Transcriber: Martin Hassel
I'll never forget that situation in the examination room.
We were led by and elderly professor,
and we, meaning ten young, aspiring medical students,
very insecure, but doing everything we can to hide it.
And we are gathering around a hospital bed,
and in the bed, an old lady.
And the professor, without a smile or a question,
commands the lady to take her bra off
so we can examine her breasts,
the breasts of a cancer patient.
On her face, pure despair.
I guess she has been naked for very few [times] in her long life,
and now she, in front of ten people she has never seen before,
is undressing, vulnerable,
and surrounded by a white wall she can not escape.
And the only thing I can see is this little woman
wearing an all too large hospital shirt.
Her curly, silver grey hair oddly pressed from her pillow.
Her horror,
her shame,
her downcast eyes.
I'm confused.
I alternate between the feeling of deep empathy for this woman,
and also being ashamed of being part of this situation.
And my despair is because I think I cannot do anything
to stop this scene from happening.
So, we finished examining her,
and we speedily flocked out of the room, and me last.
My lips are frozen shut, and my voice is gone.
Today,
as a trained medical doctor,
I know a thing or two about human behaviour and needs.
For instance, I know that most people,
like you and myself as well,
we need to belong.
Actually, in our core, we are all pack members,
and in the herd, we feel safe, and secure, and confident.
But -
if you do something
that contradicts what the herd and the crowd says, or does, or thinks,
you might stand out as different,
and you might also attract negative attention.
And, being a person facing overwhelming odds,
that is not a favourable situation to be in.
In new situations, we are often very vulnerable,
and as and instinct,
we avoid these situations and we try to hide,
and we feel uncomfortable,
until we are back in control again.
I was in control for years.
Like most of you, I was healthy,
and then I got sick,
not the "I got the flu, how is yours?" kind of sick,
but utterly, beat-down sick.
And what I found
was a remarkably huge population
of invisible patients
with invisible illnesses.
And I was shocked to see how little effort had been made
to find answers to these invisible diseases.
And also, I was horrified to find
how little strong, clinical research had been made on my disease.
And then - then, I got lucky.
Really, really lucky.
By chance, by coincidence,
I was able to try a new medical treatment,
an experimental treatment,
and that made me sound and healthy again.
And, of course,
the scientists who conducted that trial, they wanted to scale it up,
and that is a normal procedure in medical research
and is a very important one as well.
And when scientists need funding,
they apply to the official Norwegian Research Council, for funding.
And so, they did.
And thousands and millions of sufferers around the world held their breath,
hoping for answers and a medication that could help them.
But the Research Council rejected the application.
They concluded that, 'Yes, it was a strong and good study,
but, no, we cannot prioritise it'.
For me, it was, We will not priortise this patient group.
And from my insights,
both as a medical doctor and also as a recovered patient,
I knew it was important that this first study was replicated.
So, I thought,
'This is very important for me, both personally and professionally.
How can I find solutions?
Maybe I can secure the 7 million Norwegian kroner myself?'
I knew if I did that, if I tried that,
I would provoke a lot of people,
especially my fellow medical officers.
But -
it was impossible for me to close my eyes,
and it was impossible for me
to not look back and help my fellow sufferers
because I knew that they were too ill to fight for themselves.
So, I just had to act and be their voice.
So -
the same day as the rejections from the Research Council,
I published on my blog,
'Well, I'm going to secure this 7 million Norwegian kroner',
which, at that time, was 1.2 million US dollars,
'and that I will secure the trial'.
Whoops...
That's a lot of money, and I'd just spelled it out publicly.
Great, what a genius!
And I thought, 'Well, can I hide somewhere?
Grandma, is your cottage available for the next ten years?'
And then it came...
the fear...
the fear of failure,
the fear of being laughed at,
fear of being rejected,
And so,
I did my usual fear check,
and that goes like this,
'Maria, can you die from this?
Will it kill you?'
And, of course, the answer was no. Okay, Maria, let's go!
So, I just planned.
I spent about three months planning,
and doing the strategy and communications plan.
I made a website because I wanted to crowdfund a clinical trial.
I called the campaign 'MEandYOU', and the internet was the channel.
And I set a goal:
7 millions Norwegian kroner,
1.2 million US dollars
in 90 days,
to secure 140 patients.
And I just started walking, and I was hoping someone would follow.
And the word spread fast.
I realised in a very short time I had to respond in English,
and during the 90 days,
'MEandYou' was supported by thousands of ambassadors and followers
from 49 different countries.
I was no longer walking alone.
We were a crowd and we were making a movement.
We made science sexy.
(Chuckling)
88 days, nearly 3 million.
A lot of money, but not enough.
But then, on day 89,
six months after the rejection from the Research Counsel,
they publicly announced,
'Yes, we are going to fund the rest of the costs.
This trial is going to happen'.
And, yes, we won! And, yes, we made it!
(Applause)
Thank you.
Today, this study is conducted in four different hospitals,
and 152 patients are participating.
The patient group that I am talking about are the patients with the illness 'ME',
called myalgic encephalopathy.
In some countries, it's called CFS, chronic fatigue syndrome.
and it is a neurological disease.
In 2015,
the well-renowned Institute of Medicine published a report,
and they concluded
that about or between 0.2 and 0.4 percent of the population
are stricken with this disease.
That means between 800 thousand to 2.5 million sufferers
only in the United States of America.
And also, they concluded that, yes,
the doctors might have heard of the disease,
but they lack knowledge.
And you think it can't happen to you?
Well, it can.
It strikes all sexes, in all ages,
from all socio-economical classes.
Actually, we are all patients.
If you live long enough,
you will need help from the healthcare system too.
And having an illness or being ill does not mean
that you are a weak person or a weak human being.
It only means that you have a condition
that you remedy as best as you can.
And talking about science,
studies in psychological field show us
that it only takes one person changing their behaviour, and others will follow,
and that means it only takes one person to start something positive
and change to a slightly new direction.
But also, being that first person,
changing your behaviour will make you feel uncomfortable.
I have been uncomfortable many times.
Actually, I purposefully put myself in those situations,
so I can learn to over come them.
And, I'm very uncomfortable right now.
(Laughter)
The scientists will not know before 2018
if my experience with the medicine and the recovery with the medicine
are due to the medicine or not.
What if we are wrong?
But what if we are right?
Do you remember the incident I told you about earlier,
with the professor and the old lady when I was a younger student? Yes?
I felt nauseous merely thinking of protesting in that situation.
Fresh students don't, right?
My legs were shaking and my voice trembled,
but I called out for the professor.
And he is half a meter taller than me,
and also surrounded by white coats, of course -
And I tell him how I experienced this situation,
and I also tell him how I think it was wrong.
And, I suggested another way of doing it next time.
And he nods and he says, 'Yes, we can try that'.
And everybody in the room just felt relieved.
Dear all,
we are living in a time of change.
We listen and we learn,
and when we get new insight, we just have to share it.
But not only share it, we have to act upon it.
Maybe we can change the wrongs to the rights.
And also, definitely,
we change the systems that no longer serve us.
When we find ourselves in a position
where we are better off than those around us,
we must look back and make the road better for those who follow.
If you find yourself in those situations,
you might also be the one who moves society
to make it better, and stronger, and safer.
It won't kill you,
and it is important and it is so remarkably rewarding.
So, don't be afraid to get a new habit,
dare to be uncomfortable,
and do the right thing, in the right way, and for the right reasons.
Change the spaces you are in.
Be an ordinary hero.
Thank you.
(Applause)