0:00:05.415,0:00:06.858
Hi.

0:00:07.622,0:00:08.959
Thank you.

0:00:08.983,0:00:10.680
[Jennifer Brea is sound-sensitive.

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The live audience was asked[br]to applaud ASL-style, in silence.]

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So, five years ago, this was me.

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I was a PhD student at Harvard,

0:00:19.776,0:00:21.809
and I loved to travel.

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

0:00:27.072,0:00:31.047
I was 28, and like so many of us[br]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[br]a fever of 104.7 degrees.

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I probably should have gone to the doctor,

0:00:40.831,0:00:43.395
but I'd never really been sick in my life,

0:00:43.419,0:00:45.772
and I knew that usually,[br]if you have a virus,

0:00:45.796,0:00:48.929
you stay home and you make[br]some chicken soup,

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and in a few days,[br]everything will be fine.

0:00:52.499,0:00:54.336
But this time it wasn't fine.

0:00:55.560,0:00:57.097
After the fever broke,

0:00:57.121,0:01:00.972
for three weeks I was so dizzy,[br]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[br]just to make it to the bathroom.

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That spring I got infection[br]after infection,

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and every time I went to the doctor,

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he said there was absolutely[br]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[br]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[br]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[br]draw the right side of a circle.

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

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I saw every kind of specialist:

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infectious disease doctors,[br]dermatologists, endocrinologists,

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cardiologists.

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I even saw a psychiatrist.

0:02:07.679,0:02:10.923
My psychiatrist said,[br]"It's clear you're really sick,

0:02:10.947,0:02:13.103
but not with anything psychiatric.

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I hope they can find out[br]what's wrong with you."

0:02:18.094,0:02:22.160
The next day, my neurologist[br]diagnosed with me conversion disorder.

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He told me that everything --

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the fevers, the sore throats,[br]the sinus infection,

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all of the gastrointestinal,[br]neurological and cardiac symptoms --

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were being caused[br]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,[br]probability theory,

0:02:50.416,0:02:52.990
mathematical modeling,[br]experimental design.

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

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It didn't feel true,

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

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so easily obscured[br]by what we want to believe.

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So I had to consider the possibility[br]that he was right.

0:03:13.603,0:03:16.118
That day, I ran a small experiment.

0:03:16.919,0:03:20.332
I walked back the two miles[br]from my neurologist's office to my house,

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

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I meditated on that pain,

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contemplating how my mind[br]could have possibly generated all this.

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As soon as I walked through the door,

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I collapsed.

0:03:36.837,0:03:39.619
My brain and my spinal cord were burning.

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My neck was so stiff[br]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[br]in the next room --

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could cause excruciating pain.

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

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How could my doctor[br]have gotten it so wrong?

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I thought I had a rare disease,

0:04:05.144,0:04:07.133
something doctors had never seen.

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And then I went online

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and found thousands of people[br]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,

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but had to spend their evenings[br]and weekends in bed,

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just so they could show up[br]the next Monday.

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On the other end of the spectrum,

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some were so sick

0:04:28.230,0:04:30.536
they had to live in complete darkness,

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unable to tolerate[br]the sound of a human voice

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or the touch of a loved one.

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I was diagnosed[br]with myalgic encephalomyelitis.

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

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For decades, that's a name

0:04:48.933,0:04:50.538
that's meant that this

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has been the dominant image

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of a disease that can be[br]as serious as this.

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The key symptom we all share

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is that whenever we exert ourselves --[br]physically, mentally --

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we pay and we pay hard.

0:05:05.807,0:05:09.301
If my husband goes for a run,[br]he might be sore for a couple of days.

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If I try to walk half a block,[br]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,

0:05:19.033,0:05:21.206
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;

0:05:27.056,0:05:28.846
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[br]from my neurologist's office.

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

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have this disease.

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

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That makes it roughly twice as common[br]as multiple sclerosis.

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Patients can live for decades[br]with the physical function

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of someone with congestive heart failure.

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Twenty-five percent of us[br]are homebound or bedridden,

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and 75 to 85 percent of us[br]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[br]and this devastating

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have been forgotten by medicine?

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When my doctor diagnosed me[br]with conversion disorder,

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he was invoking a lineage[br]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

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that hysteria was caused[br]by sexual deprivation

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in particularly passionate women.

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The Greeks thought the uterus[br]would literally dry up

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and wander around the body[br]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[br]for several millennia until the 1880s,

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when neurologists tried to modernize[br]the theory of hysteria.

