Lisa McCorkell @LisaAMcCorkell Twitter profile

Last Seen Profiles

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Lisa McCorkell

@LisaAMcCorkell

2 years

Dear @POTUS : Everyone is NOT in “pretty good shape.” 7.6% of American adults are currently experiencing #LongCovid . 400 people die from COVID every day. People aren’t wearing masks because your @CDCgov told them not to despite all public health evidence. Pay attention!! Care!!!

60 Minutes

@60Minutes

2 years

“The pandemic is over. We still have a problem with COVID. We’re still doing a lot of work on it. But the pandemic is over,” President Biden tells 60 Minutes in an interview in Detroit.

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Lisa McCorkell

@LisaAMcCorkell

2 years

New data from the Household Pulse Survey: ➡️19% of adults in the US who have had COVID currently experience #LongCovid ➡️ Overall this means 7.5% of adults in the US have #LongCovid

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Lisa McCorkell

@LisaAMcCorkell

1 year

Our #LongCovid review is published! We review major findings of #LongCovid research; diagnostic tools & treatments; impact of vaccines, variants, & reinfections; & challenges & recs for future research and policy. Thank u @ahandvanish @julialmv @EricTopol !

Eric Topol

@EricTopol

1 year

Our comprehensive review of #LongCovid has just been published Phenomenal work by @ahandvanish @LisaAMcCorkell @juliamv @NatureRevMicro

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Lisa McCorkell

@LisaAMcCorkell

1 year

I am so honored to be included @Nature 's 10 for 2022. This is a testament to the #patientled movement: together, building off the work of many who came before us, patients ( #LongCovid , ME, dysautonomia, & more) are shaping science for the better 1/

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Lisa McCorkell

@LisaAMcCorkell

7 months

In the US alone, 6% of adults & millions of children have #LongCovid , with those numbers bound to grow, yet we risk losing momentum on research to date. We need a moonshot - at least $1 billion/year in US gov funding for the next 10 years @MichaelPelusoMD

Long COVID research risks losing momentum – we need a moonshot

Nature - 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.

www.nature.com

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Lisa McCorkell

@LisaAMcCorkell

2 years

New @BrookingsInst blog highlights that 23% of Latinos in Colorado have #LongCovid . Of Latinos w/ #LongCovid , 22% report that they have lost their job from #LongCovid , 33% have lost wages, & 36% have depleted savings to pay for health care costs

The socioeconomic consequences of COVID-19 for Latino families | Brookings

Although our extant knowledge of long COVID-19 remains limited, as more data becomes available some patterns are beginning to emerge that can help provide some perspective on the road ahead. Most...

www.brookings.edu

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Lisa McCorkell

@LisaAMcCorkell

1 year

ATTN PEOPLE WITH #LongCovid IN THE US! @US_FDA is hosting a virtual public meeting on Patient-Focused Drug Development for Long COVID and we need you to send in your story!!! 1. Register for the event here:

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Lisa McCorkell

@LisaAMcCorkell

1 year

Today marks 3 years since I first had symptoms from COVID & developed #LongCovid . On previous March 14ths, I've reflected personally on what happened, what I lost, and how I've grown. This year, I find myself wanting more to look ahead. Here's what I'm planning: 🧵 1/

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Lisa McCorkell

@LisaAMcCorkell

1 year

On todays @MorningEdition , @EricTopol talks about our #LongCovid review "The lack of the medical community's dealing with this inconvenient truth - we have to get over that. We've got to support these folks. We've got to come up with better treatments.. 1/

As the pandemic enters its 4th year, there's still much to learn about long COVID

Researchers estimate at least 65 million people worldwide have suffered from long COVID. NPR's Steve Inskeep talks to Dr. Eric Topol about a paper he co-authored on what we know about long COVID.

www.npr.org

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Lisa McCorkell

@LisaAMcCorkell

2 years

We need provider education & funding for #LongCovid clinics, especially pediatric, NOW. We’ve been calling for this for 2.5 years. I’m tired of the “we’re still learning” excuse. There is SO much info out there that can help patients, and at minimum stop harming.

