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Hi.

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Thank you.

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So, five years ago, this is me.

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I was a Ph.D student at Harvard,

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and I loved to travel.

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I had just gotten engaged to marry
the love of my life.

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I was 28, and like so many of us
when we are in good health,

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I felt like I was invincible.

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Then one day I had
a fever of 104.7 degrees.

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I probably should have gone to the doctor,

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but I'd never really been sick in my life,

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and I knew that usually,
if you have a virus,

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you stay home and you make
some chicken soup,

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and in a few days,
everything will be fine.

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But this time it wasn't fine.

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After the fever broke,
for three weeks I was so dizzy

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I couldn't leave my house.

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I would walk straight into door frames.

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I had to hug the walls
just to make it to the bathroom.

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That spring I got infection
after infection,

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and every time I went to the doctor,

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he said there was absolutely
nothing wrong.

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He had his laboratory tests,

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which always came back normal.

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All I had were my symptoms,

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which I could describe,

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but no one else can see.

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I know it sounds silly,

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but you have to find a way
to explain things like this to yourself,

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and so I thought maybe I was just aging.

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Maybe this is what it's like
to be on the other side of 25.

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(Laughter)

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Then the neurological symptoms started.

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Sometimes I would find that I couldn't
draw the right side of a circle.

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Other times I wouldn't be able
to speak or move at all.

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I saw every kind of specialist:

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infectious disease doctors,
dermatologists, endocrinologists,

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cardiologists.

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I even saw a psychiatrist.

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My psychiatrist said,
it's clear you're really sick,

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but not with anything psychiatric.

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I hope they can find out
what's wrong with you.

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The next day, my neurologist
diagnosed with me conversion disorder.

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He told me that everything,

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the fevers, the sore throats,
the sinus infection,

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all of the gastrointestinal,
neurological, and cardiac symptoms,

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were being caused by some distant
emotional trauma

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that I could not remember.

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The symptoms were real, he said,

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but they had no biological cause.

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I was training to be a social scientist.

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I had studied statistics,
probability theory,

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mathematical modeling,
experimental design.

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I felt like I couldn't just reject
my neurologist's diagnosis.

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It didn't feel true,

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but I knew from my training
that the truth is often counterintuitive,

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so easily obscured
by what we want to believe.

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And so I had to consider the possibility
that he was right.

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That day, I ran a small experiment.

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I walked back the two miles
from my neurologist's office to my house,

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my legs wrapped in this strange,
almost electric kind of pain.

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I meditated on that pain,

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contemplating how my mind
could have possibly generated all this.

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As soon as I walked through the door,

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I collapsed.

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My brain and my spinal cord were burning.

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My neck was so stiff
I couldn't touch my chin to my chest,

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and the slightest sound,

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the rustling of the sheets,

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my husband walking barefoot
in the next room,

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could cause excruciating pain.

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I would spend most of
the next two years in bed.

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How could my doctor

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have gotten it so wrong?

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I thought I had a rare disease,

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something doctors had never seen.

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And then I went online

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and found thousands of people
all over the world

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living with the same symptoms,

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similarly isolated,

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similarly disbelieved.

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Some could still work, but had to spend
their evenings and weekends in bed

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just so they could show up
the next Monday.

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On the other end of the spectrum,

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some were so sick

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they had to live in complete darkness,

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unable to tolerate
the sound of a human voice

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or the touch of a loved one.

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I was diagnosed with
myalgic encephalomyelitis.

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You've probably heard it called
"chronic fatigue syndrome."

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For decades, that's a name

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that meant that this

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has been the dominant image

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of a disease

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that can be as serious as this.

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The key symptom we all share
is that whenever we exert ourselves

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physically, mentally,

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we pay and we pay hard.

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If my husband goes for a run,
he might be sore for a couple of days.

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If I try to walk half a block,
I might be bedridden for a week.

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It is a perfect custom prison.

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I know ballet dancers who can't dance,

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accountants who can't add,

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medical students who never became doctors.

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It doesn't matter what you once were.

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You can't do it anymore.

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It's been four years,

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and I've still never been as well as I was

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the minute before I walked home
from my neurologist's office.

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It's estimated that about 15
to 30 million people around the world

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have this disease.

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In the US, where I'm from,
it's about one million people.

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That makes it roughly twice as common
as multiple sclerosis.

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Patients can live for decades
with the physical function

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of someone with congestive heart failure.

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Twenty-five percent of us
are homebound or bedridden,

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and 75 to 85 percent of us
can't even work part time.

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Yet doctors do not treat us,

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and science does not study us.

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How could a disease this common
and this devastating

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have been forgotten by medicine?

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When my doctor diagnosed me
with conversion disorder,

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he was invoking a lineage
of ideas about women's bodies

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that are over 2,500 years old.

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The Roman physician Galen thought
that hysteria was caused

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by sexual deprivation in particularly
passionate women.

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The Greeks thought that the uterus
would literally dry up

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and wander around the body
in search of moisture,

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pressing on internal organs --

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Yes --

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causing symptoms from extreme emotions

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to dizziness and paralysis.

