LISTEN Café: June 2024

June 06, 2024

Information

A discussion on a recently published article on long COVID recovery in the United States.

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00:00We think
00:03even these simple descriptions,
00:04we think have value in teaching.
00:07Even, you know, clinicians,
00:08physicians who may encounter people
00:10not have any place to look in the
00:12literature that tells him, you know,
00:14that that these people are not unique.
00:16In fact, they're, you know,
00:17they're not alone in any by any means
00:19and that there are a lot of people
00:21who are experiencing similar things.
00:23So for example, Tiana,
00:25who was medical student working
00:27with us for a long time,
00:28had written a paper on
00:30vibrations and tremors.
00:31We pre printed it, believe it or not,
00:33we sent it to a medical journal, PLOS,
00:34and they sat on it for like 9 months.
00:37I, I don't know what was going on there.
00:39So we had another journal that was interested
00:41in long COVID and we sent it there,
00:43American Journal of Medicine,
00:45very good journal.
00:46And they, they rapidly accepted
00:48it and we'll be publishing it.
00:50So, you know,
00:51sometimes we're running into headwinds by,
00:54by some of the journals.
00:55I don't know whether it's their
00:57attitude toward this condition or
00:58they're just generally dysfunctional,
00:59but it just can take a long
01:02time to get things going.
01:04We meanwhile,
01:06I,
01:06I've always thought that one of the
01:08major ways that we're gonna make
01:09progress is through this association
01:11with Akiko Iwasaki in her lab.
01:16Bernali by Chargi is with us today who's
01:20who's been with us from the beginning,
01:21who was just an extraordinary
01:23researcher and has been doing an
01:25amazing job so devoted to this.
01:28And you know,
01:29so there's a a a lot of work still
01:31going on with trying to combine
01:33the survey responses with the
01:35deep phenotyping that can go on
01:37in a lab that lab's doing so that
01:39that's really where I think some
01:41of the insights about mechanism
01:42can come from that can then lead
01:45to diagnostics and therapeutics.
01:46There's also for those of you
01:49we have a kind of a mixed group,
01:50of course,
01:51always between people on COVID
01:54and post vaccination syndrome.
01:56The the post vaccination descriptive
02:00study is in on preprint.
02:04It the journal vaccine looked like they
02:08were gonna take it pretty rapidly,
02:09but then now have been dragging
02:11their feet on it.
02:12So we're continuing to think they've got it.
02:15We they have our response that
02:16they'll respond to that soon and
02:18it'll come out in a journal.
02:19Just for those of you listening.
02:21The the distinction is this.
02:22The preprints are useful in giving
02:25everybody access to the article
02:27In peer review.
02:28We get comments and we tend to
02:29make tweaks in the article.
02:31Honestly, in general in,
02:32in our experience hasn't changed
02:34it fundamentally.
02:36Article establishment will view
02:37articles that have come out in
02:40journals a little differently
02:41than they will peer preprints
02:43because of the peer review.
02:45It gives it more credibility and it
02:49means when we get this out to doctors,
02:50or if you point doctors to these
02:53journal articles, you know,
02:54they have a little more force.
02:55And that's why we're,
02:56we don't stop with the preprint,
02:58even though that's,
02:59that's kind of the main thing.
03:01But we try to continue to get
03:02it into the journal article.
03:03So there's a that post vaccination
03:05syndrome is coming out.
03:06We have another paper that compares post
03:09vaccination syndrome and long COVID to
03:11show that there are some similarities,
03:12but also some differences,
03:14which are suggesting that
03:16mechanisms might diverge.
03:17And then there's a paper analysis.
03:19And ultimately there will be a paper
03:21that we will pre print and seek to the
03:23my journals that we're now he's working on,
03:24which is looking at post
03:26vaccination syndrome in in the lab,
03:28looking at at this deep immune phenotyping,
03:30trying to draw some inferences about again,
03:33underlying causes.
03:36And we're going.
03:37So what are we doing going forward?
03:39First of all,
03:40we have finished the trial of Paxlovid
03:43in long COVID and are finishing up our,
03:46our kind of, there's a,
03:50a part that where you're assembling all the
03:53data that's accepted in into the trial and,
03:56and organizing it so that the FDA and other
04:00regulatory bodies will feel that it's,
04:03it's up to snuff.
04:04So that takes, you know,
04:06a couple months to get everything organized.
04:08We're in that process.
04:09I would say this by the end of July,
04:12we, we should be at a point where we,
04:15we'll know more about, you know,
04:17what that trial showed and hopefully we
04:19can get that out as quickly as possible.
04:22There's also,
04:22we will talk to you about a
04:24study we wanna do today.
04:26Rishi Shaw,
04:27who's a Yale undergrad,
04:29I believe it or not,
04:30a really remarkable individual,
04:32smart and has devoted a lot of time to
04:35trying to derive insights from the data
04:37that exists around around long COVID.
04:39It's gonna talk to you about
04:41recovery after long COVID.
04:42We're also gonna launch within,
04:44within listen an,
04:45an assessment to see who's gotten better,
04:48who's gotten worse,
04:49and can we draw any conclusions from the
04:51experience of people who've had and listen.
04:54And then we're also going to be launching a,
04:56a cohort of people,
04:59particularly with POTS and long
05:01COVID and post vaccination syndrome.
05:03That will be combined with a lab
05:05study that Akiko's lab will do
05:07to try to learn more about that.
05:09Again,
05:09if I had my druthers,
05:10we'd be doing a lot more trials.
05:13Trials take resources and you
05:14know that that's one of them,
05:16one of the I guess limiting factors.
05:20I'm hopeful that when we published
05:22the the Paxlova trial that we will
05:26show the world how we can work in a
05:29very participant centric trial and
05:31and do it relatively quickly by the
05:35measures of what trials usually take.
05:37We're,
05:37we're going much faster than what
05:38like the NIH trials are going
05:40and for a fraction of the cost.
05:42And so then maybe people will,
05:44if, even if we don't do it,
05:45we want to hand out as much as possible.
05:47This is how it can be done.
05:48We want as many people to learn how to do it.
