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CII - Lisa Sanders, MD, FACP

August 28, 2023
  • 00:00So my name is Julio Silva,
  • 00:02I'm a an MDPHD student in Akikawasaki's lab.
  • 00:07And today I actually have the pleasure
  • 00:10of introducing our next two speakers
  • 00:14which in as a group I think our
  • 00:18these two people in addition to being
  • 00:22extraordinary clinicians really help
  • 00:24bridge the gap between you know,
  • 00:27medicine and science and helping
  • 00:30the public understand it and
  • 00:32communicating with the public.
  • 00:34And I think that that you know often is
  • 00:38something neglected but so crucial as
  • 00:41it builds trust between the clinicians
  • 00:44and people who who really you know,
  • 00:47do this as as well as like the public who
  • 00:50we you know ultimately our goal is to serve.
  • 00:53So with that, I first want to
  • 00:56introduce Doctor Lisa Sanders.
  • 00:59She is perhaps she's a,
  • 01:01she's an associate professor
  • 01:02here at Yale School of Medicine.
  • 01:05But she's perhaps best known,
  • 01:07especially from a public perspective,
  • 01:11for her biweekly column that she
  • 01:14writes for in the New York Times
  • 01:17Magazine called Diagnosis and this.
  • 01:20This, of course,
  • 01:21has served as an inspiration
  • 01:23for TV shows like House,
  • 01:26which she served as a consultant for,
  • 01:28as well as the Netflix docu
  • 01:32series called Diagnosis as well.
  • 01:35So I I want to take this time
  • 01:37just to invite her up and have her
  • 01:40present. So thank
  • 01:49you. Well, I don't know what I'm doing here,
  • 01:51talking to a bunch of people,
  • 01:52a bunch of scientists,
  • 01:54but I'll do my best.
  • 01:57So I'm interested, obviously,
  • 01:59I'm very interested in long COVID,
  • 02:01but I'm very interested in long
  • 02:03COVID because it's part of a
  • 02:05much bigger story about what
  • 02:07happens to people when they
  • 02:09get better but don't get well.
  • 02:13So if you look at just long COVID, it was
  • 02:22interestingly. Thank you.
  • 02:27Okay, Okay, great. Thank you
  • 02:33long COVID was first identified by
  • 02:37patients Fiona Lowenstein at the top.
  • 02:40She wrote an oped piece in the New York Times
  • 02:44about her extremely slow recovery from COVID.
  • 02:47The Oped was titled We Need to Talk about
  • 02:50what coronavirus recoveries look like.
  • 02:53There are a lot more complicated
  • 02:54than most people realize,
  • 02:55so that was the first sort of
  • 02:58hint that something was going on.
  • 03:00And that was published in April 13th of 2020,
  • 03:03so very early in the pandemic.
  • 03:05She felt lonely and so isolated
  • 03:08because of her lengthy recovery.
  • 03:11So she started an online chat group
  • 03:13to talk to others who are trying
  • 03:16to recover from this new virus.
  • 03:19The woman on the bottom,
  • 03:20Elise Perrego.
  • 03:21She's a research scientist,
  • 03:23and she introduced the term long COVID.
  • 03:26She she created this hashtag
  • 03:29long COVID in May of 2020.
  • 03:32And of course that term was
  • 03:35immediately embraced by the community.
  • 03:39So it's made quite a splash since then.
  • 03:44At there was a recent CDC study published
  • 03:48I think 2 weeks ago that estimated that
  • 03:51up to 23 million people in the United
  • 03:55States have developed along COVID.
  • 03:57That's a lot.
  • 03:59That's a whole lot.
  • 04:01So what exactly how do we define long COVID?
  • 04:08Actually really badly,
  • 04:09in my opinion and in everybody's opinion.
  • 04:13I went to a conference a few weeks ago
  • 04:16at the National Academy of Sciences
  • 04:19or Medicine rather to consider whether
  • 04:22the definition of long COVID should
  • 04:25be changed to make it more narrow.
  • 04:28Right now it's defined as the signs
  • 04:34and symptoms and conditions that
  • 04:36continue or develop after an initial
  • 04:39COVID-19 or SARS COVID 2 infection.
  • 04:41So basically what they're saying you had
  • 04:45COVID and then something bad happened.
  • 04:47So you can see that that's a that's
  • 04:50a a ridiculously broad definition.
  • 04:55So it has the symptoms have to be
  • 04:58present for four weeks or more after the
  • 05:01initial phase of the of the infection.
  • 05:03And actually The Who uses 3 months
  • 05:06because it's not uncommon for
  • 05:08people to be to still feel terrible
  • 05:11a month after their infection.
  • 05:14But the National Academy said four weeks.
  • 05:19It's multisystemic, often.
