ABOUT THE SPEAKER
Jennifer Brea - Filmmaker
Jennifer 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.

More profile about the speaker
Jennifer Brea | Speaker | TED.com
TEDSummit

Jennifer Brea: What happens when you have a disease doctors can't diagnose

詹妮弗·布雷亚: 当你得了医生无法诊断的疾病怎么办?

Filmed:
2,042,782 views

五年前,TED会员詹妮弗·布雷亚得了一种越来越严重的疾病,即肌痛性脑脊髓炎,通常被熟知的名字是慢性疲劳综合症,这是一种使人慢慢衰竭的疾病,严重损害人的日常活动,并且在最严重的时候会使人无法忍受哪怕是床单摩擦的声音。在这段令人深刻的讲话中,布雷亚描述了她在寻求治疗的过程中所遇到的挫折,对于这个疾病我们无法完全它的根本原因和物理效果;同样布雷亚也讲述了她的使命,通过电影来记录病人在治愈过程中所作出的医学的斗争。
- Filmmaker
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你好.
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嗨!
00:19
Thank you.
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谢谢你们。
00:20
[Jennifer詹妮弗 BreaBrea is sound-sensitive声音敏感.
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【詹妮弗·布雷亚对声音非常敏感
00:22
The live生活 audience听众 was asked
to applaud鼓掌 ASL-style手语风格, in silence安静.]
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因此要求现场的观众以手语的方式
安静地鼓掌。】
00:25
So, five years年份 ago, this was me.
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这是五年前的我,
00:29
I was a PhD博士 student学生 at Harvard哈佛,
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我是哈佛大学的一名博士生,
00:31
and I loved喜爱 to travel旅行.
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并且热爱旅行,
00:34
I had just gotten得到 engaged订婚
to marry结婚 the love of my life.
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我刚与我人生的挚爱订婚,
00:39
I was 28, and like so many许多 of us
when we are in good health健康,
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我28岁,和大部分人
一样身体非常健康,
我觉得自己无所不能。
00:43
I felt like I was invincible不可战胜的.
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00:46
Then one day I had
a fever发热 of 104.7 degrees.
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有一天我高烧40.3度,
00:50
I probably大概 should have gone走了 to the doctor医生,
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可能我应该去看个医生,
但是当时我认为我
这辈子不可能真的生病,
00:52
but I'd never really been sick生病 in my life,
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00:55
and I knew知道 that usually平时,
if you have a virus病毒,
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而且我知道,通常来说
如果你被病毒感染,
00:57
you stay home and you make
some chicken soup,
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在家躺着休息,喝点鸡汤,
01:00
and in a few少数 days,
everything will be fine.
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过几天就什么事都没有了。
01:04
But this time it wasn't fine.
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但是这一次它没有好,
01:07
After the fever发热 broke打破,
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高烧之后,
01:09
for three weeks I was so dizzy头晕,
I couldn't不能 leave离开 my house.
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整整三个星期我头昏眼花到无法出门,
01:13
I would walk步行 straight直行 into door frames.
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我直走都能撞到门框上,
01:16
I had to hug拥抱 the walls墙壁
just to make it to the bathroom浴室.
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我不得不扶着墙才能去洗手间。
01:20
That spring弹簧 I got infection感染
after infection感染,
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那个春天 我连续被病毒感染,
但是每次我去医院,
01:23
and every一切 time I went to the doctor医生,
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01:25
he said there was absolutely绝对
nothing wrong错误.
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医生都确定我的身体完全没什么问题。
01:29
He had his laboratory实验室 tests测试,
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他实验室的检测结果,
01:31
which哪一个 always came来了 back normal正常.
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永远都显示正常,
所有的都是,
01:33
All I had were my symptoms症状,
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01:35
which哪一个 I could describe描述,
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只有我能描述出来,
01:37
but no one else其他 can see.
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其他人都无法察觉的症状。
01:41
I know it sounds声音 silly愚蠢,
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我知道这听起来很蠢,
但是你不得不找到一个方式来
解释发生在自己身上的一切,
01:42
but you have to find a way
to explain说明 things like this to yourself你自己,
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01:45
and so I thought maybe I was just aging老化.
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所以我想我大概只是在衰老,
01:50
Maybe this is what it's like
to be on the other side of 25.
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或许这就是二十五岁的另外一面。
01:53
(Laughter笑声)
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(笑声)
01:56
Then the neurological神经 symptoms症状 started开始.
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接下来神经方面的症状开始出现,
01:59
Sometimes有时 I would find that I couldn't不能
draw the right side of a circle.
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我发现有时候我无法画出圆的右半边,
02:04
Other times I wouldn't不会 be able能够
to speak说话 or move移动 at all.
