评央视4台《中华医药》节目：打破死亡的预言
http://www.100md.com
2007年9月14日
王澄医生 2007年9月9日
我在美国纽约通过卫星电视两次收看到“打破死亡的预言”节目。金豆银豆的母亲薛芙蓉女士不仅是个伟大的中国母亲，而且算得上一个有爱心有智慧有能力的康复医学工作者。如果中国的65万患有进行性肌营养不良的病人都能有像薛芙蓉这样的母亲和像薛芙蓉这样的认真负责的康复医学工作者，那么中国残疾人一定比世界上任何一个国家的残疾人活得更幸福。这些话不是我这篇文章的主要目的。
2006年以前的《中华医药》栏目，以“播撒传统医药文化，润泽四海生命健康”为名，宣传中医的愚昧，落后，怪异和“神奇”，坑害了千千万万中国人。是全世界打着科学旗号的电视专栏中最不科学的一个。比如，我曾看到《中华医药》报道，给健康人“洗大肠”，称之为“帮助排除毒素”。有一点医学常识的人都知道，大肠里的“糟粕”自己就能排出来。“洗”和“不洗”的生理效果是一样的。但是，把水通过肛门灌进大肠就有可能引起大肠破裂，继发腹腔感染而死亡。这种“排毒时髦”在人类世界从未听说过，只有中国的中医才能狗急跳墙胡编乱造出来。
, 百拇医药
我认为，如果把《中华医药》栏目停播了，全世界人民的电视科学教育水平底线就会大大上升。我听说央视的某负责人对气功情有独锺。这种素质的人如果还在“台”上，全国人民只能认栽。
“打破死亡的预言”这个节目，如果放在社会类栏目，无疑是个很好的具有正面鼓励意义的节目。但是放在“医学科学”类，问题就来了。有两个问题。
一.金豆银豆的进行性肌营养不良的诊断可能有问题
二.“13岁时全身瘫痪”应当怎样解读？
一.金豆银豆的进行性肌营养不良的诊断可能有问题
进行性肌营养不良的英文名叫Duchenne Muscular Dystrophy。它的病因是患者的肌细胞膜上缺少一种蛋白。因为缺少这种蛋白，病人的肌肉就渐渐破裂减少，临床表现为肌肉萎缩无力。医学家给这种蛋白起个名字，叫做“肌营养不良蛋白”dystrophin。患有进行性肌营养不良(Duchenne病)的病人很少能活过20岁。到了胸腹的呼吸肌肉无力的时候，病人就会因为呼吸衰竭而死亡。
, http://www.100md.com
理论上，Duchenne病的病理定义是肌肉里几乎没有肌营养不良蛋白。正常人有100%肌营养不良蛋白含量(蛋白的名字有点反意)。Duchenne病人比正常量的3%还要少。这种病有一个变种，就是虽然有人肌营养不良蛋白明显减少，但是比3%多。它另外起了个名字，叫Becher Muscular dystrophy。 Becher病人的肌营养不良蛋白比正常人少很多，但是比Duchenne的3%要多。
缺少肌营养不良蛋白的肌细胞膜是不健康的细胞膜。细胞膜的完整性有缺陷。肌肉很容易随着肌肉收缩的次数增加而破裂死亡。不幸的是，人类的肌肉细胞不能再生。死一个就少一个。所以，Duchenne病人3-4岁以前肌力还好，越长大越不好。细胞膜越破得多，肌肉死得越多，肌力越差。很明显，肌肉破裂的程度和数量与细胞膜上肌营养不良蛋白的含量(百分比)成反比。Becher病人如果有20%的肌营养不良蛋白就要比Duchenne病人只有1-2%的肌营养不良蛋白，临床表现和预后要好太多。死亡年令会大大推迟。
, 百拇医药
我看到金豆银豆20岁的时候还能够上大学，随意进行语言交流，说明呼吸功能很好。呼吸肌肉死亡的不很多。我一方面为他们哥俩高兴，另一方面为诊断他们为Duchenne病的医生感到难为情，因为医生没有告诉金豆银豆还有Becher病的可能。金豆银豆很可能是Becher病而不是Duchenne病。也就是说金豆银豆体内的肌营养不良蛋白可能高于3%。如果金豆银豆得的不是Duchenne病，活过20岁也就不是奇迹了。
二.“13岁时全身瘫痪”应当怎样解读？
严格地说，“13岁全身瘫痪”是个不准确的说法。现代医学不用这种概念。准确的说法是，Duchenne 的病人到了12岁左右就会因为走路困难要用轮椅了。用轮椅不等于老百姓说的“全身瘫痪”， Duchenne病人最初用轮椅的原因是因为不能走长路。比如，病人可以在家里从卧室走到卫生间，但不能从家里走到社区小商店。而每个人的社会接触是正常精神心理卫生所必须的，因此，医生要鼓励Duchenne病人坐轮椅外出。比如去社区小商店买日用品。
, 百拇医药
结束语：
在国家级的电视科学栏目中，希望现代医学水平再高一点儿，中医就少一点儿能钻的空子。“打破死亡的预言”，除了题目以外，是个很好的节目。错误在于它的解释，这不是科学的突破，而是一个母亲面对巨大困难所表现出来的不屈服。(这个节目里没有提到中医。)每一次中医以为的“奇迹”，其实都是现代医学早都知道了的事，中医刚刚只知道一点儿，就以为不得了了。我劝中医今后最好不要再说“奇迹”两个字，把这两个字从中医字典中抹掉。还有，“特殊方法能攻克这世界医学界都为之烦恼的顽症”，这些都是中医50多年来无知的语录，以后少说。
2006年以前的《中华医药》是不讲科学的中华民族的耻辱记录。
(完)
附录：(给老百姓读的有关Duchenne病的科普文章)。
Duchenne Muscular Dystrophy - Biology Research Paper
, 百拇医药
Submitted by pgilb on Wed, 2006-08-23 10:06.
Imagine being a parent and discovering that your child won't be able to walk by the age of 12 and won't live past the age of 20. This has become a reality for many parents as they find out that their child has a form of muscular dystrophy. This particular type of muscular dystrophy is referred to as Duchenne Muscular Dystrophy, which is a genetically inherited disorder that is the most common and severe of all muscular dystrophies. It is found in 1 of every 3,500 males and is characterized by progressive muscle wasting. It is caused by the lack of dystrophin, which is a protein found in the cell membrane of muscles.
