#36 My daughter’s Long Covid changed how I practice medicine with Dr Binita Kane

Episode Transcript
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Binita Kane (00:05):
What I've had to do is unlearn vast swathes of
medicine, and how I've beentaught to think as a doctor, and
rethink medicine, going back toabsolute basics. This isn't just
a case of go and see a doctor,get some pills, and get better,
but there is lots of hope, and Iam seeing people getting better.

(00:25):
I think it's really important,even if they've been ill for 2,
3, 4, years, I'm definitelyseeing people improving.

Emily Kate Stephens (00:33):
Welcome to Make Visible the podcast shining
a light on complex chronicillness. I am your host, Emily
Kate Stephens. Hello, welcome tothis week. Hi, Gez. How are you

(00:58):
doing?

Gez Medinger (00:58):
I'm surviving, Emily. How are you today?

I'm good. I'm really good. I'm just going
to start at the top of this showonce again, asking people to
share their comments andfeedback with us, because I have
started doing some in a seriesof listener interviews, so
conversations with some of ourlisteners, and my goodness,

(01:21):
there is some incredibleconversation coming out of
talking to other people, otherthan you, Gez. I love talking to
you, Gez, but actually, this is- I'm really excited to be
sharing some of this goingforwards with everyone. So, I
just encourage you to tap thefeedback form or send us an
email - everything is in theshow notes, but your engagement

(01:43):
in the show is so exciting, andit really is helping us. We are
reading all of it, and we aretrying to respond, and we are
trying to shape based on whatpeople are saying to us. So, the
other thing to share with you,Gez, you just asked me how I am.
I've just been to the hospitalto have blood tests for my
daughter, and I have to say thatthe process of being a mother of

(02:07):
someone with a post-viralsituation is a whole new world
of navigation, and if I thoughtthat I'd got to grips with
sorting things out for myself,now that I'm dealing with
pediatrics, and the fact thatyou can't just walk into a
phlebotomy clinic and get ablood test. It takes five or six
weeks. I'm going through thesame roller coaster of trying to
get help as I experienced backsix years ago, and I share that

(02:32):
to lead us into this week'sinterview, which is with Dr.
Binita Kane. And you've spokento her previously, haven't you
Gez, and -

I know her very well. She's, she's superb. She
really is.

So, there were a group of you, weren't
there, that got to know eachother and have worked together
as advocates of Long Covid, andtrying to further our
understanding. And she's aremarkable lady, she's a
respiratory physician, and wason the front lines at the
beginning of the pandemic, butas she'll describe through that,

(03:05):
and through her personalexperience, she took on a role
in trying to understand and helppeople.
Let's start, not right at thebeginning of your entire story,
but let's start at the beginningof your story as we go into the

pandemic (03:29):
you were operating then on the front lines and
dealing with acute Covid cases,and at that time became part of
the public response to Covid,you joined Independent Sage, and
so you were actually advocatingor speaking when we were dealing

(03:49):
with acute Covid, and from thenyou developed a personal
relationship with the aftereffects of Covid, when your
daughter developed Long Covid in2021. Can you tell me about that
initial journey and what it waslike at the point at which you

(04:11):
found your daughter had apost-viral or viral consequence?

I will say a little bit about that early pandemic
experience. I was a respiratoryclinician on the front line of
the pandemic. Looking back, itwas just the most extraordinary
time for lots and lots ofdifferent reasons, but I got
quite interested very early onin the back door of the
hospital, so whilst we wereplanning for this huge torrent
of patients coming in andintensive care beds and creating

(04:39):
capacity to look after theacutely ill, because my interest
was in integrated care, and whathappens when patients leave
hospital. I started thinkingabout that very early on. How do
we get people out and create thecapacity? And so I set up the
Manchester Virtual Ward forpeople with Covid, and over the
course of that two years, wesupported about 4000 people at

(05:00):
home across the three bigteaching hospitals in
Manchester, and we were usingremote monitoring to keep them
safe once they were dischargedfrom hospital, and we had
escalation pathways back in ifthey got sick. And so very early
on, long before my daughter gotsick, I started realizing that
people were not getting better.Our pathway, when patients went

(05:20):
home, was only supposed to bemaximum two weeks that we would
log after them, and we had thesepatients who were sometimes 3,
4, 6, 8, weeks later, stillreally poorly - really, really,
really struggling with symptoms,with the brain fog, with the
fatigue, and that was the sametime as around the patient
population started realizingthat something's not right,

(05:41):
people are not recovering in theway that we expect them to. So I
had an interest in post-COVIDcondition, but very much not an
understanding, I would say, whatit's physically like to have a
condition like ME or long COVID.Then, in the January of 2021 my
daughter, who was then 10, hadwhat seemed like an innocuous
viral infection, and we weren't,I think the PCR testing was a

(06:03):
bit patchy. It was available, Ithink we did get her PCR tested.
I can't remember now. It'sterrible, isn't it? Anyway,

it was quite a time.

Yeah, she had the very typical symptoms
taste, altered smell, the mildtemperature, sore throat, and
she just didn't recover. She hadbeen perfectly healthy prior to
this, very fit and well, 100%school attendance, and she just
didn't recover. Became verypale, very lethargic, and we
thought initially, okay, it'sjust going to take a few months,

(06:33):
and we carried on, but at thethree month point, you're like,
okay, something really isn'tright, and that's when I was
very lucky, because I worked ina hospital. I was able to engage
my pediatric colleagues veryquickly. They said, "Yeah, bring
her in, we'll do all the tests.So they did all the tests, all
the blood tests, ECG, and at theend of that process, they said,

(06:55):
"Oh, there's nothing much we cando, we'll send her to the ME
blotchy, and it was almost like you could see the
clinic". I'm like "ME?". Andmy... and I'm, I'm ashamed to
say that my very first reactionto that diagnosis was, oh my
perfusion coming back. It waslike, wow, she didn't have
god, I don't want her to havethat, because that was a label,
apherisis, she was too young,and that was too invasive.
a stigma that you are taught inmedicine - it's something that's