  • 05:23It often presents with relapsing
  • 05:26and remitting, A relapsing,
  • 05:28remitting kind of pattern and it
  • 05:31might progress or worsen over time.
  • 05:34It can even get to be very severe
  • 05:36and life threatening, months,
  • 05:38even years after the infection.
  • 05:42And finally what they say is that
  • 05:45long COVID is not one disease.
  • 05:47It's lots of different things.
  • 05:49It's like, I don't know, cancer, you know?
  • 05:52I mean, it contains multitudes.
  • 05:54It's not like cancer, but in that way it is.
  • 06:00How does it manifest itself?
  • 06:02Everywhere, I mean everywhere.
  • 06:04You know, it's it's in the brain,
  • 06:08it's in the heart,
  • 06:09it's in the stomach, insomnia,
  • 06:12anxiety, cough, pulmonary fibrosis.
  • 06:17I mean it's just insane the range of
  • 06:20the symptoms that it includes in.
  • 06:24In May, there was a study published
  • 06:29in JAMA that looked at at a lot
  • 06:32of did a meta analysis of a lot
  • 06:34of studies that were reporting
  • 06:35on long COVID and came up with
  • 06:3812 symptoms linked to long COVID.
  • 06:40This has been a source of great
  • 06:43irritation to a lot of the people I see
  • 06:46who don't find their symptom up on that list,
  • 06:49but they were trying to figure
  • 06:51out a way to narrow it down so
  • 06:53that it's not just anything bad
  • 06:55that happens to you after COVID.
  • 06:57So that was their effort.
  • 07:02I'm a clinician, so the answer to
  • 07:07why is not something that I embrace.
  • 07:11My question is what can I do to help?
  • 07:14Why is not so good?
  • 07:15So I depend on other people
  • 07:18to help me understand why.
  • 07:20And so you can see that there are many
  • 07:23different possible causes and probably
  • 07:26even more than this that lead to
  • 07:30different pathophysiologies that can end,
  • 07:32that can bring a patient to having
  • 07:36task or long COVID endothelial
  • 07:39dysfunction and these microclots
  • 07:41that get talked about a lot or
  • 07:45persistent viral reservoir which
  • 07:47Harlan Krumholtz is trying to possibly
  • 07:51identify through his Paxlovid study.
  • 07:55So there are a lot of different
  • 07:56ways auto antibodies.
  • 07:57So there are a lot of different ways
  • 07:59that this disease impacts our patients
  • 08:02and because it's got because it's
  • 08:05such a a huge disease where which can
  • 08:08manifest in so many different ways,
  • 08:10there's a there's a fair
  • 08:12amount of skepticism.
  • 08:13So you know I have a a very well
  • 08:15used box of Kleenex that is replaced
  • 08:18daily because people are quite
  • 08:21frustrated and sad and wonder if
  • 08:24they're insane when they come in with
  • 08:26some of the symptoms that they have.
  • 08:30So there is some good news. Last week's
  • 08:37Morbidity and Mortality Weekly
  • 08:39Report from August 11th reported
  • 08:41that the prevalence of long COVID
  • 08:43had declined over the past year
  • 08:52from like. So if you look at all Americans,
  • 08:57the number of patients with long
  • 09:00COVID decreased from 7.5% to 6%.
  • 09:02So that's good.
  • 09:04And if you just look at adults who
  • 09:08who actually had known COVID-19,
  • 09:12if you just limit it to that,
  • 09:13it decreased from basically 19% to 11%.
  • 09:17But still, if you knew that you had a
  • 09:21one in ten chance of having this bad
  • 09:25cold last for weeks or months or years,
  • 09:31I mean it's I think that's pretty it's
  • 09:33still a pretty frightening possibility.
  • 09:39Approximately 1/4 of adults with long COVID,
  • 09:43it's a lot of people report significant
  • 09:46limitations on their activities.
  • 09:50That same report from the MM from
  • 09:53the CDC said that long COVID is
  • 09:56associated with a lower likelihood
  • 09:59of working full time and a higher
  • 10:02likelihood of being unemployed.
  • 10:04The report cites data from the New
  • 10:06York State Insurance funds that 18%
  • 10:09of claimants with long COVID could not
  • 10:13return to work for more than a year.
  • 10:16So that's devastating for most people.
  • 10:21Just to let you look at the,
  • 10:24the change in prevalence,
  • 10:29sorry for it being so busy,
  • 10:32but that big fat black line is the
  • 10:35average and you can see that it drops
  • 10:37at the at the end of last year and
  • 10:40then around January sort of stabilizes.
  • 10:43But if you look at the different age groups,
  • 10:47the bottom age group,
  • 10:48those are people over 80.