TIME

@TIME

2 years

Watch: White House COVID-19 response coordinator Dr. Ashish Jha speaks on the scope of Long COVID care available and hopefully upcoming. TIME spoke to families about the difficulties searching for pediatric Long COVID care; read more here:

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Lisa McCorkell

@LisaAMcCorkell

4 months

Reducing the isolation period to 1 day will result in more cases of #LongCovid , both because of increased spread of COVID and because people will not be incentivized or able to rest during their acute illness, an important tool in lowering the risk of LC

California ends COVID isolation rule for asymptomatic cases as winter infections climb

California relaxed its COVID-19 isolation guidelines just as infections for the respiratory virus increased. Symptom-free people can go to work or school.

calmatters.org

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Lisa McCorkell

@LisaAMcCorkell

4 months

hi @jonfavs , since you care about advocacy for #LongCovid , would you sign onto this open letter to Biden calling for more funding for #LongCovid , and then have a @PodSaveAmerica ep dedicated to LC featuring people with lived experience? #PodSaveJon

Jon Favreau

@jonfavs

4 months

Just to follow up: the brand of person I was referring to is someone who tells people to fuck off if they choose to work from home while sick. I don’t find that persuasive, I find it unhinged. Long Covid is real, tragic, and deserves more attention (I had a post-Covid condition…

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Lisa McCorkell

@LisaAMcCorkell

1 year

Our Patient-Led Research Fund is funding 9 incredible studies into #LongCovid and associated conditions. Our Fund put patients in the driver's seat, deciding research priorities and what to fund.

Patient-Led Research Collaborative

@patientled

1 year

Big news! We are *thrilled* to announce the $4.8 million in research awards for #LongCovid & associated conditions from our Patient-Led Biomedical Fund today! These were decided by a panel of 15 patient-experts & we're funding 9 exceptional projects! 1/

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Lisa McCorkell

@LisaAMcCorkell

1 year

The 1st RECOVER adult cohort results have been published. I was a patient rep on this paper, which means I did what I could to represent the patient experience in writing up the results. A few clarifications🧵1/

Development of a Definition of Postacute Sequelae of SARS-CoV-2 Infection

This study aims to develop a definition of postacute sequelae of SARS-CoV-2 infection (PASC) based on self-reported symptoms and describe PASC frequencies across cohorts, vaccination status, and...

jamanetwork.com

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Lisa McCorkell

@LisaAMcCorkell

2 months

"We must do everything that we can to find potential treatments & cures for #LongCovid . In my view, there has been a lack of urgency in Congress, the fed gov, & the medical establishment to research & develop new treatments that might cure or lessen the impact of this condition"

Bernie Sanders

@SenSanders

2 months

We cannot ignore the public health crisis that is Long COVID. On Long COVID Awareness Day, let us commit to doing everything we can to address this horrible condition. The U.S. government must do more to increase awareness and provide additional resources to develop treatments.

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Lisa McCorkell

@LisaAMcCorkell

5 months

We lost an incredible human yesterday. Beth was such a force. While she didn’t like the spotlight, don’t let that fool you. She was a star. She laid the foundation for so much research, advocacy, & support in the ME community, which then cascaded into the #LongCovid community. 1/

#MEAction Network

@MEActNet

5 months

It is with deep sadness that we share with you that we lost one of our heroes and champions of ME yesterday. Beth Mazur passed away after battling ME for 15 years. She was a selfless beacon of hope & light in our community. She demonstrated an unwavering commitment to the cause.

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Lisa McCorkell

@LisaAMcCorkell

6 months

Quite the whiplash going from @MEActionNH ’s incredible conference yesterday, where everyone was masked and understands the consequences of a COVID infection, where when I presented on the future of medicine, I discussed clear air and infection control and the audience agreed…

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Lisa McCorkell

@LisaAMcCorkell

4 months

In the middle of a surge. Shame on you @CAPublicHealth and @CAgovernor .

KTLA

@KTLA

4 months

California health officials shorten COVID isolation period to 1 day

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Lisa McCorkell

@LisaAMcCorkell

1 year

Please take our @patientled survey on reinfections so we can better understand the impact of COVID reinfections on health and quality of life! This survey is open to everyone - regardless of if you've had COVID or #LongCovid .

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Lisa McCorkell

@LisaAMcCorkell

11 months

New preprint analyzing Household Pulse Survey data finds that people with #LongCovid are nearly TWICE as likely to experience significant difficulty with household expenses, be behind on housing payments, & face likely eviction or foreclosure.

Association of Long COVID with housing insecurity in the United States, 2022-2023

Objectives To assess the association of Long COVID with housing insecurity in the United States. Methods To compare the prevalence of 3 binary indicators of housing insecurity between people with...

www.medrxiv.org

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Lisa McCorkell

@LisaAMcCorkell

1 year

@NIH not requesting ANY new funding for #LongCovid research is absolutely outrageous and shameful. We need an office within the NIH Director's Office that is dedicated to coordinating LC and associated conditions research across the institutes, and we need MORE FUNDING.

