Hi.
Thank you.
So, five years ago, this is me.
I was a Ph.D student at Harvard,
and I loved to travel.
I had just gotten engaged to marry the love of my life.
I was 28, and like so many of us when we are in good health,
I felt like I was invincible.
Then one day I had a fever of 104.7 degrees.
I probably should have gone to the doctor,
but I'd never really been sick in my life,
and I knew that usually, if you have a virus,
you stay home and you make some chicken soup,
and in a few days, everything will be fine.
But this time it wasn't fine.
After the fever broke, for three weeks I was so dizzy
I couldn't leave my house.
I would walk straight into door frames.
I had to hug the walls just to make it to the bathroom.
That spring I got infection after infection,
and every time I went to the doctor,
he said there was absolutely nothing wrong.
He had his laboratory tests,
which always came back normal.
All I had were my symptoms,
which I could describe,
but no one else can see.
I know it sounds silly,
but you have to find a way to explain things like this to yourself,
and so I thought maybe I was just aging.
Maybe this is what it's like to be on the other side of 25.
(Laughter)
Then the neurological symptoms started.
Sometimes I would find that I couldn't draw the right side of a circle.
Other times I wouldn't be able to speak or move at all.
I saw every kind of specialist:
infectious disease doctors, dermatologists, endocrinologists,
cardiologists.
I even saw a psychiatrist.
My psychiatrist said, it's clear you're really sick,
but not with anything psychiatric.
I hope they can find out what's wrong with you.
The next day, my neurologist diagnosed with me conversion disorder.
He told me that everything,
the fevers, the sore throats, the sinus infection,
all of the gastrointestinal, neurological, and cardiac symptoms,
were being caused by some distant emotional trauma
that I could not remember.
The symptoms were real, he said,
but they had no biological cause.
I was training to be a social scientist.
I had studied statistics, probability theory,
mathematical modeling, experimental design.
I felt like I couldn't just reject my neurologist's diagnosis.
It didn't feel true,
but I knew from my training that the truth is often counterintuitive,
so easily obscured by what we want to believe.
And so I had to consider the possibility that he was right.
That day, I ran a small experiment.
I walked back the two miles from my neurologist's office to my house,
my legs wrapped in this strange, almost electric kind of pain.
I meditated on that pain,
contemplating how my mind could have possibly generated all this.
As soon as I walked through the door,
I collapsed.
My brain and my spinal cord were burning.
My neck was so stiff I couldn't touch my chin to my chest,
and the slightest sound,
the rustling of the sheets,
my husband walking barefoot in the next room,
could cause excruciating pain.
I would spend most of the next two years in bed.
How could my doctor
have gotten it so wrong?
I thought I had a rare disease,
something doctors had never seen.
And then I went online
and found thousands of people all over the world
living with the same symptoms,
similarly isolated,
similarly disbelieved.
Some could still work, but had to spend their evenings and weekends in bed
just so they could show up the next Monday.
On the other end of the spectrum,
some were so sick
they had to live in complete darkness,
unable to tolerate the sound of a human voice
or the touch of a loved one.
I was diagnosed with myalgic encephalomyelitis.
You've probably heard it called "chronic fatigue syndrome."
For decades, that's a name
that meant that this
has been the dominant image
of a disease
that can be as serious as this.
The key symptom we all share is that whenever we exert ourselves
physically, mentally,
we pay and we pay hard.
If my husband goes for a run, he might be sore for a couple of days.
If I try to walk half a block, I might be bedridden for a week.
It is a perfect custom prison.
I know ballet dancers who can't dance,
accountants who can't add,
medical students who never became doctors.
It doesn't matter what you once were.
You can't do it anymore.
It's been four years,
and I've still never been as well as I was
the minute before I walked home from my neurologist's office.
It's estimated that about 15 to 30 million people around the world
have this disease.
In the US, where I'm from, it's about one million people.
That makes it roughly twice as common as multiple sclerosis.