  • 10:50Obviously they have the lowest
  • 10:53prevalence of long COVID,
  • 10:55but it is creeping upwards and the
  • 10:58other group where there's an inflection
  • 11:00point and it started to creep up
  • 11:02by the people 50 to 55 years old.
  • 11:05So people still in,
  • 11:09I like to thank the prime of their
  • 11:11life or at least part of it.
  • 11:13So it's distributed differently.
  • 11:14I mean it is good news overall,
  • 11:18but people are still quite debilitated.
  • 11:26So this comes from the INSPIRE study
  • 11:30that's the innovative support for patients
  • 11:34with SARS COVID 2 infection registry.
  • 11:37This looked at, I thought this
  • 11:38was such a an interesting idea.
  • 11:41So this looked at 3800 patients who
  • 11:44are getting tested for COVID and
  • 11:47were recruited before the results
  • 11:49of their tests were known and
  • 11:51surveyed then about their symptoms.
  • 11:53And then at three months, six months,
  • 11:56nine months and a year after that test,
  • 12:00the dark blue lines at the top.
  • 12:02The dark blue bars represent the 12188
  • 12:07patients who tested positive for COVID,
  • 12:09who filled out all of the surveys.
  • 12:11The lighter blue below are the survey
  • 12:15results of the 453 patients who were
  • 12:19presumably sick when they take took the
  • 12:22test but tested ultimately tested negative.
  • 12:24For COVID, the dark bars represent
  • 12:27persistent symptoms in both groups.
  • 12:30The lighter tinges at the
  • 12:32end are new symptoms,
  • 12:34symptoms that they didn't have
  • 12:35when they took.
  • 12:36For this one, this is 3 months out.
  • 12:40So the light blue is symptoms that
  • 12:42didn't exist when they took the first
  • 12:45survey when they were first sick,
  • 12:47but exists now.
  • 12:48And so you see that the people who
  • 12:52didn't have COVID had something and with
  • 12:57persistent symptoms at three months,
  • 13:02then again at six months
  • 13:08and again at a year. So these are,
  • 13:12this is the same group of people
  • 13:14just tracked over the year.
  • 13:19So I was surprised by this when I when
  • 13:24Erica Spatz first told me about it.
  • 13:26But I shouldn't have been because
  • 13:29this idea of a post viral or a post
  • 13:33infectious syndrome is far from new.
  • 13:37You know, if you look back in history,
  • 13:42the Russian flu in 1892,
  • 13:46it's called the Russian Flu because
  • 13:48the first reported cases were in
  • 13:51Saint Petersburg was a devastating
  • 13:55pandemic. This is the cover of
  • 14:00London's Illustrated Police News.
  • 14:02It reported on the 1st and most deadly
  • 14:06pandemic of the industrial era.
  • 14:08It killed one out of every 1400
  • 14:11people alive on the planet.
  • 14:13So a really terrible flu.
  • 14:18But even then, there were many
  • 14:20cases where the symptoms persisted
  • 14:22well after the flu resolved.
  • 14:24The neurologic conditions observed
  • 14:26after the Russian influenza were
  • 14:28given many different names. Neuralgia.
  • 14:30Do you know them from old novels,
  • 14:33if you read old novels or
  • 14:35from your history books?
  • 14:36Neuralgia, Neurasthenia,
  • 14:38neuritis, nerve exhaustion grip,
  • 14:42cataplexy, postgripple, numbness.
  • 14:44I mean, you can recognize
  • 14:47aspects of long COVID in this.
  • 14:50You know, the peripheral neuropathy,
  • 14:52the post exertional malaise,
  • 14:56prostration, psychosis,
  • 14:58inertia, anxiety, paranoia.
  • 15:00These are what how these
  • 15:03people's symptoms were described.
  • 15:05There was a a Victorian Dr.
  • 15:08throat specialist who described
  • 15:09how influenza appeared to quote run
  • 15:12up and down the nervous keyboard,
  • 15:15stirring up disorder and pain in
  • 15:17different parts of the body with what
  • 15:21almost seemed malicious Caprice.
  • 15:23That's how that was described.
  • 15:25And that was 1892.
  • 15:28And then of course there was
  • 15:30the Spanish flu in 1918.
  • 15:32And let me just put in a
  • 15:33good word for the Spanish.
  • 15:34The reason it's called the Spanish
  • 15:36flu is because during World War
  • 15:38One they weren't involved in the
  • 15:40war and so they had a Free Press.
  • 15:42And so they were the first people
  • 15:45to report this epidemic,
  • 15:46which was absolutely devastating.
  • 15:49It's estimated that about 500 million people,
  • 15:53or 1/3 of the world's population,
  • 15:55became infected with this virus.
  • 15:58The number of deaths was estimated to
  • 16:00be at least 50 million worldwide and
  • 16:02about 675,000 occurring in the United States.
