0:00

Covert Nineteen may no longer be

0:02

a mainstay of the headlines, but

0:04

it hasn't gone away. Evidence indicates

0:07

it presents a considerable burden to

0:09

New Zealand's to the health system

0:11

to sectors of the workforce and

0:14

the economy, and between four and

0:16

fourteen percent of people infected with

0:18

the virus will develop ongoing says

0:21

symptoms that's anything from mild to

0:23

severe wasn't as to conducted a

0:25

recent evidence summary. Of. Long Cove It

0:27

and Altair or a. Convinced it's

0:30

prevalence is likely to increase

0:32

and preventive action. Is needed.

0:35

Covert can change your dna, can change

0:37

your immune system. And of course,

0:39

there is no cure for long. covert. Or

0:41

to discuss this were joined by

0:43

Janine Cross and founder of Long

0:46

Covert Support Altair or and cofounder

0:48

of the University of Auckland long

0:50

Covered Registry Killed or Janine. Medina.

0:53

How Eyes and sporting Susie I'm well.

0:55

thank you thank you for being with

0:57

us! Sky also along the sides as

0:59

his epidemiologist associate Professor Mana. Jeffries.

1:02

Of to having a walker victoria. University Wellington,

1:04

and who advises on the

1:06

long covert registry Morena. More.

1:08

Data think it was for being

1:11

with us this morning. And Murayama

1:13

start with you. Some of those

1:16

statistics are pretty star. Between four

1:18

and fourteen percent people infected will

1:20

go on to develop some sort

1:23

of ongoing symptoms is that risk

1:25

their and present every time. Someone.

1:28

Catches the virus absolutely so as far as

1:30

we know that the risk egg so each

1:32

time you you get a covert infection than.

1:34

There is a risk am if

1:37

you have had a mild. Infection

1:39

than you just as likely to end

1:41

up with. Long have it as a

1:43

severe infection, so it's a. Really important

1:46

that we focus continue our focus

1:48

on prevention. Because that is the only way

1:50

to not gets longer of it's. And

1:53

so on. That's am. With

1:56

the virus continuing to mutate,

1:58

are continuing to. Developer and

2:00

worlds and is I guess into

2:02

front pockets as it spreads through

2:04

population. Is

2:07

this likely to continue? Likely to

2:09

increase the. People will be developing

2:11

lung covered. With. At times said

2:14

seems to us virtually impossible. the

2:16

long covance will go away, we

2:18

know that's covered. nineteen will not

2:20

go away and is is continuing

2:22

as you say to evolve around

2:24

the world at luckily than scientists

2:26

are continuing to am if all

2:28

their vaccines which is happiness and

2:30

there are also very simple rules

2:32

that we can follow to make

2:35

sure that we are reducing our

2:37

risk of infection. So things like

2:39

wearing masks and will sing am

2:41

and of course things like. By

2:43

on a higher level or that

2:45

more system level as exciting for

2:48

improving cancellation in schools and it's

2:50

and places that are. Whether the

2:52

concentration of large numbers of people

2:54

to assess had exactly what we're

2:57

talking about, I'm before we get

2:59

into this longer discussion. What is

3:01

long covert? How do we define?

3:03

It's so the World Health Organization

3:06

has got as a citizen Which

3:08

is symptoms which are symptoms of

3:10

covert nineteen or new symptoms that

3:13

persist. For twelve weeks or more

3:15

after a covert nineteen and section and

3:17

cannot be explained by another. Cools So

3:19

some people may see lots of other

3:21

nebulous definitions, but it's the best we've

3:24

got. We haven't got a simple diagnostic

3:26

test, was no blood test you can

3:28

do to say yes, you've got Long

3:31

Cove don't know, you don't But having

3:33

said that than it goes along with

3:35

a number of other and. Sent

3:38

to As and dramatic their definitions

3:40

like with her Emmy Chronic Fatigue

3:42

Syndrome which has got a very

3:44

similar as definition that's used internationally.

3:46

Just going to say how how

3:48

different is that definition to an

3:50

eel or chronic fatigue or. Are

3:52

they essentially the same saying? But

3:55

long cove it. We know specifically that

3:57

your virus that has caused this is

3:59

the covered. The direction he is really

4:01

good. Question we I think that probably

4:03

is. There is a huge amounts of

4:06

overlap but it may not be that

4:08

these two conditions are exactly the same

4:10

as you say than we know with

4:12

long services and has been precipitated by

4:14

a covert nineteen than section of. Whereas

4:17

often with Emmy we at it's very

4:19

difficult to identify see cold as if

4:21

agents have which propel somebody into a

4:23

post viral illness. Dineen

4:26

effort and bring you in at this point

4:28

and people may remember. From. Back

4:31

at this early days of the pandemic I

4:33

think. Will you please? number. Thirty Seven Lot

4:35

and that is that that as accurate as

4:38

for he thinks or think of analysis and

4:40

that means that scene of are the four

4:42

years ago. He

4:44

said some. It's been a heck of

4:46

a journey. That sir has an what

4:48

is. Your. Story. You.

4:52

You caught the. Virus in the early days.

4:54

And. What happened? move the sorry yeah so

4:56

I was really in and out her

4:59

of of getting sick ends of course

5:01

I was prefects license so it's that

5:03

kind of clears up a bunch of

5:05

arguments. Are unless I am. I

5:07

am than a says. thankfully. Not

5:09

get anybody else is wrong with my

5:11

slices. Am and some I

5:14

just didn't really get well opposite

5:16

sides. I found myself in a

5:18

position. Where the immediate i get what

5:20

we refer to as the respiratory aspect

5:22

of this am plate cleared up. although

5:24

I did have a and lingering cough

5:26

for six months of pretty hideous am.

