The Yale LISTEN Town Hall: May 2023

February 27, 2024

Information

Dr. Lindsay McAlpine, neuroimmunologist and an Instructor in the Division of Neurological Infections and Global Neurology at the Yale University School of Medicine, joins the LISTEN team for this town hall.

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00:04Super excited to have everyone here.
00:06Thank you for making the time to be here.
00:08I'm always so impressed and
00:10just grateful for how engaged
00:12and active this community is.
00:13It's just wonderful to have these
00:16meetings time and time again.
00:19If you haven't,
00:20I'll give a little speech now.
00:22It would be awesome if you could connect
00:24your data on the Kindred platform.
00:25If you are enrolled in a listen study,
00:27which you all are if you are here,
00:29connecting your data is imperative
00:31for the research that they're doing.
00:33If you have any concern about safety
00:36with your data or anything like that,
00:39we actually had AK talk about
00:41a few weeks ago with Jay Ward,
00:44who is an expert in the field.
00:45So you can check out Kindred's YouTube page.
00:47If you don't know where to find that,
00:48you can shoot me an e-mail Talia at Hugo
00:50dot health and they'll send you that link.
00:52If you have any questions
00:53about connecting your data,
00:54you can also reach out to me,
00:55but I highly recommend that you do that.
00:58And really, that's all that I have to say.
01:00Without any further ado,
01:00I'd love to turn this over
01:02to the Listen team.
01:03They'll introduce yourself
01:04and get right into it.
01:05So welcome again and thanks
01:06so much for joining us.
01:10Hi, everyone.
01:11Thank you so much for joining.
01:12I'm Harlan Krumholtz.
01:14Many of you may have met me before.
01:17I'm a cardiologist.
01:18I'm a faculty member at Yale and one
01:21of the people who's involved with the
01:24listen study and and so appreciative
01:26for all of your participation.
01:28What we thought we'd do is usually I'm,
01:30I'm here with Akiko and the rest of the team.
01:32Akiko couldn't make a day,
01:34but we really wanted to have a meeting
01:35where we could get together and and
01:37engage with with folks and exchange
01:40some information and and hear from
01:42the people who are participating.
01:43So we wanted to just push
01:45ahead and and have this.
01:46We'll continue to have these over time.
01:48So and I believe we'll be having more and
01:50more information to share from the study.
01:53But the first thing before we get
01:55started is we'll just go through
01:57and let folks introduce themselves.
01:59So in case you haven't met everyone and
02:02actually have a new member of the team too.
02:04So, Tiana,
02:05why don't you go next?
02:09Hi, everyone. I'm Tiana. I'm
02:10a medical student at Yale
02:12helping out on the project.
02:15Hi, everyone. My name is Mitsu.
02:18I'm a cardiologist and a clinician
02:22scientist as I'm working at
02:24Yale as a researcher now.
02:26I'm happy to be here.
02:28Hi, I'm Lindsay McAlpine.
02:30I'm a neurologist at Yale and I am
02:34part of the COVID Mind study and
02:37run the Neuro COVID Clinic at Yale.
02:40And you all may may not have met Tiana and
02:42Lindsay before they've more recently joined.
02:45And we're thrilled to have Tiana
02:48and we're thrilled to have Lindsay
02:50Lindsay's got depth of experience
02:51taking care of people with long COVID
02:54and is really an expert in neuropathies
02:56and autoimmune disease and whole
02:58range of issues that I think are are
03:00really relevant to this community.
03:02And we're really,
03:03really happy that she's been able to join us.
03:05Bernali Batacharji is also
03:08going to join us. She is
03:13from Akiko's lab.
03:13Many of you may have met her before.
03:15She's amazing, terrific, some reasons.
03:17Having trouble getting into the webinar and
03:20we're working on that and see if we can.
03:22We can get her in,
03:23but you'll see her soon and should
03:24be able to feel questions about
03:26what's going on in the lab.
03:28So I just wanted to take maybe 15
03:31minutes just to hit on some my points
03:33about what we're doing in the listen
03:35study and to sort of bring you up to date.
03:37And then and then we're just going to open
03:39it up for discussions and and and questions.
03:42And you know we sort of have this
03:44format where we use the chat.
03:46We we found that to be kind of effective.
03:48Honestly it would be really great
03:50if we could actually see folks
03:52and do a little differently.
03:53We can play with this in future,
03:56future webinars to kind of think what might
03:58be how to optimize this for for everyone.
04:01But but for now we'll we're going
04:03to continue on the the kind of
04:04pattern that we're using for this.
04:10So this, this call is a research call,
04:12it's about the listen study.
04:13So just to say in terms of setting
04:15expectations that we're not going to
04:17talk about clinical treatments or or
04:20focus or or dig into you know clinical
04:26questions that's kinder cafe or other
04:28venues might be more appropriate for that.
04:30We really want to focus on the
04:33issues around the research.
04:35And so let me just again tell you about the,
04:39the general approach with lists and
04:41the idea was to to bring together a
04:44bunch of people in partnership to have
04:47people self report information about
04:50themselves to to let us know about how
04:52they're feeling and and what their life
04:55is like in structured questionnaires
04:57of questions these surveys but also
04:59get information about when they were
05:01infected what kind of vaccines they had.
05:03And so for then again this study
05:04is for people with long COVID,
05:05in addition people with vaccine injury
05:07and and we're kind of trying to to to
05:10be able to create a joint database
05:13that captures people's experience in
05:17addition to be able to people to connect
05:19their records and for some people to
05:21get biospecimen collection among the
05:22data that's being collected within.
05:24Listen,
05:25we're doing sort of a characterization
05:28of the population descriptive studies
05:31that are really providing some insight
05:33into what people are experiencing
05:35and there's lots of questions we
05:37may want to ask about this.
05:38I'll get into that as we go on.