Yeah, that's what I wondered.
fivecouldn't really quite believe
all in the mind and it'spsychological, and genuinely
that's all I knew about it,which is pretty shocking now,
looking back, but alsoeye-opening in hindsight that I
knew such little about it. So wewent to the clinic, and I would
say that everyone was lovely,really nice, but there was
really very little on offer atthat point. I'd figured out how

(07:35):
to pace, because I'd seen someamazing patient resources, but
it wasn't patient resources thatI used. These are things written
by patients. These were notanything that was available in
terms of, oh, here's a clinicalguideline, or here's, yeah. And
then I followed the advice, andactually the advice wasn't all
that correct in hindsight, and -

But I think once I'd seen the platelets and the
it. But I have to say that itwasn't just the drugs, it really
wasn't just the drugs, and thisis a, this is a very, very
micro clots and seen thescientific evidence, and it all
important top point. The drugswill only work if we do all of
the other stuff well, and thatwas complete rest, taking her
out of school entirely, pacingin a scientifically sort of

(08:21):
kind of made sense.being
sensible way. She did some vagusnerve stimulation, we were doing

(10:21):
kind of programmed rest, if youlike, three three or four times
a day, where she'd have to goand lie in a completely dark
room, no screens, and

yeah, no stimulation,

calm the system down, and that was a real
battle, because her behaviorchanged during the time as well,
and sorting out nutrition,sorting out sleep, it wasn't
just, oh, here takes my drugs,as you're going to get better. I
really want to emphasize that,because there is no magic pill
for this condition. It takes amulti factorial, multi pronged
approach. I did a lot of workduring that time around

(10:54):
regulating my own emotions, andI'm very happy to talk about
that, because your kids willfeed off your anxiety and your
own issues, so I did a lot ofthat work, and I, I never once
let her think she wasn't goingto get better. Our mantra at the
time was "life will be goodagain". "Life will be good
again", and we always kept thatat the front of our mind, and I

(11:17):
very much did a lot of work onmyself as well, so I think
that's important to highlight,because this isn't just a case
of go and see a doctor, get somepills, and get better,

And actually amazing advice for
anyone who is caring for someonewith one of these conditions,
not just a child - a partner,whoever you're caring for, that
idea of trying to help with thismulti layer, it's the layers,
isn't it? And it's bringing allthe layers together. And
actually, for you, that was afull-time job at that point, I

(11:50):
believe?

I was still working full time.

Wow,

It's actually my husband who ended up giving up
work, folding his business atthe time, which was a new
business. It was a verydifficult time for the family,
because we then went down tobecoming a one-income family,
which, for me, on a consultantsalary, that was absolutely
fine. I'm not saying, you know,that it was not a problem for
us. But this is what ishappening to many, many

(12:15):
families, where they've got achild who's sick with Long
Covid, they, the parents can'twork, the child's not in school,
and so they become single-incomefamily, and they're having to
pay for private care a lot ofthe time because the NHS
services are just not thereconsistently across the country,
so you end up in this kind ofdouble, triple, quadruple whammy

(12:35):
of problems, and it's very easyto become extremely anxious and
for it to affect your mentalhealth, and that's why doing
that work on yourself is reallyimportant, because this is hard
stuff, it's really difficult.

Yeah, and it's not about trying to
suppress it, trying to justpretend that everything's okay.
It's actually, as you've got togo deeper than that, I think.

Yes, I mean, anyone can sort of practice toxic
positivity and go, hey, I amfine, and do sort of
affirmations that you don'tbelieve, but that doesn't really
work. It is about doing thatwork -

doing the work

- properly. Maybe that's for another whole
session, but

Well, there are so many directions that we
can take this in. But if we lookat that treatment plan that your
daughter has, and you haveworked closely subsequently with
Team Micro Clots, as they'vesort of been labeled, people
like David Patrino. There arealmost different camps around

(13:33):
the world with differentstrategies. Still, do you think
that everyone with Long Covidwould benefit from that kind of
treatment that is dealing withplatelets and micro clots?

Absolutely not. So I think I think it's important
to think about Long Covid as anumbrella term, and I want to use
the analogy of if somebody hadjust labeled autoimmune diseases
autoimmune disease, and wedidn't have the sub
classifications of rheumatoidarthritis and SLE and Sjögren's
syndrome and all the otherdifferent autoimmune conditions.

(14:07):
And it would be like saying,well, everybody with autoimmune
disease needs this drug. Becauseof the research vacuum, we've
kind of got this umbrella termwhich lumps together multiple
different underlyingpathologies, and we haven't yet
characterized the disease in away that we can sensibly say
"this is how you treat this bit"and "this is how you treat this

(14:29):
bit". We've got really goodclues, and I think, as a
clinician and someone who treatsthis condition full time now, I
see pattern after pattern afterpattern, and I can put people
into buckets, which soundsdreadful. I don't mean that. I
don't mean that literally. Idon't put anyone in a bucket,
but I can characterize peopleinto these sort of buckets of,

(14:51):
okay...This definitely lookslike quite vascular
presentation. This looks like anautoimmune presentation, this
really looks like mast cellactivation. This person's very
dysautonomic. This is much moreneurological, small fiber
neuropathy, and then there'slots and lots of overlap between
all of those buckets as well, soyou end up with this sort of

(15:12):
almost big Venn diagram, andwhat I think I've had to do is
unlearn vast swathes of medicineand how I've been taught to
think as a doctor, and thenrethink medicine, going back to
absolute basics, like let's lookat the person in front of it,
take a really detailed, very,very detailed history, right the
way from birth, let's look atthe predisposing factors, let's

(15:35):
look at clinical examination, ifI'm lucky enough to be able to
see someone face to face,because they can travel and then
let's really go back to firstprinciples and go let's treat
the treatable and in parallel tothat - what does this person's
life look like? How well arethey pacing? What are they
eating? How are they sleeping?How are they breathing? What

(15:57):
does their gut look like? All ofthese things are important, and
something that I've beenfocusing more on recent years is
what does health look like,because believe it or not, as a
doctor, you don't get taughtwhat health looks like, you get
taught how to treat disease andillness, but you don't get
taught how to promote thelandscape for health.