5:28

At Birds I found myself in a

5:30

can of. I'm going to zishan

5:33

with things would just getting worse and

5:35

at took a few months. For it's

5:37

really has her on a low and

5:39

that was on the result of having

5:41

ah surgery for an intimate she has

5:43

is related issue that i had already

5:45

had a full his threats me but

5:47

I had a and ivory still. Am

5:50

ends on the battles that

5:52

surgery. Like this, couldn't

5:54

recover and found myself and of assessing

5:56

with things just got worse and worse

5:59

and worse. The hairs are at

6:01

that has lit. It's essentially a free

6:03

sec. I couldn't eat anything. I lost

6:05

seventeen Kj. I has muscles, pain and

6:08

joint pain so bad there's still convinced

6:10

that I has a terrible arthritis I

6:12

couldn't move. I had fine folks are

6:14

bad. trust issue I had to mint

6:17

sets at about twenty two different symptoms

6:19

and my life does go. Completely changed

6:21

our from being a very very high

6:23

functioning individual to not be able to

6:26

do anything at all. And of course

6:28

nobody had any idea on. This is

6:30

going on with me and it had

6:32

a a huge impact on my gosh

6:34

darn am And to subtract I into

6:36

growing a lot of polyps the my

6:38

bow having a number of other. Surgeries

6:41

as to this and in from the As

6:43

is wrapping up because it's four years worth

6:45

of health snakes and ladders. The main am

6:47

is it or the time it's developed. Into

6:49

and what we're seeing is happening around

6:51

the world to a lot of people

6:53

into autoimmune conditions And so I've had

6:55

a a rash of different autoimmune diagnosis

6:57

since sin and that has one after

6:59

the as it or that happens as

7:01

directly as a result of my original

7:03

and cause it and fiction. So

7:06

in terms of. Diagnosis or

7:08

you know, diagnosed with also

7:10

mean conditions. Are you diagnosed

7:12

with Lung cove? It's. Is

7:15

it both? As a know, you're a good

7:17

christian and and all that south? Ah, Into

7:19

that to have went might have made as

7:21

if coasted some. It's that without the that

7:24

by America and. I think further up

7:26

the the food chain on that has

7:28

without proper of resources Dame provided to

7:30

algae pays am in as hero to

7:32

be able to diagnose am a long

7:35

covered with dozens of position where it

7:37

a lot of people on getting diagnosed

7:39

as survey I really had to fight

7:41

again early days and ah the had

7:44

even heard of that. Certainly it was

7:46

a very long post be able to

7:48

put to poll that they just didn't

7:50

understand so I may I got the

7:53

full. Medical. Guess slicing that we

7:55

assess the issue for it's just not anxiety.

7:57

Sure it's not to present in a release.

8:00

Entering on becoming a i'm

8:02

a psychosomatic although very clearly m

8:04

it was obvious that thing.

8:07

Quite nefarious going on with me, but as

8:09

you look through all nice business nights and

8:11

an hour without getting too much into. The

8:13

weeds of that's the problem with the

8:15

their health systems like. A continuity of

8:17

data connection pigs and won't even see

8:19

is that nobody really to to the

8:21

in a couple of miss business will

8:23

refer to as and when they're referring

8:25

me on to somebody else. But

8:28

mostly they end up chasing. At

8:30

a symptomatic level, those individual

8:32

items and some. The

8:34

certainly not and to ah attributed

8:36

facts are different things or be

8:39

parcels I am at interconnect and

8:41

the umbrella. However, that says

8:43

a happy because Isis and quite an

8:45

unusual position. Because of the role

8:47

that I play out and long cause

8:49

it's support across out here are his.

8:52

I have been am a research candidate

8:54

on number of projects and one of

8:56

those as with Warren Tasers Attacker Universe

8:58

to Dame and my blood's has been

9:00

very clearly under the microscope and I

9:02

hence unequivocal he tell you that they

9:05

could see the enormous impact my immune

9:07

system has as a result of that

9:09

covered and six and and eighteen months

9:11

post says and six and you could

9:13

see my and I'm immune system having.

9:15

An enormous freak out so that's very salads I

9:17

think. unfortunately not something anybody else really kicks has

9:20

access to such a assist. Little bit the missing

9:22

and in some ways, but it certainly gives a

9:24

lot of hope that there is a chance to

9:26

be able to do this in the teacher. The

9:30

moon is come back to you.

9:32

I'm quite a few questions coming

9:34

in and this seems like a

9:36

good time to ask you this

9:38

and other indicators. For.

9:41

Someone might develop. Lung covered in

9:43

a you catch the virus

9:46

and. If. She met even have

9:48

quite a at a my you know wrestling

9:50

mild those of it's do we have a

9:52

sense of whether. You're likely to to

9:54

go on and actually develop this

9:56

more persistent condition. It's a really

9:58

good question. Free. Don't. We

10:01

know some things that to increase your risk

10:03

of the the chance of getting along cove

10:05

it. So for example it's much more common

10:07

in women and so we know that such

10:10

a woman you're more likely to get long

10:12

cove it. But of course that does not

10:14

mean that every woman who gets covered nineteenth

10:16

will get long cause it's like close. We

10:19

know it's more common in am a middle

10:21

aged although it does on the entire age

10:23

range from really until June Two older adults

10:25

and we know it's more common for people

10:28

who have a beast as a so of

10:30

have a have got a high at body

10:32

weights and that probably is tied in with

10:34

m. Summers the

10:36

as the immunological, as.

10:39

Effects of of having a as a

10:41

high body weights and but it's really

10:44

impossible to say when somebody is in

10:46

their first weeks of having covert Nineteen,

10:48

that yes, they're more likely to get

10:51

on cove it or not to another

10:53

Anyways, to. Guard against us

10:55

the only way that we know is

10:57

tourists so we do know that if

11:00

you've got covered nineteen and if you

11:02

push through you are much more likely

11:04

to push your body of to pupils

11:06

a ensued not be able to cite

11:08

the insects and and get fully better

11:11

and end up much more sex an

11:13

interesting as well the says more much

11:15

more prevalent and women and. Especially.

11:17

Middle aged. Women and. Is.