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有时候我发现
我完全不能说话或者移动,
02:10
I saw every一切 kind of specialist专家:
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我见过各种专家,
02:12
infectious传染病 disease疾病 doctors医生,
dermatologists皮肤科医生, endocrinologists内分泌,
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感染病医生、皮肤病医生,
内分泌医生、心脏病医生,
02:15
cardiologists心脏病专家.
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02:16
I even saw a psychiatrist心理医生.
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我甚至去看过精神病医生。
02:19
My psychiatrist心理医生 said,
"It's clear明确 you're really sick生病,
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我的精神病医生说
“很明显你现在在生病,
但这和精神疾病没有任何关系,
02:22
but not with anything psychiatric精神病.
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02:26
I hope希望 they can find out
what's wrong错误 with you."
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我希望其他医生可以找到你的病因。”
02:30
The next下一个 day, my neurologist神经学家
diagnosed确诊 me with conversion转变 disorder紊乱.
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第二天 我的神经病学医生
诊断我得了一种转化性疾患,
02:34
He told me that everything --
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他告诉我,所有症状--
02:37
the fevers发烧, the sore throats喉咙,
the sinus infection感染,
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发烧、嗓子疼、鼻窦炎,
所有的胃肠疾病
神经和心脏方面的症状--
02:40
all of the gastrointestinal胃肠道,
neurological神经 and cardiac心脏的 symptoms症状 --
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02:44
were being存在 caused造成
by some distant遥远 emotional情绪化 trauma外伤
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都是由某些持续性精神创伤引起的,
02:47
that I could not remember记得.
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而这些创伤我都不记得了,
他说,这些症状是真实存在的。
02:50
The symptoms症状 were real真实, he said,
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02:52
but they had no biological生物 cause原因.
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但是却没有任何生物学病因,
02:56
I was training训练 to be a social社会 scientist科学家.
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我被培养成为一名社会科学家,
02:59
I had studied研究 statistics统计,
probability可能性 theory理论,
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我学习过统计学、概念理论,
03:02
mathematical数学的 modeling造型,
experimental试验 design设计.
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数学建模和实验设计,
03:07
I felt like I couldn't不能 just reject拒绝
my neurologist's神经学家的 diagnosis诊断.
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我觉得我没有办法
反驳这位神经学医生的诊断,
03:11
It didn't feel true真正,
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这感觉很不真实,
03:13
but I knew知道 from my training训练
that the truth真相 is often经常 counterintuitive有悖常理,
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但我的专业知识告诉我
真相往往与直觉相悖,
03:17
so easily容易 obscured模糊
by what we want to believe.
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所以很容易被我们的主观想法所掩盖,
03:20
So I had to consider考虑 the possibility可能性
that he was right.
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所以我不得不考虑
他的诊断可能是对的,
03:25
That day, I ran a small experiment实验.
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那天,我进行了一个小实验,
03:28
I walked back the two miles英里
from my neurologist's神经学家的 office办公室 to my house,
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我从距离两英里的
神经学家的办公室走回家,
03:33
my legs wrapped包裹 in this strange奇怪,
almost几乎 electric电动 kind of pain疼痛.
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我的腿被一种奇怪的
像电流一样的疼痛缠住,
03:38
I meditated沉思 on that pain疼痛,
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我认真思考了那种疼痛,
思考我的意识如何能带来这一切,
03:40
contemplating考虑 how my mind心神
could have possibly或者 generated产生 all this.
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在我走过家门的一瞬间,
03:45
As soon不久 as I walked through通过 the door,
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03:47
I collapsed倒塌.
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我倒在地上。
03:48
My brain and my spinal cord were burning燃烧.
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我的大脑和脊髓灼烧般的疼痛,
03:52
My neck颈部 was so stiff僵硬
I couldn't不能 touch触摸 my chin下巴 to my chest胸部,
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我的脖子僵硬到我的胸
甚至无法碰到下巴,
03:57
and the slightest丝毫 sound声音 --
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最轻微的声音,
03:59
the rustling沙沙 of the sheets床单,
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纸张发出的沙沙声。
04:00
my husband丈夫 walking步行 barefoot赤脚
in the next下一个 room房间 --
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我丈夫赤着脚在隔壁房间走路的声音,
04:03
could cause原因 excruciating痛苦 pain疼痛.
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都能引发令人煎熬的痛苦,
04:07
I would spend most
of the next下一个 two years年份 in bed.
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而接下来的两年,我大部分的
时间都是在床上度过的,
04:11
How could my doctor医生
have gotten得到 it so wrong错误?
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我的医生怎么会弄错呢?
04:14
I thought I had a rare罕见 disease疾病,
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我想我是得了一种罕见的病,
04:17
something doctors医生 had never seen看到.
