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那位帅锅不知道好了没有?——从慢性疲劳综合症看西方生物医学科学家的思维模式

2019-12-10  东施开心...

引言:这里想通过一个故事来展示中西方治疗疾病的思维模式的不同。由于文章比较长,请朋友们耐心看完,在这篇文章里面没有进行评价,只是展示这个案例以及西方顶级科学家的研究模式。

记得我在2015年回复了在washingtonpost.com看到的一个故事。记得那个故事给我印象很深刻。那时候,我还没有自学中药。从那个故事中,我看出了中西方治疗疾病的不同思维模式。

当时,为了回复那个故事,我查了一些资料,写了一些英文回复。那些文字用了不少时间,因此,这里找出来,顺便也给自己留作一个纪念。

那篇文章的标题是《With his son terribly ill, a top scientist takes on chronic fatigue syndrome》(儿子患重病,一位顶级科学家着手研究慢性疲劳综合症),内容如下:

Before he developed chronic fatigue syndrome, Whitney Dafoe was an award-winning photographer and a world traveler. (Courtesy of Dafoe's family)在他患上慢性疲劳综合症之前,惠特尼·达福是一位获奖的摄影师和世界旅行者。

By Miriam E. Tucker

October 5, 2015

Before he got sick, Whitney Dafoe was an award-winning photographer and a world traveler. He’d helped build a nunnery in India, ridden a motorcycle in the Himalayas and visited all 50 American states.

在生病之前,惠特尼·达福是一位获奖的摄影师和世界旅行者。他曾在印度帮助修建了一座尼姑庵,在喜马拉雅山骑摩托车,并访问了美国所有50个州。

He also worked on Barack Obama’s 2008 presidential campaign, and although he was already ill by January 2009, pushed himself to travel to Washington from his California home to photograph the inauguration.

他还参与了巴拉克奥巴马2008年的总统竞选活动,尽管到2009年1月他已经病了,但他还是强迫自己从加州的家里去华盛顿拍摄就职典礼。

But now, at 31, Whitney lies in bed in a darkened room in his parents’ home, unable to talk, walk or eat. He is fed intravenously and is barely able to tolerate light, sounds or being touched. His parents and the medical personnel who see him wear plain clothing when they enter his room because bright colors, shapes or any kind of print make him feel even worse, as does any movement that he’s not expecting.

但现在,31岁的惠特尼躺在父母家一间昏暗的房间里的床上,不能说话,不能走路,也不能吃饭。他静脉注射食物,几乎不能忍受光线、声音或被触摸。他的父母和看病的医务人员进入他的房间时都穿着朴素的衣服,因为鲜艳的颜色、形状或任何印刷品都会让他感觉更糟,任何他意想不到的动作也是如此。

“It’s hard to explain how fragile he is,” says his mother, Janet Dafoe.

“很难解释他有多脆弱,”他的母亲珍妮特·达福说。

This isn’t the picture that people imagine when they hear “chronic fatigue syndrome,” which is often viewed by the public and the health-care community as a trivial or primarily psychological complaint.

当人们听到“慢性疲劳综合征”时,并不是想象中的那样,公众和医疗保健界通常认为这是一种微不足道或主要是心理上的抱怨。

Because Dafoe is unable to get out of bed (or move) to bathe, his father Ronald Davis periodically shaves his head and beard to prevent itchiness. (Courtesy of Dafoe's family)
由于达福无法下床(或移动)洗澡,他的父亲罗纳德戴维斯定期剃光头和胡须,以防止发痒。

[He’s disabled. Can NIH spare a few dimes?]

[他是残疾人。国家卫生研究院能省下几毛钱吗?]

In a February report, the Institute of Medicine gave the illness a new name — systemic exertion intolerance disease. Many patients have long criticized the name “chronic fatigue syndrome” for not reflecting the seriousness of the illness. The new name, some say, is not much of an improvement. Some patients call it by an older name, “myalgic encephalomyelitis.” Most official documents refer to it with a compromise term, “myalgic encephalomyelitis/chronic fatigue syndrome,” or ME/CFS.