05:40But also we're going to be looking at you,
05:43you all have provided information
05:45about yourselves in stories plus we
05:48can we we're thinking of embarking
05:50on some individual interviews to be
05:52able to do sort of a qualitative
05:54component to this as well.
05:55And then the laboratory which
05:57is sort of a sub state just we,
06:00you know,
06:01we wish we could do laboratory
06:03evaluations of everyone so we
06:04could include it in the study but
06:07but they're resource intensive,
06:08you know we're sending people to people's
06:11homes to collect the blood and saliva.
06:14So you know at this point we're only able
06:16to do it on a few people relative to
06:18the entire group of people who are enrolled.
06:21So but but that's the other part
06:22to be able to characterize with
06:24the immunophenotype and with sort
06:26of thousands of measures of of the
06:28immune system to develop what we're
06:30calling sort of immune signatures
06:32and these sort of characterizations
06:34of immune system function through
06:37the antibodies and cytokines and
06:38chemokines and and and cell receptors.
06:40And then ultimately what we want to
06:43do is take our characterizations of
06:45how people are feeling and what their
06:48symptoms are with what's coming up in
06:50the lab and see if there's an how what,
06:52how does that overlay the clusters,
06:54the different folks who have different
06:56characterizations of how they feel
06:58different kind of symptom clusters and
07:00are they how do they exhibit within the lab.
07:02So some of you've heard this before,
07:04but I'm just trying to level set
07:06for for the group And then and then
07:10you know our areas of emphasis are
07:11are you know overall we're looking
07:13at long COVID and vaccine injury.
07:15But also within these groups were were
07:17digging a little bit deeper into some
07:20of the subgroups that that seem to be
07:23highly represented within the groups.
07:25And for example that would be the tremors
07:28and internal vibrations or people,
07:31a lot of people with tinnitus,
07:32a lot of people with POTS.
07:34So we're going to be trying to look
07:36and see particularly at at very
07:39prominent symptom symptom groups,
07:41but we're also looking at how those
07:44cluster with other symptoms as well.
07:46And you know the the issues sort
07:48of like people want to talk about
07:51these conditions globally,
07:52but within the conditions you know it,
07:55it's probably a, you know,
07:56a misunderstanding to think of this
07:58as sort of one thing either long
08:00COVID or one thing vaccine injury.
08:02But in in fact there are different
08:04subpopulations that are exhibiting.
08:06They're very similar among themselves,
08:08but maybe very different from other people.
08:10And so we're going to try to try
08:13to to to really characterize that
08:15and then their issues of of timing,
08:17you know when did people get the symptoms,
08:20how long did they last,
08:21did they come and go,
08:22are they persistent,
08:23what kind of trajectories are there?
08:26And then also within the different
08:28vaccines or within the different variants,
08:31you know are they are people
08:33manifesting the same or different?
08:34And then how about different other subgroups,
08:36men and women,
08:38people who had some prior certain kinds
08:41of conditions versus people who didn't.
08:43I mean we're we're really trying
08:45to understand this in the best way
08:46we can and and characterize it.
08:54Let me just give you a
08:55sense of of listen so far.
08:57So there are 1500 people who have joined
09:01Listen and within that group we have
09:05almost 600 who are long COVID only.
09:08We have about 350 who report both
09:11long COVID and vaccine injury and and
09:14about 350 a little bit more who say
09:16vaccine injury only within this group.
09:19Like I said, 1500 overall 3/4
09:22of the group report as female
09:25and 23% report as male,
09:281.3% report as non binary.
09:30Within this group,
09:3484% self report as white.
09:37And then you know we have a range of others.
09:40Although I I I think we have the sense
09:42that we need to think hard about how
09:45we can be as inclusive as possible.
09:47We we think that there are probably
09:49a lot of people where they're still
09:51not reaching and and if we could
09:53improve the diversity of the group
09:55it would help us with its represent
09:57representativeness and generalizability.
09:59So any ideas you guys have about that
10:02you know what we can be doing to reach to
10:05get a more diverse group that would be great.
10:0887% of listen is from the United States.
10:10So it's it's mostly from the US but
10:13interestingly we do have you know good
10:15representation from around the world
10:16as well And and one thing you may be
10:19interested in is that you know by and
10:21large the listen community is a group
10:24that's that's highly affected by the
10:27conditions that they have and so on that
10:30zero to 100 scale the the the mean is is 51.
10:38So if you look in in the United States or
10:41if you look at our group that by the way
10:44the number should be about 80 or 82 that is
10:47just an average across the United States.
10:49We we have 214 people who joined
10:51as controls that is they don't
10:54have lung COVID or vaccine injury.
10:56We need this for reference
10:58populations initially.
10:59Remember I told you in the United States
11:01if you go to that euro quality of life,
11:03visual analog scale,
11:04that's what it's called,
11:06that zero to 100 scale in the US,
11:08the normative value of folks in the
11:10US something like 8284 and and that's
11:12because of course people don't have
11:13perfect health if you go out in,
11:15in, in in the population.
11:17But in our control group it's 80.
11:20So actually our control group
11:21that that's good.
11:22Our control group looks very much
11:24like what you might expect from
11:27from that in in the US we've been
11:29thinking how do we get more controls,
11:30how do we to get that in?
11:32Well, who would be good controls?
11:33And one of the things we thought was
11:36especially for the people who are who
11:37are giving the biospecimens because
11:39we're getting biospecimens from
11:40controls also is asking people who
11:43are participating if they can maybe
11:44identify someone who's in their demographic,
11:47who's around them either related to
11:49them or or or in their in their network,
11:53you know,
11:54locally in their neighborhoods or
11:56friends or family who might be
11:58willing to participate,
11:59who are kind of around their same age
12:01and and maybe same sex that that maybe
12:04we can enlist you to help us find controls.