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有些东西医生都没有见过,
于是我上网寻找,
04:19
And then I went online线上
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04:21
and found发现 thousands数千 of people
all over the world世界
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发现无数的人,
04:23
living活的 with the same相同 symptoms症状,
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和我有相同的症状,
04:26
similarly同样 isolated孤立,
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一样的孤独,
一样的怀疑,
04:27
similarly同样 disbelieved不信.
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04:29
Some could still work,
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他们中一些人仍然可以工作,
04:31
but had to spend their evenings晚上
and weekends周末 in bed,
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但是不得不整个晚上
和周末躺在床上休息,
04:33
just so they could show显示 up
the next下一个 Monday星期一.
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这样在下一个星期一
他们还可以继续工作,
04:36
On the other end结束 of the spectrum光谱,
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而这个圈子的另一端。
04:38
some were so sick生病
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有一些人生病太重,
04:40
they had to live生活 in complete完成 darkness黑暗,
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一部分人已经太过虚弱所以他们
不得不生活在彻底的黑暗中,
04:42
unable无法 to tolerate容忍
the sound声音 of a human人的 voice语音
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无法忍受任何声音,
04:45
or the touch触摸 of a loved喜爱 one.
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或者是来自爱人的触碰,
04:49
I was diagnosed确诊
with myalgic肌痛 encephalomyelitis脑脊髓炎.
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我被确诊为肌痛性脑脊髓炎。
你可能也听说过它被称为
“慢性疲劳综合症”,
04:54
You've probably大概 heard听说 it called
"chronic慢性 fatigue疲劳 syndrome综合征."
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04:58
For decades几十年, that's a name名称
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几十年来,这种病的,
05:00
that's meant意味着 that this
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主要形象正如,
05:03
has been the dominant优势 image图片
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这张图片所展示的,
05:04
of a disease疾病 that can be
as serious严重 as this.
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也是这种病所能达到的严重程度,
05:09
The key symptom症状 we all share分享
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我们所共有的关键症状就是,
05:11
is that whenever每当 we exert发挥 ourselves我们自己 --
physically物理, mentally精神上 --
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每当我们消耗自己—体力,精力—
05:15
we pay工资 and we pay工资 hard.
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我们越来越辛苦,
05:17
If my husband丈夫 goes for a run,
he might威力 be sore for a couple一对 of days.
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如果我丈夫出去跑步
他可能会全身酸痛几天,
如果我试图走半个街区
我也许就要整整一周卧床不起,
05:21
If I try to walk步行 half a block,
I might威力 be bedridden卧床不起的 for a week.
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05:25
It is a perfect完善 custom习惯 prison监狱.
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这是个完美的定制监狱,
05:28
I know ballet芭蕾舞 dancers舞者 who can't dance舞蹈,
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我知道不能跳舞的芭蕾演员,
05:31
accountants会计师 who can't add,
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不能计算的会计师,
05:33
medical students学生们 who never became成为 doctors医生.
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永远无法成为医生的医学生,
05:36
It doesn't matter what you once一旦 were;
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这和你曾经做什么毫无关系。
05:39
you can't do it anymore.
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你再也不能继续做了。
05:41
It's been four years年份,
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四年以来,
05:43
and I've still never been as well as I was
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我仍然无法恢复到,
我从我的神经学医生办公室
走回家之前的那一刻。
05:46
the minute分钟 before I walked home
from my neurologist's神经学家的 office办公室.
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05:50
It's estimated预计 that about 15 to 30 million百万
people around the world世界
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据估计,全世界
有150万到300万人,
05:53
have this disease疾病.
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患有这种疾病,
在我所在的美国,大约有100万人,
05:55
In the US, where I'm from,
it's about one million百万 people.
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05:58
That makes品牌 it roughly大致 twice两次 as common共同
as multiple sclerosis硬化.
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普遍性是多发性硬化症人数的两倍,
06:03
Patients耐心 can live生活 for decades几十年
with the physical物理 function功能
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只要器官保持运作,
06:06
of someone有人 with congestive充血性 heart failure失败.
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充血性心肌衰竭病人可以生活几十年,
06:09
Twenty-five二十五 percent百分 of us
are homebound闲居 or bedridden卧床不起的,
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而我们当中的25%的人是
生病在家或者卧床不起,
06:12
and 75 to 85 percent百分 of us
can't even work part-time兼职.
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75%到85%连兼职工作
都没有办法完成,
06:17
Yet然而 doctors医生 do not treat对待 us
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但是医生并不治疗这种疾病。
06:20
and science科学 does not study研究 us.
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也没有学科研究这个病,
06:23
How could a disease疾病 this common共同
and this devastating破坏性的
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一个如此常见且有杀伤力的疾病,
06:27
have been forgotten忘记了 by medicine医学?
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怎么能被医学给遗忘了?
