Re: my last boost of @patientled
Really loved Hannah's point that #LongCovid is not mysterious & unknown....whenever you read or hear that, replace it with "complex, devastating and increasingly well-understood as an incurable neuro-immune disorder."
Really loved Hannah's point that #LongCovid is not mysterious & unknown....whenever you read or hear that, replace it with "complex, devastating and increasingly well-understood as an incurable neuro-immune disorder."
August 18, 2025 at 10:29 PM
Re: my last boost of @patientled
Really loved Hannah's point that #LongCovid is not mysterious & unknown....whenever you read or hear that, replace it with "complex, devastating and increasingly well-understood as an incurable neuro-immune disorder."
Really loved Hannah's point that #LongCovid is not mysterious & unknown....whenever you read or hear that, replace it with "complex, devastating and increasingly well-understood as an incurable neuro-immune disorder."
Welcome UK’s patientled HFcharity #BeatHF @carysbarton.bsky.social @poppybrooks.bsky.social @asanakpan.bsky.social @robmentz.bsky.social @dranulala.bsky.social @drmarthagulati.bsky.social @jimjanuzzi.bsky.social @shelleyzieroth.bsky.social @anastasiasmihaili.bsky.social @hancardiomd.bsky.social
As interest in our 60-minute BEAT to TREAT protocol grows, we thought we'd share an explainer video of the pathway. We take innovation seriously and make it happen.
#BeatHF #HeartFailure
vimeo.com/1023895754
#BeatHF #HeartFailure
vimeo.com/1023895754
BEAT to TREAT in 60 minutes
As interest in our 60-minute BEAT to TREAT protocol grows, we thought we'd share an explainer video of the pathway. We take innovation seriously and make it…
vimeo.com
November 19, 2024 at 5:23 PM
FYI- @patientled is live tweeting the Polybio conference on #LongCOVID today on X:
x.com/patientled/s...
PolyBio conference schedule here: polybio.org/fall-2024-sy...
#Medsky 😷🛟🧪 #IDsky
@ahandvanish.bsky.social
x.com/patientled/s...
PolyBio conference schedule here: polybio.org/fall-2024-sy...
#Medsky 😷🛟🧪 #IDsky
@ahandvanish.bsky.social
November 8, 2024 at 7:21 PM
FYI- @patientled is live tweeting the Polybio conference on #LongCOVID today on X:
x.com/patientled/s...
PolyBio conference schedule here: polybio.org/fall-2024-sy...
#Medsky 😷🛟🧪 #IDsky
@ahandvanish.bsky.social
x.com/patientled/s...
PolyBio conference schedule here: polybio.org/fall-2024-sy...
#Medsky 😷🛟🧪 #IDsky
@ahandvanish.bsky.social
From @onelife_livedwell on IG: The criteria took thirty years to catch up to what patients already knew. This means if you’ve ever walked into an appointment knowing something was wrong and walked out feeling unheard, you might just have been ahead of the science.💛 #mecfs #spoonie #patientled
1/
1/
April 17, 2026 at 4:46 PM
From @onelife_livedwell on IG: The criteria took thirty years to catch up to what patients already knew. This means if you’ve ever walked into an appointment knowing something was wrong and walked out feeling unheard, you might just have been ahead of the science.💛 #mecfs #spoonie #patientled
1/
1/
I know it's That Place, but if you weren't able to tune in to today's #long COVID hearings, @patientled.bsky.social live tweeted it. (Wish they were active here!)
Episky medsky public health
Episky medsky public health
Tweet by @patientled
twitter.com
January 19, 2024 at 4:08 AM
I know it's That Place, but if you weren't able to tune in to today's #long COVID hearings, @patientled.bsky.social live tweeted it. (Wish they were active here!)
Episky medsky public health
Episky medsky public health
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)
In which I reach out to @hankgreen.bsky.social via his favored medium, trying to keep it under 60s while inadvertently relying heavily on my hands to hold my head up jaja. (I am back in horizontal mode now 🌸). Have you talked to @openmedf.bsky.social @polybiorf.bsky.social, Hank? #ME #LongCovid
November 19, 2024 at 5:41 PM
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)
#MEAwareness
#MillionsMissing
#DisabilitySOS
#WorldMEDay
#GreatestMEdicalScandal
@meactnet.bsky.social
@thesicktimes.bsky.social
@berlin-buyers-club.bsky.social
@notjustfatigue.bsky.social
@johnvsjonvsme.bsky.social
@openmedf.bsky.social
@patientled.bsky.social
@polybiorf.bsky.social
8/
#MillionsMissing
#DisabilitySOS
#WorldMEDay
#GreatestMEdicalScandal
@meactnet.bsky.social
@thesicktimes.bsky.social
@berlin-buyers-club.bsky.social
@notjustfatigue.bsky.social
@johnvsjonvsme.bsky.social
@openmedf.bsky.social
@patientled.bsky.social
@polybiorf.bsky.social
8/
May 11, 2025 at 7:26 PM
Thread of posts @patientled.bsky.social made summarising the Fall 2024 PolyBio Symposium on Long COVID Research (long!) (posts #1, 70-167; 2-69 may only be seen on X: I can’t get threadunroll to pick them)
threadreaderapp.com/thread/18549...
