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Hello, everyone.

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And this is Maya again, Trials with Maya Z.

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And I'm with another episode of our mini series about the importance of standard of care.

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I'm here today with Robert Joyce, who I recently met.

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He was recommended to me by another patient advocate friend.

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Robert was just starting to

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Tell me about his his background his story about the way he's fighting multiple chronic
diseases And I stopped him and I said Robert let's record that because people like you and

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your stories are definitely inspiring So Robert now you can continue with your story Tell
me more about yourself and what led you to to become a patient advocate and not only

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So if I begin again, I've got several chronic illnesses.

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So I've got secondary progressive multiple sclerosis.

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I've had it for more than 30 years now.

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Obviously it started with relapsing remitting MS.

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I've also got asthma, sarcoidosis, and I also live with chronic pain.

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And I actually celebrated my 10th year anniversary of chronic pain there a couple of days
ago.

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Congratulations.

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It's good to celebrate these things.

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actually, I like your perspective because what's the other choice?

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Like, you don't have any other choice.

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And when I say, when we started the conversation, I said, when you said you have multiple
chronic diseases, I said, I'm sorry, but actually you're right.

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mean, it is what it is.

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You have to fight.

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It's your life.

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It's your thing.

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So congratulations, Robert.

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Well, you know, the thing is, if you dwell and you focus on the negativity, then your life
is negative.

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So if you switch that around and focus on the positive, your life has more color and it is
a little bit more exciting and you can utilize that maybe negativity in a positive sense.

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And in fact, that's maybe

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when I describe my story a little bit, why I am where I am now.

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Because in 2017, I started a blog called 30 Minute Life, where I was sharing my experience
of transitioning from being in the world of work to not working anymore.

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And it's a painful transition and it's tough to go through.

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But in one sense, it was liberating because once I actually accepted my disability and
once I accepted the new rules of my illness, suddenly I could redefine my life and change

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it in a way that was perhaps a little bit more positive.

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And so as a result of that, I became more involved with the MS Society.

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I was writing blog posts and I heard about a...

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a a feasibility study for a new therapy to aid people with MS with cognitive problems,
which is actually very common for people with MS.

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More than 50 % have some kind of cognitive issues.

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And I was employed as an assistant researcher on that study, that feasibility study.

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And because of my experience living with MS and my understanding of the disease,

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they were using me to be the voice of people with MS within the study so that anything
that was done was looked through the lens of the patient and how it would impact us.

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And so for example, one of the issues that we had was there was a booklet that we had for
the study that we would be presenting to the participants when they were being taught this

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new therapy.

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I remember the researchers when they showed it to me and they were so delighted.

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It was beautifully produced, know, full color, really nice production.

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But I said to them, but that's not suitable for people with multiple sclerosis.

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And they just, what do you mean?

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It's just a booklet.

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And I said, but the problem is it doesn't lie flat on the table.

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And

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Multiple sclerosis, like I've got sensory difficulties with my hands.

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Everything feels funny.

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I from a tactile point of view.

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It's very, very difficult.

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But also people with MS have muscle weakness and they also have tremor.

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And so if you can imagine coming in to be taught something and the materials that you are
using are not suitable for your illness, how are you going to really trust what that

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therapist is telling

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because from the very beginning they've made a mistake.

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And so...

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saying with this booklet, they don't understand me.

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They're different.

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But they, and this is what I always say, they have not lived with my hands.

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My hands are the hands of somebody with MS.

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And I think this was actually a transformative point in the study where they suddenly
realized the benefit that having somebody with lived experience in the study can actually

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transform how it's done.

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And as a result, I was involved in writing the patient information leaflets

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training the occupational therapists on how to teach the therapy.

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I was involved with producing the materials, the videos, the newsletter that we had.

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I did the post -intervention interviews, many, many things.

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And I was actually responsible for recruiting over 50 % of the participants in the study
because of the network that I had within the MS community.

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but also how I could share my story in the media to help attract people to come into the
study.