06:31
When my doctor医生 diagnosed确诊 me
with conversion转变 disorder紊乱,
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当我的医生诊断我患了转化性疾患时,
06:33
he was invoking调用 a lineage血统
of ideas思路 about women's女士的 bodies身体
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他引用了一系列有2500年历史的,
06:36
that are over 2,500 years年份 old.
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关于女性身体的观点,
06:39
The Roman罗马 physician医师 Galen盖伦 thought
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罗马医学家迦林认为,
06:40
that hysteria歇斯底里 was caused造成
by sexual有性 deprivation剥夺
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癔病是有由性生活不足造成的,
尤其是那些性欲旺盛的女性,
06:43
in particularly尤其 passionate多情 women妇女.
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06:47
The Greeks希腊人 thought the uterus子宫
would literally按照字面 dry up
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希腊人认为子宫确实会干涸,
06:49
and wander漫步 around the body身体
in search搜索 of moisture湿气,
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然后在身体中四处游走寻找水分,
压迫着身体内的器官。
06:52
pressing紧迫 on internal内部 organs器官 --
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06:54
yes --
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是的,
06:56
causing造成 symptoms症状 from extreme极端 emotions情绪
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引起的症状从极端的情绪,
到头晕、麻痹,
06:59
to dizziness头晕 and paralysis麻痹.
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07:02
The cure治愈 was marriage婚姻 and motherhood母亲.
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而治疗方法就是结婚和生子,
07:06
These ideas思路 went largely大部分 unchanged不变
for several一些 millennia千年 until直到 the 1880s,
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这种想法在几千年里都没有大的变化
直到十九世纪八十年代,
07:11
when neurologists神经学家 tried试着 to modernize现代化
the theory理论 of hysteria歇斯底里.
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神经学家们试图用现代化的方法
来解释癔病的疾病原理,
07:15
Sigmund西格蒙德 Freud弗洛伊德 developed发达 a theory理论
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奥地利精神分析学家西格蒙德·弗洛伊德
发展出一个学说,
07:17
that the unconscious无意识 mind心神
could produce生产 physical物理 symptoms症状
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认为当无意识心理在
有意识心理因为
07:20
when dealing交易 with memories回忆 or emotions情绪
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过于痛苦而无法处理
记忆或者情感时,
07:22
too painful痛苦 for the conscious意识
mind心神 to handle处理.
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会产生一种物理症状。
07:24
It converted转换 these emotions情绪
into physical物理 symptoms症状.
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它将这些情感转化成物理症状,
07:29
This meant意味着 that men男人
could now get hysteria歇斯底里,
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这意味着男性也可能会患癔病
07:31
but of course课程 women妇女 were still
the most susceptible易感.
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但是女性仍然是最易受到感染的,
07:35
When I began开始 investigating调查
the history历史 of my own拥有 disease疾病,
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当我开始对我这个病的
历史进行调查研究时,
07:39
I was amazed吃惊 to find how deep
these ideas思路 still run.
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我非常吃惊的发现这些
观点是多么的深入人心。
07:43
In 1934,
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1934年,
07:44
198 doctors医生, nurses护士 and staff员工
at the Los洛杉矶 Angeles洛杉矶 County General一般 Hospital醫院
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洛杉矶县综合医院的198名
医生、护士和工作人员,
07:49
became成为 seriously认真地 ill生病.
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病得非常严重,
07:50
They had muscle肌肉 weakness弱点, stiffness刚性
in the neck颈部 and back, fevers发烧 --
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他们开始肌肉酸痛、颈部及
后背开始变得僵硬以及高烧
07:55
all of the same相同 symptoms症状
I had when I first got diagnosed确诊.
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和我最初诊断的所有症状一模一样,
医生们认为这是
小儿麻痹症的最新形式。
07:58
Doctors医生 thought
it was a new form形成 of polio脊髓灰质炎.
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08:02
Since以来 then, there have been more
than 70 outbreaks爆发 documented记录
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从那之后,全世界有70多次关于
08:05
around the world世界,
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这个有着惊人相似的感染性疾病,
08:06
of a strikingly惊人 similar类似
post-infectious感染后 disease疾病.
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爆发的记载。
08:09
All of these outbreaks爆发 have tended往往
to disproportionately不成比例 affect影响 women妇女,
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所有的疾病爆发都不同
比例的倾向于影响女性,
08:13
and in time, when doctors医生 failed失败 to find
the one cause原因 of the disease疾病,
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而同时,当医生们无法找到
任何这个疾病的起因,
08:17
they thought that these outbreaks爆发
were mass hysteria歇斯底里.
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他们认为这些爆发属于大规模癔病,
为什么这个观点一直保持着
这么大的影响力?
08:21
Why has this idea理念 had such这样 staying power功率?
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08:25
I do think it has to do with sexism性别歧视,
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我认为这是针对女性的偏见,
但是我同时也认为从根本上来说
医生们想提供帮助。
08:27
but I also think that fundamentally从根本上,
doctors医生 want to help.