Yeah, because it's not about
preventing these things, it'sabout treating them once they're
already in motion.

Yeah, so actually, if we're going to now create a
landscape within the body thatis going to help this person
really truly heal and recover,what does that look like? And
it's almost like a 50 piecejigsaw puzzle, and you have to
work on each piece one step at atime, and that I'm working on
average with people for 18months, two years, which is why

(16:45):
I've got such an awfully longwait for my clinic, because
people are in the clinic. I dolike to work with them properly
and give them that continuityand that oversight, and people
will often be under lots ofdifferent doctors and different
clinics, but what I try and dois provide that oversight to say
I will be that holistic personwho will look at all of it.

Which is so frustrating in our healthcare
system, because actually ourgeneral practitioner or primary
health care provider should bethere to give a holistic
overview of your health, andthen be able to field out
individuals to the relevantspecialties, and with the Long

(17:29):
Covid clinics predominantlybeing disbanded, and people
being handed back to theirprimary care provider, a lot of
people don't have that. A lot ofpeople do not have one person
who is looking at their entirebody, their entire health, and
helping them to move forwards,and I think that's a massive

(17:50):
failing that we have in thesystem that in which we live.

And this is true for conditions outside of long
COVID as well. I would say, youknow, my NHS colleagues are the
best in the world at acuteillness.

Yeah,

Mangle yourself on the motorway. You have acute
pneumonia, you have a puncturedlung, you have appendicitis. We
are incredible. We will sort youout very quickly at no cost.
Additional cost to you.

And that is incredible. That's absolutely
incredible that we have theuniversal health care.

I mean, you know, blows my mind, the stuff that
people in the NHS are doing,heart transplants, this, that,
when it comes to somethingchronic, complex, poorly
understood, we do not do thatwell at all, in fact,
appallingly, and whether that is- even in conditions where there
is a specialty that houses thatcondition, like rheumatology,

(18:44):
for example. We'll see lots ofpeople with complex chronic
illness. It's still fragmented,and it's still difficult to get
somebody to look at the wholepicture. So, this is something
that's missing from medicine ingeneral, and I think it's just
been exacerbated massively byLong Covid. I think the other
problem with Long Covid is a lotof the systems that are

(19:07):
affected, like the vascularsystem, like the autonomic
nervous system, like the immunesystem, do not fall into any one
specialty. So, POTS isn't aheart problem, so cardiologists
don't deal with POTS, by andlarge. It's not a neurological
problem, necessarily. It can be,but not necessarily. And

(19:28):
vascular disease is treated byvascular surgeons who aren't
physicians.

Yeah,

So and then mast cell activation falls between
immunology, allergy, anddermatology, but nobody really
does it properly. And EhlersDanlos we don't even have any
specialist services, so we'vegot all these poorly understood
conditions that don't have ahome, and therefore you pitch up
to a specialist clinic, you getreally angry and upset that they
don't know your condition, butthey're not taught.

Yeah, and that's something that I've heard
you say before, that when thissituation was presented to you,
so clearly right in front ofyou, you said you had a hole in
your medical training fordealing with complex chronic
illness, for dealing with thiskind of thing, and that's you

(20:17):
are highly educated physician,and throughout all of your
training, you were not taughthow to deal with this. However,
I want our listeners to takehope from something that you
just said, and the way that youexplained these multiple things
that you can put on top of eachother is that there are ways
that you can help people, so allthe people who have been turned

(20:41):
away by their primary careprovider or by the specialist
who says there's nothing I cando, there's nothing on these
tests, there's nothing wrongwith you, there's nothing that
we can do for you, that isactually inaccurate. If you are
having symptoms, there arethings that can be done to help
alleviate them, and I think thatis something that a lot of

(21:04):
people are losing hope with, interms of the care that they are
being provided.

Yeah, I've got a few things to say about that.
Firstly, sometimes people arebeing told the tests are normal
when they are not, particularlybecause dysautonomia, this idea
that your nervous systemoverreacts to normal exercise,
and you become very tachycardicwhen you do anything that's a
huge contributor to fatigue, andit's a huge contributor that

(21:32):
pushes you over the threshold atyour energy threshold, and can
contribute to PEM, and it's notwell understood. So, I'll
explain this with the example ofa 24 hour ECG. Now, the vast
majority of 24 hour ECGs arerequested by cardiologists to
look for heart rhythm problems,so if you're having funny
rhythms and got symptoms becauseof that, that's why we do them.

(21:55):
So, if there's no rhythm rhythmdisturbance and they just see
episodes of fast heart rate,they will say that's normal,
because the person who'sreporting it knows nothing about
the patient who was wearing itand what they were doing at the
time

What they were doing. Yeah.

And so when I do a 24 hour or 48 hour ECG, I always
ask the patient to keep anactivity diary, and I go, "Oh
gosh, what happened there? Theheart rate's under 50, and I
look at the activity diary, andI go, "They got off to brush
their teeth, that's grosslyabnormal, but that same test
will have been interpreted asnormal. Had another patient who

(22:30):
had a 24 hour blood pressure,and it averaged at 130 over 80,
it's normal. I looked at the rawdata, the highest blood pressure
was 160 over something, and thelowest blood pressure was 60
over something. Wow, there wasthis really prolonged episode of
hypotension, where the bloodpressure was absolutely in their
boots for about an hour, an hourand a half, but because it got

(22:53):
averaged out, it got reported asnormal. Yeah, so this is where

Yeah.
the symptomatologies that that
it comes back down to thatcareful history, taking looking
contribute to Long Covid. Wedidn't actually get to the point
at the person in front of youand applying the test to that
person and what they were doing,and that's a fundamental thing
after you working with yourdaughter and taking her to
that a lot of services aregetting wrong, and I think
Germany and seeing her begin tomake improvements to one, what
there's also people will do aPOTS test on a single point in
happened to your daughtersubsequently, and to your
time and say someone doesn'thave POTS.