05:50I see Kirk asked if we're going to
05:53let the PAX LC participants know which
05:55cohort they're into and that that
05:56is also going to be coming up soon.
05:58We will be able to do that 90
06:00days after the last person.
06:01So we're going to try to do that
06:03even as we won't say what the
06:06result is yet by that point.
06:08So let me this was just kind
06:09of quick briefing about saying,
06:11you know, we're not stopping.
06:12We'd still stand with you.
06:13We know Kindred is wound down,
06:15but the listen study continues and we're
06:17going to try to be a source of information.
06:19David Petrino is going to do a a Listen Cafe.
06:23This is again, you know,
06:25something for just for listen participants.
06:27And we're going to try to
06:29keep up the education,
06:30keep up the communication and try to be,
06:32you know, worthy of the trust that
06:33you've put in us to try to move forward.
06:35I know, again,
06:36some of you have communicated to me
06:37frustrations that we're not moving faster.
06:40We don't have the answers.
06:41I know we're frustrated too,
06:43which we could move faster or learn faster,
06:45but we're we're doing,
06:46you know, we're trying to still,
06:48we're trying to still move forward
06:49as best we can to,
06:50to stand with the community and
06:52produce knowledge that's useful and
06:54do it with your input, you know,
06:56and the wisdom that you can provide.
06:58Let me hand it over to Heidi next.
07:01And anyway,
07:02just thank you all for sticking
07:04with with the Listen study.
07:05And we're always open to suggestions,
07:08comments, ideas that you guys have,
07:10Heidi.
07:11Thanks, Harlan. So first of all,
07:14I'm gonna be speaking to you about the
07:17transition from Kindred over to Listen.
07:21For those of you that haven't met me,
07:23I am Heidi Braden and I'm a research
07:25affiliate with the Listen study.
07:27I also previously worked for Hugo,
07:30so some of you got to know me when
07:32I was over there and primarily have
07:35helped people with their connections,
07:37which I am going to speak to you
07:39just a little bit about today.
07:41But first, I wanna start by letting
07:43you know how much we wanna express
07:45our appreciation to all of the
07:47participants who had previously joined
07:49Kindred and in the LISTEN study.
07:52Your partnership is so crucial to this
07:55very important research and we are so
07:59excited to continue working with you.
08:01So I wanna let you know that current
08:04listed members will be receiving an
08:06e-mail notification within probably
08:07the next few weeks and that's gonna
08:10outline instructions on how to log
08:12into the Hugo connection portal,
08:14which is called Hugo Connect.
08:16The tool and the process of
08:18connecting are essentially the same,
08:20but how you access the tool has changed.
08:24So I'm going to be sending out
08:26a step by step on that soon,
08:28within hopefully two to three
08:31weeks at the most.
08:33If you already have your medical
08:36records connected, that is great.
08:38Of course,
08:39sometimes even those successful connections,
08:41they can expire or otherwise stop working.
08:44So it's going to be real important to stay
08:46on the lookout for the instructions e-mail.
08:49If you haven't connected
08:51your medical records,
08:52I encourage you to do so.
08:55So please stay tuned for that
08:57information that is going to be
08:59coming to you in your e-mail.
09:01Lastly,
09:01I want to let you know that we are
09:04currently working on creating a
09:05website for new listen participants
09:08to join the study,
09:09which is pretty exciting and we
09:11expect that to be ready within
09:13the next couple of months.
09:15So now I'm going to turn it over to
09:18Rishi Shaw and he will be discussing
09:21the long COVID recovery research
09:23that he has been working on.
09:25So thanks again and can't wait to move
09:28forward and work with you even more.
09:31Take care
09:45Ricci. There you go.
09:54Hi, sorry I was in a host
09:55that wouldn't let me unmute,
09:56but thank you. Hi everyone.
10:00I'm Rishi. I'm a student at Yale
10:02and I've been working with the
10:04Listen project for about a year now.
10:06And today I want to talk to everyone
10:08about a project that we recently
10:10conducted titled Factors associated with
10:12long COVID Recovery among US Adults.
10:15Before I start talking though
10:17about that project,
10:18I want to preface this discussion with a
10:22project that's already been conducted.
10:23And so some of you may have attended a
10:25CAFE in March and where another student,
10:28Regina, presented a project using
10:30national survey data to assess
10:33what are factors associated with
10:35developing long COVID.
10:37And from that study that Regina LED,
10:40we found that non Hispanic Asian Americans,
10:43non Hispanic Black Americans,
10:45and individuals with an educational
10:47attainment of more than high school
10:49were less likely to develop long COVID.
10:52Those that were older than 35 years or
10:55greater than or older than 35 years,
10:57had identified with female gender or
10:59reported moderate or severe symptoms
11:01during the acute COVID-19 infection
11:03were more likely to develop long COVID.
11:06So as sort of a sequel to that study,
11:08we wanted to try to answer and study
11:10a question that hasn't really been
11:12covered that much in literature,
11:14which is what are factors associated
11:16with long COVID recovery?
11:18Who is recovering?
11:18How many people are recovering
11:20and what are characteristics of
11:22those that are recovering?
11:23And so the question we aim to answer
11:25with this study was what are the
11:28recovery rates from long COVID and
11:30what are the potential predictors
11:32of recovery from long COVID?
11:36And so the data that we used in
11:38this study was the 2022 National
11:40Health Interview Survey or the NHIS.
11:42The NHIS is really robust in
11:44that it provides a nationally
11:46representative sample of the civilian
11:49non institutionalized US population.
11:51And so this survey seems to monitor
11:54the health status, health behaviours,
11:56healthcare access utilization and health
11:58disparities in the United States.
12:00And so this schematic kind of illustrates
12:03the data collection process of the NHIS,
12:06where households are selected and
12:09adults and children within families
12:11are surveyed on a variety of questions.
12:16And so now I'm going to kind of
12:18outline the selection process
12:19that we use to kind of form a
12:21group that we wanted to analyse.
12:23And so in the 2022 NHS,
12:25which is the most recently available data,
12:27there were about 27,000 or
12:30there were 27,651 respondents.
