TEDSummit
Jennifer Brea: What happens when you have a disease doctors can't diagnose
Filmed:
Readability: 4.1
2,042,782 views
Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.
Jennifer Brea - Filmmaker
Jennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name. Full bio
Jennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name. Full bio
Double-click the English transcript below to play the video.
00:17
Hi.
0
5415
1443
00:19
Thank you.
1
7622
1337
00:20
[Jennifer Brea is sound-sensitive.
2
8983
1697
00:22
The live audience was asked
to applaud ASL-style, in silence.]
to applaud ASL-style, in silence.]
3
10704
3145
00:25
So, five years ago, this was me.
4
13873
3367
00:29
I was a PhD student at Harvard,
5
17747
2005
00:31
and I loved to travel.
6
19776
2033
00:34
I had just gotten engaged
to marry the love of my life.
to marry the love of my life.
7
22472
3180
00:39
I was 28, and like so many of us
when we are in good health,
when we are in good health,
8
27072
3975
00:43
I felt like I was invincible.
9
31071
2031
00:46
Then one day I had
a fever of 104.7 degrees.
a fever of 104.7 degrees.
10
34477
3670
00:50
I probably should have gone to the doctor,
11
38758
2049
00:52
but I'd never really been sick in my life,
12
40831
2564
00:55
and I knew that usually,
if you have a virus,
if you have a virus,
13
43419
2353
00:57
you stay home and you make
some chicken soup,
some chicken soup,
14
45796
3133
01:00
and in a few days,
everything will be fine.
everything will be fine.
15
48953
2313
01:04
But this time it wasn't fine.
16
52499
1837
01:07
After the fever broke,
17
55560
1537
01:09
for three weeks I was so dizzy,
I couldn't leave my house.
I couldn't leave my house.
18
57121
3851
01:13
I would walk straight into door frames.
19
61467
2194
01:16
I had to hug the walls
just to make it to the bathroom.
just to make it to the bathroom.
20
64335
2960
01:20
That spring I got infection
after infection,
after infection,
21
68613
2657
01:23
and every time I went to the doctor,
22
71825
1827
01:25
he said there was absolutely
nothing wrong.
nothing wrong.
23
73676
2783
01:29
He had his laboratory tests,
24
77533
1625
01:31
which always came back normal.
25
79182
1904
01:33
All I had were my symptoms,
26
81875
1967
01:35
which I could describe,
27
83866
1930
01:37
but no one else can see.
28
85820
1692
01:41
I know it sounds silly,
29
89370
1223
01:42
but you have to find a way
to explain things like this to yourself,
to explain things like this to yourself,
30
90617
3268
01:45
and so I thought maybe I was just aging.
31
93909
3624
01:50
Maybe this is what it's like
to be on the other side of 25.
to be on the other side of 25.
32
98114
3553
01:53
(Laughter)
33
101691
2292
01:56
Then the neurological symptoms started.
34
104808
2168
01:59
Sometimes I would find that I couldn't
draw the right side of a circle.
draw the right side of a circle.
35
107590
3711
02:04
Other times I wouldn't be able
to speak or move at all.
to speak or move at all.
36
112325
3306
02:10
I saw every kind of specialist:
37
118330
1734
02:12
infectious disease doctors,
dermatologists, endocrinologists,
dermatologists, endocrinologists,
38
120088
3072
02:15
cardiologists.
39
123184
1283
02:16
I even saw a psychiatrist.
40
124945
1916
02:19
My psychiatrist said,
"It's clear you're really sick,
"It's clear you're really sick,
41
127679
3244
02:22
but not with anything psychiatric.
42
130947
2156
02:26
I hope they can find out
what's wrong with you."
what's wrong with you."
43
134045
2738
02:30
The next day, my neurologist
diagnosed me with conversion disorder.
diagnosed me with conversion disorder.
44
138094
4066
02:34
He told me that everything --
45
142842
1683
02:37
the fevers, the sore throats,
the sinus infection,
the sinus infection,
46
145255
2977
02:40
all of the gastrointestinal,
neurological and cardiac symptoms --
neurological and cardiac symptoms --
47
148916
3330
02:44
were being caused
by some distant emotional trauma
by some distant emotional trauma
48
152715
2718
02:47
that I could not remember.
49
155457
1606
02:50
The symptoms were real, he said,
50
158069
1998
02:52
but they had no biological cause.