(23:16):
impetus then to set up the LongCovid clinic? So, could we go

(24:49):
back to how your daughterprogressed?

Yes, Jasmine started treatment in February of
2022 and then there was, as say,four trips to Germany over the
spring and summer. There seemedto be a real turning point in
the summer, towards the end ofthe summer holidays, that it was
almost like a switch, and wewere like, oh, we're seeing some

(25:14):
really sustained improvement,but you don't dare to hope, and
we'd been to the school, ofcourse, before the summer
holidays, and she wastransitioning into high school.
We've been to the school, andthey were really wonderful about
adaptations, and we said she'sprobably not going to be in very
much, and we need to see how itgoes. And it's transition to
high school's massive anyway,and bigger kind of lots more

(25:34):
walking, lots more activity,lots more stress. So we're gonna
have to really manage this, andshe made us look like complete
fraud, like complete liars. Sheturned up on day one, and she
just went back to school fulltime. Yes, she wasn't doing PE.
Yes, she wasn't walking toschool and back home from school
in that first year, but we justvery slowly, and she almost led

(25:57):
her own rehab, I would say,according to what she felt she
was able to do by the end ofyear seven. She was able to walk
to school, but then maybe not dothe walk back by the end of year
eight. She was walking toschool, walking back, doing PE
summer term. She's in year 10now. She did a Duke of Edinburgh
bronze expedition in between twofull weeks of school with no

(26:18):
server, and she skied very hardfor six days in a row with no
problems whatsoever.

No consequences?

No consequences. Back to school on Monday, so
she's, she's, she's healed,she's recovered. That's
incredible. Grateful for that,very grateful, because in 2022
when she was in a wheelchair andshe couldn't walk 100 meters up
the road, I could not haveimagined a few years later,
that's the level she would beat, but I am seeing recovery in

(26:45):
the patient group, they're giventhe right help and support.

I just highlight one point that you
made there, when you describedyour daughter, you said she said
her own recovery, and I thinkthat that is something that's
very interesting in this space,even with a child, is that
belief that someone knows theirown body. I think, especially

(27:10):
when we spend so much timeconsumed by our illness and
consumed by our situation,trusting that that person, even
if they are a child, has thatunderstanding of their body that
they know how to push it or notpush it, and how to lead rather

(27:31):
than being completely guidedfrom from external, and
obviously you, as a mother, itis a much closer guide than a
doctor, but a doctor who isseeing someone, maybe at regular
intervals, maybe not tellingpeople what they need to do, it
all has to be patient led.

It does, and I think I think it's very hard
because there was definitelytimes where I was anxious about
what, how much she was doing,almost in not pushing her too
much, like I think a lot ofpatients face the opposite, they
face being pushed and peoplebeing told you should be, you
should get up, you should domore in a waste away,
deconditioning. I was almost theopposite, I was almost like she
really wants, she wants to dothat, and I was almost fearful,

(28:13):
but she wanted to do it, and itwas kind of okay, I'm going to
trust that instinct, and let'sjust see what happens, and she
won't get it right all of thetime, and she was fine. I had to
deal with my own fear and my ownanxiety about it, and just trust
that she was listening to herbody, and she knew what to do.
But I think that that balance isvery hard to strike, because I

(28:36):
have so many patients who getwell enough to a point, and then
they'll, they'll go on holiday,or they'll do something, or
they'll have a big spring clean,because they're feeling better,
and then they'll crashthemselves massively. You're
nodding knowingly. Then therebecomes a bit of a, or do I try
and do that again? But I thinkthis is where having the

(28:56):
scientific knowledge aboutpacing, having the tools to help
you light visible, and havingsome expert guidance, if you're
lucky enough to be able toaccess that, is so critically
important. Because one of thebig problems in these conditions
is your head and your body areoften disconnected. People's
brains are telling them thingsthat aren't true, and their
bodies are not ready for it.

Yeah.

And actually to truly tune into your body and
really listen to your body takesits skill.

It takes about six years. I'd say.

Are you getting there, Emily? Yeah, it's not
easy. None of this stuff iseasy, and not everyone will get
it right all the time. You know,I feel incredibly grateful and
fortunate that that is howthings worked out for my
daughter, but there is nojudgment whatsoever when people
do get it wrong, because it's sohard.

But it's not just fortune, it's not just
luck that that happened, becauseof the sheer volume of research.
Obviously, you are in aprivileged position, because you
had access to so many expertsand amazing people, but at the
same time, one of the thingsthat I've read that was your

(30:06):
basis for how to startstructuring a care program for
your daughter was actuallytalking to other patients. And,
like you said, from thebeginning of the people coming
into the hospital, the back doorof the hospital, you were
learning from the other peoplesuffering from it rather than
necessarily other..

100%. I just put my hands up, and when I don't know
the first thing about thispacing, I've never heard of it
before. And I've been arespiratory consultant for
nearly 10 years at this point,and I've never heard of the
concept of pacing, and thattells you all you need to know.
I would hope that that haschanged now, but there's another
really interesting thing, whichI think, for the visible

(30:44):
audience, is very relevant, thatthere are huge, huge, huge
insights and benefits we cangain through understanding
exercise physiology, which sitswith exercise physiologists,
sort of famous ones in ourworld, Todd Davenport and Mark
Fahey, and then Robin McNelis,who I work with. Well, he's a

(31:04):
physiotherapist.