12:31And so the first question we asked
12:34was how many of these individuals
12:36ever reported having COVID.
12:38And so if that question was answered yes,
12:40that was defined by a self reported
12:42doctor's diagnosis for COVID-19 or a self
12:46reported positive COVID-19 test result.
12:48The individual reported either a doctor's
12:50diagnosis or a positive test result,
12:52We define them as having COVID-19.
12:55Among those that reported having COVID-19,
12:58we wanted to see how many
13:00people reported long COVID.
13:01And so individuals that said responded
13:04yes to the question of having ever
13:07having COVID and also a responding
13:10yes to the question of having symptoms
13:12lasting 3 months or longer that
13:14they didn't have prior to COVID-19
13:16were defined as having long COVID.
13:19Then among those that had long COVID,
13:22we wanted to figure out how many
13:24still have long COVID and how
13:26many have recovered or don't have
13:28the condition right now.
13:29So if they responded yes to having
13:32long COVID and yes to responding
13:34yes to having symptoms right now,
13:36we define them as not having recovered and
13:39currently still experiencing long COVID.
13:41However,
13:41if they responded no to the question
13:44of having symptoms right now,
13:45but having at one point had long COVID,
13:48we define them as recovered or
13:51not currently having long COVID.
13:54And So what we found was that
13:56among the 27,000,
13:57little more than 27,000
13:58respondents in our survey,
14:00about a little more than
14:0110,000 ever had acute COVID.
14:03It's a little more than 1/3.
14:05And so the great thing about
14:06NHIS is that these are nationally
14:08representative estimates,
14:09so we can generalize this to
14:11the US population.
14:12So that produced an estimate of about
14:15100 million Americans that reported
14:16ever having acute COVID infection in 2022.
14:20Among those that ever had
14:22an acute COVID infection,
14:23we found that 17.7% or almost one
14:26in five had ever had long COVID.
14:29This corresponds to the national estimate
14:31of about 17.5 million Americans.
14:33And then we found that approximately
14:36half of US adults who have experienced
14:38long COVID reported having recovered.
14:41So of those that ever had long COVID,
14:43half of those individuals corresponding
14:45to 8.5 million Americans reported
14:48having recovered from long COVID.
14:50The next step we took was to create a
14:53predictive model to identify factors
14:56that are associated with long COVID recovery.
14:59So what we found was that having an
15:01age greater than or equal to 40 years,
15:03identifying with female gender,
15:05having severe symptoms during
15:07the acute COVID infection,
15:09and having an educational attainment
15:10of more than high school were all
15:13factors that were significantly
15:14associated with a lower likelihood
15:16of recovery from long COVID.
15:18And having of and Hispanic
15:20individuals were the only group
15:22that were significantly more likely
15:24to recover than any other group.
15:27And so now I want to talk about what
15:28this means and what could be improved.
15:30And so the main finding from the
15:32study is that recovery rates for
15:33long COVID varied by age, gender,
15:35race, ethnicity, and education level.
15:38And we found that over half the people
15:41that reported having long COVID recovered.
15:43So there's a lot of hope,
15:44but there's still a lot of work
15:45that needs to be done.
15:46And so we need to focus for their
15:49work on figuring out the causes of
15:51these differences and identifying
15:53strategies to increase recovery rate.
15:55I also want to talk about some
15:56of the limitations of the work.
15:58So NHIS is self reported data.
16:01And so something that we realized while
16:04conducting the study is that the way
16:06individuals may perceive and report
16:08their symptoms can vary across groupings.
16:10But the the self report is currently the
16:13gold standard for diagnosing long COVID,
16:15which is why it's really important
16:17that we continue work like such
16:20as with Professor Iwasaki's lab
16:22to identify biomarkers that can,
16:24you know,
16:25definitively provide a diagnosis for a
16:27condition beyond just self reported data.
16:30We also didn't have any information
16:32about the timing of acute COVID
16:34infection that could potentially
16:35confound our results about recovery.
16:38So we didn't have any information
16:40about when a person had their
16:42initial COVID-19 infection.
16:42And so they may have had a different variant,
16:45they may have had a delta Omicron,
16:47pre delta post Omicron variant that
16:49may affect their time to recovery.
16:51And people that may have had COVID
16:53on earlier on in the pandemic may
16:55have had more time to recover.
16:57But there is no,
16:58there's limited or to no evidence
17:00that in either direction about the
17:02effect of timing of acute infection
17:05on the recovery process.
17:07That also still needs to be studied.
17:10We also had a narrow definition
17:11of long COVID.
17:12So when this survey was administered,
17:14the predominant definition that was
17:17used in the survey was if you had
17:21symptoms persisting 3 months or longer.
17:23We now have an updated definition
17:25from the CDC that constricts this
17:28to four weeks or more.
17:29So if you have symptoms lasting
17:324 weeks or more that you did not
17:35have prior to COVID-19,
17:36that's the new definition for long COVID.
17:38And so if we had incorporated
17:41that definition into that survey,
17:43we may have had different results
17:45and estimates for recovery.
17:47We also didn't have any information
17:49about symptoms and treatments,
17:50which may have been useful if we were
17:53able to determine if certain treatments
17:55or symptoms were associated with less
17:58or higher likelihood of recovery.
18:00And that might help other people who
18:01have not yet recovered and formed
18:03their own strategies for recovery.
18:07This article is currently available and
18:09printed in the American Journal of Medicine.
18:11So you can scan this QR
18:13code to access the article,
18:14but we are currently working with
18:16the journal to make this Open
18:19Access so that everyone can read it.
18:21And we'll let you all know when that happens.
18:25But yeah, I just want to open it up now.
18:27If anyone has any questions or comments,
18:30we'll be happy to answer them.
18:32And let me just say a couple things, Rishi,
18:35just as a sort of voice over on what you do.
18:38That's a beautiful job, by the way.
18:40So imagine Rishi's a,
18:42a Yale undergrad who spent time doing this
18:44study and spent countless hours trying to,
18:46you know, produce some knowledge about it.
18:49Thought that was great.