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So I changed my title, or it was changed for me in a way, from being an assistant
researcher to an embedded patient researcher.

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And I think that is really critical in actually developing studies into the future.

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And as a result of that, we completed that study.

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then because of the success of it, we are now going to do a definitive clinical trial on
the therapy.

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And I was a co -applicant in that application for the grant aid on it.

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And I actually wrote sections of the application.

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So very much the patient is involved in this next step.

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Now we do have an issue because

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I can't really work in the traditional sense and I'm on a social welfare payment in
Ireland and because of that disability payment that I'm on, I'm actually not allowed to do

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any work, paid or voluntary, right?

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So we're trying to see if we can get those rules changed and that's the problem actually
throughout Europe and in fact throughout the world in effect.

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And that needs to be changed.

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Yeah, absolutely.

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And by the way, a new friend of mine, he is actually now trying to change an act in United
States.

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I didn't know about that because I'm based out of Europe.

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I've lived just a little bit in States, but like never been in this situation.

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I didn't know that in the United States, if you're on welfare,

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Again, like you said, you're not allowed to get like, you're basically lose your welfare
if you start getting any money.

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And then clinical trial reimbursement for clinical trials is actually taxated as a
basically income.

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And that's ridiculous because I think two thirds of Americans are somehow impacted.

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One third and one third, I'll mislead you in the numbers, but I remember a huge portion.

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And I was wondering,

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what is it like in Europe but now you're saying that it's the same in Ireland.

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Do you know anything about other countries by the

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it is.

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It's pretty much the same.

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Anybody that I have spoken to throughout Europe and from the different regions that I've
spoken to, it is an issue.

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The biggest thing is it's a revelation to researchers because they never realized that
this was a problem.

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And that is because we've been excluded.

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We have been excluded by the government.

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We're not allowed to engage.

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So in fact, our voices have been silenced.

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And as a result of that, then the diversity that we would have in the development of
clinical trials is impacted because we don't have the whole voice of the patient

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community.

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We only have the voice of people who have independent financial means that can actually
afford to share their voice.

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So I actually think that this is a big obstacle.

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And it could be the reason why so many trials are not as effective because they cannot
recruit

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from a certain cohort of people because they don't have any connection into it.

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And there could be a perception from the people of that cohort that is not allowed that
they're not wanted or that the research community does not want to hear from them, but

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also because their government is saying, we don't want you to share your voice, which is
actually working at cross purposes to what's safe the Department of Health.

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might want.

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They want those voices, another section of the government is preventing it.

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So I think it's a fundamental

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Yeah, speaking about cohorts in another episode of Trials with Maya Z I discussed with
another patient advocate that different patients have different unmet needs, different

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needs in general.

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Here I'm not speaking about the patients on the welfare, but actually patients on the
welfare in Ireland and patients on the welfare in the UK and patients on the welfare in

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Germany and so on and so forth basically.

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what is actually the difference between, is there actually a difference between patients
like in different countries?

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Where does difference comes from Robert, from your

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Yeah, see it

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disease, at the of the day it's the same disease, so you must be going for the same thing,
but is it really the case?

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It's fundamentally different, I think, from country to country.

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take, for example, my multiple sclerosis.

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In Ireland, we have a shortage of neurologists.

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We only have a quarter of the number of neurologists that we actually need to have to
serve as our population.

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You go to Spain and they have sufficient neurologists.

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And that actually has an impact on patient care.

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If you have somebody who is so

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rushed with so many people, they don't have the time to spend with the patient, they don't
have the time to actually do those cross department chats.

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the neurologist would have to speak to an occupational therapist, to a urologist, to
somebody, ophthalmologist, all the different specialties.

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Do they have the time to have those discussions with the other disciplines so that you can
actually

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give a better standard of care.

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And for an example with me, I have chronic pain and they were going to treat that with
morphine, okay?

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But because of the lack of communication between my pain specialist and my neurologist, I
was about to be put on that morphine.

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By the luck of the draw, I got to speak with my neurologist as luck would have it.