12:06Because the faster and better we
12:08can find controls who are like you,
12:09the better off we're going to be.
12:10So any help that you can give us on that?
12:13And Bernali,
12:13thank you for joining us.
12:14That's all you're on now
12:16though I see somehow you're
12:17on Leslie's name. But I'm glad we got a
12:21link for you to join. You want to say hi?
12:24Hello. Sorry, I couldn't get in.
12:28And Leslie helped me to get in.
12:29Thank you, Leslie.
12:31So that was very helpful. Oh, good.
12:35So if you look at health status,
12:38it looks like they're about 30% of
12:42people overall in in listen who
12:46report excellent or very good health.
12:49But most folks are, you know,
12:51it's like half of them are fair or poor.
12:54And that's no surprise to many of you.
12:56I know because you know that's how
13:00you feel and but but I think it's it's
13:03also important one that we're we're
13:05sensitive to the struggles people have
13:07but also gives us as researchers I
13:10think even greater imperative that we
13:13work hard to try to get answers because
13:16you know there's so many people in our
13:18group who are really really suffering.
13:20I mean we know that we hear the stories
13:22but you know and it's reflected in
13:24this of course if you look at, if you,
13:29if you look at the people reporting
13:31on COVID about one in four do report
13:34very good or excellent health,
13:35but most people are are not reporting
13:38that at all.
13:39You know we have 6070% who are
13:41reporting not very good at all.
13:42And and you know of course the people,
13:44the control population is skewed towards,
13:47towards good health as you might
13:48expect and that's what we want.
13:49We want that because there's
13:51a comparison group
13:56and I want to just emphasize
13:58again as this whole program where
14:00we're working to be as much as
14:03participant centric as possible.
14:04We want to listen to you.
14:05We want to hear your ideas.
14:06We want to make this
14:07study convenient for you.
14:08We want to return results
14:10as much as possible.
14:12And then we're also very committed,
14:14of course,
14:14as soon as we learn things and listen,
14:16we're going to post the preprint
14:17and we want to have town Hall so
14:19we can explain to you what we
14:21found and get your feedback too
14:22about what you think about it.
14:29With the lab, we're working with the IRB,
14:31the, the regulatory oversight of the
14:33study to figure out for those who
14:35do have biospecimen collections,
14:37what can we return and and how can we
14:39get that back to people, as you know,
14:41so that they get at least some information
14:44about those tests that are being done.
14:47There's some negotiation on our part
14:50because the IRB is worried about us
14:53giving back non clinical tests because
14:55they don't want people acting on the
14:57tests that you know are all research
14:59tests and then we know people are
15:01hungry for any information about
15:03their bodies and what's going on.
15:05So we're we're sort of fighting to
15:06figure out as much as we can give back,
15:08we're going to get back.
15:09We're in the midst of that.
15:14I'll also ask for this like on the chat,
15:17if anyone is in this group who are who's
15:21reporting long COVID and vaccine injury.
15:23I I wonder if you could just tell us a little
15:26bit about like what led you to report both.
15:28I mean, did did one occur before the other?
15:31Did you did did like the vaccine exacerbate
15:34long COVID or like we're trying to understand
15:37what that means exactly because there are
15:39a lot of people who have, like I said,
15:42350 people who've reported that they're both
15:45and and you know what we're just trying to
15:47figure out a little bit about like, well,
15:48what is that an entirely separate group?
15:51I think TJDF you would write it or
15:54ultimately like I think maybe we might
15:56even end should maybe call people and try
15:58to understand or if you can write it,
16:00you can write it here.
16:00You can you can also e-mail us and
16:05what is it?
16:05Listen study at yale.edu,
16:07isn't that right Mitsu?
16:08I think it's listen study at yale.edu.
16:10We'll pull everything
16:11down from the chat also.
16:13But I'm I'm just giving you an example
16:14of why we want to interact with folks
16:16because there's like some things
16:18that that we're trying to puzzles.
16:19So Kath Kathryn,
16:20you say you've long COVID M vaccine injury.
16:23You know it's like again you could do
16:27it in chat. You could do it in e-mail.
16:28It's like what?
16:29What does that mean exactly?
16:31Because you know,
16:33did they how did they why are
16:35you saying that you have that?
16:37How are you disentangling them
16:39and so forth Because you had long
16:41COVID and then you then you also
16:43had something entirely different
16:44or it exacerbated what you had.
16:46That's what we're trying to.
16:48I get a sense from folks about what
16:50that means and and how we should
16:52probably handle it within the study.
16:53We're thinking hard about that
16:54and also open to any suggestions.
17:00I'm just going to say that I know we've been,
17:02we haven't been going as
17:03fast as as we wish we could.
17:05Funding has been an issue.
17:06We're out looking for funding.
17:07We're trying to strengthen our
17:09ability to move faster and better.
17:10But let me let me just say we are
17:12fully committed particularly through
17:14the next like like now like we're
17:16we feel like we're getting enough
17:18data in that we should be producing
17:20insights and putting stuff up and
17:22getting it out and and we're we're
17:24we're strongly committed to this
17:26and and we know that many of you are
17:28frustrated many of you are not are
17:29finding it hard both because of your
17:31symptoms and because of the reception
17:33then the medical care environment.
17:34We don't think enough people are
17:36doing research in this area and
17:37and we want to be good partners in
17:39this and and see what we can do
17:41to push things forward with you.
17:48We're also in the process of of
17:51continue to revise and refine the
17:53kinds of questions we're asking.
17:54We're going to ask more questions of
17:55the controls, try to improve that.
17:57But we're also all ears as you you
18:00know may make suggestions to us
18:01about the things we want to do.
18:02You know we want to be open to
18:04research questions that you guys have.
18:06So you may be wondering about something
18:08and we can be an engine for that.
18:10We can see whether or not we can
18:11put together a quick questionnaire,
18:13send it out, learn together, post the result.