#LongCovid #PASC #PwLC
threadreaderapp.com/thread/18549...
#LongCovid #PASC #PwLC
Thread by @patientled on Thread Reader App
@patientled: Good morning! The @polybioRF 2024 Fall Symposium is kicking off shortly, and we will be live tweeting the entire event! Follow along on this 🧵 1/ Some details on new interventional trial ...
threadreaderapp.com
November 10, 2024 at 12:51 PM
Thread of posts @patientled.bsky.social made summarising the Fall 2024 PolyBio Symposium on Long COVID Research (long!) (posts #1, 70-167; 2-69 may only be seen on X: I can’t get threadunroll to pick them)
threadreaderapp.com/thread/18549...
#LongCovid #PASC #PwLC
threadreaderapp.com/thread/18549...
#LongCovid #PASC #PwLC
#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
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
March 1, 2025 at 11:09 PM
#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
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
What does LONG COVID affect in your life? PLRC advocates for the government to step-up for longhaulers ✨ What would you like to see improved?
#longcovid #longhauler @patientled longcovidtheanswers.com #ltd
#longcovid #longhauler @patientled longcovidtheanswers.com #ltd
December 28, 2024 at 5:48 PM
What does LONG COVID affect in your life? PLRC advocates for the government to step-up for longhaulers ✨ What would you like to see improved?
#longcovid #longhauler @patientled longcovidtheanswers.com #ltd
#longcovid #longhauler @patientled longcovidtheanswers.com #ltd
Big news from @patientled.bsky.social today!!!
"we are thrilled to see the introduction of The Long COVID Research Moonshot Act by Senator Bernie Sanders..."
Details 👇
threadreaderapp.com/thread/18194...
#Covid #LongCovid #Funding #Research #Treatment #Government
"we are thrilled to see the introduction of The Long COVID Research Moonshot Act by Senator Bernie Sanders..."
Details 👇
threadreaderapp.com/thread/18194...
#Covid #LongCovid #Funding #Research #Treatment #Government
Thread by @patientled on Thread Reader App
@patientled: Today, we are thrilled to see the introduction of The Long COVID Research Moonshot Act by Senator Bernie Sanders (@SenSanders), co-sponsored by Senators @SenTimKaine, @SenDuckworth, @SenM...
threadreaderapp.com
August 2, 2024 at 7:28 PM
Big news from @patientled.bsky.social today!!!
"we are thrilled to see the introduction of The Long COVID Research Moonshot Act by Senator Bernie Sanders..."
Details 👇
threadreaderapp.com/thread/18194...
#Covid #LongCovid #Funding #Research #Treatment #Government
"we are thrilled to see the introduction of The Long COVID Research Moonshot Act by Senator Bernie Sanders..."
Details 👇
threadreaderapp.com/thread/18194...
#Covid #LongCovid #Funding #Research #Treatment #Government
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
Join us on September 16 for 24 Hours to Save AIDS Research! Speakers include Allison Agwu, Monica Gandhi, Luke Davis, Loreen Willenberg and so many more! Register bit.ly/45U1keO and join us on YouTube bit.ly/45Qftts. #HIV #saveAIDSresearch #HIVresearch
September 10, 2025 at 8:42 PM
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
I am so excited to see the first few members of the #Renegade50 get through their testing & prep, walking towards the acute phase of the protocol already seeing improvements. #patientled #communitydriven #sciencebased #individualized WE are @remissionbiome.bsky.social
October 6, 2023 at 2:13 AM
I am so excited to see the first few members of the #Renegade50 get through their testing & prep, walking towards the acute phase of the protocol already seeing improvements. #patientled #communitydriven #sciencebased #individualized WE are @remissionbiome.bsky.social
🔬 Une nouvelle étude de @patientled montre que les réinfections au
#COVID-19 augmentent considérablement le risque de développer un #CovidLong
#ApresJ20
#COVID-19 augmentent considérablement le risque de développer un #CovidLong
#ApresJ20
September 30, 2024 at 6:48 AM
🔬 Une nouvelle étude de @patientled montre que les réinfections au
#COVID-19 augmentent considérablement le risque de développer un #CovidLong
#ApresJ20
#COVID-19 augmentent considérablement le risque de développer un #CovidLong
#ApresJ20
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
November 29, 2024 at 6:42 AM
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
From @patientled.bsky.social on Twitter:
"New collaborative paper out! The paper looks at rates of #LongCovid in those with long-term disabilities.
Of people who got COVID, 40.6% of people with..."
threadreaderapp.com/thread/18296...
#LongCovid #ChronicIllness
"New collaborative paper out! The paper looks at rates of #LongCovid in those with long-term disabilities.
