Lisa McCorkell
@lisamccorkell.bsky.social
formerly a patient-led research collaborative co-lead, always a co-founder | MPP | she/her | natures 10 in 2022
Reposted by Lisa McCorkell
lithub.com/remembering-.... read this achingly beautiful piece by @thrasherxy.bsky.social I keep thinking, @sfdirewolf.bsky.social was irreplaceable but she nurtured a whole-ass huge forest (or series of forests). No one can replace her, except for all of us doing the work she nurtured in us.
Remembering Alice Wong: Writer, Advocate, Friend
Though we were in frequent conversation for a decade, I only got to meet my friend Alice Wong in person just once. And when I did, I was a bundle of nerves—and that was before she cussed me out wi…
lithub.com
November 17, 2025 at 9:15 PM
lithub.com/remembering-.... read this achingly beautiful piece by @thrasherxy.bsky.social I keep thinking, @sfdirewolf.bsky.social was irreplaceable but she nurtured a whole-ass huge forest (or series of forests). No one can replace her, except for all of us doing the work she nurtured in us.
Reposted by Lisa McCorkell
Many Long COVID trials have reported negative results in 2024 and 2025. In our Comment for @thelancetinfdis.bsky.social we argue that inadequate outcome measures might have played a role. (1/12)
November 8, 2025 at 12:08 AM
Many Long COVID trials have reported negative results in 2024 and 2025. In our Comment for @thelancetinfdis.bsky.social we argue that inadequate outcome measures might have played a role. (1/12)
Reposted by Lisa McCorkell
The C in Trump’s CFPB stands for Corporate not Consumer. Gift link: www.nytimes.com/2025/05/21/o...
Opinion | Trump Is Turning Our Consumer Watchdog Into a Corporate Protector
www.nytimes.com
May 21, 2025 at 12:38 PM
The C in Trump’s CFPB stands for Corporate not Consumer. Gift link: www.nytimes.com/2025/05/21/o...
Reposted by Lisa McCorkell
Thank you to some amazing colleagues who took time and precious energy to craft this rapid response to the recent @bmj_latest piece. When people try to hijack #LongCOVID, #MECFS and other complex illness as psychosomatic it is important we strike back: www.bmj.com/content/389/... 1/
Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions.
www.bmj.com
May 21, 2025 at 11:07 AM
Thank you to some amazing colleagues who took time and precious energy to craft this rapid response to the recent @bmj_latest piece. When people try to hijack #LongCOVID, #MECFS and other complex illness as psychosomatic it is important we strike back: www.bmj.com/content/389/... 1/
Reposted by Lisa McCorkell
Today @thesicktimes.bsky.social: I did an exit interview with @lisamccorkell.bsky.social, reflecting on her five years at the Patient-Led Research Collaborative.
You can read the transcript or listen on our podcast (thanks to @hashtagjames.bsky.social!!). thesicktimes.org/2025/04/07/l...
You can read the transcript or listen on our podcast (thanks to @hashtagjames.bsky.social!!). thesicktimes.org/2025/04/07/l...
Lisa McCorkell reflects on five years of Long COVID research, and leaving PLRC - The Sick Times
Lisa McCorkell, one of the founders of the Patient-Led Research Collaborative (or PLRC), recently stepped down after five years co-leading the organization. The Sick Times co-founder and managing edit...
thesicktimes.org
April 7, 2025 at 5:28 PM
Today @thesicktimes.bsky.social: I did an exit interview with @lisamccorkell.bsky.social, reflecting on her five years at the Patient-Led Research Collaborative.
You can read the transcript or listen on our podcast (thanks to @hashtagjames.bsky.social!!). thesicktimes.org/2025/04/07/l...
You can read the transcript or listen on our podcast (thanks to @hashtagjames.bsky.social!!). thesicktimes.org/2025/04/07/l...
Reposted by Lisa McCorkell
If you are not disabled:
Please use the occasion of #LongCOVIDAwarenessDay to educate yourself about the ongoing risks of COVID to yourself & those around you.
We're begging you to consider the risks you can pose to others & act accordingly.
There are many great articles, including this one:
1/2
Please use the occasion of #LongCOVIDAwarenessDay to educate yourself about the ongoing risks of COVID to yourself & those around you.