18:16I mean there are ways that we can work
18:21together and you know that Teresa's on,
18:23I saw it today and and she's already
18:27like helping us to think about
18:28people who've got this sort of
18:30tremors and internal vibrations.
18:32Like I said,
18:33we're going to be bringing together
18:35groups of with specific symptom
18:37clusters so that we can work together
18:39and and try to advance the ball.
18:41But we want to be if there are those
18:43of you who really want to be involved,
18:45you know let us know because you know
18:47again we're we're still learning,
18:49we're going to make mistakes.
18:50We got to figure out how to do this well.
18:52But you know we're looking for you to
18:54hear also about your interest and we
18:56want to be respectful of also what you
18:57want to do in the time that you have.
19:03So the the last thing I want to say is
19:05some of you have seen that Kindred posted
19:07this issue about there is an A reporter,
19:11actually let's call her a writer more
19:13than a reporter, who is a physician,
19:17A geriatrician actually I think a
19:19remarkably talented individual who
19:21also writes for The New Yorker.
19:23She wants to do a story on listen and
19:25she's talked to a bunch of people in
19:28listen already and I just talked to
19:30her yesterday and she was just saying.
19:33So I'm so glad to hear that Emily.
19:34So you spoke with her and it was
19:35a good experience.
19:36Doesn't she have like an amazing
19:38manner about her?
19:38She also by the way put me at ease
19:40when I talked to her and And anyway
19:43I'm hopeful that it'll give some
19:45good attention and not just to the
19:48study but to the lives you guys are
19:50leading the challenges you're facing
19:52and and maybe help people understand
19:58you know the legitimacy of of what
20:00you've got because as we still know
20:02there's still people out there who
20:04are doubting what's going on and
20:06we we know you know we we know for
20:08sure that there are a lot of people
20:10suffering and and I I think that
20:11she and Nicole I just think she she
20:13got a lot of of notes from folks
20:15and that's great that you wrote her.
20:17You can write her again she's really nice.
20:19I don't know how many she'll stop at.
20:21You know that it was a really good
20:23response from listen participants and
20:24maybe she's getting to a point where.
20:26She wants to do but don't.
20:27I don't feel that.
20:30You know I think it's great for
20:31people who've given time.
20:31Don't feel bad if if she didn't
20:33get back to you because I think
20:35it was just a lot of lot of folks
20:37but but that was so nice of you
20:38to to volunteer and to offer.
20:47So can you guys make a hand out that we
20:49can give out to doctors explaining 1.
20:50COVID and how exercise makes us worse.
20:53Just something simple.
20:54So TJI think I want to just
20:56sort of push some by the way,
20:57I think it it it's great to think about like
20:59how we can build resources and what can.
21:02But I want to sort of push that into
21:04Kindred a little bit just because I think
21:06Kindred's thinking about like how to
21:07build resources and and and what can happen.
21:10I'm very sympathetic to that and
21:12I think it's really important,
21:13but I just want to for the
21:17purposes of this session,
21:18the focus on the but I don't want to lose it.
21:20So Tal is of course here.
21:21So she can see that and we can talk
21:24about how we can convene a group
21:30with regard to the exercise stuff.
21:32You know, there's some stuff
21:33that's settled science.
21:34I was just wondering also whether
21:35we ought to incorporate some sort
21:37of subsidy about how how does,
21:39how do people react to physical exertion?
21:41What is that just a mean?
21:43But when you say people believe us,
21:45I think people,
21:46I'm happy to say whatever to say.
21:48People need to believe you guys
21:51because you're living you you have
21:53so much wisdom about what it's like
21:55to be living with these conditions.
21:58I would love to talk opportunity
21:59to talk with Lindsay.
21:59Somebody said so I know you
22:01want to answer that now
22:06do yeah. So you just have your
22:09primary or another physician put
22:11in a referral to Yale Neurology
22:13and just say post COVID clinic.
22:17Is there a link or how?
22:19How do they find that?
22:21And by the way, you don't have
22:22to do that now. Maybe you can
22:23get, yeah, I'll put a fax,
22:25like our fax number and thoughts.
22:27It's a little more accessible.
22:29I cannot see anybody out of state.
22:33So that's it.
22:34You have to be in Connecticut or in
22:37New York until actually that mine
22:39have already expired in New York.
22:41I'm not sure it hasn't expired
22:42in New York yet.
22:43It hasn't the telemedicine. OK.
22:45Maybe there's some time like even on
22:47the Kindred side that you can talk
22:49about your experience as a clinician.
22:51And and if you're willing, Lindsay,
22:52I don't put you on the spot, absolutely.
22:54But we could, I mean again like in
22:56the interest of sort of taking that
22:58kind of content on the other side that
22:59could be like a Kindred Cafe Talia
23:01that she can talk about those issues.
23:03I think that would be great.
23:09So Katie, you're just saying in
23:11lieu of sharing our records,
23:13an alternative would be self
23:15reporting diagnosis test done and
23:17so on would be more accessible
23:19folks tech wise and privacy wise.
23:22So first of all thank you.
23:25Then you say, I remember when I filled
23:27out lists and it had limited options
23:28and not maybe you're saying not complete
23:31symptoms and diagnosis etcetera and
23:33appreciate your your your thank you,
23:35we thank you really honestly.
23:37So I think there's a couple things here.
23:38One is you know what we were
23:40trying to find balance by the
23:41way we worked with many of you.
23:43When I say you participants,
23:44people are part of listen as we
23:46tried to construct these these
23:47surveys and we're trying to balance
23:49like what was reasonable.
23:51In fact the reason they were
23:53segmented and we were doing this
23:55on the on the Hugo Kindred side,
23:56the reason they were segmented because
23:58folks said that it was just overwhelming
24:00to try to do this in a single questionnaire.