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And he said, that would be the worst thing for me to

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for the type of pain that I have, right?

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And also to do with my multiple sclerosis.

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So because they don't have those links between the different departments, because of lack
of time, right?

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And then, so then the standard of care that I would be getting in Ireland is going to be
substandard in comparison to another country that may have sufficient, okay?

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But you also have lots of cultural issues as well, whether the way

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illnesses presenting.

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So multiple sclerosis by and large tends to be an invisible illness.

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It's very hard to see.

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You can't see that I can't feel things properly with my hands.

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I have pins and needles all the time.

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You just can't see it.

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So how can you perceive it?

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And in some countries, culturally, they would say, well, if we can't see it doesn't exist.

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Right.

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You know, you could be pretending it could be a doubt if you have a very paternalistic
health care system.

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Whereas if you have one that's a bit more holistic.

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They will say, just because I don't see it and I can't feel it doesn't mean it doesn't
exist.

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And so you do have those differences between different countries and also even language,
the way we speak, the way we look at the world, how we perceive the future, for example,

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if there's no future tense in our language or it is not as developed as in other
languages, it's all about the here and now rather than about the future.

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So I actually think there are a lot

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cultural and systemic differences between countries that can be obstacles to real patient
engagement and real inclusion within clinical trials.

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That's a big challenge.

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You know, it's not easy to

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What about access to treatment?

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Is it very different in Ireland versus like I'm comparing Ireland because you're based out
of Ireland, but I know that you are working in this field for quite some time.

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So have you been comparing what is the access to treatment in your country versus other
countries?

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For example, because there are like constantly new research going out and like new
treatments, especially for MS.

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It's one of the areas that's been researched quite a lot

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So do you feel that it's similar everywhere or there are huge discrepancies, the huge
differences, I'm sorry.

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I think the difference is not necessarily to do with the country, but it's to do with the
specialist.

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So for example, there's an associate of mine or a colleague of mine, Dominic Shadbolt who
has a blog called or a thing on YouTube called the MS Guide.

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And he actually interviews specialists as part of what he does.

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So neurologists.

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And if you have a progressive neurologist, they may say,

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we've diagnosed you with multiple sclerosis, we're going to hit it hard and fast, right?

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We're going to give you the best medicine and we're going to give it to you now so that we
can actually prevent maybe future disability by treating you earlier in the system.

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But you might have another neurologist, I have experienced here in Ireland, much more
conservative.

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We'll try the easy ones first, the more gentle ones.

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And then if we feel that things are getting worse, we will ramp up what we give you.

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That is based on the individual specialist rather than on a national context.

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But you also have, so I've experienced that and I know that it is more focused on the
individual who's giving you that care rather than on the nation.

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Because I think by and large in Europe, we have access to the same medicines.

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By and large, we can...

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countries can pay for them, like we are wealthy countries by and large, so that is not as
big as an obstacle as it would be in a poorer country.

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So I think that's where we have a huge advantage.

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But you still have that mindset change that you have to do with the people who are giving
the clinical care.

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And how do you bring those clinicians to

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cohesively and work with the same standard within a country.

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And there you're actually trying to change the personality types of individuals.

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And how are you going to do that?

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Unless you create a definitive standard of care and that this is the way it has to be
applied.

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But then it's almost like an AI thing.

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It's a computerized system where you say, this is, we found this, boom, boom, boom.

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This is the way you do it.

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There's no scope for individual difference.

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As a matter of fact, the reimbursement rules are kind of playing this role because in many
countries, in most countries, the rich countries, let's say, you actually don't have any

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explanations what a certain treatment is reimbursed for.

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Basically, you have the indication, but not necessarily at exactly what stage of the
disease progression you can prescribe that.

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And then it's up to the clinician to decide, OK, now I think that this will be better.

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versus another one, but in many countries that have a limited budget when it comes to like
healthcare, their healthcare, and that's actually you will be surprised, but it's actually

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happening in a lot of even European countries.

