香港《南华早报》对奇迹网的报道

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<p>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; 香港《南华早报》是一份英文报纸，在大陆不是很好买，仅在涉外机构可以看到，我也没有买到报纸，仅有一份记者发来的当日电子版，文章已经刊发，有兴趣的病友可以看看，这也是对奇迹网的一次鼓励，我们会继续坚定的走下去……祝福每一位奇迹网的病友，平安健康！</p><p><br/></p>

[此贴子已经被作者于2008-3-25 0:16:34编辑过]

jimmy112199

以下译文是本人利用在线翻译系统整段翻译的,与专业翻译相比有较大出入.如有疑问请细读原文. 朋友互助--病人自助团体填补大陆医疗咨询的空白 记者：乔伊刘 2008年3月18日 上海地产执行官伊曼纽王，两年前寻求医生的意见的努力，对治疗他的母亲的肺癌患者痛苦的。无论哪个医生，他去多久，他等了一个任命，没有人有空闲，他10多分钟。  他说, "医生常常看到约40例患者，在早上。可偏偏又没有花太多时间对你,"       王转向互联网和单位加入了即时通信集团成立了信息共享之间的肺癌患者，但，这也证明了不足之处。所以去年他创建了一个网上论坛， 51qiji （这在普通话听起来像是： "我希望有一个奇迹" ，） ，以提供一个渠道，为肺癌患者和他们的家庭，帮助对方。        病人自助团体，为疾病，如血友病和癌症如雨后春笋般在大陆方面，有力地签署的悲惨状态，其医疗制度。 51qiji.com ，举例来说，已登记的约3000名成员在过去的一年里。 许多采用姓名,如妈妈健康， 救父涂存，要坚强  等 - 显示了他们心态. 通过共享病历，互通信息，新的药物和有效的治疗方法，并提供鼓励下，病人和他们的家庭，希望以最有限的医疗资源和支持对方为自己对抗疾病。       "我们成立了自助小组中，企图打破目前的医疗信息壁垒" ，王， 30多岁的财产规划师。 "大部分成员是晚期肺癌患者，约有90 ％的人将不会活太久。也许正是这种绝望的局面，引起火花，他们坚强的意志生存"        肺癌是1号杀手疾病于大陆。在2005年大约有50万人被查出有肺癌，而且数目还在不断增长26.9 ％ 。医学专家属性率高，肺癌主要是空气污染和普遍吸烟（两列的，中国的三名男子烟雾） 。非正式\估计，大 陆预计到2025年，肺癌患者  将达到100万。        由于内地保健分布不均，小城镇和村庄的患者往往不能得到足够的治疗- 这解释了为什么一半51qiji的成员来自第二或第三级城市。许多成员来自大城市还签署了在搜索的医学意见，为亲戚住在偏远地区。 王，举例来说，是寻求帮助他的母亲，她住在一个小村庄，在安徽等地       通过他的寻求，他意识到，医师在他的村庄可能不知道最新的治疗方法-无听过易瑞沙，一种新的药物，医生在上海被利用为持久性晚期肺癌。        他开始阅读起来，并征询专家，在上海对病，张贴他的调查结果放在网上论坛。感谢一切为他的研究，王研判，他可能更清楚，因为很多病医生在顶级医院的小城市。        论坛成员方面分享这些信息和经验交流，因为它最宝贵的功能。一个主题开始，去年5月在讨论如何应付各种问题，当使用新的药物对非小细胞肺癌，已被超过20000倍，并仍在继续增长。部分委员的意见后，由内地专家和其他人员有翻译的最新研究论文，从国外。        医生承认自助团体如51qiji.com可以有所帮助，但警告说，它的危险，盲目采取疗法提供线上。信息可以是不可靠的和误导之嫌，而且厂商可以尝试推销药品网上的幌子下，患者分享经验。        "不同的病人需要不同的治疗方法，你不能保证治疗的工作，别人才会有效，对你说： "王家，一名医生在北京肿瘤医院。 "首先必须咨询你的医生”。 伊曼纽王股份的忧虑，并强调在他的网站上说，病人应征询专家的治疗提供了网上才尝试。 他已尝试招聘同情医师提供线上辅导但均未见成效.只有一名医生同意给予一些意见，并只能作为游客到了座谈会。 "医生怕麻烦" ，他说。        对一些参观者,论坛是更有价值的一个来源,道义上的支持，在对抗癌症。苏梨园，一名主妇，回忆悲痛欲绝，她听说后，她父亲的诊断晚期肺癌。 " ，但后来，我发现，从座谈中说，许多人在更糟的情况，我有更大的信心， "说，今年25岁。 "现在我的父亲已经住了超过19个月，和他的治疗进行得很顺利" 。       为了报答他人给予的协助和支持，论坛成员捐出闲置药物后，病人已经死亡。贡献有时金额超过2.0万元（港币21960美元） ，所以他们来作为救济的家庭疲于应付医疗费用。举例来说, 易瑞沙一个月的用量，费用约1.65万元。        jli999，他们宁愿不要透露她的真实姓名，其中最近的捐助者。她的父亲从一个死亡病人收到了一些药物。 所以，一月前,当他也去世 ，他们用了，她决定捐出她的所有父亲的卖剩的药品，其中包括他收到了捐款，。 "如果我的父亲还没有得到肺癌，我就从来不知道有这么多的家人驱车前往贫穷，因为该疾病的， "她说。 "帮助这些家庭是一个方法，通过对关怀和热情帮助，我从该论坛" 。       捐助者可能意味着良好，但医生警告说，它的危险分享药物。即使他们自己的医生可能有明同一药品，还存在着安全问题。 " 还有一些假冒药品在市场上。 它的努力，为患者分不清到底这些药品都是真实的，如果他们 不从医院博士说： "王。 "即使药物是否为正版，他们可能已经过去了过期或已沾染贮藏过程中" 。        虽然该论坛提供支持，通过他们的悲痛，大部分成员离开后，家庭成员去世;有太多伤心的回忆与此相关。王，也有计划，以获得对自己的生活后，他的母亲去世了去年。但持续讯息的人的质疑，他曾提出，并表示绝望中，他曾经历，使他改变他的主意。        王说，他感到有责任去帮助新人。 他不但继续留在论坛上，他花了约1000元，改善其网络功能        "我觉得我做一些有意义的， "他说。 "为末期癌症病人，奇迹是在这个过程中，而不是最终的结果，很多人都给予3个月的生活由他们的医生还要再一，两年，我认为这是一个奇迹" 。
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[此贴子已经被作者于2008-3-27 6:25:20编辑过]