51
160546
2359
02:56
I was training to be a social scientist.
52
164527
2609
02:59
I had studied statistics,
probability theory,
probability theory,
53
167160
3232
03:02
mathematical modeling,
experimental design.
experimental design.
54
170416
2574
03:07
I felt like I couldn't just reject
my neurologist's diagnosis.
my neurologist's diagnosis.
55
175058
3993
03:11
It didn't feel true,
56
179599
1592
03:13
but I knew from my training
that the truth is often counterintuitive,
that the truth is often counterintuitive,
57
181215
3470
03:17
so easily obscured
by what we want to believe.
by what we want to believe.
58
185356
2597
03:20
So I had to consider the possibility
that he was right.
that he was right.
59
188514
2932
03:25
That day, I ran a small experiment.
60
193603
2515
03:28
I walked back the two miles
from my neurologist's office to my house,
from my neurologist's office to my house,
61
196919
3413
03:33
my legs wrapped in this strange,
almost electric kind of pain.
almost electric kind of pain.
62
201229
4035
03:38
I meditated on that pain,
63
206475
1603
03:40
contemplating how my mind
could have possibly generated all this.
could have possibly generated all this.
64
208102
4019
03:45
As soon as I walked through the door,
65
213320
1875
03:47
I collapsed.
66
215219
1165
03:48
My brain and my spinal cord were burning.
67
216837
2782
03:52
My neck was so stiff
I couldn't touch my chin to my chest,
I couldn't touch my chin to my chest,
68
220696
3771
03:57
and the slightest sound --
69
225324
1751
03:59
the rustling of the sheets,
70
227099
1835
04:00
my husband walking barefoot
in the next room --
in the next room --
71
228958
2265
04:03
could cause excruciating pain.
72
231737
2134
04:07
I would spend most
of the next two years in bed.
of the next two years in bed.
73
235832
2583
04:11
How could my doctor
have gotten it so wrong?
have gotten it so wrong?
74
239235
2760
04:14
I thought I had a rare disease,
75
242939
2181
04:17
something doctors had never seen.
76
245144
1989
04:19
And then I went online
77
247926
1195
04:21
and found thousands of people
all over the world
all over the world
78
249145
2378
04:23
living with the same symptoms,
79
251980
1620
04:26
similarly isolated,
80
254087
1564
04:27
similarly disbelieved.
81
255675
1457
04:29
Some could still work,
82
257854
1283
04:31
but had to spend their evenings
and weekends in bed,
and weekends in bed,
83
259161
2485
04:33
just so they could show up
the next Monday.
the next Monday.
84
261670
2067
04:36
On the other end of the spectrum,
85
264364
2080
04:38
some were so sick
86
266468
1738
04:40
they had to live in complete darkness,
87
268230
2306
04:42
unable to tolerate
the sound of a human voice
the sound of a human voice
88
270560
3372
04:45
or the touch of a loved one.
89
273956
1909
04:49
I was diagnosed
with myalgic encephalomyelitis.
with myalgic encephalomyelitis.
90
277469
4002
04:54
You've probably heard it called
"chronic fatigue syndrome."
"chronic fatigue syndrome."
91
282554
3452
04:58
For decades, that's a name
92
286987
1922
05:00
that's meant that this
93
288933
1605
05:03
has been the dominant image
94
291578
1383
05:04
of a disease that can be
as serious as this.
as serious as this.
95
292985
3275
05:09
The key symptom we all share
96
297468
1524
05:11
is that whenever we exert ourselves --
physically, mentally --
physically, mentally --
97
299016
3752
05:15
we pay and we pay hard.
98
303296
1953
05:17
If my husband goes for a run,
he might be sore for a couple of days.
he might be sore for a couple of days.
99
305807
3494
05:21
If I try to walk half a block,
I might be bedridden for a week.
I might be bedridden for a week.
100
309325
3399
05:25
It is a perfect custom prison.
101
313323
2255
05:28
I know ballet dancers who can't dance,
102
316261
2748
05:31
accountants who can't add,
103
319033
2173
05:33
medical students who never became doctors.
104
321230
2558
05:36
It doesn't matter what you once were;
105
324421
2168
05:39
you can't do it anymore.
106
327056
1790
05:41
It's been four years,
107
329475
1890
05:43
and I've still never been as well as I was
108
331389
2596
05:46
the minute before I walked home
from my neurologist's office.
from my neurologist's office.