11:20

There any indication why that getting. Not

11:24

conclusively, sir, are lots of hypotheses

11:26

going around for am mostly Iran's

11:28

Am probably are unsuitable Apple Modal

11:30

A Sex But no, we don't

11:32

yet know why. And

11:35

other questions come in. Here and as

11:37

as places client cause it's so much

11:39

more prevalent and severe than other post

11:41

viral illness as I wonder if is

11:44

that actually is the case is it

11:46

isn't much worse than other forms of

11:48

of chronic fatigue or any I don't

11:50

think is is it's just that we

11:53

have such as suits them impact during

11:55

the a pandemic of people with club

11:57

nights scenes at the Impacts of of

11:59

Lanka. There's much more obvious. oh

12:01

and for example ebay and chronic

12:03

fatigue. Other posts far as illnesses

12:05

and has been us to any

12:07

virus but of course be don't

12:09

get thousands and thousands of people

12:11

every week having the same virus.

12:13

But we do know that you

12:16

get this post influenza an illness.

12:18

does this post file innocence across

12:20

as many many different viruses? so

12:22

it's more just that the it

12:24

was almost like s Adam and

12:26

magnification off the same sex with

12:28

the pandemic months and from your.

12:30

From your personal perspective, any is

12:32

something that you also. Live

12:34

with What are the ramifications on your

12:36

life? That's right. So ice I was

12:38

diagnosed with me. I'm just coming out

12:41

for ten years ago. I spent about

12:43

four years virtually lying in bed m

12:45

for a lot about time I could

12:47

and managed to get up to get

12:49

the dries the children to work at

12:51

the school and come home sleep from

12:54

nine to three and get myself back

12:56

up to be able to connect them

12:58

again from school. So no, it wasn't

13:00

easy am I'm incredibly lucky that I've

13:02

got back to at most. Sleeping able

13:05

to work. But it

13:07

still has a huge impact on my life.

13:09

So people who see be at work. Cinco,

13:11

you look perfectly normal. Lesson covenants do most

13:13

of a day's work, but what they don't

13:15

see is that I go home and make

13:17

sure the kids a sense and I go

13:19

to bed so it's still has got a

13:22

huge effect. But of course it's very commonly

13:24

referred to as the invisible illness because you

13:26

only see people and their well and you

13:28

don't see being on the days that out

13:30

there can't guess as beds were the days

13:32

I can't leave the house and I think

13:34

it's really important for people with long cove.

13:36

Is another patrol illnesses that we recognized

13:39

the huge impact as can house on

13:41

people's lives and that understands this. it's

13:43

real. I think this a loss of

13:45

stories that we've heard of. People who

13:48

have liked to lean has as has

13:50

a spot of put down by their

13:52

daughters to potential anxiety. It's but this

13:54

who wants to be living their lives

13:57

site that it's not a nice anybody

13:59

would say. It's a

14:01

nice this has been our allies, has

14:03

been given to you, have been forced

14:05

on the eighties and and really important

14:07

that we are amp can empathize with

14:09

people and. Interesting

14:12

to hear what dealing with saying

14:14

about the freak out essentially the

14:16

her immune system had about all

14:18

of this because. We. Think

14:20

of. Causes or was I as a

14:22

layperson. think of covert as. A

14:26

respiratory diseases and say it's it's akin to

14:28

or a cold or flu and it has

14:30

grown forest I supposed you know to some

14:32

extent that makes sense. But

14:35

this. And. This

14:37

enormous ah reverberation it seems

14:40

to have through your. Immune

14:42

System. It also

14:44

appears to be skin condition you think

14:46

is it put. I would you

14:48

classify it as a as a condition. So

14:51

covert I'd seen itself is very

14:53

often or spirits he condition but and

14:56

we notice of is transmitted at and

14:58

in other respects conditions but there and

15:00

numbers as symptoms even with the acute

15:03

conditions are not long has it that

15:05

just Covert nineteen itself which are

15:07

are systemic so we know that there

15:09

are and people who had a lot

15:12

of Tyree and former things we know

15:14

that there are people who has and

15:16

pain as headaches, blurred vision the were

15:19

all sorts of symptoms that go

15:21

way. Beyond the am there especially

15:23

condition that with respiratory symptoms even

15:25

though those were the most common.

15:28

Once you move from persecute condition

15:30

and to the chronic condition of

15:32

long close it then without tacit

15:34

becomes a systemic or throughout the

15:36

bossy condition so the immune system

15:38

when it's texts from just slicing

15:40

the virus to am being hyper

15:42

react sense as that is the

15:45

it's and across the whole body

15:47

and can affect all sorts of

15:49

different symptoms at systems and we

15:51

do. Know that people with Long Cove

15:53

it's have got higher risks of a

15:55

number of difference chronic conditions or things

15:58

like diabetes and heart conditions. Where

16:01

them the cold suppose is isn't the

16:03

sort of hyper vigilant states. Him.

16:06

And another question is just come

16:08

in which ah is an interesting

16:10

one and one all since and

16:12

I have a personal interest and

16:14

it says please asked to guests

16:16

on this person says I've lived

16:18

with post viral any Css for

16:20

forty years so far as avoided

16:22

covered and I'm fully vaccinated. Am

16:24

I at higher risk of lung

16:26

covert. To new

16:28

Mona. We don't so very

16:31

impressive that you've not got close

16:33

its that says atmosphere and a

16:35

reflection of very careful precautions is

16:37

at you've taken which is wonderful

16:39

at we do not know what

16:41

happens to people with me who

16:44

gets cove. It's as we know

16:46

anecdotally, cities are plenty of people

16:48

who am. So. Who

16:50

guess over the covenant section and

16:52

are not? May I made any

16:54

ways to their amy is not

16:56

any worse. But we do know

16:58

anecdotally there are stories of people

17:00

who have sam us to cove.