24:02But but you know we have a lot of
24:05symptoms I think like aren't there's
24:06like 100 symptoms and a lot of
24:09conditions and and a lot of people
24:10gave us feedback like you know that's a
24:13lot of work to answer all these questions.
24:15And honestly we we probably would
24:17have wanted even more you know
24:19because there's because we're hearing
24:20from you all about the wide range
24:22of things you're experiencing.
24:23We want to fully capture all of it.
24:26So we were kind of in a pickle.
24:27You know it's like we do more to be
24:29less and and so that's you know we
24:31we need to be thinking about like
24:33how to how to do this best And then
24:37and then the thing about the medical
24:39records and means that you know
24:41Hugo has policies that you know no
24:43data moves without your permission.
24:44Nothing goes off Hugo nothing's sold.
24:46Nothing's nothing.
24:47You know many places de identify
24:50health systems give your data to other
24:52companies that de identify and sell it.
24:54Hugo doesn't do that.
24:55You know people are uncomfortable.
24:57They shouldn't share their data
24:59that's that's fine you know on the
25:02listen side when we get it all we also
25:05because we're overseen by the IRB by Yale.
25:07You know we we don't do anything else
25:09with the data except what what we're
25:11permitted to and medical records
25:12sort of complement what people self
25:14report so that's why we do it this
25:16way but but I you know I there's
25:17still be some people no matter what
25:19who feel uncomfortable about it but
25:21are still willing to do self report.
25:23So we're happy to have whatever people
25:26are willing to share but we're trying
25:28to build this so again participant
25:30centric nothing happens with your
25:31data except what's explicitly you
25:33know permitted and so forth and
25:35and that's what what we do as
25:40part of the state we would like
25:42to de identify the data and share
25:44it with other investigators only
25:45for the purposes of research and
25:47you know probably we should have a
25:49town hall to talk about that but I
25:51I think I'm I'm a big believer in
25:53open science and I want to be able
25:55to get a sort of force multiplier
25:57effect of any data that's available.
25:58We need to make sure it's fully
26:00de identified so that it's it's
26:02safe and secure
26:07kind of want to pull treatments
26:09into the into the kindred side.
26:12But it there is a question about whether we
26:15should be trying to understand treatments.
26:17One of the things we thought was that we
26:20should we could do a descriptive paper
26:23on and it focuses on people's experience
26:25and their symptoms and the timing
26:27and so forth and then another paper.
26:29And these are just quick quick hits
26:32just so people can see and know like
26:34sort of organize the data about the
26:36kind of treatments people are getting
26:38and and and it's hard in this context
26:42to know what works or what doesn't work
26:45because of how everyone's trying a lot
26:47of different things at once and and
26:49people's symptoms are coming and going
26:51but but at least it may be helpful to
26:53kind of see what were people perceiving
26:54about that and what people are trying.
27:01The the question was really are we
27:04are keeping track of supplements which
27:05which we are being reported by people
27:07but whether or not they're producing
27:09positive results ends up being a difficult
27:11thing to infer from this design.
27:15It it's it's hard because I feel
27:18like the time course of long
27:21COVID without any treatment,
27:22it has its own time course rights.
27:25People generally improve over time very,
27:30very, very slowly. But then adding
27:32in treatments or life stressors,
27:34it's it's hard to control and know it.
27:38And I don't think there's any
27:40supplements off the top of my
27:41head that are like a must have,
27:43must take slam dunk. You know,
27:45I think it's it's different for everyone,
27:47'cause I know that, like you were saying,
27:50we're going to find out that there's
27:52not one cause of long COVID.
27:53Depending on the constellation of symptoms,
27:55people are going to have different
27:58mechanisms and causes and so that
28:00means different supplements treatments.
28:09So Joe asked about how would I
28:10get a test for someone who got
28:12the vaccine but wasn't affected.
28:14And and I guess also this gets to like,
28:16what kind of controls do we want?
28:18Look, I think we're happy to get somebody
28:20who's like you and first of all if
28:22you got somebody who got the same lot,
28:24it wasn't affected. That's like Nirvana.
28:27Like that's amazing.
28:28Like if the especially that
28:30person's near your age and sex,
28:32like that's a really great control.
28:33But I I think it's going to be hard.
28:35I mean ideally and look almost
28:37everyone in the country's been infected
28:39by long by COVID at this point.
28:41Some people got long COVID,
28:42some people don't.
28:43If someone with long COVID,
28:45like when we're going to look for controls,
28:48we're going to look for someone
28:49as similar to you as possible.
28:50I think it's hard to match someone who
28:52got infected just when you got infected.
28:54But we're just looking otherwise.
28:56Basically for someone who doesn't
28:57have long COVID,
28:58who's who's in your demographic,
29:00same vaccine injury,
29:01someone who got vaccinated but didn't
29:04get vaccine injury and and as close
29:06to your demographic as possible.
29:08I don't know, Bernal,
29:09if you want to say something about
29:10your thinking about that and then
29:11let me just say there are two kinds.
29:13There are two issues here.
29:14One is for the lab controls,
29:16but we're also interested for
29:19broadly in listen,
29:20so anyone who can help us by like
29:22just having people join as controls,
29:24that's fantastic.
29:25And then people who particularly
29:27have biospecimens taking,
29:29we're probably going to go to those
29:30people directly and really try to get
29:32to see whether we can get someone who
29:34matches because we're for those people,
29:36we're going to go out and
29:37collect the biospecimens.
29:38But do you want to say
29:39anything about that Bernoulli?
29:41Yeah. We have been trying to
29:43match the vaccines as well.
29:45And at the same time,
29:46different parameters and
29:47different surveys that have been
29:49taken are also being analyzed.
29:56OK, thank you. So First off,
29:58we already have samples from 85 participants.
30:01Thank you for that.
30:02And thank you for bearing with the
30:04delays in sending out the phlebotomists.