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Lisa McCorkell

@LisaAMcCorkell

2 years

Huge announcement from our team @patientled ! And a related personal one from me: starting in mid-May, I'll be with PLRC full-time! I have been doing this work on the side these last 2 years & I am thrilled to now dedicate my full attention to research & advocacy for the community

Patient-Led Research Collaborative

@patientled

2 years

We are excited to share that we have received $3 million from Balvi for research into #LongCovid ! Balvi is a direct giving fund, established by @VitalikButerin , for high-impact COVID projects. See our full announcement here: 1/

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Lisa McCorkell

@LisaAMcCorkell

5 months

The proposed changes to the American Community Survey would worsen the undercount of disabled people in the US, cutting the current rate by 40%! Submit a comment to @uscensusbureau by 12/19 to let them know that while the ACS needs to better measure disability, this is not it!

Alice Wong 王美華

@SFdirewolf

5 months

There’s already an undercount of disabled people (including people w/chronic illness) in the US because so many people do not identify due to ableism Proposed changes to @uscensusbureau questions about disability is ERASURE Submit a public comment by 12/19! #CripTheVote

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Lisa McCorkell

@LisaAMcCorkell

3 years

🗣️BIG ANNOUNCEMENT! Tomorrow the US House Committee on Energy & Commerce, Subcommittee on Health will be holding a hearing on #LongCovid . I am honored to be testifying on behalf of @patientled and alongside @chiluvs1 . Tune in:

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Lisa McCorkell

@LisaAMcCorkell

1 year

@dysclinic This conclusion relies on the assumption that the protocol & analysis will accurately capture any harm done. Given the history of trials of exercise in ME, this is not something we can rely on. I recommend reading @MEActNet ’s letter & summary of evidence

NIH Must Not Overlook Evidence of Exercise Harm

Long COVID Exercise study must address safety, efficacy concerns.

www.meaction.net

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Lisa McCorkell

@LisaAMcCorkell

1 year

I spoke with someone who often works with FDA and pharma who watched the PFDD meeting - she was really moved by it and felt motivated to advocate for #LongCovid when she hadn't been working on it before. Hoping that's just the tip of the iceberg on what that event will lead to.

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Lisa McCorkell

@LisaAMcCorkell

1 year

THE TOP 0.0016% OF RESEARCH OUTPUTS EVER TRACKED! So excited at what this will do for #LongCovid research and treatment. Thank you for sharing it and keep at it! We need this to get in the hands of all patients, doctors, researchers, and policymakers!

Long COVID: major findings, mechanisms and recommendations

Nature Reviews Microbiology - Long COVID is an often debilitating illness of severe symptoms that can develop during or following COVID-19. In this Review, Davis, McCorkell, Vogel and Topol explore...

www.nature.com

Hannah Davis

@ahandvanish

1 year

I'm mindblown at the response to our #LongCovid review - 402k views since Fri & in the top 0.000016 of 22.9m tracked papers. Hearing that it's circulating in the med field & giving researchers ideas to pursue. A huge sign of hope that change is happening!

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Lisa McCorkell

@LisaAMcCorkell

6 months

In Sept, @MichaelPelusoMD & I published an article calling for a moonshot for #LongCovid to address the dire situation of NIH LC research funding running out. Today, an incredible group of advocates have amplified this call & are asking YOU to join us in calling our reps! Lfg!!

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Lisa McCorkell

@LisaAMcCorkell

8 months

I am so sorry, @K_Bishof . For those who don't know, Karyn is one of the most dedicated & smart #LongCovid advocates, working tirelessly the last 3 years on transmission prevention & treatment for LC incl antivirals. She is also a dear friend. Please send her positive thoughts

Karyn Bishof

@K_Bishof

8 months

Being admitted. Vomiting up blood (mildly) now too. CT with contrast done and nada showing.

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Lisa McCorkell

@LisaAMcCorkell

1 year

And just to be ultra clear - there are over 200 symptoms of #LongCovid . Our @patientled paper first identified these. All are important. All can impact quality of life. 7/

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Lisa McCorkell

@LisaAMcCorkell

1 year

But the press is not fully understanding the paper which could have dangerous downstream effects. Since the beginning of working on this paper I’ve done everything I could to ensure the model presented in this paper is not used clinically, and I’ll continue to do that. 6/

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Lisa McCorkell

@LisaAMcCorkell

10 months

27% of people with #LongCovid did not get needed health care because of costs. 23.8% currently have medical bills that are past due. #pwLC are more likely to not get needed health care because of how difficult it is to find clinicians.

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Lisa McCorkell

@LisaAMcCorkell

1 year

An overview of funding for #LongCovid in the US FY24 budget request for NIH, AHRQ, CDC, & HRSA, courtesy of @yogafogie : NIH: $0 AHRQ: $19M for research on LC care delivery CDC: $25M to continue studying LC HRSA: $130M to support integrated specialty care & training for PCPs

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Lisa McCorkell

@LisaAMcCorkell

6 months

The people in power are not understanding what’s happening in communities, or they’re choosing to ignore it.