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Sigmund Freud developed a theory

0:07:05.441,0:07:08.237
that the unconscious mind[br]could produce physical symptoms

0:07:08.261,0:07:10.276
when dealing with memories or emotions

0:07:10.300,0:07:12.611
too painful for the conscious[br]mind to handle.

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It converted these emotions[br]into physical symptoms.

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This meant that men[br]could now get hysteria,

0:07:19.680,0:07:22.178
but of course women were still[br]the most susceptible.

0:07:23.448,0:07:27.065
When I began investigating[br]the history of my own disease,

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

0:07:31.011,0:07:32.197
In 1934,

0:07:32.221,0:07:36.996
198 doctors, nurses and staff[br]at the Los Angeles County General Hospital

0:07:37.020,0:07:38.561
became seriously ill.

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They had muscle weakness, stiffness[br]in the neck and back, fevers --

0:07:43.020,0:07:46.374
all of the same symptoms[br]I had when I first got diagnosed.

0:07:46.928,0:07:49.247
Doctors thought[br]it was a new form of polio.

0:07:50.133,0:07:53.064
Since then, there have been more[br]than 70 outbreaks documented

0:07:53.088,0:07:54.249
around the world,

0:07:54.273,0:07:56.711
of a strikingly similar[br]post-infectious disease.

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All of these outbreaks have tended[br]to disproportionately affect women,

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

0:08:05.433,0:08:08.572
they thought that these outbreaks[br]were mass hysteria.

0:08:09.115,0:08:12.020
Why has this idea had such staying power?

0:08:13.567,0:08:15.363
I do think it has to do with sexism,

0:08:15.387,0:08:18.828
but I also think that fundamentally,[br]doctors want to help.

0:08:18.852,0:08:20.622
They want to know the answer,

0:08:20.646,0:08:25.537
and this category allows doctors to treat[br]what would otherwise be untreatable,

0:08:25.561,0:08:28.366
to explain illnesses[br]that have no explanation.

0:08:29.079,0:08:31.771
The problem is that this[br]can cause real harm.

0:08:32.382,0:08:35.978
In the 1950s, a psychiatrist[br]named Eliot Slater

0:08:36.002,0:08:40.186
studied a cohort of 85 patients[br]who had been diagnosed with hysteria.

0:08:40.766,0:08:44.763
Nine years later, 12 of them were dead[br]and 30 had become disabled.

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Many had undiagnosed conditions[br]like multiple sclerosis,

0:08:48.244,0:08:50.140
epilepsy, brain tumors.

0:08:51.259,0:08:54.984
In 1980, hysteria was officially[br]renamed "conversion disorder."

0:08:55.563,0:08:58.887
When my neurologist gave me[br]that diagnosis in 2012,

0:08:58.911,0:09:01.528
he was echoing Freud's words verbatim,

0:09:01.552,0:09:02.703
and even today,

0:09:02.727,0:09:07.101
women are 2 to 10 times more likely[br]to receive that diagnosis.

0:09:08.487,0:09:12.486
The problem with the theory of hysteria[br]or psychogenic illness

0:09:12.510,0:09:14.544
is that it can never be proven.

0:09:14.568,0:09:17.423
It is by definition[br]the absence of evidence,

0:09:18.192,0:09:19.567
and in the case of ME,

0:09:19.591,0:09:23.596
psychological explanations[br]have held back biological research.

0:09:23.620,0:09:26.919
All around the world, ME is one[br]of the least funded diseases.

0:09:27.321,0:09:34.263
In the US, we spend each year[br]roughly 2,500 dollars per AIDS patient,

0:09:34.809,0:09:37.529
250 dollars per MS patient

0:09:38.100,0:09:41.307
and just 5 dollars per year[br]per ME patient.

0:09:42.125,0:09:44.206
This was not just lightning.

0:09:44.230,0:09:45.994
I was not just unlucky.

0:09:46.494,0:09:49.585
The ignorance surrounding my disease[br]has been a choice,

0:09:49.609,0:09:53.733
a choice made by the institutions[br]that were supposed to protect us.

0:09:55.535,0:09:58.406
We don't know why ME[br]sometimes runs in families,

0:09:58.430,0:10:00.895
why you can get it[br]after almost any infection,

0:10:00.919,0:10:04.652
from enteroviruses[br]to Epstein-Barr virus to Q fever,

0:10:05.123,0:10:08.363
or why it affects women[br]at two to three times the rate of men.

0:10:09.058,0:10:11.777
This issue is much bigger[br]than just my disease.

0:10:12.356,0:10:13.539
When I first got sick,

0:10:13.563,0:10:15.721
old friends were reaching out to me.

0:10:16.180,0:10:19.309
I soon found myself a part[br]of a cohort of women in their late 20s

0:10:19.333,0:10:21.019
whose bodies were falling apart.