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08:30
They want to know the answer回答,
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他们想知道答案,
08:32
and this category类别 allows允许 doctors医生 to treat对待
what would otherwise除此以外 be untreatable不可治愈,
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这个分类使医生们可以去治疗
根本无法治愈的疾病,
08:37
to explain说明 illnesses疾病
that have no explanation说明.
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给这个无解的疾病一个解释,
08:41
The problem问题 is that this
can cause原因 real真实 harm危害.
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这里的问题就是这样做
会造成真实的伤害,
08:44
In the 1950s, a psychiatrist心理医生
named命名 Eliot艾略特 Slater斯莱特
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在20世纪50年代,一个名为
艾略特·斯莱特的精神病学家,
08:48
studied研究 a cohort队列 of 85 patients耐心
who had been diagnosed确诊 with hysteria歇斯底里.
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研究了一个85名被诊断
为癔病的患者群体,
08:52
Nine years年份 later后来, 12 of them were dead
and 30 had become成为 disabled.
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9年之后,他们中的
12人死亡,30人残疾。
08:56
Many许多 had undiagnosed确诊 conditions条件
like multiple sclerosis硬化,
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许多人得了尚未确诊的情况
比如多发性硬化、
癫痫以及脑肿瘤。
09:00
epilepsy癫痫, brain tumors肿瘤.
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09:03
In 1980, hysteria歇斯底里 was officially正式
renamed改名 "conversion转变 disorder紊乱."
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在1980年,癔病被正式重新
命名为 “(神经)转化性疾患”。
09:07
When my neurologist神经学家 gave me
that diagnosis诊断 in 2012,
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当我的神经科医生在
2012年将我确诊为这个病时,
09:10
he was echoing呼应 Freud's弗洛伊德 words verbatim逐字,
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他逐字地重复佛洛依德的话,
09:13
and even today今天,
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甚至到了今天,
09:14
women妇女 are 2 to 10 times more likely容易
to receive接收 that diagnosis诊断.
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女性确诊这个疾病的概率
仍然是男性的2到10倍,
09:20
The problem问题 with the theory理论 of hysteria歇斯底里
or psychogenic illness疾病
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癔病或者精神性疾病理论的问题,
09:24
is that it can never be proven证明.
176
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在于他们从来没有被证实过,
09:26
It is by definition定义
the absence缺席 of evidence证据,
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很明显的它缺少依据,
09:30
and in the case案件 of ME,
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至于慢性疲劳综合症,
09:31
psychological心理 explanations说明
have held保持 back biological生物 research研究.
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心理学解释阻止了生物研究的继续。
09:35
All around the world世界, ME is one
of the least最小 funded资助 diseases疾病.
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在全世界范围内,慢性疲劳综合症
是被投入最少的疾病之一,
09:39
In the US, we spend each year
roughly大致 2,500 dollars美元 per AIDS艾滋病 patient患者,
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在美国,我们每年为每名艾滋病
患者投入大约2500美元,
09:46
250 dollars美元 per MS女士 patient患者
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为每名多发性硬化症患者
投入250美元,
09:50
and just 5 dollars美元 per year
per ME patient患者.
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而对于慢性疲劳综合症患者
这个数字只有5美元,
09:54
This was not just lightning闪电.
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这不仅仅是减少,
09:56
I was not just unlucky不幸的.
185
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我不仅仅是不走运,
09:58
The ignorance无知 surrounding周围 my disease疾病
has been a choice选择,
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接受这个疾病一直
被无视已经是一个选择。
10:01
a choice选择 made制作 by the institutions机构
that were supposed应该 to protect保护 us.
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这个选择是由本该保护
我们的那些研究机构做出的,
10:07
We don't know why ME
sometimes有时 runs运行 in families家庭,
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我们不知道为什么慢性
疲劳综合症会在家族遗传,
10:10
why you can get it
after almost几乎 any infection感染,
189
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为什么任何一个传染病,
10:12
from enteroviruses肠道病毒
to Epstein-Barreb virus病毒 to Q fever发热,
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从肠道病毒到疱疹病毒到Q热
感染之后都会得慢性疲劳综合症?
10:17
or why it affects影响 women妇女
at two to three times the rate of men男人.
191
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或者,为什么女性得这个病的
概率会是男性的两到三倍?
10:21
This issue问题 is much bigger
than just my disease疾病.
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这些问题比我得这个病本身更严重,
10:24
When I first got sick生病,
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当我第一次生病的时候,
老朋友们都来联系我,
10:25
old friends朋友 were reaching到达 out to me.
194
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2158
10:28
I soon不久 found发现 myself a part部分
of a cohort队列 of women妇女 in their late晚了 20s
195
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很快我发现我自己成为了一群
在接近30岁的时候,
身体就开始衰弱的女性中的一员,
10:31
whose谁的 bodies身体 were falling落下 apart距离.