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Lisa McCorkell

@LisaAMcCorkell

6 months

We need this article to be written!! We need researchers & providers to start using the relapsing/remitting terminology in #LongCovid . Many who have “recovered” may be in remission - that’s important to study, for clinical care, and for patients to understand about their illness

Fiona Lowenstein

@fi_lowenstein

6 months

I've been pitching an article on this phenomenon for two months now with no luck; if you're an editor interested in a ~new angle on #LongCovid ~ (which I hear from so many of you!) pls consider commissioning a story from Miles + me about reframing Long COVID recovery as remission

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Lisa McCorkell

@LisaAMcCorkell

6 months

LC advocates spend their limited spoons fighting to improve outcomes for our community. Harassment is *never* going to help move our cause forward, regardless of if there is disagreement on tactics or asks. After a beautiful, community-building day, this is a devastating outcome.

Seets💫

@MamaSitaa__

6 months

I feel sick to my stomach. Multiple people sick with Long Covid who worked on the #longcovidmoonshot are being targeted and/or doxxed. This is absolutely unacceptable. I feel so disgusted, unsafe, and concerned for myself and other community members. This is despicable behavior.

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Lisa McCorkell

@LisaAMcCorkell

1 year

If you support the addition of an ICD-10-CM code for post-exertional malaise in the US & urge for its expedited implementation, please submit this form by April 6 & share widely!

Support for a PEM ICD-10-CM Code

At the March 2023 CDC ICD-10-CM Coordination and Maintenance meeting, Patient-Led Research Collaborative presented a proposal to add an ICD-10-CM code for post-exertional malaise/post-exertional...

docs.google.com

Patient-Led Research Collaborative

@patientled

1 year

Did you know there is no specific ICD code for the symptom of post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE)? PLRC is proposing the addition of an ICD-10-CM code for PEM/PESE, which will be presented to the US's CDC this Wednesday, March 8.

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Lisa McCorkell

@LisaAMcCorkell

6 months

I just called my reps @RepBarbaraLee , @AlexPadilla4CA , & @Senlaphonza to call for at least $1B in annual research funding for #LongCovid and support the current LC bills in Congress Please join!

Lisa McCorkell

@LisaAMcCorkell

6 months

In Sept, @MichaelPelusoMD & I published an article calling for a moonshot for #LongCovid to address the dire situation of NIH LC research funding running out. Today, an incredible group of advocates have amplified this call & are asking YOU to join us in calling our reps! Lfg!!

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Lisa McCorkell

@LisaAMcCorkell

6 months

…to today being at Milken Institute’s Future of Health Summit where maybe 2% of attendees are masked, there’s zero discussion of #LongCovid or COVID mitigation, and COVID is seen as a threat that has receded.

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Lisa McCorkell

@LisaAMcCorkell

1 year

REMINDER! @US_FDA is hosting a public meeting on Patient-Focused Drug Development for #LongCovid on Apr 25! After each panel there will be time for public comment where you'll be able to share your experience & input. Please participate if you are able!

Public Meeting on Patient-Focused Drug Development for Long COVID

On April 25th, 2023, FDA is hosting a virtual public meeting on Patient-Focused Drug Development for Long COVID.

www.fda.gov

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Lisa McCorkell

@LisaAMcCorkell

1 year

Current structures have failed disabled people since their creation. With millions of people now impacted by #LongCovid & more joining daily due to neglectful public health policies, it is well overdue to shape science, medicine, & social policy with a disability justice lens 4/

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Lisa McCorkell

@LisaAMcCorkell

1 year

😭😭😭 = me when I saw my microclots from #LongCovid . 2.5 years filled with dismissal from providers and few answers made this result so meaningful. Scary af too, but so meaningful.

charlos

@loscharlos

1 year

"When she first saw the microscope images of fluorescent green blobs revealing #MicroClots , she cried with relief. For her, the confirmation that she has microclots felt like validation of her illness, 'especially after.. being gaslit throughout the last few years.'”

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Lisa McCorkell

@LisaAMcCorkell

1 year

Too often sharing ideas for research is inaccessible to those with actual lived experience. To counter this & give patients a platform, we created our own journal of hypotheses authored by the patient/caregiver community. Check it out! #patienthypotheses

Patient-Led Research Collaborative

@patientled

1 year

We’re excited to announce that the 1st issue of the Patient-Generated Hypotheses Journal is available as a pdf on our website! This issue includes 6 hypotheses + poll results created by patients w/ #LongCOVID or associated conditions (or caregivers).