18:50One of the things it, it said to me when
18:54we looked into this was that, you know,
18:57there are people who are recovering from it.
18:59Some people came back to me and said,
19:01well, you're diminishing the
19:02people who have persistent disease.
19:04And I said, well,
19:05I think what it might say is that there's
19:07some hope that that the things get better,
19:10you know,
19:10for some people and we need to learn like,
19:12how did they get better?
19:13Did they get better because
19:15of something they tried?
19:16Did they get better because just the
19:19Natural History of the disease and,
19:21and the fact that we're saying,
19:22what are the characteristics?
19:23I think it's sort of less important to
19:25me because those are all on average,
19:26there's a little more in this group,
19:27a little less in that group,
19:29but but it's more that that in
19:31some people it gets better.
19:32I had a neighbor who had terrible
19:35long COVID symptoms and I,
19:37I felt helpless to help him except just
19:40to listen to what he was experiencing.
19:43And, and one day he woke up and they were,
19:46he's told me they,
19:47they disappeared like they were gone.
19:50That made me wonder about viral persistence.
19:52By the way,
19:52I don't know,
19:52did his body somehow just finally
19:54get on top of that and eliminate it?
19:57But it it did make me think that
19:59that that there should be hope that
20:01we at least do see this and then
20:03this sort of validate for it's very
20:05limited because you don't know.
20:07Like how long people had it,
20:08how severe they had it,
20:09what whether what they have now is
20:11better than what they had before.
20:13It's a very crude look.
20:14But but there were people who said they
20:17had COVID, who said they had long COVID,
20:19who are saying they don't have it now.
20:21And that that to me was important to report.
20:25You know, it's crude as it was.
20:26Again, nationally representative was good,
20:28but it was like an inch thick.
20:30You know,
20:30it didn't really give us much
20:31of the information,
20:32which is what led us to think that
20:35we should be doing a study in the
20:38listening group and collecting
20:39a lot more information about,
20:41you know,
20:41we have a whole bunch of people
20:43now will be able to look at maybe
20:45a year or two years later and ask
20:47people how many people got better.
20:49And for those who got better,
20:50we can ask them, you know,
20:51how much better did you get?
20:52What got better? You know, what did you try?
20:54I don't know who might just generate
20:56some hypothesis about this.
20:57So we could learn from the group about
20:59comparing the baseline with follow up.
21:01And this, this paper is sort of a,
21:04you know, foundational piece that sort
21:05of lets us know what this similarly
21:08with post vaccination syndrome.
21:09We there isn't similar information.
21:11Those questions weren't asking NHIS,
21:14but we can do the same thing and go back
21:16and sort of see what the experience is.
21:18I wanted to make one other comment,
21:19which is when he showed the
21:21first article we did,
21:22which was who are the people who are
21:24most at risk for getting long COVID?
21:25You saw there was a funny finding that black
21:29people had a lower risk of long COVID.
21:32You know, race is a we,
21:34we understand it, believe it to be and,
21:37and endorse it as a social construct.
21:39Largely.
21:40You know, there are some based on ancestry,
21:42There are some genes that that are
21:44more likely in some groups than other.
21:45But but largely in our society,
21:47race is a social construct.
21:49And the disparities that people experience
21:51in our society are largely a result
21:55of things like structural racism,
21:57things that happen that,
21:58that conspire against their best health
22:00and have nothing to do with their
22:02intrinsic biology and more to do with their,
22:04their,
22:04their circumstances and, and,
22:06and what happens in society when we have
22:09fewer people who are reporting long COVID.
22:11It makes me wonder, is that true or,
22:15or is that have to do with not being
22:18recognized as such, you know, or,
22:20or, you know, not being able to,
22:22to be access to care or, or,
22:25or, or other things, You know,
22:27I, I don't take it again,
22:28it's a hypothesis about like,
22:30why would that be?
22:31And it's something we need to dig into.
22:33Are there groups that are neglected,
22:35vulnerable, but aren't actually even,
22:38you know,
22:38being understood as having long COVID?
22:40We have to figure that out as well.
22:42And so that that anyway,
22:43these are the comments I want to make,
22:44but open to questions for Rishi
22:47'cause he did, you know,
22:48he,
22:48he can answer almost anything on this topic.
22:59Rishi, do you want to cover
23:00some of the questions that
23:02we received in the chat box?
23:03Maybe you can start off with
23:05the definition type of like
23:07questions that we received.
23:08I think we have a question on how we
23:12define recovery for a long COVID.
23:15Yeah, definitely another
23:16one on the Q COVID, right.
23:18Let me go back to that slide.
23:20And so these were questions that were asked.
23:23So these are the actual questions
23:25that NHS sends field representatives
23:27to go to families and households and
23:30ask questions and conduct the survey.
23:33And so the way that we defined acute
23:36COVID-19 was if they had a doctor's
23:39diagnosis for COVID-19 or they self
23:43reported a positive COVID-19 test result.
23:46And so if you had either one of
23:49these things in the NHIS defined
23:51that as ever having acute COVID,
23:54long COVID was then defined
23:56with this question right here.
23:58So among those individuals that
23:59said they did have a doctor's
24:01diagnosis or a positive test result,
24:03they were asked do you have any symptoms
24:05lasting 3 months longer that you did
24:07not have prior to having COVID-19?
24:09Those individuals that responded yes
24:11were considered to have a long COVID
24:14and those individuals that responded no
24:16were not considered to have long COVID.
24:18And so the status of recovery was
24:21something that was brought forth
24:23by NHIS as a follow up to those
24:25who reported long COVID.
24:26They asked them if they had
24:28symptoms right now.
24:29If they did,
24:30they were defined as not recovered.
24:32And if they didn't have
24:34symptoms at the moment,
24:35they were defined as being recovered.
24:39This also reminds me of another
24:41limitation that we thought of about
24:43the studies that long COVID is
24:45not necessarily a condition that,
24:47you know, can is, is static in time.
24:50And so individuals at this moment
24:51in time when they were participating
24:53in the survey may have not may
24:55not have had symptoms,
24:57but it's possible that they
24:58may have relapsed and,
25:00you know,
25:00experienced long COVID symptoms later on.
