Day 2 of the NIH #LongCovid conference.

First up w Dr. Carlos del Rio on social determinants of health, race, and ethnicity in #LongCovid

-the pandemic has exacerbated health inequalities
-this is not new, happened with H1N1, HIV
-structural racism is the driving force

See here for the links: https://twitter.com/ahandvanish/status/1334882220788604931?s=20

Top points from the heads of each #LongCovid breakout

Neurological - we need to better understand

1. Encephalopathy, cognitive/attention deficits
2. Vascular-mediated issues, ischemic & hemorrhagic
3. Neuropsychiatric illnesses (careful not to focus on delirium)
4. Dysautonomia

Neurological:

1. Consensus is that there's not virus in the brain
2. Endothelial dysfunction is a very important part of the neuropathology of #LongCovid
3. Lots of studies being done
4. Need to consider the 'relapsing' component

Cardiovascular:

-Thrombotic/myocardial/vascular/autonomic dysregulation
-Biomarkers that might predict #LongCovid
-Important not to exclude Long COVID folks in short term studies
-Chest pain is a common symptom but what is the underlying mechanism? Can have many causes

Cardiovascular:

-Important not to exclude folks as only having PTSD/anxiety
-Racial disparities in acute COVID can exacerbate pre-existing disparities
-Recommendations for exercise
-Family/community support

shout-out to @itsanginLA for representing @itsbodypolitic here!

Cardio:

-lots of exercises assessments: HRV, 6 minute walk, stress test, CPET, FDG-PET esp for myocarditis
-retinal imaging as microvascular tool
-menstrual cycle needs to be studied
-gender, racial, ethnic biases that need to be addressed
-patient representatives are important

Pulmonary:

-everything is cross-cutting, nothing is only pulmonary
-need a definition, post-COVID ignores mechanisms, we need to use the same language
-full spectrum of COVID patients needs to be included (asymptomatic to ICU)
#LongCovid

Pulmonary:

-social determinants of health are usually mentioned at the end, but need to be built in in the beginning
-need standardized post-COVID clinic practices
-need engagement and education for the public
#LongCovid

Pulmonary:

-patients have severe, life-altering dyspnea
-need to study treatments instead of making them up
-patients need to be part of research, need to raise awareness of research opportunities

#LongCovid #LongHaulers

Treatments are going to need to be iterative and constantly evolving (we've come a long way from "take some Vitamin D and don't go to the hospital", which was the advice for the first #LongCovid wave!)

Renal/GI/Metabolic:

Session starts out with a big shout out to @itsbodypolitic rep Lauren Nichols from the head of the breakout session!

-diverse population with kidney disease
-diverse COVID-related presentations: AKI, thrombotic microangiopathy, glomerulopathy
#LongCovid

Renal/GI/Metabolic:

need to be studied:
-impact of genetics
-various comorbidities, social determinants of health
#LongCovid

GI:

needs to be studied:
-diarrhea, consistent and continuing
-gut permeability changes
-brain-gut axis
-GI motility issues
-gut microbiome/dysbiosis
-role of coinfection
#LongCovid

GI:

Big needs:
-standard nomenclature
-study viral persistence in GI mucosa and stool, and significance!!
-study changes in gut microbiome including virome
-surveillance of recovering cohorts

#LongCovid

Questions re diabetes:

-Type 2 has worse outcomes than 1, why?
-is there T1 diabetes onset after COVID?
-in new diabetes in patients who didn't have it pre-COVID, is it transitory? a risk for future diabetes?
-does infection of the pancreas contribute to diabetes?
#LongCovid

(I am capturing about a quarter of all these, see the recording when it's out for the full question sets)

#LongCovid

Immunologic/rheumatologic:

-prospective cohorts are needed
-virus needs to be measured in saliva, stool for viral persistence
-host genetic factors need to be studied
-understanding other long-lasting viral sequelae is important (EBV, CMV, RSV)

#LongCovid

Immunologic/rheumatologic:

-patient advocacy groups like @itsbodypolitic are vital to partner with
-biomarkers are important, better biomarkers definitions
-what is the relation of viral duration/shedding with the long sequelae
-viral persistence goes across groups

#LongCovid

Pediatric:

-what is known about #LongCovid in children?
-"We think #LongCovid is a tremendous term."
-children are rarely tested, so that is an issue
-we don't know how many kids have issues, outside of the cardio population/those that need to be hospitalized

Pediatric:

-studying cognitive effects in children is harder, often working through a parent proxy, especially difficult with other languages
-non-MISC #LongCovid sequelae need to be evaluated
-mismatch in those able to take care of MISC vs ME/CFS
-vaccine safety in kids?

Answers to a few things #LongCovid patients worry about:

1. An HIV researcher says Long Covid isn't/can't be like HIV. Viral persistence isn't ruled out, but would look/act different.
2. Direct infection of the brain looks unlikely.
3. Most agree this is endothelial dysfunction.

Final comments from Dr. Adimora:

-"The patient community is a vital partner and engaged scientifically" @itsbodypolitic @patientled
-there is still significant stigma and struggle for patients to be believed
-structural racism is a critical force behind #LongCovid disparities

- #LongCovid comprises a number of diseases and manifestations
-what is the role of antivirals, immune modulators, anticoagulation in these sequelae?
-will sequelae differ in people who get different vaccines?
-how can we ensure racial equality in treatment?

Final comments from Dr. Erbelding:

-we need more prevalence studies!
-acute severity may not predict #LongCovid severity
-research needs to cover full spectrum of COVID patients (asymptomatic to severe, PCR-negative AND PCR-positive, seronegative AND seropositive)
-international collaboration is essential