在2月份的一份报告中,医学研究所给这种疾病起了一个新的名字——全身劳累不耐症。长期以来,许多患者批评“慢性疲劳综合征”这个名字不能反映疾病的严重性。有人说,这个新名字并没有太大的进步。一些患者称之为“肌痛性脑脊髓炎”,大多数官方文件用一个折衷词“肌痛性脑脊髓炎/慢性疲劳综合征”或ME/CFS来称呼它。

The IOM report notes that doctors often lack understanding of the condition and are often skeptical that it is a true medical condition, believing instead that it’s partially or wholly psychological.

国际移民组织的报告指出,医生往往对这种情况缺乏了解,并且常常怀疑这是一种真正的医疗状况,反而认为这是部分或全部心理上的。

Some may therefore be surprised that the illness is now a major research focus for one of the world’s leading biomedical scientists.

That scientist, Ronald W. Davis, is Whitney Dafoe’s father.

因此,一些人可能会感到惊讶的是,这种疾病现在是世界领先的生物医学科学家之一的一个主要研究重点。

[Experts call chronic fatigue syndrome a serious physical illness]

[专家称慢性疲劳综合症为严重的身体疾病]

Davis heads the Genome Technology Center at Stanford University. In the 1970s, he developed techniques for gene mapping that were later used in the Human Genome Project, for which he was a co-investigator. In 2013, the Atlantic magazine named him one of “Today’s Greatest Inventors, ” along with such people as Vint Cerf, sometimes called “the father of the Internet,” and Elon Musk, one of the founders of electric-car company Tesla Motors.

戴维斯是斯坦福大学基因组技术中心的负责人。上世纪70年代,他开发了基因作图技术,后来用于人类基因组计划,他是该计划的共同研究者。2013年,《大西洋》杂志将他与有时被称为“互联网之父”的温特·瑟夫、电动汽车公司特斯拉汽车(Tesla Motors)创始人之一埃隆·马斯克(Elon Musk)一起评为“当今最伟大的发明家”。

Using Stanford’s technology

使用斯坦福的技术

Now the 74-year-old Davis has embarked on what may be the biggest challenge of his career: to help his son and others living with ME/CFS, a group that numbers, by various estimates, as many as 4 million Americans and as few as 836,000.

现在,74岁的戴维斯已经开始了他职业生涯中最大的挑战:帮助他的儿子和其他的ME/CFS患者,据各种估计,这个群体有多达400万美国人和836000的少数人。

“It’s probably the last major disease that we don’t know anything about. . . . It’s remarkable how insidious this thing is, in the sense that people who have it don’t look sick, so nobody believes them,” Davis said at a recent fundraiser held in the yard of the family’s home in Palo Alto, Calif. The event drew about 100 people, including the city’s mayor.

“这可能是我们最不了解的一种主要疾病。. . . 戴维斯最近在加州帕洛阿尔托(Palo Alto)家的院子里举行了一次募捐活动,他说:“值得注意的是,这件事有多么阴险,因为有这种病的人看上去并不生病,所以没人相信他们。” 这次活动吸引了大约100人,包括市长。

Davis aims to use Stanford’s technology — and eventually collaborate with others — to study ME/CFS in an unprecedented way. He has recruited three Nobel laureates and other noted scientists to the advisory board of the Open Medicine Foundation, which is raising money for the project. In July and August, it received $1 million in donations, mainly from two anonymous sources, enough to begin the first phase of the study. Much more will be needed to understand this complex illness and develop treatments for it.

戴维斯的目标是利用斯坦福的技术,并最终与其他人合作,以前所未有的方式研究ME/CFS。他已经招募了三位诺贝尔奖获得者和其他著名科学家加入开放医学基金会的咨询委员会,该基金会正在为该项目筹集资金。在7月和8月,它收到了100万美元的捐款,主要来自两个匿名资源,足以开始第一阶段的研究。要了解这种复杂的疾病并开发治疗方法,还需要更多的资金。

So far Davis has been unsuccessful in persuading the National Institutes of Health to provide funding.