Lovely Robin.

Yeah, he's physiotherapy, but with an
interest in exercise physiology,but the doctors don't get taught
that stuff. To everything I'velearned about exercise
physiology, anaerobicthresholds, lactate thresholds,
these guys who train athletesare doing it every day, all day,
and it's the same principles,but we're taking about what
athletes do. They're trying tonudge up performance ever so

(31:28):
slightly without over training,and when you look at
overtraining syndrome inathletes, guess what the

symptoms are (31:33):
fatigue, brain fog, muscle soreness.

It's the same as post-exertional malaise.

Yeah, PEM so we've got all this knowledge that's
sort of sat in that silo overthere that we're not applying
into our ME/CFS clinics, whichare still quite historically
based on much older ideas.

Yes, there's a bit of a problem,
isn't there? This, when Iinterviewed Todd Davenport, he
said it's saying that I'm anexercise scientist, it's almost
sounds like a dirty word in thisspace, because what you're doing
is you're bringing that world ofthe elite athlete and elite
performance and trying to applyit to almost a person of
physically the opposite to anelite athlete, so you can see

(32:18):
why some people might have notnecessarily tried to bring the
two together, but it's amazingwhat we can learn in that space
across various things. Forexample, the way that elite
athletes breathwork train aswell.

That's another whole area, which I'm a
respiratory consultant, andeverything I've learned about
breathing has been in the lastfive years. I'll be completely
honest with you,

It's amazing. Because I've trained as
a breathwork practitioner, I'vedone two different trainings
now, and obviously I have noknowledge like you do about the
actual lungs, but in terms ofthe physiology, we as humans
should have so much more of afundamental understanding of how
we breathe and the impact thatbreathing has on our entire

(33:05):
system.

Yes, and thinking about this whole silo idea as
well, it's really interestingbecause I've learned an awful
lot about this whole 24 hourbreathing stuff through not just
through Robin and my team butalso Dr. Louise Oliver, who's
another lady who I work closelywith, who she's a GP, but she
retrained as a bathwitpractitioner in the last five or
six years, and she's got very,very, very interested in here to

(33:29):
here, and one of herobservations is time breathing
is kind of done by physios,sleep breathing is done by
respiratory physicians, but notall of them, just the ones with
a sleep interest.

And when people know or consider that
they might have an issue.

Exactly, and then you've got breathing that's
integrated into all sorts ofsomatic and psychotherapy
approaches as well, but no one'sreally putting it all together
and doing 24 hour breathingpatterns.

Breathing for life!

yeah, because people's breathing patterns
change from when they're sittingto when they're exerting to when
they're sleeping to when they'restressed, and there isn't
necessarily the focus on nasalbreathing that there needs to
be, and we've got all thesepeople with floppy airways with
Ehlers Danlos syndrome who haveprobably got upper airways
resistance, which isn't sleepapnea, but they've got symptoms
that they're not being treatedbecause it's not sleep apnea,

(34:20):
there's a whole world of stuffaround breathing pattern, around
upper airways, around nasal, andLouise is amazing, because she
tries to work across thespectrum with dentists and
orthodontists and deepphysicians and physios and all
of it, but why is that not justdone in one specialty.

And why is it not also something that's
considered. I was speaking tothe orthodontist and my kids the
other day, and she said that somany kids that come in, she can
see from the shape of theirmouth that they have breathing
pattern disorders. The dentistsare actually the only people who
have this porthole to our healthon a three monthly or six
monthly basis, in a way thatdoctors don't, so we could also

(35:03):
bring dentists into this,because they see something that
other people are not observingon a regular basis.

Dentists, again, in a different silo. Yeah, so yeah,
things I think what Long Covidand me and these whole body
conditions really highlight isthat need for interdisciplinary
working for people to cometogether and stop working in
these silos.

Do you think that over the last six
years we have become better atcreating that more cohesive
approach to healthcare andchronic conditions, or
healthcare in general? Are welearning that we need to look at
things in this, there's a termthat you use, not necessarily
multidisciplinary, there'sanother term as well, isn't

(35:48):
there?

Interdisciplinary,

Interdisciplinary, because it's actually this
overlap.

Yeah, it's hard for me to comment, because that's a
really big question, and I'm notan expert on every service and
what people are doing. Myfeeling is that the current way
that NHS commissioning works,and the current way that funding
works, and the current way thatthings are set up in the NHS,
which is still very much notintegrated, even though on paper

(36:14):
that is what the NHS is tryingto do, is trying to become much,
much more integrated. Actually,in reality, that's much harder
to do, and I've got lots ofexperience of trying to do
systems leadership, of bringingservices together across
boundaries, and it's very hardbecause of the way the payment
systems are set up, right. So,until we have money following
patients and outcomes that arebased on systems value, like

(36:37):
what's the value to the system,I don't think things are going
to change. I remember doing atalk to our long COVID oversight
committee in my local area, andit was called "Where is the
value? because these patientswere coming into the system,
they were waiting for then amultidisciplinary discussion by

(36:59):
a bunch of folk who never seenthem, then getting shipped off
to five different clinics andhaving loads of different tests,
and then coming back another sixmonths later, having had a load
of money spent on them, then nobetter, and still not having
access to treatments. I'm like,well, Who's winning here? Is it
the patient? No. Is it thesystem? No, you're spending
loads of money. Is it the healtheconomy? No, because that

(37:21):
person's still not working.Who's winning? And I think until
we start to look at healthcareservices through that lens of
where's the value and where'sthe value for what we're putting
in, that's going to be verydifficult to change.

Let's talk about the structure of the Long
Covid clinic that you havecreated. Have you managed to
create a layered team ofdifferent specialties to help
patients?