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They will be very definitive, like descriptive at what stage of a certain disease
progression, a certain treatment will be reimbursed.

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And for example, more the modern treatments and the more expensive treatments.

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especially biological treatments, they will be always put for, let's say, when the disease
has much more progress.

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Or maybe it's not about the disease progression sometimes, it's about, okay, do we have
other options?

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Let's exhaust them first, corticosteroids first, and then biologic, even though biological
drug may be much better than the corticosteroids.

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Even if the clinician wants, by the way, even if the clinician thinks,

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Okay, I want to go for the second option, but no, by the reimbursement rules, you have to
first try with this first line treatment, so to say, and then go to the second one.

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So that kind of serves like this way, but I also understand where you're coming from.

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Robert, tell me, have you been ever in a situation where you have to choose between the
available treatment options in your country and a clinical trial?

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No, I haven't.

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Okay, so I have not been involved in any clinical trial.

208
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Well, I've been involved in trials over the years I was actually involved in one trial
when I was first diagnosed which was the use of Contrasting agents in MRI and for

209
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diagnostic purposes.

210
00:19:05,393 --> 00:19:10,913
So that was 30 odd years ago And so that was my first involvement in the clinical trial.

211
00:19:10,913 --> 00:19:15,645
I've been more and involved in

212
00:19:15,645 --> 00:19:21,608
the researcher side of the clinical trial process rather than as a participant.

213
00:19:21,608 --> 00:19:29,251
And that is probably a function of the fact that in Ireland, we don't have that many
clinical trials on medicines going on.

214
00:19:29,251 --> 00:19:34,753
We're trying to improve that situation in the country.

215
00:19:34,753 --> 00:19:40,015
But it is difficult to do because of the way our health system has been set up.

216
00:19:40,015 --> 00:19:44,111
But the Department of Health and the Health Service Executive, which

217
00:19:44,111 --> 00:19:51,869
governs the health system here in Ireland are putting together a system for better
clinical trials within the country.

218
00:19:51,869 --> 00:20:00,858
And in fact, I was part of the research governance committee that was helping to design
how those trials would be done in the country.

219
00:20:00,858 --> 00:20:08,377
So I'm more active, maybe more on the policy side or on

220
00:20:08,377 --> 00:20:18,140
researcher side than actually as a participant because there isn't actually that much
opportunity and also because of the stage I am in my illness.

221
00:20:18,140 --> 00:20:23,781
At the moment where I am part of that cohort that they don't.

222
00:20:23,781 --> 00:20:33,144
I'm older, I'm secondary progressive, it's not as important as those who are just newly
diagnosed.

223
00:20:33,144 --> 00:20:35,845
What difference would a clinical trial have on my life?

224
00:20:35,845 --> 00:20:37,035
Well, not

225
00:20:37,035 --> 00:20:42,347
huge amount, but it would help those who are following after me.

226
00:20:42,908 --> 00:20:55,906
Whereas the trials at the beginning of your illness life, they are much more fundamental
because they can actually change the trajectory of your disease.

227
00:20:55,906 --> 00:21:08,927
Yeah, but Robert, like, correct me if I'm wrong, but when you're at the very beginning of
your, let's say illness progression, you also have way more options that are like already

228
00:21:08,927 --> 00:21:10,678
established, let's put it that way.

229
00:21:10,678 --> 00:21:16,563
So how do you choose between an established option, an established treatment in a clinical
trial?

230
00:21:16,563 --> 00:21:21,867
And have you been in such conversations with maybe friends or people within your
community?

231
00:21:21,867 --> 00:21:29,374
How do they choose between standard of care and clinical trial?

232
00:21:29,374 --> 00:21:33,757
That's a real individual issue and it is really challenging.

233
00:21:33,757 --> 00:21:41,802
And I know myself in a way, I was for example on one therapy for my multiple sclerosis
beta interferon, okay?

234
00:21:41,802 --> 00:21:48,426
And that was having impacts on me side effects wise.

