父亲让我把群友发的网页翻译下，不太有时间，先发一半吧。明天再发后一半。
http://hereandnow.wbur.org/2012/05/21/als-diy-trials
看前先看过来：
第一， 不排除国外也有药托
第二， 请在正式官方证实疗效前不要私自“乱动手”
这些消息告诉我们，ALS有希望，有人在关注，请不要乱来给家人添乱
第三， 再度重申，咱不是TMD药托，这些道听途说的只能证明有些研究在做在进步，其它什么也说明不了，内心的坚强+家人朋友的支持胜过一切，记住，你不是一个人！
文中专用词语解译：
The Wall Street Journal：“华尔街日报”一份报纸，发行量……让他的发行量见鬼去吧，这街里人随便出来几个把财产捐出来可能ALS就有药了
Here & Now： “这里和现在”，CBC的电视节目
Neuraltus：药品公司
NP001：上面那公司出品的针对ALS的药物
DIY：自己动手做
ALS Patients Conduct DIY Drug Trials
肌萎缩侧索硬化症患者进行自己动手做药物试验
A group of people suffering from Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease have started cooking up their own drug therapies in do-it-yourself drug trials.
一群人患有肌萎缩侧索硬化症（ALS）或鲁盖瑞氏症已经开始自己动手做药物试验
Frustrated with the slow pace of clinical drug trials, they say they don’t have the luxury of waiting.
令人沮丧的缓慢临床药物试验，他们说他们没有时间去奢侈的等待。
ALS, which affects about 30,000 Americans, causes cell damage in the brain and spinal cord, and gradually robs people of the ability to move, speak and eventually to breathe on their own. Life expectancy is about two to five years after diagnosis.
肌萎缩侧索硬化症，它影响到约30000的美国人，造成细胞损伤的大脑和脊髓，并逐步剥夺人的移动能力，语言能力以至呼吸能力。确诊后寿命多为二到五年。
The Wall Street Journal reported that the patients have figured out that sodium chlorite is the main ingredient in NP001, a compound made by Neuraltus Pharmaceuticals.
据“华尔街日报”报道，患者发现由neuraltus药品公司生产的np001的主要成分是亚氯酸钠。
The patients have started either drinking or injecting themselves with sodium chlorite on their own, and they’re recording their progress on websites, including
Patients Like Me.
患者们开始饮用或自己注射亚氯酸钠，在网站上记录他们的进展情况，其中包括“我这样的患者”在内。
Ben Harris, 45, of Bloomington, Indiana, is one of those patients. He was diagnosed with ALS last year, and was part of the Neuraltus clinical trial. When that ended, he decided to join the DIY trial, and began injecting himself with sodium chlorite.
Since Harris has difficulty speaking, Here & Now producer Kevin Sullivan interviewed him online. Part of that transcript is below.
Ben Harris(本·哈里斯-以下简称本)，45岁，布卢明顿，印第安娜人，是其中的一个病人。去年被诊断为肌萎缩侧索硬化症，也参与了neuraltus公司的临床试验。当结束了，他决定开始自己动手做试验，开始给自己注射亚氯酸钠。
因为哈里斯说话困难，”这里和现在”的制作人Kevin Sullivan(凯文·沙利文—以下简称凯文)在线采访了他。下面开始是部分采访记录。
Here & Now Web Chat With ALS Patient Ben Harris”这里和现在”网络采访ALS患者Ben Harris(本·哈里斯)
Kevin: Ben, first of all, thanks for agreeing to take part in this interview.
凯文:本,首先,非常感谢你能接受我们采访.
Ben: My pleasure.
本:我的荣幸.
Kevin: I know this is a very personal question, but can you start off by describing what your condition is like now? For example, you can obviously type, but what are your physical limitations now?
凯文:我知道这是个非常私人的问题,但是能请你描述下现在个人是什么情况吗?比如,你可以键盘点击打字,那你有什么生理方面的不便吗?
Ben: Please don’t hesitate to ask any questions, no matter how personal they might seem. My life is an open book. At this point I am at the tail end of being able to communicate verbally and being able to eat. I would say in a few months I will not be able to utter a word, and I will need to have a feeding tube placed. All my muscles are affected, walking is slow and climbing stairs is getting a little challenging. I have to exercise caution. One might not even be able to tell by observing me that there is anything wrong in those areas other than speech, but it takes a great deal of effort to appear normal.
本: 你可以问我任何问题，不管是否属于个人隐私。我的人生是一本翻开的书。在书的结尾我还能够用语言交流和进食。我想说的是在几个月后我将无法再说出一个字，我必需要有一个喂养管置入体内。我浑身的肌肉都受到了影响，步履缓慢而爬楼梯也越来越有挑战性。我要谨慎。观察采访我一晚上不能说明什么问题，除了我的语言能力之外，实际上我在努力维持使自己看来似乎正常。
Kevin: After the Neuraltus clinical trial for NP001 ended you started taking sodium chlorite on your own, injecting yourself with it. Are you still doing that and if so, do you feel it’s been effective?
凯文：在Neuraltus的 NP001临床试验结束后，你开始为自己注射亚氯酸钠，。你还在做，你觉得它是有效的吗？
Ben: Yes I am. Although the positive effect of sodium chlorite did begin to wear off near the end of the NP001 trial, and it seems to have little effect now, other than a possible slowing of my disease, I did have one hint that it may still be helping about one month ago. After my one of my self infusions, my swallowing improved, just as it had done in the beginning and early part of the study. This lasted for about one week and then faded.
本：是的。虽然亚氯酸钠的作用是在NP001试验接近结束阶段开始消失。而现在感觉似乎已经没有什么效果。但是，只要有可能延缓我的症状就要尝试。一个月前我真的感觉对我有所帮助。有次自我注射后，我吞咽好转，如同在试验开始时那样。这样持续了大约一个星期，然后失去作用。
I was just about to give up on it and this event has me determined to stick with it as long as I am able.
当时的我正要放弃，这一发现使我决定一直坚持下去。
Kevin: Do you think there’s a possibility you could be chasing ghosts by taking the sodium chlorite, hoping for something that might not be there?
凯文：你真的认为只要继续注射亚氯酸钠就有可能实现一些不可能实现的事情吗？
Ben:: Certainly, however, sodium chlorite is different from any other substance tested for ALS, either formally or informally, in that it has actually improved the status of those who took it, albeit temporarily. Nothing has ever done that.
本：当然了。不过，亚氯酸钠不同于其他任何ALS测试药品，无论正式的或非正式的，实际上有了相当的积极作用，虽然是暂时的，这是其它药物没有做到的。
Kevin: You’re sharing the results of taking sodium chlorite by taking part in an ad-hoc study, where you share your information on a website called Patients Like Me. How do you hope that information will be used? And do you feel that the analysis of that information could end up helping you?
凯文：你注射亚氯酸钠并参加一个特设的研究，在网站“我这样的患者” 分享你的信息。你希望这些信息被如何使用？你觉得所得到的信息数据最后可以回馈帮助到你吗？
待续
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发表于 2012-5-24 21:06:30
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发表于 2012-5-24 21:50:40
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