109
334009
3476
05:50
It's estimated that about 15 to 30 million
people around the world
people around the world
110
338683
3195
05:53
have this disease.
111
341902
1254
05:55
In the US, where I'm from,
it's about one million people.
it's about one million people.
112
343604
3263
05:58
That makes it roughly twice as common
as multiple sclerosis.
as multiple sclerosis.
113
346891
3632
06:03
Patients can live for decades
with the physical function
with the physical function
114
351797
2742
06:06
of someone with congestive heart failure.
115
354563
2134
06:09
Twenty-five percent of us
are homebound or bedridden,
are homebound or bedridden,
116
357310
3038
06:12
and 75 to 85 percent of us
can't even work part-time.
can't even work part-time.
117
360927
3701
06:17
Yet doctors do not treat us
118
365385
2004
06:20
and science does not study us.
119
368064
1938
06:23
How could a disease this common
and this devastating
and this devastating
120
371116
3428
06:27
have been forgotten by medicine?
121
375325
1825
06:31
When my doctor diagnosed me
with conversion disorder,
with conversion disorder,
122
379264
2524
06:33
he was invoking a lineage
of ideas about women's bodies
of ideas about women's bodies
123
381812
2688
06:36
that are over 2,500 years old.
124
384524
2150
06:39
The Roman physician Galen thought
125
387215
1733
06:40
that hysteria was caused
by sexual deprivation
by sexual deprivation
126
388972
2971
06:43
in particularly passionate women.
127
391967
2525
06:47
The Greeks thought the uterus
would literally dry up
would literally dry up
128
395125
2764
06:49
and wander around the body
in search of moisture,
in search of moisture,
129
397913
2427
06:52
pressing on internal organs --
130
400364
1896
06:54
yes --
131
402284
1214
06:56
causing symptoms from extreme emotions
132
404648
2695
06:59
to dizziness and paralysis.
133
407367
2245
07:02
The cure was marriage and motherhood.
134
410715
2604
07:06
These ideas went largely unchanged
for several millennia until the 1880s,
for several millennia until the 1880s,
135
414898
4560
07:11
when neurologists tried to modernize
the theory of hysteria.
the theory of hysteria.
136
419482
3698
07:15
Sigmund Freud developed a theory
137
423764
1653
07:17
that the unconscious mind
could produce physical symptoms
could produce physical symptoms
138
425441
2796
07:20
when dealing with memories or emotions
139
428261
2015
07:22
too painful for the conscious
mind to handle.
mind to handle.
140
430300
2311
07:24
It converted these emotions
into physical symptoms.
into physical symptoms.
141
432635
2879
07:29
This meant that men
could now get hysteria,
could now get hysteria,
142
437460
2196
07:31
but of course women were still
the most susceptible.
the most susceptible.
143
439680
2498
07:35
When I began investigating
the history of my own disease,
the history of my own disease,
144
443448
3617
07:39
I was amazed to find how deep
these ideas still run.
these ideas still run.
145
447089
3045
07:43
In 1934,
146
451011
1186
07:44
198 doctors, nurses and staff
at the Los Angeles County General Hospital
at the Los Angeles County General Hospital
147
452221
4775
07:49
became seriously ill.
148
457020
1541
07:50
They had muscle weakness, stiffness
in the neck and back, fevers --
in the neck and back, fevers --
149
458585
4411
07:55
all of the same symptoms
I had when I first got diagnosed.
I had when I first got diagnosed.
150
463020
3354
07:58
Doctors thought
it was a new form of polio.
it was a new form of polio.
151
466928
2319
08:02
Since then, there have been more
than 70 outbreaks documented
than 70 outbreaks documented
152
470133
2931
08:05
around the world,
153
473088
1161
08:06
of a strikingly similar
post-infectious disease.
post-infectious disease.
154
474273
2438
08:09
All of these outbreaks have tended
to disproportionately affect women,
to disproportionately affect women,
155
477419
3493
08:13
and in time, when doctors failed to find
the one cause of the disease,
the one cause of the disease,
156
481482
3927
08:17
they thought that these outbreaks
were mass hysteria.
were mass hysteria.
157
485433
3139
08:21
Why has this idea had such staying power?
158
489115
2905
08:25
I do think it has to do with sexism,
159
493567
1796
08:27
but I also think that fundamentally,
doctors want to help.
doctors want to help.