17:02

Is there any is worth That

17:04

might be what you were called

17:06

a typical crafts and and so

17:08

I'm afraid that there isn't enough

17:10

evidence to know what's the likelihood

17:12

of that is but certainly prevention

17:14

of guessing cove it's and continuing

17:16

doing what you're doing, wearing masks,

17:18

avoiding crowded places, Is a

17:20

very sensible precaution for people

17:22

with underlying condition and listen.

17:24

To our international to Saturday morning with

17:27

Susie Ferguson my guests talking about Long

17:29

Cove It this morning. Armando. Jeffries

17:31

epidemiologists and also didn't. Cross

17:34

and his with us. I was

17:36

one of the first patience to

17:38

i asked of nineteen in. New.

17:40

Zealand and didn't come back to. You and

17:42

lots and lots people are getting in

17:44

touch Hear the son says i'm an

17:46

ex Research nice. To notice that people around

17:49

me who get long cove it seem to be

17:51

the energizer bunnies. The can't stop,

17:53

won't stop And. And it does

17:55

seem that's you know if rest. Is the only

17:57

thing we know that. Does seem to work. As

18:00

a potential way of avoiding. Long

18:02

covered that would seem to stay current.

18:04

Thank you Mrs Getting a touch with

18:07

the text Also. Another person saying thank

18:09

you for talking about long prove it's

18:11

I was a medical consultant that got

18:13

mild covered nineteen, seventeen months. Ago

18:16

attorney unable. To do

18:18

more than a few hours a week

18:20

since I'm dealing with the physical, mental,

18:22

and most importantly, the psychological issues. From this,

18:24

please keep this issue in the public awareness.

18:28

The psychological issues and.

18:30

Is an interesting wants to touch on to. Name

18:32

because. As. You mentioned

18:35

the gas slicing. And

18:38

what is it like when you get

18:40

to get to situation where you know

18:43

more about your condition than. The.

18:45

Medical staff do with his his.

18:47

His. It's amazing how well that goddamn. An

18:50

idiot. I. I use a of are very

18:53

aware of the in that position with

18:55

into meteor stride know I've already previous

18:57

to cause it had a m many

18:59

year or processor to me sixteen years

19:01

to get diagnosis and much as us

19:03

have already been on a long have

19:05

I gone a long odyssey diagnostic all

19:07

the sees what we call that. And

19:10

so does it. Is really frustrating ends

19:12

and look at at not exactly the

19:14

answers to the other than isolate it's

19:16

a moment. That says the lack of

19:18

choice that we have because there is no

19:21

of the pathway of framework put in place

19:23

that there is expectation of an individual to

19:25

be. I was ten up with a very

19:28

clear understanding of what is going on for

19:30

the in and that they will need to

19:32

do a fair amount of education as Courses

19:34

South Advocacy. So be it can imagine

19:37

that creates an enormous amounts of an

19:39

vigilance. It's required as fun and I can

19:41

not only speak for man experience at it but

19:43

I in a helicopter two and a half thousand

19:45

patients and I can assure you that this is

19:48

a very common experience and. Does feel it.

19:50

This is the Us. the really. The novels.

19:52

Want we're wanting to see signs and

19:54

that it's not just long private. it's

19:57

the canary Here in this situation, they

19:59

are us. A number of chronic

20:01

conditions at Ces in a very similar

20:03

kind of and place we're in as

20:05

hero. where we how we look, s.

20:08

Managing an A medical conditions is on a

20:11

tree hours basis of the A and a

20:13

sense of who is dying fastest in fact

20:15

front of us a sense of these the

20:17

person who is getting boasts be seen. And

20:19

I understand why. That is basically when we're. Looking

20:22

at limited resources. But what

20:24

we've got with chronic conditions is quite often people

20:26

who are dying over longer periods of time and

20:28

and the quality of life is absolutely. Appalling

20:30

as a result of this and has

20:33

huge implications. Not unjust the individual but

20:35

of course on this on a on

20:37

a communities they workplaces. Lot

20:39

of people are economically inactive and

20:41

in these things or have an

20:43

impact on a lot of different

20:45

ways am on us as a

20:47

society and say that that whole

20:49

having to turn up be vigilant,

20:52

be yourself advocate of course is

20:54

also really steeped. In privilege with the you

20:56

are in a kept. Able to do that

20:58

in the first place or. Even within your

21:00

own, and not just with a new of

21:02

his aussi. And with or belief system

21:04

or with his shirt is I'm you

21:06

think it get pulled into that but

21:09

a clue what you're capable of? Sad

21:11

because we're talking about people who was

21:13

sick and a huge part of what

21:15

happens was long closes the cognitive dysfunction

21:17

and I can assure you that peace

21:19

is extremely real. at is so. Disabling

21:22

and. Assume it sound like

21:24

a block and my he'd already the brain

21:26

fog. that yes by the brain fog is

21:29

just as it's phenomenal and it's not just

21:31

a little bit of memory loss would just

21:33

for getting a couple of words. it is

21:35

an absolute block in the brain. That and

21:37

it disables you from be able to access

21:39

the information that he normally are able to

21:42

get to and it makes it is very

21:44

challenging to they'd be expected to sit in

21:46

front of someone and clearly it's a killer.

21:48

Exactly what's going on with here. So I

21:50

feel we've been able to identify and and

21:53

start to develop. Resources and tools to

21:55

support patients on their odyssey. and

21:57

I believe there are a lot

21:59

more. We can be doing is we're

22:01

trying to do that now you have. This is

22:04

one the things that I wanted to. See

22:06

canvas with both of you on

22:08

this because you know obviously if

22:11

an estimate of and accidents am

22:13

a Cc kicks in and that

22:15

is both on the financial side

22:17

of things but also you know

22:19

transport for getting to and from

22:21

medical appointments and that kind of

22:23

thing for hims but for long

22:26

causes. You. Get nothing. Riot?