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The cure was marriage and motherhood.

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These ideas went largely unchanged
for several millennia until the 1880s,

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when neurologists tried to modernize
the theory of hysteria.

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Sigmund Freud developed a theory
that the unconscious mind

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could produce physical symptoms

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when dealing with memories or emotions

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to painful for the conscious
mind to handle.

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It converted these emotions
into physical symptoms.

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This meant that men
could now get hysteria,

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but of course women were still
the most susceptible.

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When I began investigating
the history of my own disease,

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I was amazed to find how deep
these ideas still run.

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In 1934, 198 doctors, nurses, and staff

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at the Los Angeles County
General Hospital became seriously ill.

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They had muscle weakness,
stiffness in the neck and back,

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fevers, all of the same symptoms
I had when I first got diagnosed.

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Doctors thought that it was
a new form of polio.

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Since then, there have been more than
70 outbreaks documented around the world

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of a strikingly similar
post-infectious disease.

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All of these outbreaks have tended
to disproportionately affect women,

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and in time, when doctors failed to find
the one cause of the disease,

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they thought that these outbreaks
were mass hysteria.

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Why has this idea had such staying power?

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I do think it has to do with sexism,

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but I also think that fundamentally,
doctors want to help.

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They want to know the answer,

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and this category allows doctors to treat
what would otherwise be untreatable,

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to explain illnesses
that have no explanation.

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The problem is that this
can cause real harm.

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In the 1950s, a psychiatrist
named Eliot Slater

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studied a cohort of 85 patients
who had been diagnosed with hysteria.

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Nine years later, 12 of them were dead
and 30 had become disabled.

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Many had undiagnosed conditions
like multiple sclerosis,

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epilepsy, brain tumors.

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In 1980, hysteria was officially
renamed conversion disorder.

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When my neurologist gave me
that diagnosis in 2012,

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he was echoing Freud's words verbatim,

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and even today, women are two to 10 times
more likely to receive that diagnosis.

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The problem with the theory of hysteria

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or psychogenic illness

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is that it can never be proven.

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It is by definition
the absence of evidence,

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and in the case of ME,

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psychological explanations have held back
biological research.

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All around the world, ME is one of
the least funded diseases.

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So in the US, we spend each year
roughly 2,500 dollars per AIDS patient,

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250 dollars per MS patient,

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and just 5 dollars per year
per ME patient.

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This was not just lightning.

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I was not just unlucky.

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The ignorance surrounding my disease
has been a choice,

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a choice made by the institutions

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that were supposed to protect us.

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We don't know why ME
sometimes runs in families,

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why you can get it after almost
any infection

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from enteroviruses
to epsienvirovirus to Q fever,

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or why it affects women at two
to three times the rate of men.

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This issue is much bigger
than just my disease.

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When I first got sick,
old friends were reaching out to me,

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and I soon found myself a part
of a cohort of women in their late 20s

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whose bodies were falling apart.

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What was striking was just how
much trouble we were having

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being taken seriously.

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I learned of one woman with scleroderoma,

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an autoimmune connected tissue disease,

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who was told for years
that it was all in her head.

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Between the time of onset and diagnosis,

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her esophagus was so thoroughly damaged

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she'll never be able to eat again.

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Another woman with ovarian cancer,

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who for years was told
that it was just early menopause.

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A friend from college

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whose brain tumor was misdiagnosed
for years as anxiety.

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Here's why this worries me.

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Since the 1950s, rates of
many autoimmune diseases

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have doubled to tripled.

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45 percent of patients who are
eventually diagnosed

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with a recognized autoimmune disease
are initially told

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that they are hypochondriacs.

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Like the hysteria of old,
this is everything to do with gender

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and with whose stories we believe.

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75 percent of autoimmune disease
patients are women,

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and in some diseases, it's as high
as 90 percent.

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Even though these diseases
disproportionately affect women,

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they are not women's diseases.

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ME affects children and ME
affects millions of men,

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and as one patient told me,

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we get it coming and going.

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If you're a woman, you're told
that you're exaggerating your symptoms,

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but if you're a guy, you're told
to be strong, to buck up,

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and men may even have
more difficult time getting diagnosed.

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My brain is not what it used to be.

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Here's the good part.

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Despite everything, I still have hope.

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So many diseases were once thought of
as psychological until science

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uncovered their biological mechanisms.

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Patients with epilepsy could be
forcibly institutionalized

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until the EEG was able to measure
abnormal electrical activity in the brain.

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Multiple sclerosis could be
misdiagnosed as hysterical paralysis

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until the CAT Scan and the MRI
discovered brain lesions.

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And recently we used to think
that stomach ulcers were just

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caused by stress,

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until we discovered that h.pilori
was the culprit.

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ME has never benefited
from the kind of science

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that other diseases had,

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but that's starting to change.

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In Germany, scientists are starting
to find evidence of autoimmunity

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and in Japan of brain inflammation.

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In the US, scientists at Stanford
are finding abnormalities

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in energy metabolism

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that are 16 standard deviations
away from normal.