160
495387
3441
08:30
They want to know the answer,
161
498852
1770
08:32
and this category allows doctors to treat
what would otherwise be untreatable,
what would otherwise be untreatable,
162
500646
4891
08:37
to explain illnesses
that have no explanation.
that have no explanation.
163
505561
2805
08:41
The problem is that this
can cause real harm.
can cause real harm.
164
509079
2692
08:44
In the 1950s, a psychiatrist
named Eliot Slater
named Eliot Slater
165
512382
3596
08:48
studied a cohort of 85 patients
who had been diagnosed with hysteria.
who had been diagnosed with hysteria.
166
516002
4184
08:52
Nine years later, 12 of them were dead
and 30 had become disabled.
and 30 had become disabled.
167
520766
3997
08:56
Many had undiagnosed conditions
like multiple sclerosis,
like multiple sclerosis,
168
524787
3433
09:00
epilepsy, brain tumors.
169
528244
1896
09:03
In 1980, hysteria was officially
renamed "conversion disorder."
renamed "conversion disorder."
170
531259
3725
09:07
When my neurologist gave me
that diagnosis in 2012,
that diagnosis in 2012,
171
535563
3324
09:10
he was echoing Freud's words verbatim,
172
538911
2617
09:13
and even today,
173
541552
1151
09:14
women are 2 to 10 times more likely
to receive that diagnosis.
to receive that diagnosis.
174
542727
4374
09:20
The problem with the theory of hysteria
or psychogenic illness
or psychogenic illness
175
548487
3999
09:24
is that it can never be proven.
176
552510
2034
09:26
It is by definition
the absence of evidence,
the absence of evidence,
177
554568
2855
09:30
and in the case of ME,
178
558192
1375
09:31
psychological explanations
have held back biological research.
have held back biological research.
179
559591
4005
09:35
All around the world, ME is one
of the least funded diseases.
of the least funded diseases.
180
563620
3299
09:39
In the US, we spend each year
roughly 2,500 dollars per AIDS patient,
roughly 2,500 dollars per AIDS patient,
181
567321
6942
09:46
250 dollars per MS patient
182
574809
2720
09:50
and just 5 dollars per year
per ME patient.
per ME patient.
183
578100
3207
09:54
This was not just lightning.
184
582125
2081
09:56
I was not just unlucky.
185
584230
1764
09:58
The ignorance surrounding my disease
has been a choice,
has been a choice,
186
586494
3091
10:01
a choice made by the institutions
that were supposed to protect us.
that were supposed to protect us.
187
589609
4124
10:07
We don't know why ME
sometimes runs in families,
sometimes runs in families,
188
595535
2871
10:10
why you can get it
after almost any infection,
after almost any infection,
189
598430
2465
10:12
from enteroviruses
to Epstein-Barr virus to Q fever,
to Epstein-Barr virus to Q fever,
190
600919
3733
10:17
or why it affects women
at two to three times the rate of men.
at two to three times the rate of men.
191
605123
3240
10:21
This issue is much bigger
than just my disease.
than just my disease.
192
609058
2719
10:24
When I first got sick,
193
612356
1183
10:25
old friends were reaching out to me.
194
613563
2158
10:28
I soon found myself a part
of a cohort of women in their late 20s
of a cohort of women in their late 20s
195
616180
3129
10:31
whose bodies were falling apart.
196
619333
1686
10:34
What was striking was just how
much trouble we were having
much trouble we were having
197
622012
2855
10:36
being taken seriously.
198
624891
1158
10:38
I learned of one woman with scleroderma,
199
626577
1958
10:40
an autoimmune connective tissue disease,
200
628559
2100
10:42
who was told for years
that it was all in her head.
that it was all in her head.
201
630683
2710
10:45
Between the time of onset and diagnosis,
202
633417
2512
10:47
her esophagus was so thoroughly damaged,
203
635953
2427
10:50
she will never be able to eat again.
204
638404
2245
10:52
Another woman with ovarian cancer,
205
640673
2182
10:55
who for years was told
that it was just early menopause.
that it was just early menopause.
206
643376
2748
10:59
A friend from college,
207
647188
1568
11:00
whose brain tumor was misdiagnosed
for years as anxiety.
for years as anxiety.