235
00:21:48,426 --> 00:21:52,488
Whether it helped my MS, it's marginal.

236
00:21:52,488 --> 00:21:54,061
I don't know.

237
00:21:54,061 --> 00:21:59,925
So I started this other medicine called naltrexone, but I was taking low doses of it.

238
00:21:59,925 --> 00:22:04,489
That was not clinically trialed and it was actually an off -label prescription.

239
00:22:04,489 --> 00:22:15,877
And in many ways, that is the journey that a patient will go through to decide whether
they're going to try a new therapy or not, because they're going from the known to the

240
00:22:15,877 --> 00:22:16,638
unknown.

241
00:22:16,638 --> 00:22:19,860
And how do you take that risk?

242
00:22:19,860 --> 00:22:22,041
Do you stop?

243
00:22:22,041 --> 00:22:31,724
what you're currently doing with a known progression, let's say, and stepping into the
void, wondering whether this new medication will actually benefit you, but it could

244
00:22:31,724 --> 00:22:33,214
actually cause you damage.

245
00:22:33,214 --> 00:22:36,125
It could actually make your illness worse.

246
00:22:36,125 --> 00:22:45,087
And so for example, when I was on that beta interferon, I got sarcoidosis during that time
period, which is another autoimmune illness.

247
00:22:45,087 --> 00:22:45,968
are they linked?

248
00:22:45,968 --> 00:22:46,418
Maybe.

249
00:22:46,418 --> 00:22:51,361
It could have been a possibility that I got that as a result of being on that therapy.

250
00:22:51,361 --> 00:22:51,972
I don't know.

251
00:22:51,972 --> 00:23:01,390
And it's just like now, like you were saying earlier about the different medications that
are available.

252
00:23:01,390 --> 00:23:12,100
I had used all the medications that were there for spasticity, which is one of the
symptoms of MS where the muscles just aren't doing what you want them to do.

253
00:23:12,100 --> 00:23:18,673
And the side effects of those medications were too much for me and they didn't actually
give me any benefit.

254
00:23:18,673 --> 00:23:25,046
So then I tried cannabis when I was on a holiday in California and I found it
transformational.

255
00:23:25,046 --> 00:23:28,337
It actually just changed the way my illness was.

256
00:23:28,337 --> 00:23:33,900
Came back to Ireland and I had to go through the challenge of trying to get this through
the health system in Ireland.

257
00:23:33,900 --> 00:23:34,669
I did get it.

258
00:23:34,669 --> 00:23:39,862
It cost me a ferocious amount of money at the time, but it was worth it.

259
00:23:39,862 --> 00:23:45,817
Then I had to get a ministerial license to import it from the Netherlands so that I could
get one that

260
00:23:45,817 --> 00:23:49,378
better for me because of the side effects of the first one.

261
00:23:49,378 --> 00:23:52,079
Now I can get it in my local pharmacy.

262
00:23:52,079 --> 00:23:58,061
So, but I, many ways I was actually the trailblazer for that with my neurologist.

263
00:23:58,061 --> 00:24:00,251
He had not given this medication before.

264
00:24:00,251 --> 00:24:00,882
Right.

265
00:24:00,882 --> 00:24:04,042
And so how do you make that decision?

266
00:24:04,042 --> 00:24:13,333
And you have to have, like you were saying earlier, ruled out the other therapies first to
say that they're not effective.

267
00:24:13,333 --> 00:24:17,796
having to go through all the side effects and impacts of those things, right?

268
00:24:17,796 --> 00:24:29,094
And then switching over to something that is, some people are very negative about, you
you've got this negative association with cannabis, that it is the gateway drug and you'll

269
00:24:29,094 --> 00:24:31,165
end up being on cocaine and heroin.

270
00:24:31,165 --> 00:24:33,887
And that's not my experience.

271
00:24:33,887 --> 00:24:37,049
I still take the same dosage I've took for the last four years.

272
00:24:37,049 --> 00:24:39,050
So, you know, it's not getting more.