  • 16:06Mortality was mortality was high
  • 16:09in people younger than five,
  • 16:11those between 20 and 40,
  • 16:14and those who were 65 and oldest,
  • 16:17the highest.
  • 16:18Mortality in healthy people was a
  • 16:21unique feature of this particular pandemic,
  • 16:25but for those who are who survived,
  • 16:27at least some of them,
  • 16:29the suffering was not over the the
  • 16:33long term neurologic effects of
  • 16:35this flu included Parkinsonianism,
  • 16:38catatonia,
  • 16:39and something called Encephalitis lethargica.
  • 16:46That term was first used by an
  • 16:50Austrian neurologist after he
  • 16:52identified an increased number of
  • 16:54patients in Vienna with meningitis and
  • 16:57delirium during the winters of 1916 and 1917,
  • 17:01and in 1980.
  • 17:02Eighteen disorders that were similar to
  • 17:04encephalitis lethargica were reported
  • 17:06elsewhere in Europe and the United States,
  • 17:09with a peak of cases in 1923,
  • 17:12and declined over the course of the decade.
  • 17:15So as with the the post Russian flu epidemic,
  • 17:21it spiked and then disappeared
  • 17:24and nobody talked about it.
  • 17:28So it's not just COVID.
  • 17:32This is from Akiko's fantastic
  • 17:36article in Nature magazine last year.
  • 17:39Fatigue has been the most widely
  • 17:42measured and followed symptom,
  • 17:44but of course not the only symptom.
  • 17:46And you can look.
  • 17:47I mean, what a, what,
  • 17:49a what a range of illnesses,
  • 17:52many of which are studied by this group.
  • 17:58So it ain't just COVID.
  • 18:02So I run the newly started the
  • 18:07New long COVID Clinic.
  • 18:10But I would be,
  • 18:11it would be wrong of me not
  • 18:13to talk about the real,
  • 18:15the source of that clinic.
  • 18:17These are the people who cared,
  • 18:21who provided long COVID care
  • 18:23for the first years of
  • 18:26this pandemic. And actually several
  • 18:28of the people in this slide,
  • 18:30specifically Jennifer Possek,
  • 18:33Erica Spatz, Lindsay McAlpine put
  • 18:39together the clinic that I now run.
  • 18:43And they were very thoughtful in how
  • 18:45they put it together and and recognized
  • 18:48that this required a multidisciplinary
  • 18:50approach and that it required an internist.
  • 18:53So I was thrilled when I heard about it.
  • 18:57So this is our crowd.
  • 19:00This is along COVID and you see that
  • 19:03there there are respiratory therapists,
  • 19:05there are nurses,
  • 19:07there are physical therapists,
  • 19:10there's a PA and ME and we see
  • 19:14patients five days a week, 3 days.
  • 19:18We see new patients two days.
  • 19:20We do follow-ups.
  • 19:24It's a multi specialty clinic.
  • 19:32So we get to open.
  • 19:34We got to open with the hard one
  • 19:36knowledge of those who people who
  • 19:37had seen patients here at Yale.
  • 19:42Patients are screened by nursing before they
  • 19:45come in so that we can get their records.
  • 19:47We know that for most of them this
  • 19:51is not their first visit by far.
  • 19:54At the time of their visit,
  • 19:55they're always seen by a physical therapist,
  • 19:58also by social worker and and by a physician.
  • 20:03And when appropriate,
  • 20:04they're also seen by a respiratory therapist.
  • 20:10We. Require referrals.
  • 20:13We require referrals because after we sort
  • 20:16of address these immediate concerns there,
  • 20:20it's not like they're going to go away.
  • 20:21It's not like we can give them two weeks
  • 20:24of doxycycline and they'll get better.
  • 20:26They're going to have these symptoms
  • 20:28for a while, so we need to have them
  • 20:30go back to their regular doctors.
  • 20:32And we're located at the medical
  • 20:36office building at Saint Ray's.
  • 20:39So we opened on,
  • 20:41we saw our first patient on March 20th
  • 20:44and since then we've gotten about 240.
  • 20:48This is up to July 1st at 245.
  • 20:51Referrals we've seen had seen
  • 20:54at that .206 patients,
  • 21:00most of the most common
  • 21:03referring diagnoses were
  • 21:04exactly what you would think.
  • 21:06Shortness of breath, fatigue,
  • 21:10brain fog, pots, cough, anxiety.
  • 21:15So that's what that's what
  • 21:16they're starting with.
  • 21:19Our job in this initial clinic
  • 21:23evaluation is to see if their lungs work,
  • 21:26if they have short shortness of breath,
  • 21:28see how debilitated they are.