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Lisa McCorkell

@LisaAMcCorkell

6 months

Several important public comment periods closing soon! Please take action and make your voice heard on infection control guidelines in healthcare facilities, 504 regulations, PEM/PESE ICD code, and #LongCovid models of care 🧵

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Lisa McCorkell

@LisaAMcCorkell

11 months

Disagree on the approach @IAmBiotech is suggesting here. The top candidates for drugs in #LongCovid target underlying mechanisms (i.e. antivirals, anticoagulants, etc), not individual symptoms. Endpoints should include quality of life and functional ability measures

Monica Verduzco-Gutierrez, MD

@MVGutierrezMD

11 months

Now at @theNASEM symposium on #LongCOVID listening to Phyllis Arthur of @IAmBiotech with a goal to develop clinical trials for Long COVID. #TreatLongCovid

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Lisa McCorkell

@LisaAMcCorkell

11 months

A Q&A from RECOVER on the JAMA paper will be posted on Monday. Me & several other patient reps were invited to provide feedback. Hoping RECOVER will incorporate and prioritize this input. Here are *some* of the main points I want it to get across:

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Lisa McCorkell

@LisaAMcCorkell

3 years

. @WHO has posted their clinical case definition for #LongCovid ! And I could not be more proud of my @patientled teammate @ahandvanish for being part of the working group and for centering patients' experiences and needs throughout the process.

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Lisa McCorkell

@LisaAMcCorkell

1 year

Journalists covering the JAMA RECOVER paper should review this article by @betsyladyzhets

What the new RECOVER study does—and doesn’t—tell us about Long COVID

RECOVER, the U.S.’s largest initiative to understand Long COVID, published a major scientific study this week in JAMA. The paper goes over key Long COVID symptoms and other findings from nearly...

coviddatadispatch.com

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Lisa McCorkell

@LisaAMcCorkell

1 year

@loscharlos @coco_chatel @ElianaUku @Cantonaxl @smithsj @ahandvanish @NIH And overall, it's ableism. 1 in 4 adults have a disability in the US. That statistic is not debated. Yet, even with those WILD numbers, we have a system where if you're disabled, you're thrown into a cycle of poverty if you weren't already there to being with.

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Lisa McCorkell

@LisaAMcCorkell

1 year

1. Continuing to combat my internalized ableism and to learn from disability justice leaders. Currently reading @DrSamiSchalk 's Black Disability Politics; up next is @thellpsx 's The Future Is Disabled. 2/

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Lisa McCorkell

@LisaAMcCorkell

1 year

2. Seeking adequate healthcare. The dismissal in the early months of my Long COVID (plus the relatively mild nature of my LC symptoms other than my PMDD) caused me to stop seeking care for the most part. No more!! (maybe; we'll see how it goes lol) 3/

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Lisa McCorkell

@LisaAMcCorkell

2 years

Race/ethnicity breakdown of adults who ever had #LongCovid after getting COVID: 39.6% of Hispanic/Latino 25.4% of Non-Hispanic Asian, single race 37.8% of Non-Hispanic Black, single race 33.8% of Non-Hispanic white, single race 35.7% of Non-Hispanic, other races & multiple races

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Lisa McCorkell

@LisaAMcCorkell

10 months

Over three years into #LongCovid , here's where we need to go next

3 Years Into Long COVID: Where Do We Go From Here?

In April 2021, after 13 months of having long COVID and helping conduct two patient-led research studies on the condition, I testified to Congress about what was needed to address the crisis.

www.medscape.com

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Lisa McCorkell

@LisaAMcCorkell

9 months

@VPrasadMDMPH @PutrinoLab @UCSF @NIH People are still taking COVID precautions. Wake up. Go outside. Your long COVID numbers… oh wait, you have literally zero evidence to support anything you say. You should give Putrino your grant money; that way it would actually make a positive impact on people’s lives.

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Lisa McCorkell

@LisaAMcCorkell

1 year

@loscharlos @coco_chatel @ElianaUku @Cantonaxl @smithsj @ahandvanish @NIH Being in those rooms, the issue is not this disbelief in prevalence. It's political. It's budget related. It's steeped in a history of neglect of infection-onset illness. /4

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Lisa McCorkell

@LisaAMcCorkell

6 months

Chronic illness & disability community - would love to hear your thoughts on: What are any barriers you face to accessing & understanding research results? What are the implications of these barriers? What does true access look like, particularly for marginalized populations?

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Lisa McCorkell

@LisaAMcCorkell

2 years

A reminder to all my friends who wear cloth masks… please upgrade and lmk if you don’t have access to/can’t afford better ones

California Department of Public Health

@CAPublicHealth

2 years

#Omicron is leading to a steep surge in hospitalizations across the state. To help slow the spread and protect yourself and others, upgrade your mask. Wear an N95, KF94, or KN95 if you can, especially in crowded public settings.