First thing to say is, what I have done is quite
different in that my team issplit all across the country,
and my patients are all over thecountry as well, and we do
probably 90 plus percent ofeverything we do online, which
has got massive benefits forthis group of patients, because
they're accessing healthcarefrom home in a group that's

(38:08):
energy limited, but it's gotsome disadvantages as well,
because it means I can't reallyset up something really
comprehensive local that's goteverything it needs, but I have
two GPs, a pediatrician, physio,nutritionist, psychologist,
breath work practitioner, and wedo meet and have
multidisciplinary team meetingsto discuss patients where that's

(38:30):
that's going to support theircare plan, and their medical
treatment is overseen by oneclinician, one physician who can
start treatments, tweak them,and continue. The demand is just
overwhelming. I can't keep up.It's just, it's hard to be okay
with the level of demand versuswhat I can actually provide, and

(38:50):
it's expensive because peoplethink that if you go into the
private sector, you'd be rubbingyour hands together and rolling
around in money, and it's reallynot. It's extremely expensive
running a private clinic, andall of that cost has to be
passed on to the customer, whichis how any business model works.
So, when you've sort of factoredin the regulatory side, having

(39:11):
your systems, having patientrecord, having your insurance
admin staff, management staff,all of that stuff, it's hugely
expensive, and so constantlytrying to strike this balance
between providing a really goodcomprehensive service, it being
affordable, but it's notaffordable to most people,
that's the problem, I guess.Going back to your question,

(39:33):
have I cracked it? Not really,it's not a perfect service at
all, but it's good enough to beproviding really good care to
lots of people, and actually,it's something which I set up in
the last few years. The wholething, in terms of an NHS
budget, is really not hugelyexpensive, and it would be very
easy for the NHS to emulatesomething. The problem is, you

(39:53):
don't have -

To scale it -

You don't have the experts, that's the problem. We
have to train the experts first.

The level of understanding that you have
from your experience as arespiratory physician, and from
your personal experience, thatis what is hard to emulate in
other practitioners.

It is, but I think all super specialist services
start somewhere. For you look athow intestinal failure services
have been set up across thecountry. It started off with
this one hardcore champion whowent, "We need a service for
this". And 20 years later, thereis a nationally commissioned
service now, and various centersacross the UK. It has to start

(40:33):
from somewhere who somebody'sgot the expertise, and I'm
certainly not the only expert inthe UK. Plenty of people who
could train and help getknowledge out there and develop
resources, but most of them workoutside of the NHS, because you
can't run your service in theNHS. So, unless the NHS is
willing to work with people likeme, and in fairness, they are.

(40:55):
I've actually been very welcomedonto the Department of Health
and Social Care team that'sworking on the me pathways, and
the Royal College of Physicianshave had a meeting with them,
and they're really willing tocollaborate and do something
different, and that's great, butit's unconventional, it's weird,
it's not the normal way to dothings. I have nothing about
this world as normal.

I don't want anyone to think that I am
in any way disparaging to any ofthe healthcare professionals
that are contributing or havecontributed to this in terms of
our discussion today, becausehonestly, the people that I have
met and the people working inthis space, I am blown away
every single time I have aconversation with the dedication

(41:36):
and the willingness to push theboundaries of what they have
previously been doing to try andget traction in Long Covid in
infection-associated chronicconditions. So, I don't want
anyone to think that I am in anyway discouraging, but I do think
there are a lot of people stillthere who are reliant on the
NHS, who are reliant on theirprimary healthcare provider, who

(41:58):
have not been getting the help.So, it's so amazing to hear you
talking today about how thereis, there is hope out there for
people, and there are thingsthat people can do, and I know
that it seems frustrating forpeople, but we are moving
forward, I think.

We definitely are, and my YouTube channel, which I
titled The Long Covid Clinic,what you can do. Because I was
so fed up of people being toldthere's nothing you could do,
has got lots of live streamdiscussions that I've had with
various people on things, andthere's there's some topics in
there which are very much aimedat just putting information out

(42:35):
there for people to access. Youcan't maybe access private care,
but I would say a lot of thediscussions they do still
require that support from ahealthcare professional to get
on board and support you. So, Iunderstand people's
frustrations. We're trying toput as much information out
there as possible, but there islots of hope, and I am seeing
people getting better. I thinkit's really important, even if

(42:55):
they've been ill for 2, 3, 4,years. I'm definitely seeing
people improving, and whetherthat's time alone, whether
that's time plus a bit of helpfrom my team and the clinic,
whether that's medication,there's definitely some patients
where you can transform theirlives with very simple drugs
like ivabradine or beta blocker,and stuff that anyone can

(43:16):
prescribe, really, but we just,we've got to work on that
education piece and upskillingthe wider healthcare
professionals as well,

Can I just ask you for your top line
practical advice that you offerto your patients when it comes
to pacing?

Yes, pacing, I will never stop going on about how
important pacing is, and peoplesometimes, when they're two or
three years into their journey,and they come and see me, oh
God, she's going to talk aboutpacing, I'm sick to death of
pacing and hearing about pacing,but there's pacing, and then
there's pacing scientifically,and I think a lot of people

(43:58):
think they're pacing, but thenwhen you actually look at data,
the pacing is suboptimal, andwhen I say scientific, I think
about lactate thresholds andswitching from aerobic oxygen
dependent to anaerobic oxygenindependent ways of producing
energy, and I think about thejourney of oxygen, I think that

(44:20):
how it gets from the air intoyour lungs through your
breathing and how it's gettingdelivered from your heart to the
tissues by the circulation andthe problems with that with pots
and then how it's diffusingacross your endothelial cells
and how it's getting into themitochondria and then how the
mitochondria are using that anda lot of people don't realize
you can't store oxygen in thebody, so you're reliant on a

(44:43):
constant supply, and therefore,if your heart rate is going very
fast, even if you're not doinganything that is mimicking an
exertional state, and itincreases the amount of oxygen
you need, and it then means thatif your heart rate's
uncontrolled, you're going torun out of oxygen more easily
than if it's not, and then whenyou run out of oxygen, you go

