Utah COVID-19 Long Haulers

Raising awareness for #longcovid #longhaulers.
Advocating for Utah COVID Long-Haulers, those left with post viral symptoms following COVID-19. #FBLC

[Utah COVID-19 Long Haulers @UTc19LongHaul]

Preprint on phenomenal new Long COVID study!!
With a 44 page PDF containing SO much Long hauler data....symptoms totaled 205, and affected at least 10 body systems!! Thanks for all your hard work @patientled!!

[Athena Akrami @AthenaAkrami]

And here is the preprint: "Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact"

Special thanks to thousands of you who participated in our study on #LongCovid.

a thread 🧵 0/

https://t.co/uPmvuBBFRg

[Dr Elisa Perego @elisaperego78]

Now, Covid/#LongCovid is among the most studied diseases in medical history. We know too well what SARS-CoV-2 is capable of. It was also clear we were walking into disaster for public health, whether Covid wasn't contained, already in 2020. Policymakers must adhere to reality

[Katie Bach @kathrynsbach]

Latest piece: Ludmila Praslova, Beth Pollack, and I wrote a guide on #LongCovid accommodation and #inclusion in @HarvardBiz latest #bigideas issue. No shock: inclusive practices that are good for chronically ill employees are good for everyone. https://t.co/0rjxV1rhDl

[Morgan Stephens @morganstephensa]

COVID is surging again. I’m here to speak from my own experience: mild infections can lead to Long Covid, REST. Rest longer than you want to. Rest when it gets boring (it will). Rest when you think you’re recovered. After you’re stable for some time, ease back into life. 🧵🧵

[Utah COVID-19 Long Haulers @UTc19LongHaul]

@loscharlos @K_Bishof @BerlinBuyers @sophsoph_psd We were on billboards, the sides of busses, and tv and radio commercials. This was in like 2021.

[Utah COVID-19 Long Haulers @UTc19LongHaul]

@loscharlos @K_Bishof @BerlinBuyers @sophsoph_psd I participated in an awareness campaign with salt lake county health dept. overall, It was an awareness campaign for masking and early on but they used a couple of us dealing with Long Covid in it as a reason to mask. But we still got our message out.

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

Missing is one of the most common, most disabling and most undiagnosed and untreated neurologic manifestations of PASC/#LongCovid:

📢 #Dysautonomia - which is present in about 70% of patients with LongCovid.
‼️ Read our consensus guidance statement on post-Covid autonomic dysfunction and how to diagnose and treat it here: 👇
https://t.co/by7oGi4O7U

@MedscapeNeuro #MedTwitter #NeuroTwitter @Dysautonomia

[COVID-19 Longhauler Advocacy Project @C19LH_Advocacy]

MAJOR NEWS

HHS Awards $45 Million in Grants to Expand Access to Care for People with #LongCOVID.

Today, the U.S. Department of Health and Human Services (HHS), through the Agency for Healthcare Research and Quality (AHRQ), announced nine grant awards of $1 million each for up to 5 years to support existing multidisciplinary Long COVID clinics across the country to expand access to comprehensive, coordinated, and person-centered care for people with Long COVID, particularly underserved, rural, vulnerable, and minority populations that are disproportionately impacted by the effects of Long COVID.

The grants are a first of their kind. They are designed to expand access and care, develop, and implement new or improved care delivery models, foster best practices for Long COVID management, and support the primary care community in Long COVID education. This initiative is part of the Biden-Harris Administration's whole-government effort to accelerate scientific progress and provide individuals with Long COVID the support and services they need.

This work is responsive to the National Research Action Plan (PDF, 1.3 MB), a broader government-wide effort in response to the Presidential Memorandum directing the Secretary for the Department of Health and Human Services to mount a complete and effective response to Long COVID. Led by Assistant Secretary for Health Admiral Rachel Levine, the Plan and its companion Services and Supports for Longer-term Impacts of COVID-19 (PDF, 1.6 MB) report lay the groundwork to advance progress in the prevention, diagnosis, treatment, and provision of services for individuals experiencing Long COVID. In July of this year, to provide a more focused and cross-collaborative effort for Long COVID, HHS announced the establishment of the Office of Long COVID Research and Practice to address the growing need for Long COVID research, resources, and coordination of efforts across multiple governmental agencies.

https://t.co/uEwT5O1Z0s

[Billy Hanlon @bhanlon15]

"Q&A with Lisa McCorkell, Long COVID researcher and patient"

H/T @LisaAMcCorkell @patientled

https://t.co/lIHGMCdlpW

[Patient-Led Research Collaborative @patientled]

COVID reinfections are common but little is known about their impact on people's health. With support from Balvi, @patientled's reinfections team has designed a survey to address this pressing gap in public health knowledge. #LongCOVID

https://t.co/oZHtucyn2a

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[Eric Topol @EricTopol]

A review of the complex immune system dysregulation in #LongCovid
https://t.co/a1eTR4mUnQ
@eLife by @jalees_rehman and colleagues

[Unrest @unrestfilm]

Unrest is now available for free, on YouTube. Watch now and share with your friends and family! https://t.co/MmhsD2v8Nn #timeforunrest

[Shivani Chaudhry @shivani_chdhry]

What an incredibly powerful art installation in recognition of the #MillionsMissing from their lives because of Myalgic Encephalomyelitis (ME).

Heartbreaking,
breathtaking,
gut-wrenching,
all at once. 💔

Kudos @MEActNet

[Mark Faghy @DrMark_Faghy]

A much needed resource and one that will support #LongCovid patients in their rehabilitation but this still needs to tailored and highly personalised.

Enjoyed working with such a great group behind the scenes on this one!

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

A 10-min stand test is a cheap and easy test that should be performed on every #LongCovid patient to identify whether #Dysautonomia is present. Pictured is a @Jacobs_Med_UB med student who shadowed me today doing the test. I am hoping she and others become interested in #autonomic disorders: with millions of people experiencing #LongCovid and post-Covid #Dysautonomia, we are in dire need of MDs trained to do this work. However, there are very few of us in the country who can even show the students what and how we do it. Adding autonomic disorders to the medical education curriculum and residency training in #neurology, #physiatry and primary care is the key!

#MedEd #MedTwitter #NeuroTwitter #POTS #MECFS #Covid19

[Putrino Lab @PutrinoLab]

Calling all postdocs! This is a great opportunity and I’ll be excited to welcome successful applicants into our center! Must be willing to live in NYC and be passionate about finding answers for folks with #LongCovid, #MECFS, #Lyme and other complex chronic illnesses!

[Prof Nisreen Alwan 🌻 @Dr2NisreenAlwan]

We've a new paper out (preprint-not peer reviewed yet). Using @ONS CIS data the odds of developing #LongCovid in those>16y at 12-20 wks after 2nd compared to 1st covid infection is reduced by 28% but it still occurs in 24 people out of 1000 after 2nd inf.
https://t.co/X9yrl52Ooi

[Ed Yong is not here @edyong209]

I also look at why this problem persists--why the marginalization of long COVID and related conditions morphs into new guises but never goes away. They're mirrors on our society, and the image they reflect is deeply unflattering. 4/
https://t.co/Baz81cRDBg

[Hannah Davis @ahandvanish]

With the FDA public meeting for #LongCovid coming up tomorrow, it's a good time to think about: what kind of drugs *could* we trial for #LongCovid?

The possibilities are honestly endless! Here is a sampling (absolutely not inclusive):

[Hannah Davis @ahandvanish]

Please take this, this is to gather meaningful initial information in a very understudied area of #LongCovid research!