  • 21:32They are the vast majority of
  • 21:35patients who we see have not
  • 21:37been active since they got sick.
  • 21:41You know, I mean,
  • 21:42many of them have spent a lot of far
  • 21:45too much time on the sofa because
  • 21:47they felt too terrible and because
  • 21:49they were afraid that if they
  • 21:51exercise they would get worse Because
  • 21:52there were stories about people
  • 21:54who had post exertional malaise,
  • 21:55who exercised and got worse,
  • 21:58or they did it themselves.
  • 21:59They exercised.
  • 22:00They decided to push through and go
  • 22:03for that run and then you know they
  • 22:06were in bed for days afterwards.
  • 22:08So there with the physical therapist,
  • 22:10we do 6 minute walk test for people who
  • 22:15have symptoms of autonomic dysfunction.
  • 22:17We do something called an active stand test.
  • 22:20That's the poor man's tilt table test,
  • 22:24which is supposed to be as good,
  • 22:25but I don't know.
  • 22:28That's what I read.
  • 22:30Social work tries to assess their
  • 22:32needs and their support and
  • 22:34provide counseling when needed.
  • 22:36And we have a psychiatrist we work
  • 22:39with when medications are indicated
  • 22:41and we have a support group,
  • 22:44A zoom support group that will
  • 22:46be starting in September.
  • 22:49So and then I see them or sometimes
  • 22:51my PA sees them,
  • 22:52although he usually sees people in
  • 22:53follow up and we get a thorough
  • 22:55history and we do a physical exam.
  • 22:57We get whatever work up we think is
  • 23:01needed and we either treat them or
  • 23:04refer them to subspecialists for treatment.
  • 23:07My goal when I see them is to to make
  • 23:11sure that they have long COVID and
  • 23:13they don't have anything else about,
  • 23:16I would say 1/6 or so.
  • 23:19You know a good,
  • 23:20a decent sized handful of the
  • 23:22people who come to see me actually
  • 23:24have something else.
  • 23:25And so we try to get them taken
  • 23:29care of for those things as I think
  • 23:31it's actually kind of a victory
  • 23:33when they have something else
  • 23:35because most things we can do more
  • 23:38for than we can for long COVID.
  • 23:42So what do we have that works in long COVID?
  • 23:48It's it's not a pretty picture,
  • 23:50but I'll show them to you.
  • 23:54So some things we can be
  • 23:57sure are pretty helpful.
  • 24:01Physical therapy is often helpful,
  • 24:04with some caveats.
  • 24:06Some patients crash when they
  • 24:09push themselves too hard,
  • 24:11something known as post exertional malaise.
  • 24:13These patients have to increase their
  • 24:15workload super slowly and recognize
  • 24:18their limits so that they don't crash.
  • 24:20I don't think that there's any
  • 24:22evidence that these crashes cause harm,
  • 24:24but they do steal time,
  • 24:28and that's a bad thing.
  • 24:32But they're kinds of exercises
  • 24:33that have been developed.
  • 24:34You see this woman who's
  • 24:37exercising loaded to the floor.
  • 24:39People who have or autonomic
  • 24:42dysfunction often need to do
  • 24:45exercise in a recumbent position.
  • 24:47So there are a couple of
  • 24:49protocols that we do for them.
  • 24:56So something that we see a lot is pots.
  • 25:02It's a kind of orthostatic intolerance.
  • 25:05Pot stands for Postural
  • 25:08Orthostatic Tachycardia syndrome,
  • 25:09where they'll tell you their heart races
  • 25:13and they get dizzy when they stand up.
  • 25:16And these are the people you see in stories
  • 25:19about long COVID who are in wheelchairs
  • 25:23because they really cannot stand up.
  • 25:26And it's been shown that certain kinds
  • 25:30of exercises can be helpful for them,
  • 25:33you know, recumbent exercise.
  • 25:34But also one of the things that helps
  • 25:37and there are, I'll get to this,
  • 25:38there are a couple of medicines,
  • 25:39but compression stockings,
  • 25:41serious compression stockings,
  • 25:44not the, you know,
  • 25:45not the ones that you that you normally
  • 25:47buy that have a pressure of about 15 to 20
  • 25:51millimeters of mercury per
  • 25:53square inch, but 30 to 40.
  • 25:56And the compression increases as you
  • 25:58move upwards and they have to go
  • 26:00all the way to the waist because so
  • 26:02much of that extra blood that we're
  • 26:03trying to get back to the heart is in
  • 26:06those in those lower blood vessels.
  • 26:09So that's been shown to work
  • 26:11in combination with sodium
  • 26:16for brain fog, which is a super common
  • 26:21complaint of those with long COVID.
  • 26:23Cognitive therapy is sometimes
  • 26:25useful for brain fog.