0:10:22.012,0:10:24.867
What was striking was just how[br]much trouble we were having

0:10:24.891,0:10:26.049
being taken seriously.

0:10:26.577,0:10:28.535
I learned of one woman with scleroderma,

0:10:28.559,0:10:30.659
an autoimmune connective tissue disease,

0:10:30.683,0:10:33.393
who was told for years[br]that it was all in her head.

0:10:33.417,0:10:35.929
Between the time of onset and diagnosis,

0:10:35.953,0:10:38.380
her esophagus was so thoroughly damaged,

0:10:38.404,0:10:40.649
she will never be able to eat again.

0:10:40.673,0:10:42.855
Another woman with ovarian cancer,

0:10:43.376,0:10:46.124
who for years was told[br]that it was just early menopause.

0:10:47.188,0:10:48.756
A friend from college,

0:10:48.780,0:10:52.675
whose brain tumor was misdiagnosed[br]for years as anxiety.

0:10:54.222,0:10:55.832
Here's why this worries me:

0:10:57.125,0:11:00.576
since the 1950s, rates of many[br]autoimmune diseases

0:11:00.600,0:11:02.303
have doubled to tripled.

0:11:02.818,0:11:05.758
Forty-five percent of patients[br]who are eventually diagnosed

0:11:05.782,0:11:07.776
with a recognized autoimmune disease

0:11:07.800,0:11:10.308
are initially told they're hypochondriacs.

0:11:10.783,0:11:13.933
Like the hysteria of old,[br]this has everything to do with gender

0:11:13.957,0:11:15.823
and with whose stories we believe.

0:11:16.974,0:11:20.625
Seventy-five percent[br]of autoimmune disease patients are women,

0:11:20.649,0:11:23.828
and in some diseases,[br]it's as high as 90 percent.

0:11:25.076,0:11:27.933
Even though these diseases[br]disproportionately affect women,

0:11:27.957,0:11:29.609
they are not women's diseases.

0:11:29.633,0:11:33.321
ME affects children[br]and ME affects millions of men.

0:11:33.345,0:11:35.130
And as one patient told me,

0:11:35.154,0:11:36.662
we get it coming and going --

0:11:36.686,0:11:40.294
if you're a woman, you're told[br]you're exaggerating your symptoms,

0:11:40.318,0:11:43.776
but if you're a guy, you're told[br]to be strong, to buck up.

0:11:44.676,0:11:48.825
And men may even have[br]a more difficult time getting diagnosed.

0:11:57.419,0:12:00.284
My brain is not what it used to be.

0:12:13.914,0:12:15.241
Here's the good part:

0:12:16.645,0:12:18.824
despite everything, I still have hope.

0:12:19.903,0:12:23.803
So many diseases were once[br]thought of as psychological

0:12:23.827,0:12:26.735
until science uncovered[br]their biological mechanisms.

0:12:27.323,0:12:30.417
Patients with epilepsy[br]could be forcibly institutionalized

0:12:30.441,0:12:35.045
until the EEG was able to measure[br]abnormal electrical activity in the brain.

0:12:35.500,0:12:39.776
Multiple sclerosis could be misdiagnosed[br]as hysterical paralysis

0:12:39.800,0:12:43.112
until the CAT scan and the MRI[br]discovered brain lesions.

0:12:43.945,0:12:45.460
And recently, we used to think

0:12:45.484,0:12:48.304
that stomach ulcers[br]were just caused by stress,

0:12:48.328,0:12:51.648
until we discovered[br]that H. pylori was the culprit.

0:12:52.801,0:12:55.695
ME has never benefited[br]from the kind of science

0:12:55.719,0:12:58.029
that other diseases have had,

0:12:58.053,0:12:59.717
but that's starting to change.

0:13:00.661,0:13:04.202
In Germany, scientists are starting[br]to find evidence of autoimmunity,

0:13:04.226,0:13:06.568
and in Japan, of brain inflammation.

0:13:07.406,0:13:10.460
In the US, scientists at Stanford[br]are finding abnormalities

0:13:10.484,0:13:12.380
in energy metabolism

0:13:12.404,0:13:15.866
that are 16 standard deviations[br]away from normal.

0:13:16.640,0:13:20.685
And in Norway, researchers[br]are running a phase-3 clinical trial

0:13:20.709,0:13:24.376
on a cancer drug that in some patients[br]causes complete remission.

0:13:25.798,0:13:27.459
What also gives me hope

0:13:28.316,0:13:30.333
is the resilience of patients.