25:02That's also another important
25:04limitation that we want to consider.
25:09Yep. And we also have a question on
25:13did the people who recovered have
25:15less or severity if long COVID?
25:18Yeah. So what we found was that
25:22individuals that reported severe
25:24symptoms during acute COVID-19 were
25:28significantly less likely to recover.
25:30Individuals that were reported
25:32mild or moderate symptoms during
25:35acute COVID-19 infection were
25:37likely more likely to recover,
25:39but it wasn't a significant result.
25:42The only significant result among COVID-19
25:45severity was if you had severe symptoms,
25:47those individuals were
25:50less likely to recover. And
25:53just to clarify, we,
25:54we do not have details on what
25:57kind of symptoms they had as long
26:00COVID symptoms in this survey,
26:02correct? Right. We see.
26:03So we didn't have detailed information
26:06on what the participants identified
26:09as their long term symptoms,
26:12right. So we didn't have a clear and all
26:15we had was a question in the survey was,
26:18was how, how would you rank
26:20the severity of your symptoms
26:22during acute COVID-19 infection.
26:24And so they were participants
26:25were given three options,
26:26mild, moderate or severe.
26:27But it is great news that in the
26:30next iteration of the survey,
26:32NHS will be asking questions
26:34about symptoms like loss of smell,
26:37brain fog, things like that.
26:38So hopefully next time around we'll
26:41have more information about that.
26:43There's a question about our comorbidities
26:45like Potts accounted for in the research.
26:47This is actually a really good
26:49question because this is something
26:50that we were considering as well,
26:52but we wanted to include variables
26:54that would maybe it would not be
26:57affected by a COVID-19 diagnosis.
26:59And so some people may have gotten
27:02a condition like POTS as a result
27:05of as a byproduct of long COVID.
27:07And so because we don't have timing
27:09of when a person developed their
27:11comorbidities within the survey,
27:13we weren't able to.
27:14We decided it would be best to
27:16not include those in the analysis.
27:25Great.
27:31I'm just trying to go through the chat box,
27:34Rishi, so if you identify anything you can
27:37answer right away, that'd be great. Yeah,
27:41I'm looking through them.
27:51So there's a question.
27:52Did you consider looking at longer periods,
27:54such as those recovering after
27:5712 months, 24 months? Yeah.
27:59So this is a great question and one
28:02that we definitely want to look into.
28:04The issue that we had with the
28:06National Health Interview Survey was
28:08that the question was framed as if
28:10you it was more of a binary response.
28:12So either people were defined as having
28:14long COVID or not having long COVID.
28:16We didn't really get data about how long
28:19they have been suffering from long COVID.
28:21And so that would be kind of provided
28:24with initial infection dates.
28:26And so with that information,
28:27that's definitely a question that
28:29we want to answer and we want to
28:31look at the effect of time on
28:33the long COVID recovery process,
28:48right? All of this data is self reported.
28:51And so this is every participant might,
28:56you know, perceive and report
28:58their symptoms in different ways.
29:00And that's just the limitation
29:01of the survey data.
29:04This was also, yeah,
29:06high educational attainment.
29:07Why would that impair recovery?
29:09That's also an interesting result.
29:12This can also just be due
29:14to biases in self report.
29:17It can be possible that you know,
29:18among different educational attainment
29:20groups people are perceiving and
29:22reporting their symptoms differently.
29:36I do see comments on how vaccination
29:39can affect the long COVID symptoms.
29:41And while this survey itself cannot
29:45answer that, we do have one paper
29:49that we looked into on how vaccination
29:52effects on COVID symptoms on.
29:54I believe it was 16 participants.
29:57And that paper should be available
30:02within maybe next few months,
30:05few weeks or few months.
30:07Hopefully we ornally are you able to like
30:14briefly explain about this study? Yes.
30:17So we did try to have a run a
30:20longitudinal study, but we did not have
30:23much participants because most people
30:25got vaccinated by the time we had
30:27you know started and it was ongoing.
30:29But we do have data on 16 participants
30:32and we do see some improvement.
30:35That's what we are observing.
30:37And also there are some immunophenotypes
30:40which seem to go along with the improvement.
30:43So it shouldn't take much more time.
30:46It should. We need to submit a
30:48revision and once it goes in,
30:50it should be available to everybody
30:52once it's accepted, of course.
30:53So it has to go through another
30:55round of review.
30:56So it will be soon that you'll
30:58be able to see the paper.
31:00But definitely,
31:01we see that some of the
31:03participants have reported that,
31:04you know,
31:05symptoms got better and we do see
31:07certain immuno phenotyping results which
31:09seem to align with the improvement.
31:12Thank
31:13you. And hopefully, we can do a cafe
31:15or a town hall when that paper is out.
31:22Rishi, any other questions that you
31:25wouldn't be able to answer this moment?
31:30I need to see if I covered
31:31everything. If I didn't,
31:35I think I got most of them.
31:37If you if you have a question
31:39that didn't get answered,
31:40if you wouldn't mind pasting it in
31:42the chat again, we'd appreciate it.
31:46Yep, I know I haven't able to. I wasn't
31:51able to cover every question because
31:56and I apologize for that.
31:58Maybe I, Richie, if you can identify
32:00one or two, that'll be good.
32:02But maybe I can just do a brief
32:05announcement on the LISTEN study itself.
32:07So I'm just going to do maybe quickly
32:12do a brief introduction myself.
32:14So I'm Mitsu Sawano,
32:15I'm one of the physician scientists
32:18working on the LISTEN study and I've
32:21been working with Doctor Kumholtz
32:23and the team for the past two years.
32:26And and I've been learning a lot
32:29about long COVID and this community.
32:31And so, you know, we are,
32:35I think Harlan already mentioned
32:37this in the opening remarks,
32:40but we are interested in, you know,
32:45capturing more newer aspects of how you
32:49are experiencing long COVID over the years.
32:53And it's also related to this long COVID
32:56recovery paper that Rishi just presented.
32:59So we are interested in conducting what
33:02we call a follow up survey on everyone
33:06who had responded to the baseline
33:09questionnaires that we had in Hugo Kindred.