  • 26:27Studies evaluating cognitive
  • 26:29deficit after COVID generally show
  • 26:32impairments in the cognitive domains
  • 26:35of attention and executive function.
  • 26:37And let me just say for daily life,
  • 26:40those are the two skills
  • 26:42that you use the most.
  • 26:43And so these people are can be terribly
  • 26:46debilitated and cognitive therapy
  • 26:48has been shown to be helpful in some
  • 26:51types of cognitive deficits or brain
  • 26:53fog for example post traumatic you
  • 26:57know post concussive brain fog has
  • 27:00been shown to be helped by cognitive
  • 27:02therapy or chemotherapy chemo brain.
  • 27:07So for cognitive therapy, they're
  • 27:09usually two kinds of approach it or two.
  • 27:12Two aspects to this.
  • 27:13First, they give them the skills to
  • 27:16manage not having executive function
  • 27:18and not having very good attention.
  • 27:21So they give them some skills to
  • 27:23learn how to manage that life.
  • 27:25And then there are exercises
  • 27:26to try to get things working.
  • 27:28Again, the evidence isn't great,
  • 27:32none of the evidence is great,
  • 27:35but it's often helpful.
  • 27:39And then there are medications.
  • 27:44I haven't done a deep dive into their use,
  • 27:46but other long supplements,
  • 27:48for example, they are used.
  • 27:50I haven't done a deep dive into their use,
  • 27:52but other clinics like the one at
  • 27:54Mount Sinai in New York use them a lot.
  • 27:561 combination that's supposed to be
  • 27:58useful is L, arginine and vitamin C
  • 28:01I'm not really sure what those do.
  • 28:04I think it's for Vasospasm.
  • 28:06I'm not exactly sure how it works,
  • 28:09but there are some studies that look at that.
  • 28:12I use the combination of supplement and
  • 28:15medication that was evaluated by Armin
  • 28:18Feshirakis a day a couple of years ago,
  • 28:21an acetylcysteine and guanfacine,
  • 28:24an acetylcysteine.
  • 28:26I mean, I know about it because people
  • 28:28use it after an overdose with Tylenol,
  • 28:30but it's been used for a lot of things.
  • 28:32And guanfacine was a medicine
  • 28:34that was used for a DD and those
  • 28:37have been shown to help many.
  • 28:39And of course lots of people come in
  • 28:41after hearing about low dose naltrexone.
  • 28:44It's been used to treat chronic
  • 28:46pain for many years.
  • 28:47And one study done specifically in
  • 28:50people with long COVID shows that
  • 28:53it improved fatigue and brain fog.
  • 28:56So one of the things that's been
  • 28:59most well studied is loss of sense
  • 29:01of smell and sense of taste.
  • 29:04I think it's been studied so much
  • 29:07because it's easy to measure and cheap.
  • 29:10There are these things called sniffing
  • 29:12sticks and you can, they've been,
  • 29:15they're, they're measurable.
  • 29:17So one of the easiest things are using
  • 29:21a combination of four aromatic oils
  • 29:25to help you improve your smelling.
  • 29:28You're supposed to smell them every day,
  • 29:32seven days a week for six months.
  • 29:35And at the end of that time period,
  • 29:37most people like over 60% of
  • 29:40people will have their smell back.
  • 29:43Was that just over time?
  • 29:44I don't know, but that's what we know.
  • 29:50There's also,
  • 29:53I just read a fascinating piece,
  • 29:55a systematic review looking at
  • 29:58what works in in long COVID.
  • 30:02And so they looked at, they did a
  • 30:05deep dive into what's been tried for,
  • 30:07the sense of smell and taste.
  • 30:10So as an internist,
  • 30:12everybody goes to steroids.
  • 30:14And so nasal steroids have been extensively
  • 30:18evaluated and found to not work at all.
  • 30:22So there are a couple of other
  • 30:24nasal solutions that have been
  • 30:25shown to have some effectiveness.
  • 30:27They're not on the market that you can't.
  • 30:29You can get them made at
  • 30:30a compounding pharmacy.
  • 30:32One is a sodium gluconate solution.
  • 30:36Another is something called Tetra
  • 30:40sodium pyrophosphate nasal spray.
  • 30:42I just learned about these and
  • 30:44so I haven't examined them at
  • 30:46all or tried to get them made,
  • 30:48but they did seem to be effective.
  • 30:51But they have to be made.
  • 30:56So one of my patients came in
  • 31:00and demanded this for her lack
  • 31:03of sense of smell and taste.
  • 31:06This is a stellate ganglion blockade
  • 31:11they injected with lidocaine,
  • 31:13which of course only lasts
  • 31:14a few hours and wears off.