196
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1686
10:34
What was striking引人注目 was just how
much trouble麻烦 we were having
197
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令人感到打击的是,
10:36
being存在 taken采取 seriously认真地.
198
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被重视的仅仅只是
我们遇到了多少困难。
10:38
I learned学到了 of one woman女人 with scleroderma硬皮病,
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1958
我认识了一位得了硬皮病的女性,
10:40
an autoimmune自身免疫性 connective结缔组织 tissue组织 disease疾病,
200
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2100
这是一种自身免疫性结缔组织疾病,
10:42
who was told for years年份
that it was all in her head.
201
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在几年的时间里她被
告知这个病在她的脑部,
10:45
Between之间 the time of onset发病 and diagnosis诊断,
202
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在着手治疗和诊断的这段时间里,
她的食道被完全损坏,
10:47
her esophagus食管 was so thoroughly damaged破损,
203
635953
2427
10:50
she will never be able能够 to eat again.
204
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至今仍然无法进食,
10:52
Another另一个 woman女人 with ovarian卵巢 cancer癌症,
205
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2182
另外一位得了卵巢癌的女性,
10:55
who for years年份 was told
that it was just early menopause绝经.
206
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2748
在很长时间里被医生
告知只是早期更年期,
10:59
A friend朋友 from college学院,
207
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1568
另外一位大学里的朋友,
11:00
whose谁的 brain tumor was misdiagnosed误诊
for years年份 as anxiety焦虑.
208
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3895
得了脑瘤却被错误的诊断成焦虑症,
11:06
Here's这里的 why this worries me:
209
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这就是为什么让我感觉忧虑的原因:
11:09
since以来 the 1950s, rates利率 of many许多
autoimmune自身免疫性 diseases疾病
210
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3451
从20世纪50年代起
自身免疫系统的得病率,
11:12
have doubled翻倍 to tripled三倍.
211
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1703
是以前的两倍到三倍,
11:14
Forty-five四十五 percent百分 of patients耐心
who are eventually终于 diagnosed确诊
212
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2940
45%最终被诊断为
11:17
with a recognized认可 autoimmune自身免疫性 disease疾病
213
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1994
已知的自身免疫系统疾病的患者,
11:19
are initially原来 told they're hypochondriacs忧郁症.
214
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2508
最初只是被告知得了忧郁症。
11:22
Like the hysteria歇斯底里 of old,
this has everything to do with gender性别
215
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3150
就像古时的癔病,
11:25
and with whose谁的 stories故事 we believe.
216
673957
1866
这与性别和我们
所相信的故事都有关系,
11:28
Seventy-five七十五 percent百分
of autoimmune自身免疫性 disease疾病 patients耐心 are women妇女,
217
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3651
75%自身免疫系统疾病
的患者都是女性,
11:32
and in some diseases疾病,
it's as high as 90 percent百分.
218
680649
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并且在某些疾病中
这个比例高达90%,
11:37
Even though虽然 these diseases疾病
disproportionately不成比例 affect影响 women妇女,
219
685076
2857
尽管这些疾病不同比例的影响着女性,
它们并非女性疾病,
11:39
they are not women's女士的 diseases疾病.
220
687957
1652
11:41
ME affects影响 children孩子
and ME affects影响 millions百万 of men男人.
221
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3688
慢性疲劳综合症也影响着儿童和男性,
11:45
And as one patient患者 told me,
222
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1785
就像一位患者告诉我的,
11:47
we get it coming未来 and going --
223
695154
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这个病是来来去去变化不定的--
11:48
if you're a woman女人, you're told
you're exaggerating夸大 your symptoms症状,
224
696686
3608
如果你是女性,他们说你夸大了症状,
11:52
but if you're a guy, you're told
to be strong强大, to buck降压 up.
225
700318
3458
但是如果你是男性,他们
鼓励你要强壮要振作起来,
11:56
And men男人 may可能 even have
a more difficult time getting得到 diagnosed确诊.
226
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4149
尽管男性会更难以确诊,
12:09
My brain is not what it used to be.
227
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2865
我的大脑已经不是曾经那样了。
12:25
Here's这里的 the good part部分:
228
733914
1327
但是依旧有好消息:
尽管如此,我依然有希望,
12:28
despite尽管 everything, I still have hope希望.
229
736645
2179
12:31
So many许多 diseases疾病 were once一旦
thought of as psychological心理
230
739903
3900
有太多的疾病在科学揭示
他们的生物原理之前,
12:35
until直到 science科学 uncovered裸露
their biological生物 mechanisms机制.
231
743827
2908
都被认为是心理上的
12:39
Patients耐心 with epilepsy癫痫
could be forcibly强制 institutionalized制度化
232
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3094
癫痫患者会被强制收容治疗,
12:42
until直到 the EEG脑电图 was able能够 to measure测量
abnormal不正常 electrical电动 activity活动 in the brain.