33:12I know some of you haven't responded to it,
33:15some of you may not have,
33:16but that's OK.
33:18So anyone who has responded
33:20to the previous question,
33:22we hope to send you an invitation
33:25on how you're doing in terms of
33:28your general health status and also
33:31how your long COVID symptoms have
33:33changed or has if it has not changed.
33:36And you know you should respond that,
33:39but we are interested in how you are
33:42doing over the last one or two years
33:45after you have joined this listen study.
33:48And we hope to launch that long COVID follow
33:53up study within the maybe next few weeks,
33:59perhaps in maybe August.
34:02We just have to go through the IRB approval.
34:05But once that's done then we
34:08hope to launch that very soon.
34:09And if you can respond to it and answer
34:13the set of questionnaires that we have,
34:15it's basically going to be something
34:18similar that you have responded
34:20and the baseline questionnaire,
34:23but it's going to be a little bit
34:25shorter so that everybody would
34:27not feel too overly overwhelmed.
34:32Because you know,
34:33I know that that these questionnaires
34:34can be long,
34:35but we try to keep it short so
34:38that everyone will be able to
34:40respond in like 1 sequence.
34:43So hopefully we can have that ready.
34:46And once that is all prepared,
34:50then we will make an
34:52announcement via e-mail again.
34:54So that's on the horizon.
34:57So I just wanted to make that announcement.
34:59And Rishi,
35:00is there anything else that you
35:02would like to cover it right here?
35:04No, but I do just want to clarify one thing.
35:06I apologize for not doing the strange slides.
35:08But so acute COVID-19 infection,
35:11it's basically your initial,
35:13your COVID-19 infection with the virus.
35:16So some individuals had were infected
35:19with COVID-19 and recovered and
35:21did not experience long COVID.
35:22And so the distinction is between
35:25those that have acute COVID-19
35:27symptoms and then transition to
35:29having long COVID if those symptoms
35:31persist for three months or longer.
35:33And so the question of severity that
35:36was asked in the survey was in relation
35:38to the acute COVID-19 infection,
35:40not with in regards to the long COVID.
35:43And I do agree that it would be
35:45helpful if they also asked about
35:47the severity of long COVID so that
35:48we would be able to, you know,
35:50glean insights from that too.
35:54Great, Thank you, Rishi.
35:56And before I close, I just wanted
36:00to introduce everybody to Jay,
36:02who is a new member on our team.
36:04So Jay, maybe you can introduce yourself.
36:09Hello, everyone. As Mitsu said,
36:11my name is Jay. I'm a medical student
36:13working with the Listen team.
36:14Thank you again for your participation.
36:15And we're really looking forward to to
36:18getting these results and getting it back
36:19to you guys. Thank you, Jay
36:25and I, I'll hand it to you, Carla
36:27or I don't know if I just
36:29give a chance for Bernali.
36:30I know she wasn't planning on speaking
36:32today and she's all messed up.
36:33But Bernali, I know if you just
36:37wanted to say a few words about
36:38the experience in the lab or how
36:39things are going in the lab,
36:40just folks because it's such an
36:41important part of what we're doing.
36:44So we are currently focusing on the
36:46PBS cohort and we are hopeful that we
36:49will be able to collate all the data.
36:51So we are in the process of collating
36:53the data and organizing the write up and
36:56everything and also keenly looking at what
36:58kind of signatures that we are getting.
37:00We are using machine learning to also
37:03look for biomarkers if they are any,
37:05so that we can distinguish between
37:07controls and PVS participants.
37:09So that's where we are at.
37:11We should be able to get something out at
37:14least the preprint within two months or so.
37:17That's the hope.
37:18We are still waiting for some of the
37:21results and some of the analysis.
37:22So that's where we are AT and also
37:24validating some of the results that have,
37:26we have used some of the assays and found.
37:29So we want to validate and be double
37:31sure before we publish anything.
37:33So that's where we are at with
37:35the PBS manuscript.
37:36And other than that,
37:38we're also working on the trial samples.
37:41So we are busy doing that too.
37:43So they will be unwinding as
37:45Harlan has mentioned in July,
37:47I believe.
37:47And after that we should be
37:49able to analyse the data and see
37:51how the results look.
37:52So that's where the Iwasaki lab is at.
37:55Thank you,
37:56Harlan
37:56and and just to note that every time
37:58I hear your lab, you know, talk you,
38:02you guys are involved with a lot of
38:04other collaborations around long COVID
38:05and post vaccination syndrome and,
38:07and both with Petrino and the Sinai
38:10group and and all around the world.
38:11Anyway, I just want sometimes I think,
38:14you know, when you're you're out there and
38:16you're facing this and you wonder, you know,
38:18is, is at least anyone paying attention
38:20or people still trying to make progress?
38:22You know that there's Akiko in the lab.
38:25You know, there's a lot going on.
38:27Some of it has to do with listen,
38:29some of it has to do with other things.
38:31Anyway, I just wanted to highlight that that
38:33there is still a lot of efforts being made.
38:35Always wish that there could be more,
38:37but but the group still pushing forward.
38:41I had a nice conversation
38:42with Lisa Sanders this week.
38:43Lisa, you know, may know,
38:45like writes this column in the New York Times
38:48around she kind of was involved in that,
38:51that TV series House.
38:52And, you know,
38:53she like writes about medical mysteries,
38:55but she started a long
38:56COVID clinic at at Yale.
38:58And we're also talking to her about
38:59how we can work more closely with her.
39:01And of course,
39:01they're booked out till December.
39:03It's crowded.
39:04And so she's working to see if she can
39:07attract more people to to help expand
39:09the clinic and and help meet the demand.
39:11Even,
39:11you know,
39:12locally here.
39:15We're happy to end,
39:17but we're also happy to,
39:20you know, I always think it's
39:21better when Akiko's on with me,
39:22although I have Bernal.
39:24It was amazing.
39:25But because most of your questions
39:26actually have to do with Mechazone,
39:28just a simple cardiologist,
39:29but I'm lucky enough to work
39:31with Akiko and some of the other
39:33people who have been studying post
39:34infectious things for a long time.