208
648780
3895
11:06
Here's why this worries me:
209
654222
1610
11:09
since the 1950s, rates of many
autoimmune diseases
autoimmune diseases
210
657125
3451
11:12
have doubled to tripled.
211
660600
1703
11:14
Forty-five percent of patients
who are eventually diagnosed
who are eventually diagnosed
212
662818
2940
11:17
with a recognized autoimmune disease
213
665782
1994
11:19
are initially told they're hypochondriacs.
214
667800
2508
11:22
Like the hysteria of old,
this has everything to do with gender
this has everything to do with gender
215
670783
3150
11:25
and with whose stories we believe.
216
673957
1866
11:28
Seventy-five percent
of autoimmune disease patients are women,
of autoimmune disease patients are women,
217
676974
3651
11:32
and in some diseases,
it's as high as 90 percent.
it's as high as 90 percent.
218
680649
3179
11:37
Even though these diseases
disproportionately affect women,
disproportionately affect women,
219
685076
2857
11:39
they are not women's diseases.
220
687957
1652
11:41
ME affects children
and ME affects millions of men.
and ME affects millions of men.
221
689633
3688
11:45
And as one patient told me,
222
693345
1785
11:47
we get it coming and going --
223
695154
1508
11:48
if you're a woman, you're told
you're exaggerating your symptoms,
you're exaggerating your symptoms,
224
696686
3608
11:52
but if you're a guy, you're told
to be strong, to buck up.
to be strong, to buck up.
225
700318
3458
11:56
And men may even have
a more difficult time getting diagnosed.
a more difficult time getting diagnosed.
226
704676
4149
12:09
My brain is not what it used to be.
227
717419
2865
12:25
Here's the good part:
228
733914
1327
12:28
despite everything, I still have hope.
229
736645
2179
12:31
So many diseases were once
thought of as psychological
thought of as psychological
230
739903
3900
12:35
until science uncovered
their biological mechanisms.
their biological mechanisms.
231
743827
2908
12:39
Patients with epilepsy
could be forcibly institutionalized
could be forcibly institutionalized
232
747323
3094
12:42
until the EEG was able to measure
abnormal electrical activity in the brain.
abnormal electrical activity in the brain.
233
750441
4604
12:47
Multiple sclerosis could be misdiagnosed
as hysterical paralysis
as hysterical paralysis
234
755500
4276
12:51
until the CAT scan and the MRI
discovered brain lesions.
discovered brain lesions.
235
759800
3312
12:55
And recently, we used to think
236
763945
1515
12:57
that stomach ulcers
were just caused by stress,
were just caused by stress,
237
765484
2820
13:00
until we discovered
that H. pylori was the culprit.
that H. pylori was the culprit.
238
768328
3320
13:04
ME has never benefited
from the kind of science
from the kind of science
239
772801
2894
13:07
that other diseases have had,
240
775719
2310
13:10
but that's starting to change.
241
778053
1664
13:12
In Germany, scientists are starting
to find evidence of autoimmunity,
to find evidence of autoimmunity,
242
780661
3541
13:16
and in Japan, of brain inflammation.
243
784226
2342
13:19
In the US, scientists at Stanford
are finding abnormalities
are finding abnormalities
244
787406
3054
13:22
in energy metabolism
245
790484
1896
13:24
that are 16 standard deviations
away from normal.
away from normal.
246
792404
3462
13:28
And in Norway, researchers
are running a phase-3 clinical trial
are running a phase-3 clinical trial
247
796640
4045
13:32
on a cancer drug that in some patients
causes complete remission.
causes complete remission.
248
800709
3667
13:37
What also gives me hope
249
805798
1661
13:40
is the resilience of patients.
250
808316
2017
13:43
Online we came together,
251
811968
1874
13:46
and we shared our stories.
252
814251
1679
13:49
We devoured what research there was.
253
817449
2774
13:52
We experimented on ourselves.
254
820743
2077
13:55
We became our own scientists
and our own doctors
and our own doctors
255
823496
2373
13:57
because we had to be.
256
825893
1591
14:00
And slowly I added five percent here,
five percent there,
five percent there,
257
828378
3739
14:04
until eventually, on a good day,
258
832141
2233
14:06
I was able to leave my home.
259
834398
1906
14:09
I still had to make ridiculous choices:
260
837815
2587
14:12
Will I sit in the garden for 15 minutes,
or will I wash my hair today?
or will I wash my hair today?