22:28

Slut? Innocent? yeah and it's

22:30

very challenging as is an

22:32

extraordinarily. The lines on how

22:35

good you are at being

22:37

able to push again and

22:39

the advocacy. and then lot of the

22:41

door or as to he did nothing else you

22:43

on that day. So we're finding the consistency in

22:45

the and. The ridges three days had but

22:48

also anecdotally with in the groups were in

22:50

a very privy to a lot of the

22:52

stories of people is that they are continuously

22:54

turned down an in a we know that

22:56

a large portion of people who are on

22:58

job seeker are people who are very sick

23:00

and living acid to mess up to that

23:02

she pays and get that medical certificate that

23:04

even just tuning up to do that on

23:06

the basis of regular basis that they supposed.

23:08

To do it is extremely difficult for

23:10

them to do in most cases is

23:13

making them more. Sick little and of

23:15

course adding more to our Gps or

23:17

already overloaded. Says is fundamentally sound

23:19

system issues that exists there since and

23:22

then thing ever to take their and

23:24

sorry that that medical skipped backs up

23:26

with our as they could be spending

23:29

many else on the phone with wins

23:31

and happen across. The person who knows

23:33

nothing about long, private or worse, Doesn't

23:35

believe that exists and so

23:38

that the political and the

23:40

conspiracy the are is layers

23:42

and here that has really

23:44

creeps into. The. Long Cove A discussion

23:46

which other diseases just aren't have as

23:48

a problem? Need unexpected turn out to

23:51

a doctor and have a doctor in

23:53

a. Hold of belief

23:55

That and. That long has

23:57

it. can be cured simply by you

23:59

sinking way out of this. That is

24:01

happening here in Aotearoa because there are GPs

24:04

who are spreading that information amongst each other.

24:07

And so you can imagine that it's getting

24:09

harder and harder for patients to

24:11

really get the care that they desperately

24:13

need. And the result of that we

24:15

are very clearly seeing in the data

24:17

is their quality of life scores. Horrific.

24:21

Do we know why there are some doctors who simply

24:23

don't believe it's a real thing? Look

24:26

I can speak from a point of view of

24:28

what I have said to me directly from

24:31

a doctor. And I

24:33

know she's very embarrassed about this now. That's okay,

24:35

we all learn. But the way

24:37

that she put it to me is I get

24:39

to a point where I so feel helpless. I

24:41

want to help. It's in my DNA to

24:44

help people. And when I don't know and

24:46

don't have the tools to give them, offering

24:49

them a program that they could possibly

24:51

try that might teach them

24:53

some ways to think about it

24:56

differently, it seems like

24:58

a great idea. And I can see where

25:00

that didn't feel nefarious for that person. But

25:02

suggesting it to me someone is very aware

25:04

of the science behind those things and

25:07

that it is teaching gaslighting of yourself that

25:09

you can just pretend your symptoms don't exist

25:11

and if you don't acknowledge them maybe they'll

25:13

go away. And notwithstanding

25:16

mind-body is still an important part

25:18

of us being able to get

25:20

well. It is not the reason. And

25:23

that's not helpful for a patient when

25:25

realistically a better framework is to be

25:28

able to provide them support. You may

25:30

not have the answers but being there

25:32

for them and being their advocate is

25:34

the number one job. But it

25:36

does come back to the systemic issues that we

25:39

are experiencing in healthcare with overloaded

25:41

GPs who haven't got the time

25:43

to do their own research. They

25:45

need to be provided frameworks. They need to

25:47

be given pathways and symptom mapping. And all

25:49

of that is available for us to do right

25:51

now. We have collected this data. We don't have the

25:53

resources to do it But we're trying

25:56

to do it anyhow.. More Questions coming

25:58

in on 2101. And

26:00

fast they are into. Code to and said

26:02

to us here at our and sadness still

26:04

insist they morning and and monad seems. Like

26:06

a good time to ask you about

26:08

this. One person

26:10

says please ask about benefits of. The

26:13

Nation for preventing long comforts

26:15

and. Do they have

26:17

any influence here? Without diet

26:20

so you cannot get long. Cove is

26:22

if you don't get covert so festival

26:24

having a vaccination will reduce your risk

26:27

of getting the and sexton the first

26:29

place which is a huge benefits and

26:31

timer. A great article says oxidation. Beyond.

26:35

That. We have found that people

26:37

who are vaccinated even if they then

26:39

subsequently get over it because we do

26:41

know the vaccinations isn't a hundred percent

26:44

foolproof, does reduce the risk of long

26:46

close. It as a mechanism behind us

26:48

isn't yet fully understood, but it's really

26:51

clear that that has happened and it's

26:53

probably one of the real benefits we've

26:55

got here. Naughty Earth. That's a huge

26:57

burden of Covert Nine. Seen that happens.

27:00

Mainly happened after we had a fabulous

27:02

sucks and a son program. So when

27:04

we look at. The overseas tasers

27:06

than see prevalence of Long Cove

27:09

it as much higher in places

27:11

like America light Europe where the

27:13

end because it the pandemic happens

27:15

long before words are the the

27:17

bulk of the pandemic began before

27:19

taxes since were developed. Does it

27:21

depend fritz. Taxation. People.

27:24

Received So for example in New Zealand get

27:27

find the size of acting which is the

27:29

am are unable on fresh to some of

27:31

the other ones the Us to xenical on

27:33

the outskirts acting had a different methodology

27:35

behind it does that. Make. Any difference

27:38

to me know it's. A good question. I

27:40

don't know the answer to that, but

27:42

my guess is not because I think

27:44

that probably it's see immune response that

27:46

our bodies as raise in response to

27:48

the vaccines that is going to be

27:50

protected rather than the vaccine itself out.

27:52

What about anti viral switch? Some people

27:55

are able to. Access.

27:57

Is that likely to curtail long?