, 百拇医药
One early clinical sign of the disease is the child showing a late start in walking and sometimes they are referred to as a late bloomer. Usually when the child walks they have a waddling motion and sometimes they walk up on their toes. Usually, hypertrophy, or enlarging of the muscles, especially in the calves is noticed. However, the hypertrophy is actually caused by adipose (fat) tissue, which replaces the muscle tissue. Another clinical sign of DMD is small amounts of mental retardation or learning disabilities. Although this is not apparent until the child is older, it is a common pattern that is found in children with DMD. There have been many studies done to determine what exactly causes the mental retardation.
, 百拇医药
Duchenne's Muscular Dystrophy is a recessive genetic disorder caused by a deficiency of the protein dystrophin, which is found in muscle cells. This disorder is usually only found in males. It has very rarely been found in females because they have two X chromosomes and the disease is recessive. They pass it on to one half of their sons and to one half of their daughters who become carriers. In the possibility that the male with DMD reproduces, his sons would not be infected however is daughters would be 100% carriers of the disease.
, http://www.100md.com
Even though DMD is present from the initial stages of fetal development, physical signs are not present until 18 months to 4 years of age. In addition to the clinical signs mentioned above, a child with DMD is unable to climb or pull itself up from the floor. Between the ages 3 and 7, a child with DMD may show signs of improvement, but that is due to natural growth and development. In school they start to fall behind in being able to keep up with their peers in physical activity. This sometimes leads to them being called clumsy or lazy. When the child is around 9 years, the disease starts to progress rapidly and by age 12, they can no longer walk on their own. In the late stages, a significant loss of muscle tissue is noticeable. There may also be an increase of the curvature of the spine. When they are brought to the doctor, a series of tests are done to determine the problem. When a biopsy is done, the doctors find that the muscle tissue has hypertrophied with adipose tissue. Shortly after the cells have become full of adipose tissue they die. Unlike other tissues of the body, muscle and nerve tissues cannot reproduce. An individual is born with a specific amount of muscle and nerve cells. Once they die, they cannot be regenerated. This is bad news for people with DMD and they usually die around the age of 20 due to the diaphragm or heart muscle degenerating.