到目前为止,戴维斯试图说服国家卫生研究院提供资金资助,但一直没有成功。

Davis and his team will start out by studying 20 to 30 severely ill patients like Whitney, who has been the test case. While his case is extreme, bed-bound patients are believed to make up about a quarter of those with ME/CFS. Very little is known about them, since they haven’t been able to come to labs to participate in studies.

戴维斯和他的团队将从研究20到30名像惠特尼这样的重病患者开始,惠特尼一直是这个测试案例的测试者。他的情况很极端,相信卧床的病人约占患ME/CFS患者的四分之一。人们对他们的了解很少,因为他们还没来得及到实验室参与研究。

Davis’s team will make home visits to collect blood, sweat, saliva and fecal samples. The samples will be analyzed with sophisticated technologies such as mass spectrometry (which measures the amount and type of chemicals in a sample) and DNA and RNA sequencing.

Davis的团队将要去患者家采集血液、汗液、唾液、粪便样本。用成熟技术进行分析这些样本,如检测质谱以及DNA和RNA序列。

“My plan is to collect more data on a group of patients than has ever been collected on a human being before, by orders of magnitude. . . . We’re going to be state-of-the-art on everything,” Davis says.

“我的计划是收集比以往任何时候都要多的一组病人的数据,数量级的。. . . 戴维斯说:“我们将成为最先进的一切。

By studying just the sickest people, he hopes to identify a more consistent set of characteristics than has emerged from previous studies of more-diverse patient groups lumped under the “chronic fatigue syndrome” heading.

他希望通过研究最有病的人群,找出一组比以往研究中更为一致的特征,这些研究将更多的患者群体归为“慢性疲劳综合征”类。

[‘How do you tell a kid he’s not going to grow up?’]

[你怎么告诉一个孩子他不会长大?’]

After that, Davis plans to conduct the same studies in ME/CFS patients who are only moderately ill — to see what characteristics they share with the severely ill group — and also in people with other fatiguing illnesses such as lupus and fibromyalgia, to identify what is unique about ME/CFS and to separate out abnormalities due to inactivity alone.

在那之后,戴维斯计划对那些只患有中度疾病的ME/CFS患者进行同样的研究,看看他们与重病组有什么共同的特征,以及患有其他疲劳疾病如狼疮和纤维肌痛的患者,确定ME/CFS的独特之处,并分离单独由于不活动引起的异常。

“What we’re trying to do initially is find a biomarker, something that shows a clear indication of something uniquely wrong. . . . That would help the patients a lot. It would mean that physicians could no longer deny that they’re sick,” Davis says.

戴维斯说:“我们最初要做的是找到一个生物标记物,它能清楚地显示出某种独特的错误。. . . 这对病人有很大帮助。这意味着医生们不能再否认自己生病了。

For some patients, ME/CFS starts suddenly, with an illness or a trauma from which they never fully recover. For others, like Whitney,the illness follows a series of ailments. He was healthy as a child but caught a bad case of mononucleosis in high school and had a spell of headaches and dizziness after a trip to Jamaica during college. He eventually recovered from both.

对于一些患者,ME/CFS突然开始,伴随着一种疾病或创伤,他们永远无法完全康复。对其他人来说,像惠特尼,这种病是伴随着一系列的疾病。他小时候很健康,但在高中时患上了严重的单核细胞增多症,在大学期间去牙买加旅行后头痛和头晕。他最终从两者中恢复过来。

He’d been in India for several months in 2006 when he began experiencing stomach pain, bloating and nausea. He returned weighing just 115 pounds on his 6-foot-3 frame. Then, two years later, he developed what seemed like a cold and never felt normal again.

2006年,他在印度呆了几个月,开始感到胃痛、腹胀和恶心。他6英尺3英寸的身躯重仅115磅。两年后,他患上了感冒,再也感觉不正常了。

“He went downhill from there,” his mother says.

他的母亲说:“从那时起他就走下坡路了。

[‘We refused to take our son home to die. We will fight with him.’]