We're begging you to consider the risks you can pose to others & act accordingly.
There are many great articles, including this one:
1/2
NEW: Millions will observe half a decade of #LongCOVID this year as the ongoing pandemic turns five.
For @thesicktimes.bsky.social, I wrote about the courage of millions of pwLC who have led the way in the face of so much willful indifference, cruelty, and denial.
thesicktimes.org/2025/03/07/h...
For @thesicktimes.bsky.social, I wrote about the courage of millions of pwLC who have led the way in the face of so much willful indifference, cruelty, and denial.
thesicktimes.org/2025/03/07/h...
Half a decade of Long COVID - The Sick Times
Looking back on half a decade, there have been numerous milestones in Long COVID research, advocacy, and greater societal awareness, many led by people with the disease. There has also been, and conti...
thesicktimes.org
March 15, 2025 at 4:26 PM
If you are not disabled:
Please use the occasion of #LongCOVIDAwarenessDay to educate yourself about the ongoing risks of COVID to yourself & those around you.
We're begging you to consider the risks you can pose to others & act accordingly.
There are many great articles, including this one:
1/2
Please use the occasion of #LongCOVIDAwarenessDay to educate yourself about the ongoing risks of COVID to yourself & those around you.
We're begging you to consider the risks you can pose to others & act accordingly.
There are many great articles, including this one:
1/2
Reposted by Lisa McCorkell
Esp now we need reminders of the great work that often goes unnoticed in the US govt. Excellent feature from the @washingtonpost.com on @cureid.bsky.social . #LongCOVID #LongCOVIDAwareness2025
wapo.st/3Ft2hBe
wapo.st/3Ft2hBe
Opinion | The free-living bureaucrat
Michael Lewis on Heather Stone of the Food and Drug Administration.
wapo.st
March 13, 2025 at 9:04 PM
Esp now we need reminders of the great work that often goes unnoticed in the US govt. Excellent feature from the @washingtonpost.com on @cureid.bsky.social . #LongCOVID #LongCOVIDAwareness2025
wapo.st/3Ft2hBe
wapo.st/3Ft2hBe
Today is my last day in my role at @patientled.bsky.social. I am honored to have served in this role as part of the #LongCovid movement the last 5 yrs. While there’s still much to be done to achieve support, treatment, & cures for all, I’m so proud of the progress we’ve made b/c patients led the way
March 5, 2025 at 5:17 PM
Today is my last day in my role at @patientled.bsky.social. I am honored to have served in this role as part of the #LongCovid movement the last 5 yrs. While there’s still much to be done to achieve support, treatment, & cures for all, I’m so proud of the progress we’ve made b/c patients led the way
Reposted by Lisa McCorkell
Just sent to my reps, and posted in Solving MS where many have the double whammy of MS+LC.
I used this to quickly email all my reps.
They have told me email is better that call right now because so many people are contacting them.
democracy.io
I used this to quickly email all my reps.
They have told me email is better that call right now because so many people are contacting them.
democracy.io
February 28, 2025 at 2:38 AM
Just sent to my reps, and posted in Solving MS where many have the double whammy of MS+LC.
I used this to quickly email all my reps.
They have told me email is better that call right now because so many people are contacting them.
democracy.io
I used this to quickly email all my reps.
They have told me email is better that call right now because so many people are contacting them.
democracy.io
Honored to be part of the congressional briefing on #LongCovid that @immunologyaai.bsky.social is hosting this Wednesday with @virusesimmunity.bsky.social & @ejohnwherry.bsky.social! If you can, please call your congresspeople and ask their staffers to attend! www.aai.org/Public-Affai...
The American Association of Immunologists - AAI Congressional Briefing (February 2025)
www.aai.org
February 24, 2025 at 7:02 PM
Honored to be part of the congressional briefing on #LongCovid that @immunologyaai.bsky.social is hosting this Wednesday with @virusesimmunity.bsky.social & @ejohnwherry.bsky.social! If you can, please call your congresspeople and ask their staffers to attend! www.aai.org/Public-Affai...
Reposted by Lisa McCorkell
Excited to see this Long Covid Congressional Briefing on Feb 26 held by the American Association of Immunologists - with amazing panelists @virusesimmunity.bsky.social, @ejohnwherry.bsky.social, and @lisamccorkell.bsky.social! Just contacted all my congresspeople to suggest they send their staffers.