273
00:24:39,050 --> 00:24:41,552
It's probably getting less depending on the circumstance.

274
00:24:41,552 --> 00:24:43,063
So,

275
00:24:43,063 --> 00:24:47,636
And then if somebody is going into a clinical trial, those are the same decisions, right?

276
00:24:47,636 --> 00:24:51,479
They're still making those same decisions, those same pathways.

277
00:24:51,479 --> 00:25:04,878
The difference is maybe, and I think in the clinical trial, is that if the information
systems that that trial is using for sharing with the participants what this medicine may

278
00:25:04,878 --> 00:25:11,813
do, what they think, how it will help them, if that is very transparent and very

279
00:25:11,813 --> 00:25:22,973
communicated in the language of the patient, it makes it easier to make that decision, but
it's still a decision and it could be the wrong one.

280
00:25:22,973 --> 00:25:26,133
And you have to live with that consequence.

281
00:25:26,133 --> 00:25:33,693
But the same is true when you're talking about which medication to take of the traditional
medicines.

282
00:25:33,693 --> 00:25:38,093
So there's maybe 13 or 14 different medicines for multiple sclerosis now.

283
00:25:38,093 --> 00:25:41,809
Which one do you choose?

284
00:25:41,809 --> 00:25:45,331
it's almost the same decision pathway.

285
00:25:45,331 --> 00:25:50,083
It's just that the clinical trial is maybe a bit more unknown.

286
00:25:50,083 --> 00:25:59,017
But remember to get to that point where you're testing for patients who have the illness,
right?

287
00:25:59,017 --> 00:26:07,915
You've already gone through phase 1 and 2 and you're now in 3 and maybe at stage 4 in the
clinical trial system.

288
00:26:07,915 --> 00:26:09,887
it has been tested a bit more.

289
00:26:09,887 --> 00:26:12,188
there's a little bit more certainty in it.

290
00:26:12,188 --> 00:26:26,640
But I think the patient community, people living with illness are not necessarily aware of
that research pathway and how they are fitting into that pathway.

291
00:26:26,640 --> 00:26:30,943
And I don't think that's really discussed so well with patients.

292
00:26:30,943 --> 00:26:34,425
And in that absence of knowledge,

293
00:26:34,425 --> 00:26:42,492
There's a vacuum that can be filled with all sorts of stuff from social media that can
tell you things that are completely untrue.

294
00:26:42,492 --> 00:26:55,903
And that's where I think communication again, going back to that very important aspect is
how you communicate what you're doing, why the trial is at this stage, why you are, how

295
00:26:55,903 --> 00:26:59,076
that participant, that patient is fitting into the trial at this stage.

296
00:26:59,076 --> 00:27:02,863
And that's where I think having

297
00:27:02,863 --> 00:27:15,374
People from the patient community involved with how a trial is designed and structured
from the very beginning helps to ensure that you don't have that void or vacuum that can

298
00:27:15,374 --> 00:27:17,772
be filled in by bad actors.

299
00:27:17,772 --> 00:27:32,264
Yeah, that's actually bringing us back to my story when I told you about what I am doing
regarding how I was super surprised when I first started working in the clinical research

300
00:27:32,264 --> 00:27:42,912
space to realize that the, let's say, must -have thing when you plan clinical trials is to
go and speak with the key opinion leaders.

301
00:27:42,912 --> 00:27:48,107
And the key opinion leaders are some people that are not even speaking with patients
anymore.

302
00:27:48,107 --> 00:27:50,408
I there are people behind publications.

303
00:27:50,408 --> 00:27:52,080
Obviously, they're brilliant people.

304
00:27:52,080 --> 00:27:54,812
They've done a lot of research.

305
00:27:54,812 --> 00:27:57,534
There are people that the community follows.

306
00:27:57,534 --> 00:27:59,466
But then again, they're not speaking with patients.

307
00:27:59,466 --> 00:28:10,325
So like you said, speaking only with key opinion leaders and sites and maybe like not
enough sites, let's say, because sometimes if you speak with many, with multiple per

308
00:28:10,325 --> 00:28:11,342
country.