, 百拇医药
There are several ways to test for Duchenne Muscular Dystrophy. The first is a blood test, called the serum creatine kinase test, looking for an increased amount of creatine kinase. Normally there is only a small amount of creatine kinase in the bloodstream. All muscles produce creatine kinase and release small amounts, however when the muscle cells tear from contracting, the creatine kinase leaks into the bloodstream. The second test that could be done is an electromyopathy test. This involves putting a small needle in the skin and recording the pattern of electricity. When muscles contract, there is an electric current flowing through the tissue. The third way to test for the disease is a muscle biopsy. In this process a piece of muscle is removed and examined under the microscope. When the cells are seen as enlarged and filled with adipose tissue then the disease is prevalent. Or another sign is if the muscle cells are dead. The last way to test is direct DNA testing. While the child is still in the womb it can be tested for the disease by doing an amniocentesis. In this procedure, fluid and fetal cells are taken out from the amniotic layer that surrounds the fetus. Then the cells are checked for a defect or genetic mutation in the DNA.
, http://www.100md.com
At this time, there are many research studies being done to try and find a cure for Duchenne Muscular Dystrophy. Unfortunately, a definite cure has not been found yet. Even though there is no cure for Duchenne Muscular Dystrophy, there are places people with disease can go to get help. There are several Support Groups out there to help people with DMD. The Muscular Dystrophy Association or MDA is probably the largest support group. They offer financial and emotional support as well as a vast information site for all of the different muscular dystrophies. They fund research projects that are aimed at finding a cure for the diseases and they also publish their own bimonthly magazine called “Quest.” They can be found on the Internet at www.mdausa.org. Another support group is The Parent Project for Muscular Dystrophy Research. Like the MDA, they also support families with DMD and fund research projects.
, 百拇医药
Duchenne Muscular Dystrophy is a severe form of muscular dystrophy that causes progressive muscle degeneration. Its main cause is the lack of the protein dystrophy that is necessary for the muscles to function properly. It is tough for the victims and their families because there is no definite cure and they usually don't live past the age of 20. Hopefully in the future, technology will enable researchers to be able to find a cure that will be a 100 percent effective when used. Until that time comes, all DMD victims can do is wait and hope., http://www.100md.com