The American Association of Immunologists - AAI Congressional Briefing (February 2025)
www.aai.org
February 12, 2025 at 6:47 PM
Excited to see this Long Covid Congressional Briefing on Feb 26 held by the American Association of Immunologists - with amazing panelists @virusesimmunity.bsky.social, @ejohnwherry.bsky.social, and @lisamccorkell.bsky.social! Just contacted all my congresspeople to suggest they send their staffers.
Reposted by Lisa McCorkell
NEW: Trump commands the HHS to terminate a committee on Long COVID.
“We need answers of why this specific committee was targeted in light of the commitment made to Long COVID [in Kennedy’s hearing] said @lisamccorkell.bsky.social.
thesicktimes.org/2025/02/21/t...
“We need answers of why this specific committee was targeted in light of the commitment made to Long COVID [in Kennedy’s hearing] said @lisamccorkell.bsky.social.
thesicktimes.org/2025/02/21/t...
Trump commands HHS to terminate advisory committee on Long COVID - The Sick Times
A new executive order from the Trump Administration commands the Department of Health and Human Services (HHS) to terminate the Secretary’s Advisory Committee on Long COVID. The order, “Commencing the...
thesicktimes.org
February 21, 2025 at 3:09 PM
NEW: Trump commands the HHS to terminate a committee on Long COVID.
“We need answers of why this specific committee was targeted in light of the commitment made to Long COVID [in Kennedy’s hearing] said @lisamccorkell.bsky.social.
thesicktimes.org/2025/02/21/t...
“We need answers of why this specific committee was targeted in light of the commitment made to Long COVID [in Kennedy’s hearing] said @lisamccorkell.bsky.social.
thesicktimes.org/2025/02/21/t...
Three weeks ago RFK committed to collaborating with healthcare providers, researchers, and patients to better understand and mitigate #LongCovid's impact. The Advisory Committee would have been a key part of that, and now it will be terminated. www.whitehouse.gov/presidential...
Commencing the Reduction of the Federal Bureaucracy
By the authority vested in me as President by the Constitution and the laws of the United States of America, it is hereby ordered: Section 1.
www.whitehouse.gov
February 20, 2025 at 5:45 PM
Three weeks ago RFK committed to collaborating with healthcare providers, researchers, and patients to better understand and mitigate #LongCovid's impact. The Advisory Committee would have been a key part of that, and now it will be terminated. www.whitehouse.gov/presidential...
Reposted by Lisa McCorkell
"Officials halted midstream a training workshop for junior scientists, called off a workshop on adolescent learning minutes before it was to begin, and canceled meetings of two advisory councils."
It could've been telegraphed in advance. The fear, uncertainty, chaos, and disruption are the point.
It could've been telegraphed in advance. The fear, uncertainty, chaos, and disruption are the point.
Trump hits NIH with ‘devastating’ freezes on meetings, travel, communications, and hiring
Researchers facing
www.science.org
January 22, 2025 at 11:39 PM
"Officials halted midstream a training workshop for junior scientists, called off a workshop on adolescent learning minutes before it was to begin, and canceled meetings of two advisory councils."
It could've been telegraphed in advance. The fear, uncertainty, chaos, and disruption are the point.
It could've been telegraphed in advance. The fear, uncertainty, chaos, and disruption are the point.
Reposted by Lisa McCorkell
NYT columnist @zey.bsky.social has written about PLRC & how we've made some of the best #LongCovid research possible, despite being a small group of chronically ill people.
She's very kindly chosen us as this year's nonprofit to donate to, and we're deeply honored!
www.nytimes.com/2024/11/26/o...
She's very kindly chosen us as this year's nonprofit to donate to, and we're deeply honored!
www.nytimes.com/2024/11/26/o...
Opinion | Donate This Holiday Season: Long Covid Research Need Your Help
A group of long Covid patients is financing research and making progress.
www.nytimes.com
November 26, 2024 at 9:57 PM
NYT columnist @zey.bsky.social has written about PLRC & how we've made some of the best #LongCovid research possible, despite being a small group of chronically ill people.
She's very kindly chosen us as this year's nonprofit to donate to, and we're deeply honored!
www.nytimes.com/2024/11/26/o...