28:01

Who says two ways there that could

28:03

work? One is antivirals that you get

28:06

when you are sick with covered nineteen

28:08

in the acute seasons. We know that

28:10

easy to get those in the first

28:12

couple of days to be beneficial Am

28:15

in terms of see subsequent risk on

28:17

Long Cove it I don't think that's

28:19

has an impact but having said that

28:22

we are beginning to understand the biological

28:24

are reasons why people get Long Cove

28:26

is one of the potential reason is

28:28

that the remains a reservoir of the

28:31

virus. In Palsy and so there

28:33

are currently trials on going of

28:35

using Park Slope ads. So the

28:37

antiviral it's given for Acute Cove

28:39

it's as to treat Long Cove

28:41

it is and we don't yet

28:43

know the answer to that puts

28:45

it is it's a longer course

28:47

and you get for acute covert

28:49

nineteen am. But there there is

28:51

good scientific evidence to suggest that

28:53

might work and so ready am

28:55

the anticipation those results quite excitedly

28:57

and would it depend hi Soon

28:59

after the development of Long. Cove.

29:01

It's. Ah that us

29:03

you were able to access as antivirals

29:06

with that make a difference or as

29:08

it does to have you say probably

29:10

not because is there is an ongoing

29:12

reservoir also virus kept within the policy

29:14

then that is because your body has

29:16

not been. It's clear that amount of

29:18

virus and so is still persisting month

29:20

possibly years after the initial infection. so

29:22

no that's of matter too much. To

29:25

dell to them be a bit of a breakthrough on. Any.

29:28

More generally. Possibly

29:30

although given this whole variety of different

29:32

viruses that can cause i me and

29:34

said that it one as far as

29:36

doesn't necessarily treats every far as doesn't

29:38

trees every far as they are very

29:40

specific as think it would be harder

29:42

to try to use us on a

29:45

population level and less we had a

29:47

really clear understanding of out to causes

29:49

of agent of them please I mean

29:51

perhaps more wishful thinking of my for

29:53

my taste of Ulysses. Or international

29:55

says boarding and we're discussing

29:57

long cause it's this morning

29:59

but. The Jeffries and

30:01

Janine Crossan I'm. Janine

30:05

I think coming to. The

30:07

situation that is now in front. Of

30:09

the government's if we're looking

30:11

at a force of fourteen

30:13

percent. Rate of

30:15

long cove it from any individual.

30:18

And section. That

30:21

is potentially a staggering number of

30:23

people thats for a longer or

30:25

shorter period of time could end

30:27

up being. Quite. Significantly

30:30

affected by this. And

30:34

so what? does? What

30:36

is the government need to do to address.

30:40

Look M S we a Dell registry

30:42

so and exits day to day. final

30:44

report will to come out of the

30:46

next few weeks we sick were sitting

30:48

at around a hundred and four thousand

30:50

is our production of people who currently

30:53

with presents and that had our am

30:55

in a to put that into context

30:57

set number that's twice the number of

30:59

people who diagnosed with cancer the last

31:01

year notice it has issues and by

31:04

and it's cumulative because it's not a

31:06

number their says meet of are very

31:08

shop her tongue. Typically people find themselves

31:10

six the quite some time and and

31:12

and many years and and for laws

31:14

it continued on an almost and decent

31:17

they say it If we have a

31:19

seat early days in this is a

31:21

lot of research that requires look what

31:23

what I understand ends and enjoy it

31:25

as it is very challenging for government

31:27

when we were on a three year

31:30

political cycle right? So this is needs

31:32

a longer to know and bipartisan approach

31:34

to it ends and what we've formed

31:36

is something called a for the collectors

31:38

and nearest. Can correct

31:40

me if I'm wrong but I think the

31:43

city sex clinicians and researchers that are actually

31:45

and puppets asserts across university collaboration to ensure

31:47

that we're really looking at how we can

31:49

work well with each other to I get

31:52

instead in front of get as much dead

31:54

as we can in your head from a

31:56

lot of our colleagues as the last two

31:59

weeks with the. Htc briefing of we

32:01

were all part of at we are

32:03

trying a very best to ensure that

32:05

we can finish that The ministry with

32:07

the latest information that will help them

32:09

make a really great informed decision. My

32:11

understanding is that it is such a

32:13

large elephants in the room that it's

32:15

one of those things we business touch

32:17

because if we touched that they will

32:19

have to keep playing with that arm

32:22

and it is. Terrifying an

32:24

end, unfortunately. Chronic conditions have often

32:26

been treated like this act as a game

32:28

combat vets of the tree as view of

32:30

of what's happening. And. So we

32:32

are we really. Clear in terms of what we're

32:35

asking for and ends at we liked that

32:37

out quite. Clearly within

32:39

the pets to see briefing off and

32:41

I expect a son requirements around prevent

32:43

says treatments and to a in terms

32:45

of the the into license and encouragement

32:47

of mask and I'm looking at sick

32:50

leave have access to unpack slow those.

32:52

Those things are really important and I would

32:55

be adding to that. We really. Very

32:57

clearly need them to step in to provide.

32:59

Am I'm leah advice to

33:01

as he pays? That makes

33:03

it very. Simple. For

33:06

them to be able to diagnose. And

33:08

put into a pathway and then

33:10

to continue to support the research

33:12

that is building outpost symptom maps

33:15

and those patient pathways am and

33:17

support the suspect lay around us

33:19

so that we are able to

33:21

stop this early on. And

33:24

these are things that might seem lives,

33:26

but actually. Out of well underway and

33:28

among cell research groups we all have

33:30

very clear plans on cells This can

33:32

be achieved. Our and the

33:34

implication of that. Said our

33:36

our pathways and tenure is it. It

33:38

will probably likely have a really positive

33:41

net positive impact on at zero it

33:43

was seats a reduction in costs out

33:45

with moment it's going out of control

33:48

with we like are not in only

33:50

seeing and the day says as an

33:52

average long has the patience is spending

33:55

it at around two hundred and twenty

33:57

five percent more the Gp than an

33:59

average. And as and so that

34:01

has an implication. We know this

34:04

is turning up in our workplaces and or

34:06

ducky your use of of sick leave people

34:08

having. A large little of absenteeism but

34:10

also receive a lot of present his and where

34:12

people don't has sick leave list So the turning.