309
00:28:11,342 --> 00:28:22,902
You will still get to let's say to the truth somehow But speaking with just a few and just
in one or two countries out of 20 That doesn't actually give you a very good understanding

310
00:28:22,902 --> 00:28:29,002
of what the patients are going through in their own country And that's that's something
that we discussed with you.

311
00:28:29,002 --> 00:28:37,844
It's absolutely critical So bottom line if you have to summarize what is the impact of a
local standard of care?

312
00:28:37,844 --> 00:28:44,049
on making a decision to participate and stay in a clinical trial from your perspective.

313
00:28:44,049 --> 00:28:56,935
I think if you've got a poor standard of care where you are, you are not going to be
involved in a trial because you have an inherent mistrust of the healthcare system.

314
00:28:56,935 --> 00:29:07,420
And it doesn't matter who gets involved with it, it is always going to be coloured by that
negative experience that you've had with the system itself.

315
00:29:07,420 --> 00:29:10,117
So how can somebody this

316
00:29:10,117 --> 00:29:12,969
third party coming into you saying, we've got this wonderful thing.

317
00:29:12,969 --> 00:29:13,859
We want to try it.

318
00:29:13,859 --> 00:29:15,830
You know, it's going to really make a change to your life.

319
00:29:15,830 --> 00:29:18,042
Hopefully if it all goes well.

320
00:29:18,042 --> 00:29:19,802
These guys are telling you a load of nonsense.

321
00:29:19,802 --> 00:29:22,064
How do you know that that's the truth?

322
00:29:22,064 --> 00:29:22,644
Okay.

323
00:29:22,644 --> 00:29:34,471
So that's where every person that you meet with in a healthcare system is pivotal in
ensuring that we have very good research.

324
00:29:34,471 --> 00:29:38,711
If you end up meeting bad nurses or

325
00:29:38,711 --> 00:29:44,185
And I know my experience is, yeah, yeah.

326
00:29:44,185 --> 00:29:52,160
So, you know, this is where everybody is the face of the healthcare system and everybody
has a role in that.

327
00:29:52,160 --> 00:30:03,225
And if they don't see that, then that's going to be a big challenge to getting that
diversity of voices within the participants in your study.

328
00:30:03,225 --> 00:30:08,687
you're just not going to get it because of the clinical experience of the individuals.

329
00:30:08,687 --> 00:30:18,701
So if you don't have that standard of care, if it's not uniform across the network, what
you're going to end up happening is the people who get the best standard of care are those

330
00:30:18,701 --> 00:30:27,115
who are on private health care, who are paying the top dollar for their consultants and
who are going to the private hospitals.

331
00:30:27,115 --> 00:30:32,769
They get the better standard of care because it's a business and they need to attract
customers in.

332
00:30:32,769 --> 00:30:35,931
Whereas in the public system, it's not a business.

333
00:30:35,931 --> 00:30:45,026
It is like taking parcels and we're moving them through the system and it is almost
exhausted with its engagement with the people.

334
00:30:45,026 --> 00:30:47,397
just wants to move them through the system.

335
00:30:47,397 --> 00:30:49,979
And so you have that coldness there.

336
00:30:49,979 --> 00:30:57,483
You can get pockets of light in it and you can get pockets of warmth and you see those as
exceptional.

337
00:30:57,483 --> 00:30:58,443
Right.

338
00:30:58,443 --> 00:31:02,187
But how are you going to get those patients

339
00:31:02,187 --> 00:31:10,861
involved in a clinical trial if their perception of the healthcare system is that they are
treated like an object and not as a human being.

340
00:31:10,861 --> 00:31:13,722
And so they're not going to get involved in the clinical trial.

341
00:31:13,722 --> 00:31:17,303
And so it's going to have a negative impact on diversity.

342
00:31:17,303 --> 00:31:19,965
And that is the problem with healthcare.