She's very kindly chosen us as this year's nonprofit to donate to, and we're deeply honored!
www.nytimes.com/2024/11/26/o...
Reposted by Lisa McCorkell
Thank you @lisamccorkell.bsky.social and @patientled.bsky.social for speaking to @statnews.bsky.social to keep Long Covid and patients with infection associated chronic conditions at the front of the science and medicine conversation
www.statnews.com/2024/11/08/t...
www.statnews.com/2024/11/08/t...
November 8, 2024 at 10:30 PM
Thank you @lisamccorkell.bsky.social and @patientled.bsky.social for speaking to @statnews.bsky.social to keep Long Covid and patients with infection associated chronic conditions at the front of the science and medicine conversation
www.statnews.com/2024/11/08/t...
www.statnews.com/2024/11/08/t...
NIAID issued an RFI for RECOVER-TLC! They seek responses on:
1. Potential therapeutics for #LongCovid
2. Interest in being involved on working groups
3. Biomarkers to be used in Long COVID clinical trials
4. General feedback on RECOVER-TLC
More info here: grants.nih.gov/grants/guide...
1. Potential therapeutics for #LongCovid
2. Interest in being involved on working groups
3. Biomarkers to be used in Long COVID clinical trials
4. General feedback on RECOVER-TLC
More info here: grants.nih.gov/grants/guide...
NOT-AI-25-007: Request for Information (RFI): Researching COVID to Enhance Recovery Treating Long COVID (RECOVER-TLC)
NIH Funding Opportunities and Notices in the NIH Guide for Grants and Contracts: Request for Information (RFI): Researching COVID to Enhance Recovery Treating Long COVID (RECOVER-TLC) NOT-AI-25-007. ...
grants.nih.gov
November 5, 2024 at 1:23 AM
NIAID issued an RFI for RECOVER-TLC! They seek responses on:
1. Potential therapeutics for #LongCovid
2. Interest in being involved on working groups
3. Biomarkers to be used in Long COVID clinical trials
4. General feedback on RECOVER-TLC
More info here: grants.nih.gov/grants/guide...
1. Potential therapeutics for #LongCovid
2. Interest in being involved on working groups
3. Biomarkers to be used in Long COVID clinical trials
4. General feedback on RECOVER-TLC
More info here: grants.nih.gov/grants/guide...
Reposted by Lisa McCorkell
Wow, what a beautiful, humanizing piece. Really remarkable to see the Audubon Society of all places produce such a high-quality account of life with Long Covid. Hope more outlets are taking notes!
Feat. @edyong209.bsky.social @lisamccorkell.bsky.social @ezra.zone
Feat. @edyong209.bsky.social @lisamccorkell.bsky.social @ezra.zone
A New Birding Club Wants to Help COVID Long-Haulers Safely Enjoy Nature Together
Ed Yong, an award-winning science journalist who widely covered the pandemic, recently launched The Spoonbill Club to provide community—and an accessible hobby—for folks with long COVID.
www.audubon.org
April 14, 2024 at 8:47 AM
Wow, what a beautiful, humanizing piece. Really remarkable to see the Audubon Society of all places produce such a high-quality account of life with Long Covid. Hope more outlets are taking notes!
Feat. @edyong209.bsky.social @lisamccorkell.bsky.social @ezra.zone
Feat. @edyong209.bsky.social @lisamccorkell.bsky.social @ezra.zone
Reposted by Lisa McCorkell
In my newsletter, I wrote about The Spoonbill Club--a series of birding trips that I started for Bay Area folks with long-COVID and related energy-limiting illnesses.
We've done 2 small pilots that I think worked well. Here's more on the intention & planning: buttondown.email/edyong209/ar...
We've done 2 small pilots that I think worked well. Here's more on the intention & planning: buttondown.email/edyong209/ar...
March 18, 2024 at 4:50 PM
In my newsletter, I wrote about The Spoonbill Club--a series of birding trips that I started for Bay Area folks with long-COVID and related energy-limiting illnesses.
We've done 2 small pilots that I think worked well. Here's more on the intention & planning: buttondown.email/edyong209/ar...
We've done 2 small pilots that I think worked well. Here's more on the intention & planning: buttondown.email/edyong209/ar...