Patients can live for decades with the physical function
of someone with congestive heart failure.
Twenty-five percent of us are homebound or bedridden,
and 75 to 85 percent of us can't even work part time.
Yet doctors do not treat us,
and science does not study us.
How could a disease this common and this devastating
have been forgotten by medicine?
When my doctor diagnosed me with conversion disorder,
he was invoking a lineage of ideas about women's bodies
that are over 2,500 years old.
The Roman physician Galen thought that hysteria was caused
by sexual deprivation in particularly passionate women.
The Greeks thought that the uterus would literally dry up
and wander around the body in search of moisture,
pressing on internal organs --
Yes --
causing symptoms from extreme emotions
to dizziness and paralysis.
The cure was marriage and motherhood.
These ideas went largely unchanged for several millennia until the 1880s,
when neurologists tried to modernize the theory of hysteria.
Sigmund Freud developed a theory that the unconscious mind
could produce physical symptoms
when dealing with memories or emotions
to painful for the conscious mind to handle.
It converted these emotions into physical symptoms.
This meant that men could now get hysteria,
but of course women were still the most susceptible.
When I began investigating the history of my own disease,
I was amazed to find how deep these ideas still run.
In 1934, 198 doctors, nurses, and staff
at the Los Angeles County General Hospital became seriously ill.
They had muscle weakness, stiffness in the neck and back,
fevers, all of the same symptoms I had when I first got diagnosed.
Doctors thought that it was a new form of polio.
Since then, there have been more than 70 outbreaks documented around the world
of a strikingly similar post-infectious disease.
All of these outbreaks have tended to disproportionately affect women,
and in time, when doctors failed to find the one cause of the disease,
they thought that these outbreaks were mass hysteria.
Why has this idea had such staying power?
I do think it has to do with sexism,
but I also think that fundamentally, doctors want to help.
They want to know the answer,
and this category allows doctors to treat what would otherwise be untreatable,
to explain illnesses that have no explanation.
The problem is that this can cause real harm.
In the 1950s, a psychiatrist named Eliot Slater
studied a cohort of 85 patients who had been diagnosed with hysteria.
Nine years later, 12 of them were dead and 30 had become disabled.
Many had undiagnosed conditions like multiple sclerosis,
epilepsy, brain tumors.
In 1980, hysteria was officially renamed conversion disorder.
When my neurologist gave me that diagnosis in 2012,
he was echoing Freud's words verbatim,
and even today, women are two to 10 times more likely to receive that diagnosis.
The problem with the theory of hysteria
or psychogenic illness
is that it can never be proven.
It is by definition the absence of evidence,
and in the case of ME,
psychological explanations have held back biological research.
All around the world, ME is one of the least funded diseases.
So in the US, we spend each year roughly 2,500 dollars per AIDS patient,
250 dollars per MS patient,
and just 5 dollars per year per ME patient.
This was not just lightning.
I was not just unlucky.
The ignorance surrounding my disease has been a choice,
a choice made by the institutions
that were supposed to protect us.
We don't know why ME sometimes runs in families,
why you can get it after almost any infection
from enteroviruses to epsienvirovirus to Q fever,
or why it affects women at two to three times the rate of men.
This issue is much bigger than just my disease.
When I first got sick, old friends were reaching out to me,
and I soon found myself a part of a cohort of women in their late 20s
whose bodies were falling apart.
What was striking was just how much trouble we were having
being taken seriously.
I learned of one woman with scleroderoma,
an autoimmune connected tissue disease,
who was told for years that it was all in her head.
Between the time of onset and diagnosis,
her esophagus was so thoroughly damaged
she'll never be able to eat again.
Another woman with ovarian cancer,
who for years was told that it was just early menopause.
A friend from college
whose brain tumor was misdiagnosed for years as anxiety.
Here's why this worries me.
Since the 1950s, rates of many autoimmune diseases
have doubled to tripled.