[“我们拒绝带儿子回家去死。我们会和他一起战斗”]

By 2011, he could no longer care for himself. “Moving home was really devastating for him. . . . He’d worked so hard to be independent,” she says.

到了2011年,他再也不能照顾自己了。“搬回家对他来说真是毁灭性的打击。. . . 她说:“为了独立,他已经非常努力了”。

All along, he’d been seeing a series of doctors, most of whom told him they could find nothing wrong and suggested he was depressed.

一直以来,他都在看一系列的医生,大多数医生都告诉他他们没发现什么问题,并暗示他很沮丧。

In fact, says Andreas Kogelnik, the infectious-disease specialist who diagnosed Whitney with ME/CFS more than a year after he returned from India, “this was a vibrant, successful young man. . . . His only depression was that he had to stop doing the things he loved to do.”

传染病专家安德烈亚斯·科格尔尼克(Andreas Kogelnik)说,实际上,在惠特尼从印度回来一年多后诊断出他患有ME/CFS,“这是一个充满活力、成功的年轻人。. . . 他唯一的沮丧是他不得不停止做他喜欢做的事情。

“He has some of the classic symptoms that we talk about with ME/CFS, but in him they’re amplified 10 or 100 times,” adds Kogelnik, president and founder of the Open Medicine Institute, the research/clinical institution affiliated with the fundraising foundation.

筹款基金会附属的研究/临床机构开放医学研究所的所长兼创始人Kogelnik说,“他有一些慢性疲劳综合征的典型症状,不过他的症状比一般的该病患者放大了10倍甚至100倍”

Whitney has extremely low levels of several small molecules associated with energy metabolism. He also has three mutations in a gene that codes for an enzyme that helps convert folate and vitamin B12 to their active forms, a process necessary for both metabolic and immune function.

惠特尼的几种能量代谢小分子的参数比正常指标低太多。他也有三个酶编码的基因突变,这种酶有助于把叶酸和VB12转成他们的活性体,这个过程对于代谢和免疫功能都是必要的。

Such mutations are present in about 5 to 10 percent of the general population, but Kogelnik has been finding them at much higher rates among his ME/CFS patients.

这种突变存在于大约5%到10%的普通人群中,但是Kogelnik在他的ME/CFS患者中发现的突变率要高得多。

Several definitions for “CFS” and “ME” have been developed over the years, but none has been deemed ideal, in part because they rely on self-reported symptoms rather than objective measures. Davis served on the IOM panel, which was convened in 2014 to conduct a scientific review aimed at redefining the illness.

多年来,对“CFS”和“ME”已经有了一些定义,但没有一个被认为是理想的,部分原因是它们依赖于自我报告的症状,而不是客观的测量。戴维斯曾在2014年召开的国际移民组织专家小组会议上任职,该小组旨在对疾病进行重新定义。

The 282-page report issued in February gave ME/CFS a new definition, which still hinges on reported symptoms but places central importance on “post-exertional malaise,” a crash that patients experience after even the slightest physical or even mental exertion, leaving them exhausted and feeling ill for days or weeks.

2月份发布的这份282页的报告给慢性疲劳综合症作了一个新的定义,这个定义仍然取决于报告的症状,但最重要的是“劳累后的不适”,这是一种即使是最轻微的身体或精神劳累,也会让患者在数天或数周内感到疲惫和不适的崩溃。

Small exertions

一些小动作

Such exertion can be a short walk, brushing one’s teeth or, in Whitney’s case, simply sensing someone else in the room.

这种劳累可以是短暂的散步,刷牙,或者,在惠特尼的情况下,只是感觉到房间里的其他人。

Despite numerous previous studies showing biological abnormalities that could potentially be tested for, Davis says that the panel didn’t recommend an objective test as part of the diagnosis because most of those studies have been small and poorly funded and haven’t been replicated. And the patient samples have been defined in various ways, giving rise to inconsistent findings. Those are the problems he wants to overcome with the new project.