0:13:31.968,0:13:33.842
Online we came together,

0:13:34.251,0:13:35.930
and we shared our stories.

0:13:37.449,0:13:40.223
We devoured what research there was.

0:13:40.743,0:13:42.820
We experimented on ourselves.

0:13:43.496,0:13:45.869
We became our own scientists[br]and our own doctors

0:13:45.893,0:13:47.484
because we had to be.

0:13:48.378,0:13:52.117
And slowly I added five percent here,[br]five percent there,

0:13:52.141,0:13:54.374
until eventually, on a good day,

0:13:54.398,0:13:56.304
I was able to leave my home.

0:13:57.815,0:14:00.402
I still had to make ridiculous choices:

0:14:00.568,0:14:04.409
Will I sit in the garden for 15 minutes,[br]or will I wash my hair today?

0:14:04.924,0:14:07.352
But it gave me hope[br]that I could be treated.

0:14:07.693,0:14:10.035
I had a sick body; that was all.

0:14:10.789,0:14:14.820
And with the right kind of help,[br]maybe one day I could get better.

0:14:15.740,0:14:18.943
I came together with patients[br]around the world,

0:14:19.466,0:14:21.220
and we started to fight.

0:14:21.863,0:14:25.034
We have filled the void[br]with something wonderful,

0:14:25.698,0:14:27.190
but it is not enough.

0:14:28.662,0:14:32.699
I still don't know if I will ever[br]be able to run again,

0:14:32.723,0:14:34.620
or walk at any distance,

0:14:34.644,0:14:38.553
or do any of those kinetic things[br]that I now only get to do in my dreams.

0:14:39.143,0:14:42.233
But I am so grateful[br]for how far I have come.

0:14:43.955,0:14:45.440
Progress is slow,

0:14:45.464,0:14:46.756
and it is up

0:14:47.310,0:14:48.566
and it is down,

0:14:49.222,0:14:52.135
but I am getting a little better each day.

0:14:54.013,0:14:57.932
I remember what it was like[br]when I was stuck in that bedroom,

0:14:58.548,0:15:01.496
when it had been months[br]since I had seen the sun.

0:15:03.226,0:15:05.314
I thought that I would die there.

0:15:06.961,0:15:08.528
But here I am today,

0:15:09.255,0:15:10.537
with you,

0:15:11.513,0:15:13.574
and that is a miracle.

0:15:16.606,0:15:20.225
I don't know what would have happened[br]had I not been one of the lucky ones,

0:15:20.377,0:15:22.554
had I gotten sick before the internet,

0:15:22.995,0:15:24.969
had I not found my community.

0:15:25.777,0:15:28.505
I probably would have already[br]taken my own life,

0:15:29.028,0:15:30.935
as so many others have done.

0:15:32.094,0:15:35.318
How many lives could[br]we have saved, decades ago,

0:15:35.957,0:15:37.860
if we had asked the right questions?

0:15:38.626,0:15:40.775
How many lives could we save today

0:15:41.592,0:15:43.754
if we decide to make a real start?

0:15:45.205,0:15:48.248
Even once the true cause[br]of my disease is discovered,

0:15:48.881,0:15:52.356
if we don't change[br]our institutions and our culture,

0:15:52.380,0:15:54.756
we will do this again to another disease.

0:15:55.658,0:15:57.652
Living with this illness has taught me

0:15:57.676,0:16:00.604
that science and medicine[br]are profoundly human endeavors.

0:16:01.153,0:16:03.744
Doctors, scientists and policy makers

0:16:03.768,0:16:06.655
are not immune to the same biases

0:16:07.568,0:16:09.147
that affect all of us.

0:16:11.377,0:16:14.429
We need to think in more nuanced ways[br]about women's health.

0:16:15.119,0:16:19.221
Our immune systems are just as much[br]a battleground for equality

0:16:19.245,0:16:20.827
as the rest of our bodies.

0:16:21.253,0:16:23.597
We need to listen to patients' stories,

0:16:24.542,0:16:27.107
and we need to be willing[br]to say, "I don't know."

0:16:28.024,0:16:30.376
"I don't know" is a beautiful thing.

0:16:31.235,0:16:33.827
"I don't know" is where discovery starts.

0:16:35.365,0:16:36.787
And if we can do that,

0:16:37.447,0:16:41.142
if we can approach the great vastness[br]of all that we do not know,

0:16:41.166,0:16:43.118
and then, rather than fear uncertainty,

0:16:43.142,0:16:45.653
maybe we can greet it[br]with a sense of wonder.

0:16:46.342,0:16:47.693
Thank you.

0:16:52.096,0:16:53.336
Thank you.