我在美国纽约通过卫星电视两次收看到“打破死亡的预言”节目。金豆银豆的母亲薛芙蓉女士不仅是个伟大的中国母亲，而且算得上一个有爱心有智慧有能力的康复医学工作者。如果中国的65万患有进行性肌营养不良的病人都能有像薛芙蓉这样的母亲和像薛芙蓉这样的认真负责的康复医学工作者，那么中国残疾人一定比世界上任何一个国家的残疾人活得更幸福。这些话不是我这篇文章的主要目的。
2006年以前的《中华医药》栏目，以“播撒传统医药文化，润泽四海生命健康”为名，宣传中医的愚昧，落后，怪异和“神奇”，坑害了千千万万中国人。是全世界打着科学旗号的电视专栏中最不科学的一个。比如，我曾看到《中华医药》报道，给健康人“洗大肠”，称之为“帮助排除毒素”。有一点医学常识的人都知道，大肠里的“糟粕”自己就能排出来。“洗”和“不洗”的生理效果是一样的。但是，把水通过肛门灌进大肠就有可能引起大肠破裂，继发腹腔感染而死亡。这种“排毒时髦”在人类世界从未听说过，只有中国的中医才能狗急跳墙胡编乱造出来。
, 百拇医药
我认为，如果把《中华医药》栏目停播了，全世界人民的电视科学教育水平底线就会大大上升。我听说央视的某负责人对气功情有独锺。这种素质的人如果还在“台”上，全国人民只能认栽。
“打破死亡的预言”这个节目，如果放在社会类栏目，无疑是个很好的具有正面鼓励意义的节目。但是放在“医学科学”类，问题就来了。有两个问题。
一.金豆银豆的进行性肌营养不良的诊断可能有问题
二.“13岁时全身瘫痪”应当怎样解读？
一.金豆银豆的进行性肌营养不良的诊断可能有问题
进行性肌营养不良的英文名叫Duchenne Muscular Dystrophy。它的病因是患者的肌细胞膜上缺少一种蛋白。因为缺少这种蛋白，病人的肌肉就渐渐破裂减少，临床表现为肌肉萎缩无力。医学家给这种蛋白起个名字，叫做“肌营养不良蛋白”dystrophin。患有进行性肌营养不良(Duchenne病)的病人很少能活过20岁。到了胸腹的呼吸肌肉无力的时候，病人就会因为呼吸衰竭而死亡。
, http://www.100md.com
理论上，Duchenne病的病理定义是肌肉里几乎没有肌营养不良蛋白。正常人有100%肌营养不良蛋白含量(蛋白的名字有点反意)。Duchenne病人比正常量的3%还要少。这种病有一个变种，就是虽然有人肌营养不良蛋白明显减少，但是比3%多。它另外起了个名字，叫Becher Muscular dystrophy。 Becher病人的肌营养不良蛋白比正常人少很多，但是比Duchenne的3%要多。
缺少肌营养不良蛋白的肌细胞膜是不健康的细胞膜。细胞膜的完整性有缺陷。肌肉很容易随着肌肉收缩的次数增加而破裂死亡。不幸的是，人类的肌肉细胞不能再生。死一个就少一个。所以，Duchenne病人3-4岁以前肌力还好，越长大越不好。细胞膜越破得多，肌肉死得越多，肌力越差。很明显，肌肉破裂的程度和数量与细胞膜上肌营养不良蛋白的含量(百分比)成反比。Becher病人如果有20%的肌营养不良蛋白就要比Duchenne病人只有1-2%的肌营养不良蛋白，临床表现和预后要好太多。死亡年令会大大推迟。
, 百拇医药
我看到金豆银豆20岁的时候还能够上大学，随意进行语言交流，说明呼吸功能很好。呼吸肌肉死亡的不很多。我一方面为他们哥俩高兴，另一方面为诊断他们为Duchenne病的医生感到难为情，因为医生没有告诉金豆银豆还有Becher病的可能。金豆银豆很可能是Becher病而不是Duchenne病。也就是说金豆银豆体内的肌营养不良蛋白可能高于3%。如果金豆银豆得的不是Duchenne病，活过20岁也就不是奇迹了。
二.“13岁时全身瘫痪”应当怎样解读？
严格地说，“13岁全身瘫痪”是个不准确的说法。现代医学不用这种概念。准确的说法是，Duchenne 的病人到了12岁左右就会因为走路困难要用轮椅了。用轮椅不等于老百姓说的“全身瘫痪”， Duchenne病人最初用轮椅的原因是因为不能走长路。比如，病人可以在家里从卧室走到卫生间，但不能从家里走到社区小商店。而每个人的社会接触是正常精神心理卫生所必须的，因此，医生要鼓励Duchenne病人坐轮椅外出。比如去社区小商店买日用品。
, 百拇医药
结束语：
在国家级的电视科学栏目中，希望现代医学水平再高一点儿，中医就少一点儿能钻的空子。“打破死亡的预言”，除了题目以外，是个很好的节目。错误在于它的解释，这不是科学的突破，而是一个母亲面对巨大困难所表现出来的不屈服。(这个节目里没有提到中医。)每一次中医以为的“奇迹”，其实都是现代医学早都知道了的事，中医刚刚只知道一点儿，就以为不得了了。我劝中医今后最好不要再说“奇迹”两个字，把这两个字从中医字典中抹掉。还有，“特殊方法能攻克这世界医学界都为之烦恼的顽症”，这些都是中医50多年来无知的语录，以后少说。
2006年以前的《中华医药》是不讲科学的中华民族的耻辱记录。
(完)
附录：(给老百姓读的有关Duchenne病的科普文章)。
Duchenne Muscular Dystrophy - Biology Research Paper
, 百拇医药
Submitted by pgilb on Wed, 2006-08-23 10:06.
Imagine being a parent and discovering that your child won't be able to walk by the age of 12 and won't live past the age of 20. This has become a reality for many parents as they find out that their child has a form of muscular dystrophy. This particular type of muscular dystrophy is referred to as Duchenne Muscular Dystrophy, which is a genetically inherited disorder that is the most common and severe of all muscular dystrophies. It is found in 1 of every 3,500 males and is characterized by progressive muscle wasting. It is caused by the lack of dystrophin, which is a protein found in the cell membrane of muscles.
