to this thread as I listen. 🎧

📖 Rebel Health: A field guide to the patient-led revolution

⚡️ www.audible.com.au/pd/B0CZ4W7PX... #DisabilityJustice #HealthcareActivism #PatientLed #NEISvoid

If you had the tech, the team, and the freedom—what gap in care would you close first?

We're listening. Your insight might become the next feature in our patient-led health stack.

#DigitalHealth #PatientCentric #HealthcareInnovation #PatientLed #FutureOfHealthcare #HealthEquity #NoRedTape

Welcome! You are invited to join a webinar: PLRF Webinar. After registering, you will receive a confirmation email about joining the webinar. Join us to explore the findings and latest updates from 10 studies funded by the Patient-Led Research Fund — biomedical research projects selected by a panel of patient-researchers with both scientifi...

👀 #PatientLed #MECFS #CovidIsNotOver #COVIDisAirborne #N95sSaveLives #CleanAirNow #LongCovid #LongCovidKids #WeNotMe #TogetherWeCan #ShareTheCare us02web.zoom.us/webinar/regi...

We are collaborating with a patient advocate in the US to coordinate access and gather test results across multiple counties and States. This patient-led effort is a necessary step in understanding the impact of long COVID.

#PatientLed #GlobalHealth #Attomarker

📢 Calling all clinicians, researchers, clinician scientists, MDs, etc!

#medSky #patientled

Frontiers | How a patient-led advocacy organization supports the road to diagnosis and treatment of creatine transporter deficiency

The work done by the Association for Creatine Deficiencies has been life changing for our family. This article outlines how ACD has organized, advocated and pushed forward research for these #rare diseases. #CreatineInfo #rarediseases #advocacy #patientled #diagnosis

#IWD2025 and @womensday logo 2/ #Women are at a higher risk for certain #chronic conditions. However, they often face barriers in accessing the proper diagnostic and therapeutic care. #IWD2025 #research #care #genderbias #medX #clinician #patientled #clinician #IWD #AccelerateAction #womensday

Renegade Research logo and vision/mission... 2/ #Women are at a higher risk for certain #chronic conditions. However, they often face barriers in accessing the proper diagnostic and therapeutic care. #IWD2025 #research #care #genderbias #medX #clinician #patientled #clinician #IWD #AccelerateAction #womensday

2/ #Women are at a higher risk for certain #chronic conditions. However, they often face barriers in accessing the proper diagnostic and therapeutic care.

Read more... bit.ly/40xRgph

#IWD2025 #research #care #genderbias #medX #patientled #clinician #AccelerateAction #womensday #Renegade50

##IWD2025 and @womensday logo 1/ Join @RenegadeResearch.bsky.social in celebrating #InternationalWomensDay2025 on March 8th! 🎉 Increasing awareness about #chronic #disease management 💙 #IWD2025 #research #care #genderbias #medX #clinician #patientled #clinician #IWD #AccelerateAction #womensday

Renegade Research logo and vision... 1/ Join @RenegadeResearch.bsky.social in celebrating #InternationalWomensDay2025 on March 8th! 🎉 Increasing awareness about #chronic #disease management 💙 #IWD2025 #research #care #genderbias #medX #clinician #patientled #clinician #IWD #AccelerateAction #womensday

1/ Join @RenegadeResearch.bsky.social in celebrating #InternationalWomensDay2025 on March 8th! 🎉

Increasing awareness about #chronic #disease management 💙

Read more... bit.ly/40xRgph

#IWD2025 #research #care #genderbias #medX #clinician #patientled #IWD #AccelerateAction #womensday

#Clinician's Roundtable with Tania Dempsey, MD Dr. Dempsey will give a 45-minute lecture on #vector-borne illnesses often seen as co-infections in #MECFS and #LongCovid, followed by a 15-minute Q&A. https://us06web.zoom.us/webinar/register/2117347281730/WN_qDphjDHhQa-OXwLpvxgEAw#/registration #infectious #medtwitter #medX #patientled #nesvoid #pwME

#Clinician's Roundtable with Tania Dempsey, MD on Mar-14

Dr. Dempsey will give a 45-minute lecture on #vector-borne illnesses often seen as co-infections in #MECFS and #LongCovid followed by a 15-minute Q&A.

us06web.zoom.us/webinar/regi...

#infectious #illness #medX #patientled #nesvoid #pwME

✅️ Do you have #MECFS #LongCOVID or other #iaci? Join A Future #Protocol Group! https://www.remissionbiome.org/patients/join-the-protocol ✅️ Are you a #clinician with #patients on the protocol? https://www.remissionbiome.org/clinicians/protocol Questions? Contact @remissionbiome.bsky.social #chronic #patientled #caregiver

✅️ Do you have #MECFS #LongCOVID or other #iaci? Join A Future #Protocol Group! https://www.remissionbiome.org/patients/join-the-protocol ✅️ Are you a #clinician with #patients on the protocol? https://www.remissionbiome.org/clinicians/protocol Questions? Contact @remissionbiome.bsky.social #chronic #patientled #caregiver

✅️ Do you have #MECFS #LongCOVID or other #iaci?

Join A Future #Protocol Group!
www.remissionbiome.org/patients/joi...

✅️ Are you a #clinician with #patients on the protocol?
www.remissionbiome.org/clinicians/p...

Questions? Contact @remissionbiome.bsky.social

#chronic #patientled #caregiver

Hello @susannahrfox.bsky.social - good to see you here - I loved your book Rebel Health! #patientled

Great starter pack from @downing.bsky.social #patientled

go.bsky.app/GLsZaVm

Great starter pack, Scott. Fantastic to see the great @danamlewis.bsky.social and @sarariggare.bsky.social on here. My PhD at Oxford is ‘What happens when patients know more than their doctors about technology’ and focused on closed-loop systems in #T1D #patientled

Dreaming of @hankgreen.bsky.social discussing the science of #LongCovid and #ME with @patientled.bsky.social and @meactnet.bsky.social (and talking about the importance of #patientled research)

Designing and optimizing clinical trials for long COVID Long COVID is a debilitating, multisystemic illness following a SARS-CoV-2 infection whose duration may be indefinite. Over four years into the pandem…

Link to research mentioned in the thread above:

Designing and optimizing clinical trials for long COVID - ScienceDirect
www.sciencedirect.com/science/arti...

#Covid #LongCovid #ClinicalTrial #TrialDesign #PatientLed

Thread by @patientled on Thread Reader App @patientled: We’ve released a new paper on designing & optimizing clinical trials for #LongCOVID! Strong, high-impact trials are critical & most current ones are insufficient. The paper gives guidance...

From @patientled.bsky.social (on Twitter):
"We’ve released a new paper on designing & optimizing clinical trials for #LongCOVID! Strong, high-impact trials are critical & most..."
threadreaderapp.com/thread/18267...

#Covid #LongCovid #ClinicalTrial #TrialDesign #PatientLed