261
840568
3841
14:16
But it gave me hope
that I could be treated.
that I could be treated.
262
844924
2428
14:19
I had a sick body; that was all.
263
847693
2342
14:22
And with the right kind of help,
maybe one day I could get better.
maybe one day I could get better.
264
850789
4031
14:27
I came together with patients
around the world,
around the world,
265
855740
3203
14:31
and we started to fight.
266
859466
1754
14:33
We have filled the void
with something wonderful,
with something wonderful,
267
861863
3171
14:37
but it is not enough.
268
865698
1492
14:40
I still don't know if I will ever
be able to run again,
be able to run again,
269
868662
4037
14:44
or walk at any distance,
270
872723
1897
14:46
or do any of those kinetic things
that I now only get to do in my dreams.
that I now only get to do in my dreams.
271
874644
3909
14:51
But I am so grateful
for how far I have come.
for how far I have come.
272
879143
3090
14:55
Progress is slow,
273
883955
1485
14:57
and it is up
274
885464
1292
14:59
and it is down,
275
887310
1256
15:01
but I am getting a little better each day.
276
889222
2913
15:06
I remember what it was like
when I was stuck in that bedroom,
when I was stuck in that bedroom,
277
894013
3919
15:10
when it had been months
since I had seen the sun.
since I had seen the sun.
278
898548
2948
15:15
I thought that I would die there.
279
903226
2088
15:18
But here I am today,
280
906961
1567
15:21
with you,
281
909255
1282
15:23
and that is a miracle.
282
911513
2061
15:28
I don't know what would have happened
had I not been one of the lucky ones,
had I not been one of the lucky ones,
283
916606
3619
15:32
had I gotten sick before the internet,
284
920377
2177
15:34
had I not found my community.
285
922995
1974
15:37
I probably would have already
taken my own life,
taken my own life,
286
925777
2728
15:41
as so many others have done.
287
929028
1907
15:44
How many lives could
we have saved, decades ago,
we have saved, decades ago,
288
932094
3224
15:47
if we had asked the right questions?
289
935957
1903
15:50
How many lives could we save today
290
938626
2149
15:53
if we decide to make a real start?
291
941592
2162
15:57
Even once the true cause
of my disease is discovered,
of my disease is discovered,
292
945205
3043
16:00
if we don't change
our institutions and our culture,
our institutions and our culture,
293
948881
3475
16:04
we will do this again to another disease.
294
952380
2376
16:07
Living with this illness has taught me
295
955658
1994
16:09
that science and medicine
are profoundly human endeavors.
are profoundly human endeavors.
296
957676
2928
16:13
Doctors, scientists and policy makers
297
961153
2591
16:15
are not immune to the same biases
298
963768
2887
16:19
that affect all of us.
299
967568
1579
16:23
We need to think in more nuanced ways
about women's health.
about women's health.
300
971377
3052
16:27
Our immune systems are just as much
a battleground for equality
a battleground for equality
301
975119
4102
16:31
as the rest of our bodies.
302
979245
1582
16:33
We need to listen to patients' stories,
303
981253
2344
16:36
and we need to be willing
to say, "I don't know."
to say, "I don't know."
304
984542
2565
16:40
"I don't know" is a beautiful thing.
305
988024
2352
16:43
"I don't know" is where discovery starts.
306
991235
2592
16:47
And if we can do that,
307
995365
1422
16:49
if we can approach the great vastness
of all that we do not know,
of all that we do not know,
308
997447
3695
16:53
and then, rather than fear uncertainty,
309
1001166
1952
16:55
maybe we can greet it
with a sense of wonder.
with a sense of wonder.
310
1003142
2511
16:58
Thank you.
311
1006342
1351
17:04
Thank you.
312
1012096
1240
ABOUT THE SPEAKER
Jennifer Brea - FilmmakerJennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name.
Why you should listen
Over the following months, while doctors insisted her condition was psychosomatic, Brea became bedridden. She started filming herself and the community that she discovered online, collecting the first footage of what would become a feature documentary about myalgic encephalomyelitis (ME), often referred to as chronic fatigue syndrome. The film, Unrest, which will premiere at the 2017 Sundance Film Festival, tells Jen's story as well as the stories of four other patients living with ME.
Brea is also the founder of #MEAction, an online organizing platform for ME patients around the world, many of whom cannot leave their homes.
Jennifer Brea | Speaker | TED.com