34:14

Out to work six days and and

34:17

this is something I did want to

34:19

talk about because the sick leave policy

34:21

for many people is a matter of

34:23

days a year. And a very

34:25

clearly. We've. Been hearing from.

34:28

You. And from Mona the. One of

34:30

the few things we do. That. Can

34:32

potentially soapy? Getting on covert as

34:34

being able to rest center the

34:37

dichotomy. Presumably if

34:39

you see know if you've run out of

34:41

sick leave and you've got bills to pay

34:43

in the cost of living crisis you can

34:45

see why people. Would. Choose to

34:47

go to work in. you can see how people

34:49

are getting depressed, anxious, and. So.

34:52

Basically policies, something that needs. To

34:54

be considered, what would your.

34:57

Sense be of were that nice move. To. Like

35:00

a has to be government supporters, I think it

35:02

would be incredibly challenging to put that palm. I'm.

35:05

Business owners to be a lot more

35:07

patience and a very long term and

35:10

chronic condition and they are some that

35:12

are doing of the a beautiful wonderful

35:14

job of of doing so. and that's

35:16

if I understand that. Really challenging because

35:18

it feels like a huge opening up

35:20

of something that the haven't really been

35:22

forced to before. but it is if

35:24

they don't do what's happening on the

35:26

opposite side is it. With seeing people

35:28

being pushed into poverty, whizzing, their

35:30

lives, change and wholesale ways that

35:32

they are, they're losing their houses.

35:34

They often thought into relationships are crumbling

35:36

underneath us. Their the kids aren't getting

35:38

the kid they would. They need to

35:40

be kidding the not able to pay

35:42

those bills and. These these

35:44

are not ending and good places.

35:47

These stories are awful. And then the

35:49

not all my stories to tell but what I

35:51

can. Tell you is that mental

35:53

health crisis is extremely real. So.

35:57

The. Burden of Long Cove. it is exacerbate.

36:00

Hang. The. Situation with mental

36:02

health and okay at all which we already

36:04

know is known. A great place defeat the

36:06

people are desperate. That. Don't know

36:08

what else to do. They are getting

36:10

to a point where their lives ourselves.

36:13

And I can't talk about it because it's

36:16

been politicized and people over covers and they

36:18

don't want to believe a long cause it,

36:20

because quite frankly, it's terrifying, right? And everything

36:22

that's happening out there in the world right

36:25

now. This on top of all of that

36:27

oh my goodness Gracious is a lot. So

36:29

it is really important that we can take

36:31

some of this thing out of it by

36:33

exley having a really good plan. Cassettes.

36:36

Really how you support people is giving them a

36:38

sense of that. did not alone on this that

36:41

the not having to traverse this. Entirely.

36:44

From their own way was all within

36:46

themselves helping and feel course and then

36:48

taking them through this and to get

36:50

them back to a place with i

36:53

can be back in their life and

36:55

being a conservative part of society for

36:57

to do that means to them and

36:59

monarchies you would jump in and point

37:02

yeah just wanted to I'm more to

37:04

to agree with up with everything that's

37:06

been has described purchased a highlight that

37:09

these problems are exacerbating inaccuracies that we

37:11

know exist and are pervasive in New

37:13

Zealand. So issue has got a job

37:15

where you can take on never said

37:18

sick leave I can say virtually unlimited

37:20

sick least and up it's been an

37:22

extremely privileged position if I can. Realize.

37:25

That today I can't leave the house

37:27

but I can work from home. That

37:29

puts me in a very privileged position

37:31

and we know that there are many

37:33

many people and this is particularly the

37:35

case. Somebody answer Pacific people out of

37:37

people who am or in low paid

37:39

jobs to do not have that privilege

37:42

and and say are already facing these

37:44

inequities. am A be able to access

37:46

to health systems, not be able to

37:48

afford to see a T P and

37:50

not be a to afford seats is

37:52

Ctp numerous times which is required for

37:54

long overdue. As to the into said,

37:56

and so, I think it's really important that we

37:58

remember that this is. An illness

38:00

which is going to. Exacerbate.

38:03

Those inaccuracies even further, and that's really

38:06

important to remember this. Any approach that

38:08

we're using to try to address Long

38:10

Cove is needs to keep. doesn't the

38:13

absolute four cents on. This as well

38:15

and another question that come in from

38:17

someone saying it does had long covered.

38:20

For sixteen months now, they would like to know

38:22

how they can get on the registry journey. Nothing.

38:24

You can probably answer that one relatively. Quickly I

38:26

silk has has so he could hit

38:28

to long covered support to cut it

38:30

insists and on the other links to

38:33

all the various things with a plus

38:35

a bunch of other resources and the

38:37

support group is in existence since asset

38:39

another question that the vast is around

38:41

vaccines. Suit, This

38:43

person gets another vaccine I'm afraid to

38:45

get. It's odd because it means coming

38:48

into contact with virus again should I

38:50

do it. Is there a chance he

38:52

could make me worse? Mona Lisa announces

38:54

on. So. Getting the vaccine

38:57

is not coming into contact with

38:59

the virus. Guessing the vaccine does

39:01

not give you covered nineteen and

39:03

we have heard stories of people

39:05

who have colts and me or

39:07

long closer to have reacted badly

39:10

to the vaccines in the same

39:12

way. There are people who reacted

39:14

badly to the vaccine when they

39:16

don't have an on covert or

39:18

any however it so stories and

39:20

side effects are much much smaller

39:23

and lower and in prevalence than

39:25

the consequence. Of guessing Cove is itself

39:27

as and and six so my at

39:29

my advice would always be to get

39:31

vaccinated unless you had had a particularly

39:33

bad reaction to the fight scenes and

39:35

the first place in which case it

39:37

might be worth having that discussion with

39:39

your health provider and. Looking

39:42

to seats illness and the impact.