39:36I got and I got drawn into this
39:38because just wanted to see if
39:39we can make a contribution.
39:41But if there are things that
39:42you guys want to ask us,
39:43we could just take a few minutes now.
39:45Otherwise we can we can close up
39:53like we're now. You might want to see
39:57those, those last two. Yeah,
39:59you can stand in for Akiko and see
40:01if you can answer any of those
40:04about the nasal vaccines.
40:05We are currently working on some
40:08nasal vaccines like, you know,
40:09we Akiko had a nice design and some of
40:12the results have been very promising.
40:14So, but we'll have to wait
40:16for some more experiments,
40:17you know, before we think about.
40:18Clinical trials, right.
40:20So we are on a journey so and we
40:23hope to achieve something soon.
40:26We are working on influenza,
40:29we have worked on other viruses as well.
40:32So hopefully we will be able
40:34to get something out soon.
40:40And I think there was one about
40:42someone was asking about auto
40:43antibodies in the post vax. Yeah.
40:45So that's part of your asset, that's part
40:47of your yes. So
40:48we are definitely looking at auto antibodies,
40:51some of the known auto antibodies
40:53actually and we are analyzing the data.
40:56So we will be validating them before
40:58we put it into the manuscript.
41:00We want to be very, very sure before
41:02we put anything into the manuscript.
41:03So yes, we are looking at auto antibodies.
41:17Is there any effort to manufacture a
41:19COVID vaccine that's not an mRNA vaccine?
41:20There are non mRNA vaccines
41:22right for now. I mean they're
41:24yes, subunit vaccines are there of course,
41:27so but not as efficacious. We should see that
41:32like Novavax somebody put up.
41:34Yes, yes, correct.
41:37You guys are such good
41:38resources to each other.
41:39You know, it's sort of like
41:41the amount of knowledge in this
41:42group always impresses me, Like,
41:44we all have so much to learn from all of you.
41:46You all are helping each other.
41:49It's really amazing.
41:50Yeah. It looks like Carolyn has
41:52already read the news foreign study
41:54that was published from our lab.
41:56Yes, it does. We are also looking
41:59at mechanisms at this point and at
42:01the same time studying Neosporin.
42:02So I think it will be an effort to
42:04also move on to higher animals.
42:06Like you have to look at mammals first in
42:09order to reach next step is to reach humans.
42:12So that's why those will be the step
42:13wise progress on the Neosporin study.
42:15And definitely we learn more
42:17each time we run experiments.
42:18We do learn more about the immune system.
42:21It's me coastal immunity.
42:22And we are very much interested in the lab.
42:24It's Akiko's favorite.
42:24So, yeah,
42:26by the way, we we have put together a
42:29piece on in the small group of people
42:31that we were able to look at vaccination
42:33from with long COVID before and after
42:35vaccination and what the results are.
42:36Maybe on the next one,
42:38we should present that information.
42:39It's only on 16 people,
42:42but we we're just finishing up with very
42:44detailed lab data from Akiko's lab as
42:47well as what people reported. Actually,
42:49we absolutely should do that next time.
42:51Well, because we, we'll,
42:52we're just sort of finishing up that analysis
42:55and we'll be glad to share that with you.
42:57Meanwhile,
42:58when it gets posted and we'll send you notes.
43:01So even before you won't have
43:02to wait for one of these,
43:03we can discuss it on one of these,
43:05but, but we'll let you know as
43:07soon as that comes out because
43:08that might also be relevant.
43:10The Symphony Cynthia is asking,
43:13I think,
43:13a very important and interesting
43:15question about she's asking about
43:17the cardiology community and
43:18the degree to which people are
43:20being educated and sensitized to
43:22the needs of of this population.
43:24You know, I think the sad news, Cynthia,
43:26is that just like the rest of the world,
43:28like people want to pretend like
43:30the pandemic never occurred,
43:30like they can't get far enough away from it.
43:33You know, it's almost like it,
43:34it's a buzzkill to raise it.
43:36You know,
43:36just I'm talking about the pandemic general.
43:38So now imagine you're talking about
43:40long COVID and you know, like,
43:42of course I'm talking about it,
43:44but like,
43:45I'm almost like alone talking about it.
43:47You know, in cardiology,
43:48you know,
43:48it's just not you don't see articles
43:51being published about it anymore.
43:53You don't see people attacking to to it.
43:55Meanwhile,
43:55there's a large population of
43:56people who are still suffering and
43:58for whom we don't have answers.
44:00And I think it's a it's one of the
44:04reasons why I still think even the
44:06descriptive papers are important.
44:07You know, it, If you're a patient,
44:09you said the damn it, You know,
44:10we don't really want scripted,
44:11we want action, you know,
44:13and I, I get that,
44:14but I'm also trying to raise awareness
44:17still that that you know, again,
44:19when they see people for people,
44:21they're not alone.
44:22They can read that there are other
44:24people like me and went for doctors.
44:25They can at least have something
44:27in the literature to look to,
44:28to see this is being described.
44:30There is something,
44:31it's real,
44:32you know,
44:32and it's something we don't understand
44:35necessarily in terms of underlying cause.
44:37But it it doesn't make it any less
44:39important that there are people
44:40out there who are suffering.
44:42And so,
44:44you know, somehow we got to get there.
44:47Is this moment in time right now?
44:50Yeah, I think you're right, Emily.
44:52Like we haven't grieved
44:54millions of people lost.
44:55You know, it's almost like, you know,
44:58it's a it's a third rail to even talk about,
45:00you know, and you go to the medical meetings.
45:02I just went to the cardiology meetings.
45:05There's nothing, you know,
45:06nothing going on about it.
45:08And like you again,
45:09try to get into the journals like
45:11they're not as interested anymore.
45:12You know, there was a in 2020-2021,
45:15like there were a million papers
45:16on the pandemic being published.
45:18If you just put pandemic in your
45:19article and people would take it,
45:21you never wanted it.
45:22And it's almost like the
45:23exact opposite right now.