jimmy112199

Friends in need
Patient self-help groups are filling the gaps in medical advice on the mainland
Joey Liu
Mar 18, 2008     
    
Shanghai real estate executive Immanuel Wang's efforts two years ago to seek medical advice on treating his mother's lung cancer were painful. No matter which doctors he went to or how long he waited for an appointment, no one could spare him more than 10 minutes.

"A doctor often has to see about 40 patients in a morning. He just can't spend much time on you," he says.

Wang turned to the internet and joined an instant-messaging group set up to share information among lung cancer patients, but that, too, proved inadequate. So last year he founded an online forum, 51qiji (which sounds like "I want a miracle" in Putonghua), to provide a channel for lung cancer sufferers and their families to help each other.

Patients' self-help groups for illnesses such as haemophilia and cancer have mushroomed on the mainland, a telling sign of the dire state of its health care system. 51qiji.com, for example, has registered about 3,000 members over the past year. The names many adopt - Be Tough, Mommy Healthy and Save Father, for example - reveal their frame of mind. By sharing medical histories, exchanging information about new drugs and effective therapies, and offering encouragement, patients and their families hope to make the most of limited medical resources and support each other in their fight against the disease.

"We set up the self-help group in an attempt to break the current medical information barrier," says Wang, a thirtysomething property planner. "Most members are late-stage lung cancer patients. About  90 per cent of them won't live long. Perhaps it's this desperate situation that sparks their strong will to survive."

Lung cancer is the No1 killer disease on the mainland. In 2005 about 500,000 people were found to have lung cancer and the number is growing by 26.9 per cent annually. Medical experts attribute the high rate of lung cancer primarily to air pollution and widespread smoking (two out of three Chinese men smoke). Unchecked, the number of lung cancer patients on the mainland is projected to hit 1 million by 2025.