Reposted by Lisa McCorkell
FINALLY! Just in time for the winter COVID surge, the CDC now has a useful wastewater dashboard.
It indicates that nationally COVID wastewater levels are HIGH and rising further.
You can access the dashboard here: cdc.gov/nwss/rv/COVI...
It indicates that nationally COVID wastewater levels are HIGH and rising further.
You can access the dashboard here: cdc.gov/nwss/rv/COVI...
November 28, 2023 at 10:28 PM
FINALLY! Just in time for the winter COVID surge, the CDC now has a useful wastewater dashboard.
It indicates that nationally COVID wastewater levels are HIGH and rising further.
You can access the dashboard here: cdc.gov/nwss/rv/COVI...
It indicates that nationally COVID wastewater levels are HIGH and rising further.
You can access the dashboard here: cdc.gov/nwss/rv/COVI...
Chronic illness & disability community: I’ll be a panelist at a NASEM workshop on public access to federally-funded research results & Id love to hear ur thoughts on:
What are barriers to accessing & understanding research results?
What are implications of barriers?
What does true access look like?
What are barriers to accessing & understanding research results?
What are implications of barriers?
What does true access look like?
November 21, 2023 at 12:11 AM
Chronic illness & disability community: I’ll be a panelist at a NASEM workshop on public access to federally-funded research results & Id love to hear ur thoughts on:
What are barriers to accessing & understanding research results?
What are implications of barriers?
What does true access look like?
What are barriers to accessing & understanding research results?
What are implications of barriers?
What does true access look like?
In the US alone, 6% of adults & millions of children have Long COVID, with those numbers bound to grow, yet we risk losing momentum on research to date. We need a moonshot - at least $1 billion/yr in US gov funding for the next 10 years
www.nature.com/articles/d41...
www.nature.com/articles/d41...
Long COVID research risks losing momentum – we need a moonshot
Investing US$1 billion every year for the next ten years into long COVID research could improve the lives of millions and save trillions in economic costs. Investing US$1 billion every year for the ne...
www.nature.com
October 18, 2023 at 5:41 PM
In the US alone, 6% of adults & millions of children have Long COVID, with those numbers bound to grow, yet we risk losing momentum on research to date. We need a moonshot - at least $1 billion/yr in US gov funding for the next 10 years
www.nature.com/articles/d41...
www.nature.com/articles/d41...
Reposted by Lisa McCorkell
More great work on the need for more research on Long COVID and infection-associated chronic illness from @lisamccorkell.bsky.social and @patientled.bsky.social. Please share!
www.nature.com/articles/d41...
www.nature.com/articles/d41...
Long COVID research risks losing momentum – we need a moonshot
Investing US$1 billion every year for the next ten years into long COVID research could improve the lives of millions and save trillions in economic costs. Investing US$1 billion every year for the ne...
www.nature.com
October 18, 2023 at 12:40 PM
More great work on the need for more research on Long COVID and infection-associated chronic illness from @lisamccorkell.bsky.social and @patientled.bsky.social. Please share!
www.nature.com/articles/d41...
www.nature.com/articles/d41...
Reposted by Lisa McCorkell
Overjoyed to announce my Concise Clinical Review of ME/CFS in Mayo Clinic Proceedings (with updated diagrams!) Very glad to have worked with
Stephanie Grach, and Ravi Ganesh and Tony Chon on this! #MedEd #MedTwitter 🧵 www.mayoclinicproceedings.org/article/S002...
Stephanie Grach, and Ravi Ganesh and Tony Chon on this! #MedEd #MedTwitter 🧵 www.mayoclinicproceedings.org/article/S002...
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic
disease often preceded by infection. There has been increased interest in ME/CFS recently
because of its significant...
www.mayoclinicproceedings.org
October 7, 2023 at 4:03 PM
Overjoyed to announce my Concise Clinical Review of ME/CFS in Mayo Clinic Proceedings (with updated diagrams!) Very glad to have worked with
Stephanie Grach, and Ravi Ganesh and Tony Chon on this! #MedEd #MedTwitter 🧵 www.mayoclinicproceedings.org/article/S002...
Stephanie Grach, and Ravi Ganesh and Tony Chon on this! #MedEd #MedTwitter 🧵 www.mayoclinicproceedings.org/article/S002...