233
750441
4604
直到脑电图能够测量
脑部不正常的电流活动,
多发性硬化症会被错误的
诊断为癔病性麻痹,
12:47
Multiple sclerosis硬化 could be misdiagnosed误诊
as hysterical歇斯底里 paralysis麻痹
234
755500
4276
12:51
until直到 the CAT scan扫描 and the MRIMRI
discovered发现 brain lesions病变.
235
759800
3312
直到造影扫描和核磁
共振发现了脑损伤,
12:55
And recently最近, we used to think
236
763945
1515
而最近,我们曾经所认为的
12:57
that stomach ulcers溃疡
were just caused造成 by stress强调,
237
765484
2820
胃溃疡是因为压力过大,
13:00
until直到 we discovered发现
that H. pylori幽门螺杆菌 was the culprit罪魁祸首.
238
768328
3320
直到我们发现幽门
螺杆菌才是罪魁祸首,
13:04
ME has never benefited受益
from the kind of science科学
239
772801
2894
慢性疲劳综合症却从来得益于
13:07
that other diseases疾病 have had,
240
775719
2310
这种其它疾病可以获得的科学治疗。
13:10
but that's starting开始 to change更改.
241
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1664
但是这一切开始在转变,
13:12
In Germany德国, scientists科学家们 are starting开始
to find evidence证据 of autoimmunity自身免疫,
242
780661
3541
在德国,科学家开始
发现自身免疫疾病的依据,
13:16
and in Japan日本, of brain inflammation.
243
784226
2342
在日本,则发现了脑炎症的依据,
13:19
In the US, scientists科学家们 at Stanford斯坦福
are finding发现 abnormalities异常
244
787406
3054
在美国,斯坦福的科学家
13:22
in energy能源 metabolism代谢
245
790484
1896
正在研究能量代谢的异常情况,
也就是他们发现了与
正常值相差16的标准偏差,
13:24
that are 16 standard标准 deviations偏差
away from normal正常.
246
792404
3462
13:28
And in Norway挪威, researchers研究人员
are running赛跑 a phase-相-3 clinical临床 trial审讯
247
796640
4045
在挪威,研究者正在进行一个
抗癌药物第三阶段的临床试验,
13:32
on a cancer癌症 drug药物 that in some patients耐心
causes原因 complete完成 remission缓解.
248
800709
3667
这个药物可以使一部分
患者得到完全的好转,
13:37
What also gives me hope希望
249
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1661
同样给了我希望的
13:40
is the resilience弹性 of patients耐心.
250
808316
2017
是患者的恢复力,
13:43
Online线上 we came来了 together一起,
251
811968
1874
在网上,我们走到了一起,
13:46
and we shared共享 our stories故事.
252
814251
1679
我们开始分享各自的故事,
13:49
We devoured吞噬 what research研究 there was.
253
817449
2774
我们如饥似渴的了解科研的进度,
13:52
We experimented试验 on ourselves我们自己.
254
820743
2077
我们在自己身上做实验,
13:55
We became成为 our own拥有 scientists科学家们
and our own拥有 doctors医生
255
823496
2373
因为不得已,
我们成为了自己的科学家和医生。
13:57
because we had to be.
256
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1591
然后慢慢地,我从这里得到了5%的
进展,从那里得到5%的进展,
14:00
And slowly慢慢地 I added添加 five percent百分 here,
five percent百分 there,
257
828378
3739
直到最后,在最好的时候,
14:04
until直到 eventually终于, on a good day,
258
832141
2233
14:06
I was able能够 to leave离开 my home.
259
834398
1906
我可以走出我的家,
14:09
I still had to make ridiculous荒谬 choices选择:
260
837815
2587
我依然需要做一个很愚蠢的选择:
14:12
Will I sit in the garden花园 for 15 minutes分钟,
or will I wash my hair头发 today今天?
261
840568
3841
今天我是将在花园里待15分钟
还是去洗个头发?
14:16
But it gave me hope希望
that I could be treated治疗.
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但是这给了我被治愈的希望。
14:19
I had a sick生病 body身体; that was all.
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我身患疾病,而这就是全部,
如果得到了正确的治疗
某一天我就可以康复。
14:22
And with the right kind of help,
maybe one day I could get better.
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14:27
I came来了 together一起 with patients耐心
around the world世界,
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我和全世界的患者联合起来,
14:31
and we started开始 to fight斗争.
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我们开始战斗,
14:33
We have filled填充 the void空虚
with something wonderful精彩,
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我们用一些美好的东西
把这片空白填满,
14:37
but it is not enough足够.