With uneven distribution of health care on the mainland, patients from small towns and villages often can't get adequate treatment - which explains why half of 51qiji's members come from second- or third-tier cities. Many members from major cities also signed up in search of medical advice for relatives living in remote areas. Wang, for example, was seeking help for his mother, who lives in a small village in Anhui.

Through his quest, he realised that physicians in his village may not be aware of the latest treatments - none had heard of Iressa, a new drug that doctors in Shanghai were using for persistent late-stage lung cancer.

He began to read up and consult specialists in Shanghai about the disease, posting his findings on the online forum. Thanks to all his research, Wang reckons he probably knows as much about the disease as doctors in the top hospitals of smaller cities.

Forum members regard the sharing of such information and exchanging experiences as its most valuable function. A thread begun last May discussing ways to deal with problems when using the new drug for non-small-cell lung cancer has been viewed more than 20,000 times and is continuing to grow. Some members have posted comments from mainland experts and others have translated the latest research papers from abroad.

Doctors acknowledge that self-help groups such as 51qiji.com can be helpful but warn that it's dangerous to blindly adopt therapies offered online. Information could be unreliable and misleading, and vendors may try to tout drugs online under the guise of patients sharing experiences.

"Different patients need different treatment. You can't guarantee that a treatment that worked on someone will be effective on you," says Wang Jia, a doctor at the Beijing Tumour Hospital. "It's necessary to consult doctors first."

Immanuel Wang shares the worries and stresses on his website that patients should consult experts about treatments offered online before trying them.

He has tried to recruit sympathetic physicians to offer online guidance but to no avail. Only one doctor agreed to give some advice, and only as a visitor to the forum. "Doctors are afraid of trouble," he says.

For some visitors the forum is more valuable as a source of moral support in the battle against cancer. Su Liyuan, a housewife, recalls how distraught she became after learning of her father's diagnosis of late-stage lung cancer. "But later, as I found out from the forum that many people were in worse situations, I had more confidence," says the 25-year-old. "Now my father has lived more than 19 months and his treatment is going well."

To repay others for their support, forum members donate unused drugs after a patient has died. The contributions sometimes amount to more than 20,000 yuan (HK$21,960), so they come as a relief for families struggling with medical bills. One month's dosage of Iressa, for example, costs about 16,500 yuan.

Jli999, who prefers not to reveal her real name, is among the recent donors. Her father received some drugs from a patient who died. So when he, too, died in January before using them up, she decided to donate all of her father's leftover medicine, including the contributions he received. "If my father hadn't got lung cancer, I would never have known that there were so many families driven to poverty because of the disease," she says. "Helping these families is a way to pass on the care and help I got from the forum."

Donors may mean well but doctors warn that it's dangerous to share medicines. Even if their own physicians may have prescribed the same drugs, there is still a safety issue. "There are some fake drugs on the market. It's hard for patients to tell whether these drugs are real if they weren't obtained from the hospitals," says Dr Wang. "Even if the drugs are genuine, they may have passed their expiry dates or been tainted during storage."

Although the forum offers support through their grief, most members leave once the family member dies; there are too many sad memories associated with it. Wang, too, planned to get on with his own life after his mother passed away last year. But persistent messages from people with queries he once raised and expressing the desperation he once experienced made him change his mind.

Wang says he feels a responsibility to help newcomers. Not only did he remain with the forum, he has spent about 1,000 yuan to improve its web functions.

" I feel that I'm doing something meaningful," he says. "For terminal cancer patients, the miracle is in the process rather than the final result. Many people who are given three months to live by their doctors go on for another one or two years. I think that is a miracle."

microsun

顶。

奚琴

希望奇迹网的知名度越来越高，希望专家医生能莅临指导。

再次感谢以马！

海中的鱼

刚刚看到，以马内利，感谢你，让很多无助的人找到了安慰与寄托，当我们走投无路当我们无可奈何时，在这里让我们焦急烦躁的心渐渐平静下来，理智起来，把论坛办下去，更好的办下去，我们支持你，希望在这里的朋友们能够团结起来一起为我们的亲人和朋友创造一个网上抗癌乐园。另提议我们应当建立一个更加严格的进入和管理办法，减少垃圾帖子和另有所图的人的进入。

阿孟的妈妈

原来以马姓王,跟我母亲一个姓.

努力的小白

以马是个值得尊敬的人。

51奇迹是个值得关注的地方。

我们是个团结的群体，值得守护。