30:08That's always a problem because we have
30:10to find a perfect phlebotomist at the
30:12right time and according to the area.
30:15So this has been the problem and at the
30:18same time we are also trying to prioritize
30:20some samples as Harlan has mentioned
30:23to gauge what is exactly happening.
30:30There were two questions regarding auto
30:32antibodies which I thought we could answer.
30:35So the first question that came was asking
30:38about the signs of auto antibody detection.
30:41So usually antibodies are to
30:43defend US against anything
30:45that's external pathogens per SE.
30:48But auto antibodies are antibodies
30:51that you know, attack our own proteins.
30:54So that's why we say auto antibodies.
30:57And there was this question,
30:59is there a need to know the target
31:01auto antigen before you can search for
31:03its corresponding auto antibody? Yes.
31:05So in the preprint that we have published
31:09on long COVID and we are looking at
31:136000 extracellular and secreted proteins.
31:15But you should also see from the
31:17data that we have generated and the
31:20analysis that has been done so far,
31:22what we see is that we do not
31:26see much patterns with say ACE 2
31:29receptors that has been questioned.
31:31So we had a question as to whether we
31:33are looking at ACE 2 auto antibodies.
31:35Yes, we have looked at ACE 2 auto antibodies
31:38and after one year of acute COVID,
31:42those who are saying that they
31:44have long COVID in our data set,
31:45we have not found reactivity
31:48to ACE 2 receptors.
31:50But at the same time,
31:51if you look at what kind of clinical
31:53tests are done in order to look
31:56for auto antibodies in anybody
31:57suffering from autoimmune diseases,
31:59you'll observe that many of them
32:02are nuclear proteins and RNA
32:04bound proteins that are looked at.
32:05So we haven't looked at those.
32:07So we cannot definitively say
32:09that they are not.
32:10There are no antibodies against those.
32:13So it is no antibody detection for a subset,
32:17but there are certain receptor
32:18proteins that we see have higher
32:20reactivities in long COVID.
32:25So we are running the assays,
32:27some of the assets real time actually.
32:29So for all the samples that have
32:31been collected so far, we have been
32:33able to run the micro clot assays.
32:35A part of it, there are two parts to
32:38the assays and one part is to be done
32:40immediately after receiving the sample.
32:42Those are being done.
32:43The rest of them are being
32:45stored to finish the assays.
32:47Yeah. So we have done them.
32:54Somebody asked if we accept
32:55scanned PDF results from labs
32:57done overseas. With that, yes,
32:59so this question has come up a few
33:01times in the chat and absolutely
33:03we have you can upload individual
33:05documents using the Hugo Connect tool.
33:06So the same way that you
33:08would connect your data,
33:09you just go on and I think it's the
33:11the last option in the little pop up.
33:12So it's going to say upload individual
33:15documents and you just kind of
33:16upload it like you would upload an
33:18individual PDF on any other website.
33:20I'll link a tutorial on how to
33:22do that right now in the chat.
33:24So look out for that.
33:25And if you do run into any issues,
33:27you can always contact our support
33:28team at support at Hugo dot health.
33:31So the answer is yes.
33:36Somebody, Paul was just asking this
33:38global question about the research.
33:40I mean, I I don't know if you
33:41were there at the beginning.
33:42I was just sort of you know,
33:43talking about like I think our job
33:45this is there's so little known about
33:47this and I know there are others have
33:50done survey and published about this.
33:52But you know, we're going to try to take
33:54as many people who have finished out
33:56the surveys characterize those groups.
33:58Also try to understand what
34:01clusters exist within them.
34:03Tiana's going to be doing some qualitative
34:05research to try to get the voice,
34:06all of your voices out there.
34:08I mean part of this is raising awareness,
34:10helping to educate people what
34:12the experiences of people,
34:13how many different groups are
34:15there under these umbrella terms.
34:18And then work really hard to see
34:19whether or not the insights from the
34:21lab can help us to to understand
34:24some of the mechanisms so that it
34:27can accelerate our progress towards
34:29diagnostics and therapeutics.
34:35Teresa is helping with this and we
34:36hope to bring together a large group
34:39of you who have this and be able to
34:42like both exchange information to be
34:44able to help characterize it better.
34:46You know I think this is also like will
34:48be and Lindsay you know I'm hoping
34:51that your clinical insights will be
34:53important here too and and try to figure
34:55out how we can make some progress.
34:56We want to do this for all of the
34:58areas but but this one in particular
35:00I think is there's a lot of people
35:02who are talking about this,
35:03this you can't see it but people feel
35:07it and and they and so many people are
35:10describing it in a very similar way.
35:12Like not people who got together and shared,
35:14you know shared shared experiences
35:16yet but like never met each other
35:18and they're saying the same thing.
35:20So you know we we want to try to
35:23illuminate this as much as possible.
35:25Do you want to say anything about that,
35:26Lindsay?
35:29Yeah, absolutely.
35:30And I think that's, you know,
35:33internal vibrations have been linked
35:35to other conditions before COVID,
35:38so like chronic fatigue or
35:40fibromyalgia or Parkinson's,
35:42some other conditions.
35:44And so, you know,
35:46one of my suspicions is that it's
35:48the very small nerve fibers that
35:51are misfiring and damaged in
35:53these conditions and maybe leading
35:55to this feeling of vibration.
35:57So you know, yet to be proven,
36:00but there's some interesting
36:03supporting evidence and we've seen
36:05quite a bit of small fiber neuropathy
36:08in long COVID which I've published
36:10on before too that's terrific.
36:20Do we have plans on conduct
36:22trials of immunomodulating drugs.
36:26So I think the thing about this Pakslova
36:29trial which by the way has been,
36:32was slow because there's some mechanics
36:33about it trying to get it up at Yale.