尽管之前有很多研究显示生物异常可能被检测出来,戴维斯说,专家组不建议将客观检测作为诊断的一部分,因为这些研究大多规模小,资金不足,没有被复制。而且病人样本的定义也各不相同,导致结果不一致。这些是他想用新项目克服的问题。

The National Institutes of Health allocates only about $5 million a year to ME/CFS research, slightly less than the amount it devotes to hay fever. Davis, who has submitted two applications for research funds without success, says he’ll try again for subsequent stages of the project.

美国国立卫生研究院(National Institutes of Health)每年仅为ME/CFS研究拨款约500万美元,略低于其用于花粉热的金额。戴维斯已经提交了两份研究基金申请,但都没有成功,他说他会在项目的后续阶段再试一次。

Asked about the denial, the NIH responded by e-mail: “Unfortunately, in challenging budget times, NIH turns away many potentially meritorious research applications.”

国家卫生局拒绝的信中说:“不幸的是,在预算困难的时期,国家卫生研究院拒绝了许多潜在的优秀研究申请。

Nonetheless, Davis says, “I’m in it for the long term. I’m not going to quit.”

尽管如此,戴维斯说,“我是长期的。我不会放弃的。”

‘Grieving . . . like a death’

“悲伤”。就像一场死亡'

As Whitney’s health declined, his sister, Ashley Davis, would stop by his apartment to help him with household tasks. After he moved back home, she’d drive him to doctor’s appointments. But once he could no longer speak, she had to stop going into his room because it became too upsetting for her.

Whitney的健康每况愈下,他的妹妹Ashley Davis会到他的公寓帮他做家务。在他搬回家之后,她会载他去看医生。但是,一旦他不再会讲话,她不得不停止进入他的房间,因为对她来说,这太令人不安了。

“I used to talk to him every single day, and I now can’t even make eye contact or give him a hug. . . . He’s still there, but I’m grieving for him like a death,” Ashley, 27, said at the fundraiser.

27岁的Ashley在募捐会上说“我曾经每天跟他说话,而现在我甚至不能看他一眼或者给他一个拥抱……他仍然在那儿,但是我为他感到悲伤,就像死亡一样。

“He used to say, when he could still talk, that he wished he had AIDS or cancer, because then people wouldn’t tell him that there was nothing wrong with him and he would at least know what was wrong with him.”

“在他还能说话的时候,他曾经说他宁可得的是艾滋或者癌症,因为那样人们就不会告诉他他没毛病了,而且他至少会知道自己哪里除了毛病了。

Tucker is a Bethesda-based freelance journalist specializing in medicine and health.

塔克是贝塞斯达的一名自由记者,专攻医药和健康。

以下是我的回复:

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肾衰、尿毒症,医院建议做肾透析,艾灸了9天,浑身水肿消了——孝心感动天

艾灸心得

温敷

梦的解析——中医释梦初探

梦境反映出来的健康问题

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宝宝夜里磨牙小验方一例,立竿见影

口腔溃疡怎么治?——这里分享一下我调理的经验

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过敏性鼻炎的特效药

医案:过敏性鼻炎的调理

医案:过敏性鼻炎的调理

医案:一副中药搞定耳朵痛

典型的小柴胡汤证及附加问题的调理

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常用感冒中成药的成份分析及应用

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医案:宝宝感冒清鼻涕黄鼻涕夹杂并有咳嗽的调理

医案:宝宝咳嗽两三个月的调理

3岁宝宝鼻塞流鼻涕咳嗽打呼噜,艾灸之后,没好,用了2付中药配合蒜泥贴脚心,基本好了

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有些病是补出来的,你信吗?

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脾虚就用八珍粉——我是这样用八珍粉的

忌口的重要性

寒性凉性温性和热性食物

应该怎样煎药、煮药和服用中药

红绿色盲真的是基因问题吗?——真相在这里

《黄帝内经》教你如何处理狂犬病

月经不来了怎么办?——闭经了这样操作

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医案:阴虚的调理

医案:扁桃体炎喉咙发炎出院后的调理

喉咙疼、扁桃体肿大一付药搞定

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医案:急性咽喉炎的调理

医案:新产妈妈痔疮调理

医案:痔疮的调理

家庭生活中的智慧

心地安然,你将获得无上能量

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