45:25You know that there's negative interest
45:27in this and it's something we've got to,
45:30you know, combat because it's
45:32an impediment to progress.
45:35And it also means that when people
45:37show up at doctor's offices,
45:39they're not tuned into this and
45:41that those are all still issues.
45:44And So what I'm hoping is that
45:45some of this work within the lab,
45:48you know,
45:48just because that's the way the field works,
45:50the faster we can get to be
45:52able to show objective.
45:53I don't want to say objective
45:54because people's report how
45:56they feel is objective too.
45:57But but you know,
45:58when we can bring that together with
46:00with findings in the lab and I think
46:03it's going to lead to faster acceptance.
46:05And so that's it,
46:06let alone progress in terms of
46:08diagnostics and therapeutics.
46:10But I'm very much interested in
46:13in just the acknowledgement of the
46:15medical profession of the reality
46:16of what people are living with.
46:18And so I think that's also an important step.
46:21So anyway,
46:21that this is
46:25what we're trying to do
46:31And and Terry asked him about
46:33credible suggestions for resources.
46:34You know, I, I point you to react 19.
46:36I mean, I think in some of the
46:37people who are on the phone,
46:40Denise, for example, I saw you were here.
46:44You know, they've done a great job
46:45pulling to the resource. It, it,
46:47if it's bad for people with long COVID,
46:49it's even worse for people with post
46:51vaccination syndrome in the sense of,
46:53of society not wanting to listen
46:56or even accept it to talk about it.
46:58You know, CDC at least has a,
47:00you know, it's been talking about
47:01the National Health interview survey,
47:03at least entered some questions about it.
47:06You know, these people aren't even
47:09being acknowledged as like that.
47:10It's, it's real and there are a lot of
47:15people don't believe in long COVID,
47:16but there's people aren't even
47:18saying the saying what, you know,
47:20what these other people are facing.
47:22So it's also a tragic circumstance.
47:27And in terms of resources,
47:29I really point you to them.
47:30They're doing a great job.
47:31They've got a great survey up.
47:33They're collecting information.
47:34I, you know, I want to endorse,
47:36you know,
47:37their efforts to try to help understand
47:39what their community is facing.
47:41And we want to be as supportive as possible.
47:47We don't believe this is political.
47:48We believe this is about illness and
47:50what people are facing and that's
47:51we're trying to move it out of that.
47:53We're trying to move it towards science.
47:55Same thing long COVID saying like,
47:57let's just chase the science on this
47:59because they're people suffering.
48:01And so we need to chase the science.
48:07Saw I saw that movie The Martian last
48:09night was on while I was working on
48:10sometimes have movies on the background.
48:12You know, it's like whatever
48:13they were saying that movie,
48:14you know, like, you know,
48:15people science the heck out of this,
48:17like let's solve the problem.
48:19You know that that's what we need. I
48:30appreciate all these comments
48:32and we I agree it can,
48:34I know it can feel isolating.
48:35That's what we're trying
48:36to tell people. They're not
48:40alone. We're now like there's
48:41some things on here. You know,
48:42what I think is we can look at a lot
48:44of these comments and try to provide
48:46some responses and just send them
48:47out to the community because they're
48:49just a lot come by and we're at time,
48:51but feel free to put stuff up and,
48:53and we can take a look and see
48:55what we can answer and then send
48:57out notes to to everyone,
48:59even those who couldn't be here.
49:02You know, they they can see it.
49:04But but again, you know,
49:05we're really grateful to all of you.
49:07Some of this is exploring new
49:09ways to do research, you know,
49:11trying to be good partners and doing
49:13it hand in hand and especially in
49:15an area that we're all kind of Co
49:18producing how best to learn together.
49:20And we're always open to your
49:23suggestions and comments.
49:29So for me, I just want
49:31to express appreciation.
49:32I think we should just,
49:33I keep seeing people put up.
49:34So I think we should go all the way for
49:36the next 3 minutes and let well for.
49:38OK, Thanks, Ellen.
49:39That was very nice.
49:41But not for compliments,
49:42but for any comments first.
49:44I appreciate compliments,
49:45but it's mostly like just want
49:46to make sure we're getting
49:48all questions or things you
49:49guys want us to address.
49:53And some of them I see Bornelli even
49:55answered questions along the way.
49:56Thank you. I know, I know,
49:57Mitzi, you have two and others.
50:04And we're looking at a ton of auto
50:05antibodies, but there still could
50:07be auto antibodies were missing.
50:08I mean, this is some of the issue,
50:09which is at least look at the
50:10things that we're looking at.
50:12There's studies of reactivation.
50:13Is this about reactivation of other
50:15viruses that some of what's being studied,
50:18some what's being studied are,
50:19are T cell receptors and, and,
50:22and some of them are around things
50:25like hormones and, and you know,
50:28whether it's cortisol or
50:30testosterone and other things,
50:31you know how they're associated.
50:36So I think we'll just, we'll just
50:37end up you guys can always find us.
50:39Let me just ask Heidi and Talia,
50:42people send us notes.
50:43It's just that listen,
50:44study at yale.edu, right.
50:45That's how best to get to us,
50:47correct yes Yep.
50:49So you guys can always know how
50:50to reach us and we're always doing
50:52our best to get back to folks and,
50:54and we'll try to take a look
50:55at all the stuff and thank you,
50:56Molly and Talia,
50:59and we'll try to get back
51:03about some of these questions.
51:05So thank you all.
51:06Much appreciated.
51:09Wishing you all good health in the future.
51:12Hoping for healthy surprises in the future.
51:19Thank you.
51:57Just to say like it's just
51:59so remarkable beyond with
52:00with people from our study.
52:01I it's just like it never
52:03gets done like that.
52:04Nobody does studies where
52:05they they pull together
52:06people and invite them on.
52:08It's just amazing.
52:11We're we're advocating for all investigators
52:12to do stuff like this now, like, you know,
52:15talk to people who are in the studies.
52:26All right, thank you all.
52:36I am going to end the meeting. So if you have
52:40any other questions, please send it
52:43over to listen study at yale.edu.
52:46Thank you so much everyone.