  • 31:16But she said that the Facebook
  • 31:19group on people who have lost their
  • 31:23sense of taste and smell through
  • 31:25COVID was all a flame over this.
  • 31:29She'd already tried the aromatics.
  • 31:32I didn't know about these other nasal sprays,
  • 31:34but I didn't know that nasal
  • 31:36steroids didn't work,
  • 31:37and she'd also tried them several times.
  • 31:38So I'm like, okay,
  • 31:40Let's see if there's anybody at
  • 31:41Yale who does this kind of thing,
  • 31:43because it's used for a lot of things,
  • 31:45mostly pain control.
  • 31:46So I found a guy who does it,
  • 31:49who was willing to do it.
  • 31:50And so you see, there's ultrasound,
  • 31:52there's an injection of lidocaine
  • 31:55into the Stella Ganglion.
  • 31:57And I thought, well, here's hoping.
  • 32:00So took her three months to get in
  • 32:02to see the surgeon because that's
  • 32:04how medicine rolls these days.
  • 32:08And she called me.
  • 32:10She said she went, she got the injection.
  • 32:12Her husband took her to a diner for lunch.
  • 32:15She said for the first time in
  • 32:16three years she smelled coffee
  • 32:18since she burst into tears.
  • 32:21That's an end of 1, so I don't know.
  • 32:23There are a couple of studies being
  • 32:25done now, so we'll see if this works.
  • 32:28I called the surgeon Robert Chow
  • 32:31and I said why would that work?
  • 32:36And he said got me.
  • 32:39So I don't think we have a Gray.
  • 32:41He said maybe the lidocaine
  • 32:43shuts down the nerve and then
  • 32:45it when it's like turning off
  • 32:47your computer and it reboots.
  • 32:49I don't know,
  • 32:52maybe.
  • 32:54But the long and short of it is
  • 32:58that treatment for these symptoms is
  • 33:02still a work in progress, like St.
  • 33:04Raphael's and New Haven itself.
  • 33:06A work in progress.
  • 33:08And I hope to be able to do
  • 33:11something for these people.
  • 33:13And I'll tell you what,
  • 33:14what we do most consistently
  • 33:16is make them here feel heard,
  • 33:19which turns out to be really important,
  • 33:22and tell them that they're not crazy,
  • 33:24which turns out to be really important
  • 33:27as well. So that's all I got.
  • 33:29Thank you.
  • 33:45See, y'all don't take care of patients,
  • 33:46right? The view up there, talk to people
  • 33:55with ideas, without evidence and
  • 33:57how do you make the decision about,
  • 34:05Well, of course that is the hard part.
  • 34:07I try to you know, if they come in
  • 34:10asking for something that doesn't seem
  • 34:12harmful and maybe has gotten a couple
  • 34:15of small studies, I'm open to it.
  • 34:18Supplements seem okay.
  • 34:22This, still a ganglion block,
  • 34:26pushed me to my limit.
  • 34:27She had to push hard,
  • 34:30but it's what she came in for and
  • 34:35so I thought, okay, let's try it.
  • 34:39I don't know. I assume her insurance
  • 34:41paid for it because when people's
  • 34:44insurance don't pay for things,
  • 34:46I do tend to hear about it
  • 34:47and I didn't hear about it.
  • 34:48So that was my question is how
  • 34:51are these treatments paid for
  • 34:54if there's not evidence of?
  • 34:56I don't know how the insurance companies
  • 34:58are dealing with that, Not well.
  • 35:00But I'll tell you before you
  • 35:01can get in to see anybody,
  • 35:03they have somebody whose job
  • 35:05it is to call the insurance
  • 35:06company and say is that paid for?
  • 35:08So nobody gets in the door without that.
  • 35:12Yes, Sir. I loved your talk earlier today.
  • 35:16So this is, it's a common kind of striking.
  • 35:20So whenever you describe, you know,
  • 35:22the literature that serves
  • 35:24that you've done for, you know,
  • 35:27this viral epidemic based 92,
  • 35:30I've actually talked to other people
  • 35:32about this both in science and,
  • 35:34you know, kind of media and stuff.
  • 35:36And some people actually hypothesize
  • 35:38that without evidence you don't
  • 35:40really have didn't have the ability
  • 35:42to do accurate back prostate and
  • 35:43what could have test back then
  • 35:45but that could have actually been
  • 35:47the introduction of a ancestor of
  • 35:50OC 43 which is a common coronavirus
  • 35:53from a build line coronavirus. So
  • 35:56and and the reason why they got me
  • 35:58in to myself is because you mentioned
  • 35:59many of the you know posts that you
  • 36:02infection symptoms of that 1892 viral
  • 36:06out rate that if it in fact was a you
  • 36:10know essentially a no supporting pre
  • 36:12ancestor then that would have been
  • 36:15you know I I guess accurate in in that
  • 36:17regard but there's really no way to
  • 36:19know whether that was an influenza
  • 36:21virus or a coronavirus you know that
  • 36:23the socalled Russian Russian flu.