36:35And but I think that when we've worked
36:38out all the kinks it's going to,
36:40it'll be more straightforward
36:41for us if we want,
36:42if we have the opportunity to do others.
36:44And I mean at least it's my hope that
36:47that we can start being in a position so
36:50that we can rapidly run through trials.
36:52We're going to have to figure out the
36:54funding mechanisms and how that works.
36:55But if we if we can work synergistically
36:58with Kindred and and listen and be
37:00able to rapidly enroll and get rapid
37:03answers about whether people are feeling
37:05better like that would be amazing
37:07and that's the dream about this.
37:09So but right now I think we're
37:12all on that PAX LC trial.
37:14We're all hands on deck to get it stood
37:17up just to say for that probably that'll
37:19we hope that we'll randomize people by
37:22by by beginning of July at the latest.
37:25And then because of the way that it's working
37:28that people are funding Lane through Kindred,
37:30we're hoping for really rapid enrollment.
37:33And just as, I mean,
37:35one of the things are we're trying
37:36to figure out how we expand.
37:37Right now it's it's Connecticut,
37:39New York and Florida for the same
37:41reasons that Lindsay was talking about.
37:43I know of you, Lindsay, by the way,
37:45it's really easy to get a
37:47telemedicine in Florida.
37:48You just like it takes just a couple days.
37:50But anyway,
37:50I'll tell you about that.
37:51But
37:51really glad it would be good actually
37:53because we have a lot of snowbirds, Yeah.
37:55And actually what Connecticut's trying
37:56to pass a law through the legislature.
37:58So for one application we could
38:00get privileges in 37 states.
38:02So I I think the future may be
38:05that we have the ability to have
38:07on our trials to be able to more
38:09easily do larger numbers of states.
38:11And for even clinically the problem
38:12is there's only one Lindsay but but
38:14we have to figure out like how how
38:16that's going to work and and what
38:18we can do to help serve the need.
38:21I don't think there are enough studies
38:23being done for these conditions.
38:24And that's the,
38:25that's one of the principal problems is that,
38:28you know, there's not enough and
38:30they're not moving fast enough and
38:31and you could say that about us too.
38:33But but yeah,
38:34I mean
38:38that's that's an issue.
38:43You're the best
38:44specialist to see if they have pots.
38:48Yeah. Again, I think you know what I
38:51was thinking is even on the Kindred
38:53side that maybe we should have some
38:55cafes that are specifically focused in
38:57particular areas and in those areas we
38:59can actually see if there are people.
39:01Again, we don't want to endorse anyone,
39:03but we might be able to help talk
39:05about where there are centers
39:06that are focusing on that.
39:07I actually want to do some work
39:11in in listen on POTS as well.
39:14And I've talked to American College
39:17Cardiology about partnering with us
39:19on this and also being a resource
39:21to identify which cardiologists
39:22are welcoming patients.
39:23Understand that this is real want
39:25to be you know have have some
39:27ability to help people interest
39:29in in caring for these patients.
39:31As you know there's there are there
39:33are pockets within our healthcare
39:35system where people don't feel
39:37welcome right because these are hard
39:39that that then we're early in the
39:41knowledge doctors feel inadequate
39:42and and the visits don't go quickly
39:45because people got a lot of issues And
39:47so we want to know who does want to
39:49see these people you people and and
39:51how can we how can we help with that.
39:53So you know where I think that would
39:56be good to think about on the Kindred
39:58side about how we can bring people
40:00like Erica Spatz I'm sure would be
40:01interested and willing to be part
40:03of one and we could we can bring in
40:05some people from college cardiology
40:06too and and and you know try to bring
40:10in resources this way because I know
40:13people are are really eager to know
40:15where to look and what they can trust.
40:17And and again people are running
40:19their own experiments all the time
40:20because you just can't sit around
40:22and wait when you're suffering you
40:23want to try things but you don't want
40:25to disadvantage yourself either by
40:27but but the potential to make things
40:29worse so that that's that's the issue
40:36they're asking about lactic acid levels.
40:40So Bernali I I can't remember if
40:42that's one of the is one of the
40:44things that's being measured. I
40:46no lactic acid. We haven't at least
40:48measured in the preprint that we have
40:50with in collaboration with Mount Sinai.
40:57I think some of the issues too have
40:59to do with how the what can be done
41:02with the way that the specimens
41:04are collected and and processed.
41:05So, but we can look into that.
41:10So yesterday we were at a meeting,
41:11we were talking to a person who
41:13is an expert in metabolomics.
41:15So the first step was how many
41:18hours after collection do you
41:20isolate the plasma And it's
41:22just 30 minutes was his maximum.
41:24And we received samples overnight from
41:26different parts of the country. So
41:33no, I think somebody's talked about
41:35a control that's different sex.
41:37I think it's OK though.
41:38You know it's like I I don't it
41:41anything is helpful in terms
41:43of bringing in controls and if
41:45it's someone you know if you can
41:47help us bring in someone who's
41:48sort of in the same position as
41:50you are but did not affected,
41:52then that's that's good too.
41:53You know that that works.
42:00So I don't know, Tiana,
42:02if you want to just say a word
42:04or two about what your hopes are
42:06for the kind of like why are you,
42:07what are you hoping to do
42:09with qualitative research?
42:14Yeah, so on the qualitative side,
42:18that would be the big picture.
42:20Goal is to give voice to everybody
42:23who's having these experiences.
42:25And so how does the qualitative
42:27side of Listen differ from the
42:29quantitative side of listen?
42:31So one aspect would be the
42:33stories that all of you,
42:35many of you have already shared
42:37on the platform that you wrote
42:39in detail about your experiences.
42:41Just know that we are reading
42:43through those and we do care.
42:44And going forward, if the IRB,
42:48the regulatory body here to approve research,
42:52approves the qualitative
42:53protocols that we have in place,
42:55we're hoping to interview some of
42:57you and just sit down with you,
42:59talk to you for an hour or so and
43:02really hear about your experience
43:04in way more depth than what can
43:06be captured through all the data
43:08that you've already given us.