45 percent of patients who are eventually diagnosed
with a recognized autoimmune disease are initially told
that they are hypochondriacs.
Like the hysteria of old, this is everything to do with gender
and with whose stories we believe.
75 percent of autoimmune disease patients are women,
and in some diseases, it's as high as 90 percent.
Even though these diseases disproportionately affect women,
they are not women's diseases.
ME affects children and ME affects millions of men,
and as one patient told me,
we get it coming and going.
If you're a woman, you're told that you're exaggerating your symptoms,
but if you're a guy, you're told to be strong, to buck up,
and men may even have more difficult time getting diagnosed.
My brain is not what it used to be.
Here's the good part.
Despite everything, I still have hope.
So many diseases were once thought of as psychological until science
uncovered their biological mechanisms.
Patients with epilepsy could be forcibly institutionalized
until the EEG was able to measure abnormal electrical activity in the brain.
Multiple sclerosis could be misdiagnosed as hysterical paralysis
until the CAT Scan and the MRI discovered brain lesions.
And recently we used to think that stomach ulcers were just
caused by stress,
until we discovered that h.pilori was the culprit.
ME has never benefited from the kind of science
that other diseases had,
but that's starting to change.
In Germany, scientists are starting to find evidence of autoimmunity
and in Japan of brain inflammation.
In the US, scientists at Stanford are finding abnormalities
in energy metabolism
that are 16 standard deviations away from normal.
And in Norway, researchers are running a phase three clinical trial
on a cancer drug that in some patients causes complete remission.
There are no approved drugs to treat my disease,
but I have benefited a tremendous amount from AIDS research.
I found a specialist who prescribed to me an antiviral drug,
and within 48 hours, I went from crawling to the bathroom
to walking 500 steps a day.
I still had to make ridiculous choices.
Will I sit in the garden for 15 minutes or will I wash my hair today?
But it gave me hope that I could be treated.
I had a sick body. That was all.
And with the right kind of help, maybe one day I could get better.
What also gives me hope
is the resilience of patients.
Online we came together
and we shared our stories.
We devoured what research there was.
We experimented on ourselves.
I've tried everything from pharmaceutical drugs
to herbs, probiotics,
fecal transplants,
fasting, meditation,
mold avoidance, hookworms.
We became our own scientists and our own doctors
because we had to be.
And slowly I added five percent here,
five percent there, until eventually,
on a good day,
I was able to leave my home.
And I came together with patients around the world,
and we started to fight.
We have filled the void
with something wonderful,
but it is not enough.
I still don't know if I will ever be able to run again,
or walk at any distance,
or do any of those kinetic things that I now only get to do in my dreams.
But I am so grateful for how far I have come.
Progress is slow, and it is up
and it is down,
but I am getting a little better each day.
I remember what it was like
when I was stuck in that bedroom,
when it had been months since I had seen the sun.
I thought that I would die there.
But here I am today
with you
and that is a miracle.
I don't know what would have happened had I not been one of the lucky ones,
had I not had access to off label drugs,
had I gotten sick before the Internet,
had I not found my community.
I probably would have already taken my own life,
as so many others have done.
How many lives could we have saved
decades ago
if we had asked the right questions?
How many lives could we save today
if we decide to make a real start?
Even once the true cause of my disease is discovered,
if we don't change our institutions and our culture,
we will do this again to another disease.
Living with this illness has taught me
that science and medicine are profoundly human endeavors.
Doctors, scientists, and policymakers
are not immune to the same biases
that affect all of us.
We need to think in more nuanced ways about women's health.
Our immune systems are just as much a battleground for equality
as the rest of our bodies.
We need to listen to patients' stories,
and we need to be willing to say, "I don't know."
"I don't know" is a beautiful ting.
"I don't know" is where discovery starts.
And if we can do that,
if we can approach the great vastness of all that we do not know,
and then rather than fear uncertainty,
maybe we can greet it with a sense of wonder.
Thank you.