Of people who got COVID, 40.6% of people with..."
threadreaderapp.com/thread/18296...
#LongCovid #ChronicIllness
Thread by @patientled on Thread Reader App
@patientled: New collaborative paper out! The paper looks at rates of #LongCovid in those with long-term disabilities. Of people who got COVID, 40.6% of people with pre-existing disabilities got Long ...
threadreaderapp.com
August 30, 2024 at 11:14 PM
From @patientled.bsky.social on Twitter:
"New collaborative paper out! The paper looks at rates of #LongCovid in those with long-term disabilities.
Of people who got COVID, 40.6% of people with..."
threadreaderapp.com/thread/18296...
#LongCovid #ChronicIllness
"New collaborative paper out! The paper looks at rates of #LongCovid in those with long-term disabilities.
Of people who got COVID, 40.6% of people with..."
threadreaderapp.com/thread/18296...
#LongCovid #ChronicIllness
Are you a #clinician? Follow us here for #protocol updates, #webinars, and more!
Renegaderesearch.co
Renegaderesearch.co
April 22, 2025 at 1:52 PM
“Medscape refused to mention my supplements grift from my many retracted publications, so you’ll have to find it on my substack”
#QuackMcCullough
#QuackMcCullough
January 22, 2025 at 10:41 PM
“Medscape refused to mention my supplements grift from my many retracted publications, so you’ll have to find it on my substack”
#QuackMcCullough
#QuackMcCullough
At AAI's first-ever congressional briefing, Lisa McCorkell, co-founder of the Patient-Led Research Collaborative (PLRC) @patientled, spoke about the reality of Long COVID as an often invisible and episodic disability. Learn more: ow.ly/y7aU50V8ley.
#AAInews #AAIadvocacy
#AAInews #AAIadvocacy
Long COVID: An Often Invisible Disability - AAI News
Lisa McCorkell sheds light on the reality of Long COVID as an often invisible and episodic disability—one that disrupts millions of lives.
ow.ly
February 28, 2025 at 3:29 PM
At AAI's first-ever congressional briefing, Lisa McCorkell, co-founder of the Patient-Led Research Collaborative (PLRC) @patientled, spoke about the reality of Long COVID as an often invisible and episodic disability. Learn more: ow.ly/y7aU50V8ley.
#AAInews #AAIadvocacy
#AAInews #AAIadvocacy
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
Increasing awareness about #chronic #disease management 💙
Read more... bit.ly/40xRgph
#IWD2025 #research #care #genderbias #medX #clinician #patientled #IWD #AccelerateAction #womensday
March 6, 2025 at 11:39 PM
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
Increasing awareness about #chronic #disease management 💙
Read more... bit.ly/40xRgph
#IWD2025 #research #care #genderbias #medX #clinician #patientled #IWD #AccelerateAction #womensday
Hello @susannahrfox.bsky.social - good to see you here - I loved your book Rebel Health! #patientled
November 29, 2024 at 8:50 PM
Hello @susannahrfox.bsky.social - good to see you here - I loved your book Rebel Health! #patientled
Important 🧵 by @PatientLed outlining key findings from their latest research on the "impact of COVID-19 reinfections on both people with and without #LongCovid."
TLDR: "Overall, the odds of Long COVID increase with reinfections."
threadreaderapp.com/thread/18387...
TLDR: "Overall, the odds of Long COVID increase with reinfections."
threadreaderapp.com/thread/18387...
Thread by @patientled on Thread Reader App
@patientled: We are thrilled to release a new preprint on reinfections today! This paper details the impact of COVID-19 reinfections on both people with and without #LongCovid. Overall, the odds of Lo...
threadreaderapp.com
September 25, 2024 at 12:55 PM
Important 🧵 by @PatientLed outlining key findings from their latest research on the "impact of COVID-19 reinfections on both people with and without #LongCovid."
TLDR: "Overall, the odds of Long COVID increase with reinfections."
threadreaderapp.com/thread/18387...
TLDR: "Overall, the odds of Long COVID increase with reinfections."
threadreaderapp.com/thread/18387...
Today is Long Covid Awareness Day
Learn more about long covid from Patient Led Research here: patientresearchcovid19.com
They have a list of papers etc here: linktr.ee/patientled
#COVIDIsNotOver #LongCOVID
Learn more about long covid from Patient Led Research here: patientresearchcovid19.com
They have a list of papers etc here: linktr.ee/patientled
#COVIDIsNotOver #LongCOVID
March 15, 2024 at 3:09 PM
Today is Long Covid Awareness Day
Learn more about long covid from Patient Led Research here: patientresearchcovid19.com
They have a list of papers etc here: linktr.ee/patientled
#COVIDIsNotOver #LongCOVID
Learn more about long covid from Patient Led Research here: patientresearchcovid19.com
They have a list of papers etc here: linktr.ee/patientled
#COVIDIsNotOver #LongCOVID