Thread by @ahandvanish

Happening now!!!

https://twitter.com/LisaAMcCorkell/status/1387095339518226437

from the CDC: "Clinical guidance is also informed by patient groups with whom we share the information" - that's @patientled and @itsbodypolitic!

from @NIHDirector - "11-15% of kids can end up with #LongCOVID, which can be devastating in terms of things like school performance. This is separate from MIS-C"

the livestream is having technical difficulties...

from NIH: finding good imaging is crucial! especially neuroimaging!

CDC: using electronic health records are biased - because someone has to enter the symptoms. can look at medicines prescribed, but surveys are the better way to do that, and correlating responses with the imaging as NIH mentioned before.

NIH: "the risks of #LongCOVID have not been appreciated by the public and particularly by young people"

.@USRepKCastor asks if other illnesses cause long-term effects and can't we build on the research done on those - the right question!!

NIH director is responding that other coronaviruses do, but almost every virus does to varying prevalences: vox.com/22298751/long-…

earlier comment from CDC: as many as 2/3 patients have #LongCOVID.

how to join a #LongCOVID research trial as a patient? go to clinicaltrials.gov!

(also every #LongCOVID support group I know of regularly provides research opportunities, including @itsbodypolitic)

.@RepSarbanes: "We may be seeing more cases of disability coming forward, relating to #LongCOVID. We need to start building those models."

https://twitter.com/LisaAMcCorkell/status/1387452910640898057?s=20

.@PeterWelch "There is a challenge with BIPOC communities and getting the data we need, and that compromises our ability to come to conclusions. Do you agree there has to be additional efforts to get data in these communities?"

CDC: yes, these are the most impacted populations. this includes incarcerated people.

.@RepLarryBucshon asks about the mechanism behind loss of smell (his daughter has had this since November)

CDC: likely neurological not olfactory nerve damage, some are recovering their sense of smell through smell therapy.

NIH is testing anticoagulants (!!) but overall the plan is to go beyond collection etc into treatments.

asked about other treatments: IVIG, maybe steroids, only if this is autoimmune. but they don't know the cause yet, may be clotting-related, so hard to figure out treatments.

do vaccines help #LongCOVID patients? NIH director mentioned earlier the small study showing 23% felt better compared to 15% of controls, but that more data is needed. important to explore that cohort (but also important to know this is not a cure for everyone)

.@DrNealDunnFL2 met with Long COVID patients (I believe he's mentioning @Long_COVID_All and @C19LH_Advocacy here?) and says that research on ME/CFS can help shed light on #LongCOVID - very true!

he asks about T cell testing but the response is that there is disagreement on how to do this. (I agree - right now current commercial T cell tests have been tested on biased cohorts, including disproportionate men, older, and hospitalized patients)

CDC: structural racism...is driving the inequities in this pandemic. this is an opportunity to change that.

a critical thing is to listen to these communities.

.@RepRaulRuizMD: underserved populations must not be left behind as we study, research, and treat #LongCOVID. post-covid clinics have barriers! (yes!!!)

CDC: we need a model of community health workers who are trusted by the community

@RepRaulRuizMD: Hispanic, Black populations will be more likely to have #LongCOVID, specific efforts need to made to target these communities 💯

.@RepRaulRuizMD is on fire. "MIS-C: up to 3 out of 4 children are in Hispanic, Black populations. what are the rates of #LongCOVID in these children? what is being done to treat MIS-C in these populations?"

NIH: part of the research will be on what lab tests should be done.

HLA is asked about, "HLA will likely be one of them."

.@RepDebDingell with a PSA:

50% of Michigan has had at least one vaccine dose, but their ICUs are filled, ICUs are including children, they are burying healthcare workers committing suicide. "COVID fatigue leads to this happening."

from CDC (also mentioned by NIH but during the livestream failure): the research done on #LongCOVID will benefit ME/CFS

.@RepDebDingell on people still being disbelieved.

from me personally: Rep. Dingell, the most important thing would be to not require lab confirmed testing, which disproportionately affects women and marginalized communities:

https://twitter.com/ahandvanish/status/1387140392794079236

.@RepAnnieKuster talking about a 34-year-old #LongCOVID patient who got sick a year ago, who now has to choose every day between taking a shower and making dinner. (this is all of us!)

A mention of treating brain fog as if it's a concussion

https://twitter.com/ahandvanish/status/1379272988328132608

A mention that no other Republicans are joining, the remainder are Democrats

It is wild how many people on this call are referring to someone in their immediate circle who has #LongCOVID.

.@NIHDirector: 32 million have been diagnosed. Even if it's 10% who go on to develop #LongCOVID (current numbers are closer to 14% for the lowest estimate), that's over 3 million people with this illness.

"I can't overemphasize how serious this is."

NIH: almost no one with #LongCOVID has one area of the body affected, we need centers that involve multiple specialities, can't pass patients around from specialist to specialist.

On kids: "brain fog is likely a neurocognitive issue"

.@RepLoriTrahan is talking about @itsbodypolitic admin and advocate Lauren Nichols! including the shingles, seizures, stroke, and vision loss she experienced from #LongCOVID

.@RepLoriTrahan: can NIH leverages its understanding of ME/CFS to better understand #LongCOVID?