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Lisa McCorkell

@LisaAMcCorkell

1 year

@loscharlos @coco_chatel @ElianaUku @Cantonaxl @smithsj @ahandvanish @NIH Convincing people of prevalence is not the issue; it's how we treat disabled people generally.

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Lisa McCorkell

@LisaAMcCorkell

11 months

Thanks to committee member @K_Bishof & @theNASEM staff incl @LisaBrownMPH for making the #LongCovid definition workshop more accessible - virtual option, & in person has good ventilation with multiple filters, masks strongly recommended (tho not full adherence) & a room for rest

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Lisa McCorkell

@LisaAMcCorkell

1 year

In terms of what the press isn’t covering that are interesting findings, check out this thread and I’ll try to add more on later. /8

Hannah Davis

@ahandvanish

1 year

I want to highlight a couple big findings in the new RECOVER #LongCovid paper (aside from the definition) that may be missed! Journalists in particular, you may be interested: 1/

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Lisa McCorkell

@LisaAMcCorkell

1 year

3. Pushing hard for well-designed clinical trials that test what's of priority to the patient community. 4/

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Lisa McCorkell

@LisaAMcCorkell

1 year

And reiterating my closing statement - Overall, there are millions of patients who desperately need well designed, accessible trials testing therapeutics that are of priority to the community. Excuses of no definitive biomarker or murky endpoints are not acceptable.

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Lisa McCorkell

@LisaAMcCorkell

1 year

5. Being the best advocate I can be for all people with #LongCovid , people with any infection-onset chronic condition, and all disabled people. Let's get some big wins this year. 6/

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Lisa McCorkell

@LisaAMcCorkell

2 years

More findings: ➡️Transgender & bisexual adults more likely to have #LongCovid compared to adults of other sexual orientations & identities ➡️Younger adults more likely to have #LongCovid than older adults ➡️Prevalence varies across states, w/ highest prevalence in KY and AL

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Lisa McCorkell

@LisaAMcCorkell

4 months

We need better public health policies, including masking in healthcare, free access to high-quality masks, education on how to properly mask, ventilation in all buildings, and, of course, isolation policies that are scientific, equitable, and reflect the reality we live in

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Lisa McCorkell

@LisaAMcCorkell

1 year

The paper provides a definition for PASC positivity based on the symptoms that were most distinguishable between uninfected & infected ppl in the sample. If people didn’t meet the scoring threshold for PASC+, that doesn’t mean they don’t have PASC! It means they’re unspecified 2/

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Lisa McCorkell

@LisaAMcCorkell

1 year

4. Continuing to build up @patientled and putting patients at the driver's seat of research, funding, and policy. 5/

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Lisa McCorkell

@LisaAMcCorkell

1 year

We are hopeful it will lead to better research that builds off existing knowledge, better provider education, and ultimately better outcomes for people with #LongCovid and associated conditions like ME/CFS and POTS

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Lisa McCorkell

@LisaAMcCorkell

11 months

This is NOT to be used for clinical care, diagnosis, or inclusion/exclusion criteria. There are over 200 symptoms of Long COVID. There are people who have Long COVID who don't meet the scoring threshold which inherently means it is not the definition for LC. Limitations of study.

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Lisa McCorkell

@LisaAMcCorkell

7 months

By rapidly understanding and treating #LongCovid and other infection-associated chronic conditions, we will improve patients' quality of life now and improve outcomes for generations to come.

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Lisa McCorkell

@LisaAMcCorkell

7 months

In addition to funding, we need to prioritize: 1. Agreeing on what Long COVID is 2. Bolstering team science, which could be assisted by an Office of Infection-Associated Chronic Conditions Research in the NIH Office of the Director 3. Curating resources from early days of COVID

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Lisa McCorkell

@LisaAMcCorkell

1 year

in addition to flipping the script on who is in the driver's seat of research. It's clear that patient experience is not only valuable to research, it's critical - to finding accurate answers faster and to having answers be representative of the people it's intending to help. 3/

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Lisa McCorkell

@LisaAMcCorkell

1 year

"And what can't be emphasized enough: there's only one way of preventing #LongCovid , which is not to get COVID in the first place, and that's another reason not to let our guard down as the pandemic and the virus continues its course." 2/

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Lisa McCorkell

@LisaAMcCorkell

2 years

Research opportunity! The 2022 National Survey on Health and Disability is open - if you are living in the US, are age 18+, and have a disability and/or chronic health condition, please take this 20-30 min survey:

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Lisa McCorkell

@LisaAMcCorkell

10 months

We need an Operation Warp Speed for Long COVID. We need to revolutionize the workplace; embed a disability economic justice framework in policy solutions; & address long-standing systemic barriers that keep disabled ppl, particularly disabled ppl of color, in a cycle of poverty

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Lisa McCorkell

@LisaAMcCorkell

2 years

I am honored to be a contributor to this book in the company of so many of my heroes! The #LongCovid community is strong, and it is so exciting to be able to document our shared learnings and bring it to the masses. cc: @patientled

Fiona Lowenstein

@fi_lowenstein

2 years

I am SO excited to announce THE LONG COVID SURVIVAL GUIDE – a peer-to-peer advice book on #LongCovid , written by those with lived experience, forthcoming from @experimentbooks in November 2022!

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Lisa McCorkell

@LisaAMcCorkell

1 year

Three calls to action to support #LongCOVID research! 1. Sign this petition asking RECOVER leads to halt clinicals trials for exercise and CBT, and instead use the funds for trials of therapeutics prioritized by post-viral experts and patient groups

NIH must stop Long COVID trials on debunked, damaging therapies and fund strategic therapeutic...

As the year draws to a close, I am contacting you on an urgent matter. Please sign our petition to demand that the US National Institutes of Health block plans for Long COVID research studies on...

actionnetwork.org

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Lisa McCorkell

@LisaAMcCorkell

1 year

That is also why this isn’t meant to be an official prevalence study. The sample is not fully representative, but also we know that there are people in the unspecified group that have PASC! 4/

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Lisa McCorkell

@LisaAMcCorkell

2 years

@zeynep @ShaneyWright @LeylaDAsadi @walidgellad @bobepidemiology There’s value in assessing severity, but as a principle of disability justice, we aim to be inclusive of all those who are sick. One lingering or new onset symptom matters and even non-severe symptoms can cause major disruptions to a life and sense of identity.

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Lisa McCorkell

@LisaAMcCorkell

2 years

Thank you @RepPressley & @RepDonBeyer for joining the #LongCovid community in our demand to #CountLongCovid ! It is imperative that @CDCgov partners with patients to develop a robust methodology for tracking the illness that will ensure that all who are impacted are counted.

Congresswoman Ayanna Pressley

@RepPressley

2 years

Folks suffering from Long COVID have been overlooked for too long. Collecting robust data will help us understand this illness & target resources to those most impacted. @RepDonBeyer & I want @CDCgov to publicly report this data because that which gets measured gets done.

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Lisa McCorkell

@LisaAMcCorkell

1 year

🚨Your input is needed!🚨 How should the US government define #LongCovid ? Take this questionnaire by May 12, 2023:

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Lisa McCorkell

@LisaAMcCorkell

3 years

We're published! Loved writing this article with the @patientled team on our story, the history and value of patient-led research, and what gaps still exist in care and research for #LongCovid patients. Check it out:

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Lisa McCorkell

@LisaAMcCorkell

7 months

4. Accelerating biomarker discovery, while moving forward with drug development and clinical trials 5. Investing in experimental medicine 6. Linking research efforts to coordinated clinical programs

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Lisa McCorkell

@LisaAMcCorkell

11 months

This data came from *during* the public health emergency. These issues will only get worse now that many flexibilities are ending. We desperately need more robust & easily accessible financial assistance programs to support disabled people & address social determinants of health

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Lisa McCorkell

@LisaAMcCorkell

1 year

Cofounding @patientled out of @itsbodypolitic w/ @GinaAssaf , @herlifeinpixels , @ahandvanish , & @AthenaAkrami has been a labor of love & desperation. With the help and guidance of so many, we’ve created an org & model of work that centers disabled people and prioritizes health, 2/

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Lisa McCorkell

@LisaAMcCorkell

1 year

Unspecified includes people with Long COVID. Future iterations of the model will aim to refine this - that will include doing analysis using the updated RECOVER symptom survey, adding in tests/clinical features and ultimately biomarkers… 3/

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Lisa McCorkell

@LisaAMcCorkell

2 years

Incredible webinar happening now on COVID & #LongCovid 's socioeconomic impact on Latino families and what policies we need to ensure economic recovery:

The socioeconomic consequences of COVID-19 for Latino families | Brookings

On October 19, the Race, Prosperity, and Inclusion Initiative at Brookings hosted a webinar about the impact of long COVID-19 on Latino communities.