343
00:31:19,965 --> 00:31:28,388
If you don't have the clinical trials done on a really representative population, you're
not getting the right medicine.

344
00:31:28,388 --> 00:31:30,670
You're not understanding the impacts.

345
00:31:30,670 --> 00:31:37,305
because the diet of somebody who is on the public system can be different from the person
who's in a private health care system.

346
00:31:37,305 --> 00:31:39,056
They're physical food that they're eating.

347
00:31:39,056 --> 00:31:43,419
And that actually can have an impact on how the medication is delivered.

348
00:31:43,419 --> 00:31:54,206
Or if you have stresses in your life because of your financial situation or the fact that
you're struggling with housing or that, you know, your your community isn't able to

349
00:31:54,206 --> 00:31:54,726
support you.

350
00:31:54,726 --> 00:31:58,521
But if you're from a more advantaged group, right?

351
00:31:58,521 --> 00:32:08,507
you have your housing sorted, you have your income sorted, and you also have a support
network of people because they do have the time and the resources maybe to help you.

352
00:32:08,507 --> 00:32:20,414
So all of those external things actually impact on how somebody can actually trust
somebody who is coming in with a clinical trial.

353
00:32:20,414 --> 00:32:26,239
And so that's where I think it is so important to...

354
00:32:26,239 --> 00:32:37,238
level that playing field, make sure that everybody has the same type of health care, the
same systems, the same processes, the same standard of care is being applied to everybody.

355
00:32:37,238 --> 00:32:41,061
And I think that's where we have the problem.

356
00:32:41,061 --> 00:32:47,466
And we won't get that diversity, but we also won't get the retention either, right,
because of that.

357
00:32:47,466 --> 00:32:50,909
And we it's a struggle.

358
00:32:50,909 --> 00:32:56,301
But if we include all

359
00:32:56,301 --> 00:33:02,046
representatives of all the patient community, right, then I think we will have a much
better result.

360
00:33:02,046 --> 00:33:07,318
And the medicine and the healthcare that we are delivered will be of a higher standard

361
00:33:07,318 --> 00:33:21,209
Yeah, and I just want to add something here Robert to what you said include the patient
society as early as possible because sometimes we do that but like I think in my previous

362
00:33:21,209 --> 00:33:36,211
episode the lady she was saying I've been included in working on the trial design redesign
not design the trial redesign because the company was struggling finding the patients so

363
00:33:36,211 --> 00:33:37,330
they included

364
00:33:37,330 --> 00:33:39,552
like their patient organization to help them.

365
00:33:39,552 --> 00:33:43,374
How can we change that so that it starts recruiting patients?

366
00:33:43,374 --> 00:33:53,681
So it's rather, it's better to work on the design early, as early as possible with
patients and patient communities, rather than work with patient communities, but on the

367
00:33:53,681 --> 00:33:54,682
redesign.

368
00:33:54,682 --> 00:33:58,385
It's better for patients, it's better for the industry.

369
00:33:58,385 --> 00:34:01,887
Robert, thank you so much for this positive conversation.

370
00:34:01,887 --> 00:34:06,770
And honestly, I lately, I've experienced some health issues myself and

371
00:34:06,770 --> 00:34:18,128
Let's say, I've experienced like in the past as well, but lately, let's say for a longer
period of time, I was also not feeling so well, having fatigue and like, I mean, yeah,

372
00:34:18,128 --> 00:34:18,839
different things.

373
00:34:18,839 --> 00:34:31,288
And I was exactly thinking about people like you, because you say things like, you have to
see the things in the better light, the glass half full, not half empty.

374
00:34:31,288 --> 00:34:35,590
But once you experience either pain

375
00:34:35,590 --> 00:34:41,633
fatigue or tiredness, it's so much more difficult to see the glass half full.

376
00:34:41,633 --> 00:34:52,901
So you're the true superheroes to me and I'm very very thankful for your time, for this
inspiration and for your positivity.

377
00:34:52,901 --> 00:34:55,811
Thank you.