(45:04):
into anaerobic ways of makingenergy, which produces lots of
lactic acid, and that's whatcreates permanent inflammation
and makes people crash. So,thinking about that pathway and
where you can intervene atdifferent points, pacing is
really, really, really, reallycrucial part of that. And you
can use Visible, for example,and there's obviously other

(45:26):
devices out there, but the thingI love about Visible is the fact
that it's designed for chronicillness, whereas most of these
other devices are designed forhealth, and those athletes we
were talking about using a toollike Visible to keep below that
anaerobic threshold is sovitally important to allow that
underlying the inflammation, themitochondria, the mitochondria

(45:48):
just constantly burnt out, andwe need to give them a rest, and
sometimes it can take 2, 3, 4,months of being really stable
before we'll start seeing thatimprovement. I mentioned about
Jasmine just seeing a switch,and it was almost like at the
five or six month point therewas a switch, and it was like,
okay, my mitochondria could workagain now, and we started to see

(46:10):
that improvement. So it's hard,it's difficult, especially for
people who've been go, go, go,go, go, and burnt out with the
Long Covid. It's, it's so trickyto keep that balance and
guessing and trying to do itwithout something like Visible
is possible, but it's harder. SoI do generally recommend a
wearable device, the exceptionbeing if somebody's got a lot of

(46:32):
anxiety and then the constantalerts are going off, and then
it becomes counter intuitive andproblematic, but I use that in
combination with treating theunderlying cause of heart rates
going high and lookingholistically at their lives as
well, and someone like Robin andmy team will have a meeting with
the patient and go throughthings in almost microscopic
detail to look at how they'remanaging day to day and give

(46:56):
advice on not necessarily doingless but doing different.

So that's also one that they could go to
your YouTube to watch yoursession with Robin to take some
advice on how to do that. Isthat right?

Absolutely. Yeah, so there's a sort of a
background session with ToddDavenport, and you've
interviewed Todd as well, sohe's on a few different
podcasts. Yeah, but it's calledthe Micro Pacing Method, and
Robin's developed that himselfthrough his own experience of
Long Covid and his scientificknowledge of cardio respiratory
stuff in the NHS and itsphysiology,

it's amazing, and he was one of the
first people that I met who wasreally digging into that, and I
love his journey that he's goneon. That's one thing that I do
find really exciting is that somany people started out
interested at the beginning ofthis situation and had their

(47:49):
convictions about what theythought was going on, and so
many of them have turned out tobe absolutely accurate. It's
taken us five years since theirinitial thoughts to almost prove
it, people to believe it, butthere are a lot of people in
this space, some of whom we'vereferenced already, but I spoke
to Robin in early 2021 I think,and he was already there.

On it, yeah.

With this idea of anaerobic threshold, so
that is something to be said forsticking to your convictions.
Obviously, you need the scienceto back you up, but there have
been some amazing people doingthat in this space.

And I think the other thing about the pacing,
particularly the visible app, isthat it's not just about the
physical and it's not just aboutthe heart rate monitoring,
because actually HRV is very,very sensitive to other stresses
as well, so someone's goingdownhill because they've got an
emotional stress going on. Itwill be picked up in HRV, and

(48:49):
that goes for whether you're illor you're not ill. It's a really
good marker in general of healthand stress levels on the body,
physiological stress. Somonitoring that HRV and looking
at those trends is really,really important.

And seeing that heart rate spike in
stressful situations, it -

yes,

- almost gives you that visual of the
fact that our body is ouremotional stress is the same as
our physical stress.

Yeah, and I always talk about the fact that 90% of
our autonomic nervous system,which, by the way, controls
everything in our bodies, andyou don't get taught anything
about it in medical school,bizarrely. Anyway, that's for
another topic. That 90% of ourautonomic nervous system control
is subconscious. So I waswearing a Visible armband for a
while, just so I could show mypatients how it works, practical

(49:37):
when I see them in clinic. Look,this is how it works. There's
the app, how you interact withit, but it was so interesting,
because it wasn't the physicalstuff that would set my heart
rate going. It was definitelyemotional stress. So, there was
this one meeting I had to, I hadto mediate. There was these two
conflicting parties, and I wasacting as a mediator, and I
wasn't stressed about themeeting consciously. Yeah, and I

(49:59):
thought it went really well. Bythe end, we came to a sort of
sensible conclusion. And then Ilooked at the app, and my heart
rate had been going 140 all theway for the whole hour. So,
something about conflict, and wedon't want to turn this into a
therapy session, but probably itwouldn't take a genius to work
out why conflict is a might be atrigger for an adult. So that

(50:20):
was something I was like, allright, that's that's the trigger
I really need to go and sort outand really need to look into,
and this is the Bessel van derKolk stuff, The Body Keeps The
Score, that I would not havebeen consciously aware that that
was going on at all, this isthis is all in the subconscious,
and I do think that working onthose triggers is a really
important part of supportingrecovery, and that is a

(50:40):
completely differentconversation to nothing wrong
with you, think yourself better.This is about autonomic nervous
system regulation, which is animportant part of recovery in
any chronic illness. Me and longCOVID aren't that special in
this respect, and so actually itcan be a very powerful tool for
you to start to understand whatyour body is reacting to that

(51:01):
your mind isn't, and trying tomodulate those.

So working on it, but you have to first
identify those triggers, oractually have that overview of
how your body reacts to certain things.