43:11That's great. Imagine we have a
43:13medical student who's sort of
43:14that tuned into thinking about the
43:16patient voice and trying to do that.
43:17I mean, we're really fortunate to
43:19have Tiana working with us and
43:21interested us and she wants to go into
43:23neurology so that she has a particular
43:25interest in some of the neurologic
43:26issues that there you go, Lindsay,
43:27particularly some of the neurologic
43:29issues and trying to figure out if,
43:32if we can help. And I thought,
43:33like, wouldn't that be amazing?
43:34If a medical student could help solve some
43:37of this stuff, that would be amazing.
43:40Amy had a nice comment about,
43:42listen, I would really appreciate it.
43:43But let me just say we approach
43:45this with humility.
43:46Like we know we don't,
43:48we don't do everything right.
43:49We we may actually stick our
43:51foot in our mouth or, you know,
43:53misstep or somehow make things
43:55more difficult to like.
43:56We're just always looking for feedback.
43:58And you know,
43:58we're going to do the best we can.
44:00We're we're committed.
44:01We want to help.
44:03We want to work together and we want to try.
44:07You know,
44:07we want to figure out whether we
44:09can all solve this in a way that can
44:12relieve suffering and turn this around,
44:14get let people get back to their
44:15lives so that that's the goal.
44:17And so you know, I, I,
44:20I and when these other studies
44:21I have sympathy for me,
44:22I think I'm glad anyone's doing research.
44:24And you know,
44:25even when you encounter somebody
44:27doing research and something happens,
44:28it's not exactly the way you want.
44:31Like,
44:31at least,
44:31I mean at least we should applaud
44:33that they're doing something right
44:35because there's a lot of places that
44:37aren't aren't engaging and doing things too.
44:39So,
44:40you know,
44:40I mean,
44:41I hope that they're all wanting to listen
44:43carefully about how they can improve too.
44:44I think everyone in the research community,
44:46we need to move away from
44:49this hierarchical idea in US,
44:50subjects either comply or don't comply,
44:53but how do we work together
44:54and stream the ideas?
44:55And the last thing I'm going to say
44:57again is ideas about how we can
44:59encourage people to fill out surveys,
45:01What frequency of surveys,
45:02how we can get people at least
45:05to take the opportunity to
45:06consider connecting their records.
45:08You know, again, I'm, I'm cognitive.
45:10Some people may not just not want to do it,
45:12but for people who are willing to do it,
45:14how can we encourage them to say
45:15this is for the good of the study
45:17And and it will help a lot if they do that.
45:19Like your ideas about how we can
45:21think about reaching folks and
45:22then improving the diversity of
45:24the study and then also just
45:26spreading the word about the study.
45:27Because ultimately the more people we
45:29have the more we can learn together.
45:31So I think these are some of
45:32the central messages we want to
45:33say and and part of the reason
45:34we just want to have this meeting we
45:35hadn't met since March and we're recording
45:37this so people other people can listen.
45:40We want to tell people
45:41we're not standing still.
45:42We're trying to move forward.
45:43By the way we're strengthening
45:45our team Lindsay and Tiana,
45:46I mean that's you know we're
45:47bringing in strength and we're
45:48going to try to bring in more.
45:50Akiko will be back at future meetings
45:52and you know she's she's not only
45:55doing good science but she's also
45:56being a great ambassador for the
45:58importance of this kind of research.
45:59She she lends a lot of credibility to
46:03to the idea that that you know what
46:05you guys are experiencing is real.
46:07We know it's real.
46:08But I'm just saying it's like there
46:10are you're constantly colliding with
46:12people who are not as in tune with
46:15what people are experiencing or
46:17or writing things and and and even
46:19weaponizing studies in ways that
46:21you know undermines the validity
46:23of what you're experiencing.
46:25So you know that I think that's part
46:27of our job is not only do the research
46:29but but to have people have respect for,
46:31you know,
46:32the experience of what you're going
46:33through and and and that goes,
46:35you know,
46:36long COVID vaccine injury people have both.
46:38I mean you know this and it goes by
46:40the way that there are lots of other
46:42people who we believe are suffering
46:44from similar kinds of syndromes from
46:46other conditions or other vaccines.
46:47And you know what we're hoping
46:49is that this helps crack the case
46:51to help them to like, you know,
46:52people not only dealing with the illness.
46:54So they're having to deal with
46:56a lot of people who are not even
46:58sure about the reality of it.
46:59And so that's that's part of
47:01what we have to you know,
47:03face as we move forward.
47:05So anyway we're we're at the end.
47:07I wanted to thank you all for your
47:09participation.
47:09We'll we'll go through the chat
47:11and the questions to see what we
47:13might have missed and what we can
47:14you know somehow get back to you.
47:16We'll work with Talia and and the
47:18and the Kindred team to to try
47:19to get this stuff back to you.
47:25Just want to express deep
47:27appreciation for your participation
47:29in this in this town hall,
47:31but even more so in the listen study
47:33and for your belief that we together
47:35we can actually move things forward.
47:37So thank you very much.
47:40Thank you everyone.
47:42And just one thing before we sign off,
47:44a reminder that on next Tuesday we
47:47have me check my Fact Check myself.
47:49We have the Kindred Cafe with Wes, Eli.
47:51So if you haven't already registered,
47:53please do that as soon as you
47:55can if you're able to make it.
47:56And that's going to be
47:58from 6:00 PM to 7:00 PM ET.
47:59So, and
48:00Wes is said amazing.
48:02He's just incredible just a
48:03extraordinary individual.
48:05Wise, smart.
48:06Really, really amazing.
48:09Great. Thank you all.
48:12Thank you all so much.