, 百拇医药
One early clinical sign of the disease is the child showing a late start in walking and sometimes they are referred to as a late bloomer. Usually when the child walks they have a waddling motion and sometimes they walk up on their toes. Usually, hypertrophy, or enlarging of the muscles, especially in the calves is noticed. However, the hypertrophy is actually caused by adipose (fat) tissue, which replaces the muscle tissue. Another clinical sign of DMD is small amounts of mental retardation or learning disabilities. Although this is not apparent until the child is older, it is a common pattern that is found in children with DMD. There have been many studies done to determine what exactly causes the mental retardation.
, 百拇医药
Duchenne's Muscular Dystrophy is a recessive genetic disorder caused by a deficiency of the protein dystrophin, which is found in muscle cells. This disorder is usually only found in males. It has very rarely been found in females because they have two X chromosomes and the disease is recessive. They pass it on to one half of their sons and to one half of their daughters who become carriers. In the possibility that the male with DMD reproduces, his sons would not be infected however is daughters would be 100% carriers of the disease.
, http://www.100md.com
Even though DMD is present from the initial stages of fetal development, physical signs are not present until 18 months to 4 years of age. In addition to the clinical signs mentioned above, a child with DMD is unable to climb or pull itself up from the floor. Between the ages 3 and 7, a child with DMD may show signs of improvement, but that is due to natural growth and development. In school they start to fall behind in being able to keep up with their peers in physical activity. This sometimes leads to them being called clumsy or lazy. When the child is around 9 years, the disease starts to progress rapidly and by age 12, they can no longer walk on their own. In the late stages, a significant loss of muscle tissue is noticeable. There may also be an increase of the curvature of the spine. When they are brought to the doctor, a series of tests are done to determine the problem. When a biopsy is done, the doctors find that the muscle tissue has hypertrophied with adipose tissue. Shortly after the cells have become full of adipose tissue they die. Unlike other tissues of the body, muscle and nerve tissues cannot reproduce. An individual is born with a specific amount of muscle and nerve cells. Once they die, they cannot be regenerated. This is bad news for people with DMD and they usually die around the age of 20 due to the diaphragm or heart muscle degenerating.
, 百拇医药
There are several ways to test for Duchenne Muscular Dystrophy. The first is a blood test, called the serum creatine kinase test, looking for an increased amount of creatine kinase. Normally there is only a small amount of creatine kinase in the bloodstream. All muscles produce creatine kinase and release small amounts, however when the muscle cells tear from contracting, the creatine kinase leaks into the bloodstream. The second test that could be done is an electromyopathy test. This involves putting a small needle in the skin and recording the pattern of electricity. When muscles contract, there is an electric current flowing through the tissue. The third way to test for the disease is a muscle biopsy. In this process a piece of muscle is removed and examined under the microscope. When the cells are seen as enlarged and filled with adipose tissue then the disease is prevalent. Or another sign is if the muscle cells are dead. The last way to test is direct DNA testing. While the child is still in the womb it can be tested for the disease by doing an amniocentesis. In this procedure, fluid and fetal cells are taken out from the amniotic layer that surrounds the fetus. Then the cells are checked for a defect or genetic mutation in the DNA.
, http://www.100md.com
At this time, there are many research studies being done to try and find a cure for Duchenne Muscular Dystrophy. Unfortunately, a definite cure has not been found yet. Even though there is no cure for Duchenne Muscular Dystrophy, there are places people with disease can go to get help. There are several Support Groups out there to help people with DMD. The Muscular Dystrophy Association or MDA is probably the largest support group. They offer financial and emotional support as well as a vast information site for all of the different muscular dystrophies. They fund research projects that are aimed at finding a cure for the diseases and they also publish their own bimonthly magazine called “Quest.” They can be found on the Internet at www.mdausa.org. Another support group is The Parent Project for Muscular Dystrophy Research. Like the MDA, they also support families with DMD and fund research projects.
, 百拇医药
Duchenne Muscular Dystrophy is a severe form of muscular dystrophy that causes progressive muscle degeneration. Its main cause is the lack of the protein dystrophy that is necessary for the muscles to function properly. It is tough for the victims and their families because there is no definite cure and they usually don't live past the age of 20. Hopefully in the future, technology will enable researchers to be able to find a cure that will be a 100 percent effective when used. Until that time comes, all DMD victims can do is wait and hope., http://www.100md.com