39:44

Of uncles it's own. Children.

39:47

We. Haven't discussed specifically in

39:50

the Next Generation. I'm.

39:53

Is. Thought a more complex.

39:56

Ah, A condition

39:58

to assess Mona. The cause.

40:01

Of. Course children are still growing and developing in

40:03

their immune systems is of see doing. So as well.

40:06

I think it baby and very young

40:08

children harder to add to diagnose and

40:10

eight and preschool children who are who

40:12

are unable to articulate what's going on

40:14

for them. But we do know that

40:16

long club it as a really significant

40:19

issue and children and but with her

40:21

a piece of research led sam Ebay

40:23

as any Bennett's Am from university of

40:25

the type of Allinson to looks at

40:27

this unsigned that the impact on children

40:29

is really quite suits the impact on

40:31

their not be able to go to

40:33

schools and not be able to participate

40:35

in they use like cities was. Just

40:37

as large as asses in adults And

40:39

I think this is something which has

40:41

been overlooked and is really, really important

40:44

because if we think about somebody, his

40:46

life trajectory guessing a very serious illness

40:48

when you're young and has huge implications

40:50

is you're unable to go to school.

40:53

The implications your entire life are are

40:55

sectors you're unlikely to be able to

40:57

achieve as well. And as somebody who

40:59

is able to go to school and

41:01

therefore unlikely to be able to fulfill

41:04

the types of cells he may want

41:06

to do. As well as obviously

41:08

social development of relationships are a must have

41:10

the effect so I think it's something that's

41:13

very very important. We've been trying to get

41:15

say the research funding to look into this

41:17

and sailing at that says seems like it's

41:19

not a power see him on the Sunday

41:21

which I find really really depressing and but

41:24

I think it's it's something that we do

41:26

need to keep working at to make sure

41:28

that we can. Ensure.

41:30

That children with Long Cove it's our supporters

41:33

as well as possible and I. We do

41:35

know that there are supposed to things that

41:37

can be done and there are treatments some

41:39

of the symptoms of long overdue even though

41:41

we can't get rid of the illness and

41:44

that works. but children and adults. And

41:47

I think it's really important that says that

41:49

to the to lose. It suits to health

41:51

pathways that asses that happens across a nationally.

41:53

So we do know there are pockets where

41:56

it's working really well across the country. It's

41:58

that is not currently and us. Option

42:00

I have which I think is is

42:02

really very sad to the needs to

42:04

be an overarching strategy on the medical

42:06

side of thing. Without that it seems

42:08

to me that's really strange that the

42:11

ministry of health who originally tried to

42:13

as do that have some kind of

42:15

dropped the bulls as it off the

42:17

has been at changes and governments and

42:19

since it's season the whole health system

42:21

reform has thrown things have really it

42:23

all upset and but I think having

42:26

a strategy to ensure that everybody has

42:28

got the same access to care. Is

42:30

absolutely vital. A

42:33

desert as he does look towards wrapping

42:36

up for many people. They.

42:38

Will get coverage. They'll be sick for a

42:40

week or so. They'll get better. And.

42:44

Is there any evidence around? The

42:47

effect on. People's. Immune

42:49

systems. Are. They becoming

42:51

weekend. By cove it. So then you become

42:53

sick of for longer when you get another cold

42:56

or another viruses some kind. Possibly.

42:58

But not only just another virus. So

43:00

we do know that see rates have

43:02

also been. Illnesses are increasing and that's

43:05

been shown internationally. We know that's as

43:07

having of it for example concert pew

43:09

and to be more likely to get

43:12

die pcs that other chronic illnesses. So

43:14

I think the importance of em that

43:16

of preventing cove. It's needs to continue

43:19

to be emphasized and other questions pots

43:21

and from player says is the research

43:23

yet on the gut microbiome of those

43:25

with long Cove? It's. A

43:28

consists from the any point of view

43:30

as well as could be a very

43:32

good friend one I think there's a

43:34

size I know there's nothing happening in

43:36

Osceola. It's honestly that without that there

43:38

is and I think that's really exciting

43:40

fix that potentially could lead to either

43:42

treatments or as treatments of symptoms which

43:45

could improve people policy of nice dineen.

43:47

A final word from you on all.

43:49

Of this am clearly there needs to

43:51

be. From your perspective and

43:53

all of government response. I

43:58

suppose. I. Would you? How would you run? How

44:00

would you say that we need to

44:03

be taking this on and tackling long COVID in

44:05

Alta Rua? We've

44:08

issued an invitation to the

44:10

Ministry to meet with our long COVID

44:12

collective that it won't cost them anything.

44:14

There are no consulting fees involved in

44:16

that, that we're willing to do this

44:18

to come together to ensure that they're

44:20

right across the ecosystem that we've been

44:22

developing mostly in our own time

44:24

of our own back because that's what we think is the

44:26

right thing to do. And I really hope that they pick

44:28

that up and take that in because

44:31

we really want to be able to collaborate. My fear right

44:33

the second is of course is we stop

44:36

having access to testing which is obviously what's

44:38

happening and people are going to struggle even

44:40

more to get diagnosed and it's going to

44:42

become even harder. But what I

44:44

really actually want to leave on is a positive note

44:46

because I know what we'll have right now is a

44:49

lot of people listening at home and the data really

44:51

clearly shows us that the vast majority of people

44:53

with long COVID don't know they actually have it.

44:55

So I will offer that

44:57

on our website that we have a quiz there

44:59

that you might be able to take possibly point

45:01

to see whether this could be something you have

45:03

and you can go and speak to your GP

45:05

about it. So I think that's quite a useful

45:07

resource. But for those who are aware that they

45:09

have long COVID it probably feels a lot like

45:12

it's a doomsday situation and of course for all

45:14

the reasons that that is true for them and

45:16

I would never want to invalidate that.

45:18

But what I do want to give them is some

45:20

hope and that there is in the background a lot

45:22

of people who care very deeply and are working very hard

45:24

on this.