  • 36:25But anyways, I heard that and I
  • 36:27was like that's super interesting.
  • 36:29You know that if it was a coronavirus
  • 36:31like that, the the overlap and you know,
  • 36:35prosecute symptoms are strikingly
  • 36:36similar to COVID,
  • 36:38right. And but actually even with the flu,
  • 36:41you know, it depends on which
  • 36:42flu strain it is. But you know,
  • 36:44just in the reading that I've done,
  • 36:46it looks like up to 25% of people
  • 36:49after they get just the flu have
  • 36:52symptoms that can last up to a year.
  • 36:54So I mean the difference and like the
  • 36:57people who were in the INSPIRE study,
  • 37:00who who went to get a COVID test,
  • 37:02I mean probably a good portion
  • 37:04of them had the flu.
  • 37:06And so you know,
  • 37:08I think that's why they had such
  • 37:10a dramatic and lengthy recovery.
  • 37:14Yes, Sir. Hi,
  • 37:16Justin Belski, Emergency Medicine.
  • 37:17So we we see quite a few of these
  • 37:19patients who are kind of desperate to
  • 37:21come to the emergency room and really
  • 37:23it's nothing we can really offer them.
  • 37:25two-part question,
  • 37:26one is you said there's sometimes
  • 37:28an alternative diagnosis.
  • 37:29What is your #1 alternative
  • 37:31diagnosis you find?
  • 37:32And #2, are there any objective
  • 37:35tests such as abnormal PFT's and
  • 37:38young healthy patients or anything
  • 37:41objective that you can say okay,
  • 37:43this is long COVID versus just
  • 37:44kind of going off their symptoms.
  • 37:46There's
  • 37:48nothing. I mean that's not true.
  • 37:50There are some super specialized testing that
  • 37:54shows that are abnormal in some patients.
  • 37:57Like I was talking to a group of doctors
  • 38:02earlier today and was hearing about CPET
  • 38:06that often that can show something.
  • 38:08I mean, some people have studies that
  • 38:10show they have endothelial dysfunction,
  • 38:13but most people in most testing that is
  • 38:17done routinely outside of research centers,
  • 38:21they're completely normal,
  • 38:22but they don't feel normal.
  • 38:24But you know, tests are like questions,
  • 38:27you know, and we've all played 20 questions
  • 38:30where the 1st 20 answers we get are all no.
  • 38:33And that's what's happening.
  • 38:35I think in these postinfectious syndromes,
  • 38:37we're asking the wrong questions.
  • 38:39We don't know the right questions to ask.
  • 38:41We don't have, maybe we don't even
  • 38:44have the test yet to get there.
  • 38:46But that's why they're their
  • 38:48tests are negative.
  • 38:49But that's of course why they they're
  • 38:52looked at with such skepticism.
  • 38:53Hey, I've done every test that
  • 38:55I do want patients who are sick
  • 38:57and I I can't find anything.
  • 38:58But you know,
  • 38:59I've written my column for 20 years,
  • 39:0121 years now.
  • 39:02And virtually everybody I've
  • 39:04written about got that comment
  • 39:07from a doctor at one point,
  • 39:09you know that we've done everything we can
  • 39:11to figure out what's going on with you.
  • 39:12It's because they hadn't thought
  • 39:14or didn't know the right test,
  • 39:17the right question to ask.
  • 39:18And that's where these patients are
  • 39:23six. Well, I mean, they've been different.
  • 39:25You know, I had one person who who's
  • 39:29described monthly episodes of fever
  • 39:32and pain and terribly heavy periods,
  • 39:35and so I thought she probably
  • 39:37had some sort of endometriosis.
  • 39:39And I had a patient who I wrote about in
  • 39:41my column, because I totally missed it,
  • 39:43who had hyperthyroidism.
  • 39:44I wanted to shoot myself.
  • 39:46It was such an obvious diagnosis.
  • 39:48But, you know,
  • 39:48so they have a variety of different things.
  • 39:50Some have neurologic problems
  • 39:51that I don't know what they have,
  • 39:54but it's definitely not long COVID and
  • 39:57you definitely need to see somebody else.
  • 39:59So you know I've I've referred
  • 40:01people on to specialists,
  • 40:03subspecialists who are still seeing
  • 40:04them and we'll see what they have.
  • 40:06Maybe they'll get sent back to me.
  • 40:08We can't find anything.
  • 40:09Probably is long COVID that's also
  • 40:11that's also a possibility but at least
  • 40:14they seemed atypical at the time.
  • 40:16Thanks.