Absolutely, and there's many, many different
modalities and ways of doingthat, and actually I think that
a lot of the somatic type oftechniques, rather than the
talking therapies, which canjust sometimes keep triggering
people and not necessarilyresolve anything. It's that
somatic work where you go in andyou can release some of these
things, is very helpful, buteveryone gets to that kind of

(51:36):
work in their own time, and I'llhave some patients who are very,
very open to that conversation,and others who are very
traumatized by any discussionabout the subconscious mind,
because they have beengaslighted and told they're
anxious and told all of thesedifferent things, and it's a
shame, because now thatconversation itself has become a

(51:57):
subconscious trigger for thenervous system, so you don't go
there, you treat them in otherways, maybe breath work or
something is going to be betterfor that person. So, you have to
adapt your approach to who's infront of you, and this is why I
really dislike these blankettools for people with Long
Covid. It has to beindividualized, because

(52:17):
everyone's story is different.

That is an amazing place to end, so thank
you, so, so much.
Gez. Your thoughts?

I have many thoughts on that brilliant
interview. Where shall I start?I think the point around
psychological and emotionalstress affecting our nervous
system, and the fact thattalking about it is
controversial, because somehowif you talk about it, then that
means that the condition mightbe in your head, and it's not
physical. That's the kind of theconnected logic to this idea of

(52:54):
the problematicness of talkingabout emotional stress or
psychological stress. But itdoesn't work that way. As, as
Dr. Kane spoke about in theinterview, your body responds to
this stresses, and you canmeasure it, and this has a very
immediate and significant impacton your nervous system, which is
one of the things that we'redesperately trying to control in

(53:14):
complex chronic illness, and Ithink it's just such a
challenging space to navigatethis when it is so complex, and
some of the positions thatpeople take are informed by some
of the really terrible care thatthey've experienced in the last
five or six years, and thereasons behind some of that as
well. Benita spoke about it'ssuch a complex space, and I

(53:35):
just, I guess it's just empathyfor everybody who's gone through
such a challenging time overthis period, and how do we find
empathy for each other andempathy for ourselves as well in
this too, because it's throughthat empathy that we get to a
place where we can find thisagain, another dirty word,
holistic approach to calming, tocalming our nervous systems

(53:55):
down. The other thing I thoughtwas particularly interesting is
how she sees, or how she, andagain, she sort of steered away
from the word, but essentiallyhow she tried to characterize
the condition, the way that shesees symptoms grouping together
to create perhaps a vascularproblem in an individual, or a
dysautonomic problem, or smallfiber neuropathy, or masal

(54:16):
activation, or potentiallyautoimmune, and where these
overlap, and when the kind ofsymptoms that are particularly
specific to those problems, andalso how they, how those don't
fit into the existingspecialties. So, who's going to
treat you for your MCASsymptoms? Well, no, none of the
normal specialties isnecessarily going to, they're
only going to look at the onesymptom that fits into theirs,

(54:39):
and I'll try and treat that asopposed to seeing the problem as
a whole.

As a whole. And that comment that she made
about the looking at Long Covidas on condition is like lumping
all autoimmune conditionstogether and not breaking it out
into sub categories, and I thinkthat comparison also plays into
the whole idea of why do somepeople develop the auto immune

(55:05):
conditions and why has does itgo down that particular routine
for those people and I thinkthat's where we have to get to
with Long Covid, what is thebreakdown in our body that
launches us into that Long Covidsituation, and why does it take
that route?

I completely agree. I think the other thing
that she said that wasparticularly interesting is how
she's seeing recovery in herpatient group as well, years in,
she's seeing people get better,but they do need some of the
right support, and, and equally,the point she made about how,
how important it is that a lotof that support has to come from
yourself, even when it comes toa child. We all have this burden

(55:45):
to have to try and listen to ourgut to try and find the right
path through this for ourselvesand listen to what our body
needs, and -

It's really challenging, isn't it? When your
body is so all over the placeand you don't quite know where
your body is.

And you maybe your life doesn't give you the
opportunity to listen to yourbody, because you simply have to
look after your family, you haveto do whatever work you can to
stay afloat, and all of thesepressures that are on us in life
are maybe counter to what ourgut tells us we need. So, how do
you plot a path through that?It's incredibly difficult.

That was a point that I wanted to pick up
on as well, for in terms of hersaying that she let her daughter
lead her own recovery, becauseeven with a child, that idea
that they do know a certainamount, and I think for those in
the position that they areparents of children with these
conditions, I think as a parentyou do know your own child

(56:37):
better than that medicalpractitioner that has seen your
child for 10 minutes, and so asa carer, being able to also help
guide that process with yourchild, I, as my child, tries to
navigate this right now. I amvery lucky that I have a child
who's incredibly diligent andwas very, very sporty before, so
I understand when she says thatshe absolutely cannot do sport,

(56:59):
I've said to her teachers, andher school's been incredible.
I've said to her teachers, ifshe says she can't do it, you're
absolutely not to make her doit. If she says she can't walk
up the stairs, you're not tomake her walk up the stairs. And
I completely trust that she isnot doing any of these things to
get out of doing anything, butbecause she genuinely can't, I

(57:22):
know that that is herpersonality type enables me to
see that in her. But I thinkthat we as parents, or we as
partners, or we as loved ones ofthe person that you're seeing
day to day go through this, wedo have more of an understanding
of what these people are goingthrough than the people from the
outside, so I strongly encourageyou to advocate for what you

(57:44):
believe in terms of that person.

Yeah, I completely agree.

Thank you so much for joining me today. As
always, it's a pleasure to hearyour thoughts and your insights,
and I look forward to usexploring with more of these
people. Thank you, Gez.

My pleasure.

Thank you for listening to Make Visible.
Please do like, follow, orsubscribe to listen to our next
episode, where we'll beuncovering more insights into
complex chronic illness. Thiswas brought to you by the team
at Visible, a group ofscientists and engineers whose

(58:36):
lives have been affected byenergy limiting health
conditions. We're buildingwearable technology that's
helping 100,000 people measureand manage their complex chronic
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(58:57):
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#36 My daughter’s Long Covid changed how I practice medicine with Dr Binita Kane

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