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但这远远不够,
14:40
I still don't know if I will ever
be able能够 to run again,
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我仍然不知道我是否还能再一次奔跑,
14:44
or walk步行 at any distance距离,
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或者走上一段距离,
14:46
or do any of those kinetic动能 things
that I now only get to do in my dreams.
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或者做任何现在只能
在我梦里出现的运动,
但是我对我现在所能走到的
这一步表示感恩,
14:51
But I am so grateful感激
for how far I have come.
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14:55
Progress进展 is slow,
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进展虽然很慢,
14:57
and it is up
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而且有时出现,
14:59
and it is down,
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有时不见,
15:01
but I am getting得到 a little better each day.
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但是我每天都在变得好一点点,
15:06
I remember记得 what it was like
when I was stuck卡住 in that bedroom卧室,
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3919
我记得当我在被困在卧室里的样子,
我记得我再一次见到阳光
已经过了好几个月,
15:10
when it had been months个月
since以来 I had seen看到 the sun太阳.
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2948
15:15
I thought that I would die there.
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我想那时我也许是要死了,
15:18
But here I am today今天,
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但是今天我在这里,
15:21
with you,
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和你们一起。
15:23
and that is a miracle奇迹.
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这已经是个奇迹,
15:28
I don't know what would have happened发生
had I not been one of the lucky幸运 ones那些,
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3619
我不知道如果我
不是这其中一个幸运儿。
15:32
had I gotten得到 sick生病 before the internet互联网,
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如果我在有互联网之前生病,
15:34
had I not found发现 my community社区.
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1974
如果我没有找到属于
我的团体,将会发生什么,
15:37
I probably大概 would have already已经
taken采取 my own拥有 life,
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我或许已经自杀,
就像很多人做的那样,
15:41
as so many许多 others其他 have doneDONE.
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1907
15:44
How many许多 lives生活 could
we have saved保存, decades几十年 ago,
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如果在数十年之前我们可以问出,
正确的问题有多少生命可以得救?
15:47
if we had asked the right questions问题?
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1903
15:50
How many许多 lives生活 could we save保存 today今天
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2149
如果我们有了一个真正的开始,
15:53
if we decide决定 to make a real真实 start开始?
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现在又有多少生命可以得救?
15:57
Even once一旦 the true真正 cause原因
of my disease疾病 is discovered发现,
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945205
3043
即使慢性疲劳综合症的
真正原因被发现,
16:00
if we don't change更改
our institutions机构 and our culture文化,
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948881
3475
而我们的研究机构和
我们的文化没有改变,
16:04
we will do this again to another另一个 disease疾病.
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那么下一次我们还是会用同样的
方式去对待另外一种疾病,
16:07
Living活的 with this illness疾病 has taught me
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1994
与这个疾病共生教会我,
16:09
that science科学 and medicine医学
are profoundly深深 human人的 endeavors努力.
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2928
科学和药物是人类深刻地努力,
16:13
Doctors医生, scientists科学家们 and policy政策 makers制造商
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医生、科学家和决策者
16:15
are not immune免疫的 to the same相同 biases偏见
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并不能对影响我们的,
所有偏见免疫。
16:19
that affect影响 all of us.
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1579
16:23
We need to think in more nuanced细致入微 ways方法
about women's女士的 health健康.
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3052
我们需要用一个更细致入微的
方式来思考女性健康,
16:27
Our immune免疫的 systems系统 are just as much
a battleground战场 for equality平等
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4102
我们的免疫系统就和我们
身体的其它部分一样,
他们是平等的战场,
16:31
as the rest休息 of our bodies身体.
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979245
1582
16:33
We need to listen to patients'耐心' stories故事,
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2344
我们需要去聆听患者们的故事,
16:36
and we need to be willing愿意
to say, "I don't know."
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2565
并且我们需要乐意说“我不知道”,
16:40
"I don't know" is a beautiful美丽 thing.
305
988024
2352
“我不知道”这句话
是一个美妙的事情,
16:43
"I don't know" is where discovery发现 starts启动.
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2592
“我不知道”就是一个探索的开始,
16:47
And if we can do that,
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995365
1422
如果我们可以做到这一点,
16:49
if we can approach途径 the great vastness广大
of all that we do not know,
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3695
如果我们可以去探索我们
所有不知道的广袤领域,
16:53
and then, rather than fear恐惧 uncertainty不确定,
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1952
而不是去畏惧未知,
16:55
maybe we can greet迎接 it
with a sense of wonder奇迹.
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2511
也许我们就可以用惊叹
向那未知的领域致敬。
16:58
Thank you.
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谢谢大家。
谢谢大家。
17:04
Thank you.
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Translated by Jingdan Niu
Reviewed by Yanyan Hong

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ABOUT THE SPEAKER
Jennifer Brea - Filmmaker
Jennifer 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.

More profile about the speaker
Jennifer Brea | Speaker | TED.com