www.brookings.edu

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Lisa McCorkell

@LisaAMcCorkell

1 year

6. Doing all of this while practicing radical self-care. Check out @offkiltershow for a great series on this. 7/

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Lisa McCorkell

@LisaAMcCorkell

1 year

Repro health is overlooked in medicine; its impacts in #LongCovid & associated conditions are no exception. As someone with PMDD as part of my LC, this topic is so important to me, & I am so happy this paper is out in the world & am hopeful it will lead to more attn on the issue

Patient-Led Research Collaborative

@patientled

1 year

1/ New @patientled paper alert! Reproductive health issues after COVID are well known among #LongCovid patients but are not adequately studied. For @FrontRehSci , we reviewed studies on repro health impacts of Long COVID & associated conditions in women:

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Lisa McCorkell

@LisaAMcCorkell

5 months

Rest easy, Beth. Your legacy will live on. I’m proud of you, thank you, I love you, and I’ll miss you. #BethMazur /6

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Lisa McCorkell

@LisaAMcCorkell

1 year

Please follow this awesome self-experiment by @ales_frost & @chydorina , & support if you are able! They're looking at how modifying the microbiome affects ME/CFS based on their own experiences of a temporary remission & subsequent improved baseline.

RemissionBiome MECFS/LongCovid Self-Experiment

@remissionbiome

1 year

Hi👋This account is run by Tamara @chydorina + Tess @ales_frost We’re scientists + patients (yes, you can be both!), who improved from severe #MECFS after taking antibiotics Our aim w/ @remissionbiome is to look at how modifying the microbiome can shift the baseline in #MECFS

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Lisa McCorkell

@LisaAMcCorkell

1 year

Please join me in any and all of the above that you can! Here are specific actions to take over the next few days as we honor and recognize so many LC anniversaries: - Participate in #LongCovidAwarenessDay tomorrow! See @LCawarenessInt for more 8/

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Lisa McCorkell

@LisaAMcCorkell

2 years

Basic needs programs like SNAP & TANF have often failed to adequately serve all disabled people. As the disabled population continues to grow due to #LongCovid , it is critical for policymakers to strengthen these programs ASAP. New @CLASP_DC brief:

Advancing Disability Equity and Access in TANF and SNAP for People with Long COVID | CLASP

This report recommends concrete actions policymakers and program administrators can take to improve accessibility of public programs for people with Long COVID and other disabilities.

www.clasp.org

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Lisa McCorkell

@LisaAMcCorkell

2 years

The incredible Jen Brea - founder of @MEActNet , @unrestfilm filmmaker, and patient advocate - is missing. Please share widely. Last seen at Miami International Airport on June 15. Email findjen @meaction .net or call 805-876-4509 with any info.

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Lisa McCorkell

@LisaAMcCorkell

2 years

@zeynep @ShaneyWright @LeylaDAsadi @walidgellad @bobepidemiology Patients shaped the current #LongCovid definition; we ask you to respect it. Instead of questioning the numbers, which align w/ patient experience, please focus on advocating for policies that support patients & be part of the movement to reduce stigma around disability.

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Lisa McCorkell

@LisaAMcCorkell

5 months

Options to submit a comment - 1. Post one here: 2. Email acso.pra @census .gov & reference the American Community Survey and the Puerto Rico Community Survey in the subject line of your comments Sample language:

Census Bureau Comment due 12/19

docs.google.com

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Lisa McCorkell

@LisaAMcCorkell

3 years

I am so incredibly grateful to @RepAnnaEshoo for hosting the hearing on #LongCovid today and for providing a platform for patients to be heard. And a huge thank you to @RepDebDingell for highlighting the importance of patient-led research & @patientled 's work ✨

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Lisa McCorkell

@LisaAMcCorkell

8 months

@Dakota_150 @KateMurrayMPH @ahandvanish @loscharlos @julialmv Only 7% of providers are very confident diagnosing #LongCovid and 4% are very confident treating it. 82% think it is important to increase research funding for #LongCovid .

Poll: Doctors Feel Unprepared to Treat Long COVID - de Beaumont Foundation

More than 3 in 4 doctors (78%) think Long COVID is a problem, but few are prepared to diagnose or treat it. Training, research, and education are needed.

debeaumont.org

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Lisa McCorkell

@LisaAMcCorkell

1 year

#LongCovid orgs to support: @itsbodypolitic : @patientled : @MEActNet : @MarkedByCovid : @C19LH_Advocacy : @LongCOVIDnetwk : /end

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Lisa McCorkell

@LisaAMcCorkell

1 year

A big thank you to all of the patients who have shaped science (& shaped me) - together, we are changing the world. Naming a few of them here: @chiluvs1 @ItsAngInLA @K_Bishof @netiamccray @leticiasaurus @TheCrankyQueer @YochaiReemMD @Robotistry @fi_lowenstein @AlisonSbrana 5/

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