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And in Norway, researchers
are running a phase three clinical trial

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on a cancer drug that in some patients
causes complete remission.

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There are no approved drugs
to treat my disease,

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but I have benefited
a tremendous amount from AIDS research.

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I found a specialist who prescribed to me
an antiviral drug,

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and within 48 hours, I went from
crawling to the bathroom

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to walking 500 steps a day.

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I still had to make ridiculous choices.

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Will I sit in the garden for 15 minutes
or will I wash my hair today?

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But it gave me hope
that I could be treated.

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I had a sick body. That was all.

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And with the right kind of help,
maybe one day I could get better.

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What also gives me hope

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is the resilience of patients.

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Online we came together

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and we shared our stories.

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We devoured what research there was.

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We experimented on ourselves.

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I've tried everything
from pharmaceutical drugs

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to herbs, probiotics,

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fecal transplants,

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fasting, meditation,

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mold avoidance, hookworms.

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We became our own scientists
and our own doctors

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because we had to be.

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And slowly I added five percent here,

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five percent there, until eventually,

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on a good day,

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I was able to leave my home.

NOTE Paragraph

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And I came together with patients
around the world,

00:14:49.466 --> 00:14:52.523
and we started to fight.

00:14:52.523 --> 00:14:55.171
We have filled the void

00:14:55.171 --> 00:14:57.501
with something wonderful,

00:14:57.501 --> 00:15:00.401
but it is not enough.

00:15:00.401 --> 00:15:04.565
I still don't know if I will ever
be able to run again,

00:15:04.565 --> 00:15:06.434
or walk at any distance,

00:15:06.434 --> 00:15:10.977
or do any of those kinetic things
that I now only get to do in my dreams.

00:15:10.977 --> 00:15:15.184
But I am so grateful
for how far I have come.

00:15:15.184 --> 00:15:18.937
Progress is slow, and it is up

00:15:18.937 --> 00:15:20.921
and it is down,

00:15:20.921 --> 00:15:25.640
but I am getting a little better each day.

00:15:25.640 --> 00:15:27.925
I remember what it was like

00:15:27.925 --> 00:15:30.175
when I was stuck in that bedroom,

00:15:30.175 --> 00:15:34.536
when it had been months
since I had seen the sun.

00:15:34.536 --> 00:15:38.629
I thought that I would die there.

00:15:38.629 --> 00:15:40.882
But here I am today

00:15:40.882 --> 00:15:42.838
with you

00:15:42.838 --> 00:15:47.640
and that is a miracle.

00:15:47.640 --> 00:15:52.228
I don't know what would have happened
had I not been one of the lucky ones,

00:15:52.228 --> 00:15:55.780
had I not had access to off label drugs,

00:15:55.780 --> 00:15:58.525
had I gotten sick before the Internet,

00:15:58.525 --> 00:16:01.140
had I not found my community.

00:16:01.140 --> 00:16:04.131
I probably would have already
taken my own life,

00:16:04.131 --> 00:16:07.272
as so many others have done.

00:16:07.272 --> 00:16:08.278
How many lives could we have saved

00:16:08.278 --> 00:16:10.758
decades ago

00:16:10.758 --> 00:16:13.965
if we had asked the right questions?

00:16:13.965 --> 00:16:16.596
How many lives could we save today

00:16:16.596 --> 00:16:20.655
if we decide to make a real start?

NOTE Paragraph

00:16:20.655 --> 00:16:24.228
Even once the true cause
of my disease is discovered,

00:16:24.228 --> 00:16:27.824
if we don't change our institutions
and our culture,

00:16:27.824 --> 00:16:31.131
we will do this again to another disease.

00:16:31.131 --> 00:16:33.063
Living with this illness has taught me

00:16:33.063 --> 00:16:36.508
that science and medicine
are profoundly human endeavors.

00:16:36.508 --> 00:16:39.122
Doctors, scientists, and policymakers

00:16:39.122 --> 00:16:42.097
are not immune to the same biases

00:16:42.097 --> 00:16:46.323
that affect all of us.

NOTE Paragraph

00:16:46.323 --> 00:16:50.319
We need to think in more nuanced ways
about women's health.

00:16:50.319 --> 00:16:54.496
Our immune systems are just as much
a battleground for equality

00:16:54.496 --> 00:16:56.814
as the rest of our bodies.

00:16:56.814 --> 00:16:59.432
We need to listen to patients' stories,

00:16:59.432 --> 00:17:03.506
and we need to be willing
to say, "I don't know."

00:17:03.506 --> 00:17:06.677
"I don't know" is a beautiful ting.

00:17:06.677 --> 00:17:10.495
"I don't know" is where discovery starts.

00:17:10.495 --> 00:17:12.698
And if we can do that,

00:17:12.698 --> 00:17:16.627
if we can approach the great vastness
of all that we do not know,

00:17:16.627 --> 00:17:18.602
and then rather than fear uncertainty,

00:17:18.602 --> 00:17:21.840
maybe we can greet it
with a sense of wonder.

00:17:21.840 --> 00:17:23.649
Thank you.

00:17:27.689 --> 00:17:30.001
Thank you.