.@NIHDirector: [a lot here that I was too tired to type], we hope we will be able to offer something more significant to those individuals who have been suffering for years

I will say there is still a misunderstanding that ME/CFS is "just fatigue", it is a multisystemic illness with severe neuroimmune components and ME researchers are the best to study those overlaps in Long COVID as well

.@RepFletcher on how we can get rapid clinician and public education, especially around being believed? how to teach people how to recognize symptoms?

CDC: first we need to get doctors to recognize that this is real, and to get patients to seek care

last two questioners and then the panel with @LisaAMcCorkell and @chiluvs1 is next!

.@janschakowsky with a crucial question: are people who have #LongCOVID not only going to be able to access care, but going to be able to afford this??

(short answer as a patient: not currently!)

They are talking about making a clinical case definition as important to this answer, but I feel like I'm missing something (I don't think anyone has had treatment related to #LongCOVID, even with COVID documentation, been reimbursed?)

.@USRepMikeDoyle last up: his son, young athletic wrestler, is a long hauler in his 4th month, has had to take work off.

Sorry .@RepKathleenRice is up last! talking about the recent CDC study - she is asking about the limitations of this study and limitations of #LongCOVID research in general.

findings: in non-hospitalized patients, 68% sought care between 1 to 6 months after COVID. this is very unusual. 38% of those sought care with a specialist related to COVID.

this finding was evenly distributed amongst groups.

limitations: using medical records requires a lot of inference, misses the patient's journey and experience. it does tell us that we're seeing patterns that are worrisome.

CDC: it's important to overenroll underrepresented groups in research!

First patient is a young runner in her early 20s, diagnosed in July 2020. Had pneumonia, pericarditis, had inability to watch screens, read books, still unable to work.

Next up is @chiluvs1 who is just so goddamn amazing.

"#LongCOVID is another weight to what Black people have already been carrying. I lost my vision for 5 months because doctors didn't believe me."

She brings up Leiah Jones, the Black #LongCOVID patient who wrote her own obituary before dying of Long COVID.

I can't do justice to her testimony in partial quotes - see her full testimony here:
docs.house.gov/meetings/IF/IF…

.@LisaAMcCorkell killed it!

"I was told by my doctor to isolate, and within two weeks, I’d be recovered. A month later, I was in worse health than in that initial stage."

"In our recent paper, 92% of respondents were not hospitalized, but still experienced symptoms in 9 out of 10 organ systems on average. We found that patients in their seventh month of illness still experienced 14 symptoms on average. The most commonly reported were fatigue,

post-exertional malaise, and cognitive dysfunction. In fact, 88% experienced cognitive dysfunction and memory loss impacting their ability to work, communicate, and drive; we found that this was as likely in 18-29 year olds as those over 60. Lesser-known symptoms include tremors,

reproductive changes, months-long fevers, and vertigo. Over two-thirds require a reduced work schedule or cannot work at all due to their health condition. 86% experience relapses, where exerting themselves physically or mentally can result in a host of symptoms returning."

"When we know that not everyone had access to COVID testing, that PCR tests have false negative rates of 20-40%; that antibody tests are more accurate on men and people over 40; and that multiple studies have shown that there is no difference in symptoms between those with a

positive test and those without, why are we preventing people who are dealing with real symptoms from accessing what they need to survive?"

See her amazing testimony here! energycommerce.house.gov/sites/democrat…

Dr. Jennifer Possick from a #LongCOVID clinic. "We commented on how it was hard to tell those recovering from mild COVID apart from those recovering from severe or ICU COVID."

Dr Steven Deeks from a different #LongCOVID clinic: "we are seeing the vaccines are making patients worse."

#LongCOVID is going to made up of several phenotypes (though too early to make those assumptions specifically)

https://twitter.com/ahandvanish/status/1375857631793938433

Dr. Deeks brings up the fact that #LongCOVID patients are facing a culture of skeptical, incurious doctors, particularly when there is too much focus on depression/anxiety symptoms and not the others.

.@LisaAMcCorkell makes the point that mental health treatment needs to be available, but as a *secondary*, not primary, treatment for #LongCOVID.

Dr. Jennifer Possick talks about how at their #LongCOVID clinic, their patient population is shifting younger and younger. Also mentions they were primarily young Black patients.

Thank you SO much to @RepDebDingell for being so appreciative of the Patient-Led Research Collaborative (@patientled), for emphasizing that PLRC should continue to work with the NIH and others, and allowing @LisaAMcCorkell to tell Congress our story!

.@chiluvs1 is talking about the racism embedded in the medical care system, and how medical professionals need to look at themselves.

.@RepRobinKelly asks how providers can do better, @chiluvs1 asks for them to focus on better documentation, including the patients' perspective

"It is my hope that our narratives, our experiences, are documented into those notes. It makes our lives a little easier.

I face challenges from my employers, I was dismissed from NIH research, because of insufficient notes." @chiluvs1

On stigma: patient groups (like @itsbodypolitic and @patientled) raising awareness has been really crucial. #LongCOVID patient voices are crucial in everything. But #LongCOVID stigma still remains.

It's wrapping up. Incredibly well done @LisaAMcCorkell and @chiluvs1, and so much love to both of you from the whole #LongCOVID community! ❤️