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●不少慢性病人在网络运用博客微博等“私媒体”形式“抱团求医”，互相帮助
●专家提醒，病友群不能离开科学而只讲个人感受，更不能忽视心理暗示的“群体效应”
近日，59个自称是“艾滋病阴性感染者”“未知病毒感染者”的患者通过微博、博客等私媒体发出求援信息，引发媒体的报道，继而推动六省卫生部门对其所患“怪病”进行检测。
近年来，在网上出现了形形色色的病友论坛、QQ群以及微博粉丝群，几乎囊括了所有已知的病种。患者们交流就医经验，推荐良医，讨伐庸医，互相鼓励，互相帮助，有“抱团取暖”的作用。但同时，个人的恐惧和对疾病的错误认识也会在群里得到放大，甚至“传染”给所有病友。
如何看待网络病友社群？患者通过网络“抱团求医”现象是利是弊？对医学以及医疗服务进步将发挥何种作用？病友、医生对此众说纷纭。广东省卫生厅副厅长廖新波昨天指出，网络“抱团求医”是一柄双刃剑，最好有专家“驻群”释疑，助患者找到治疗捷径。
文/记者任珊珊 通讯员宋忠雷
恐艾症患者 十年前就向媒体求助
今年3月下旬，有内地媒体爆出全国有59名患者怀疑自己感染了艾滋病，但数十次检测HIV，结果都显示是阴性，继而，他们又怀疑自己感染了一种现代医学目前还无法认知的、有传染性的“未知病毒”。随后，香港媒体以“内地发现‘阴滋病’”为题进行报道，再次引发公众关注。
4月6日，卫生部正式回应，中、美实验室对这些患者的样本检测均显示艾滋病抗体为阴性，且尚未检测到相关致病病原体。卫生部新闻发言人邓海华以及国内多个艾滋病治疗专家指出，这些患者所患的是“恐艾症”。
其实，早在十年前，就有零星的恐艾症患者到包括本报在内的国内各大媒体求援，自述患上“艾滋病”，包括口腔溃疡、四肢乏力、淋巴肿大、骨节作响等症状，他们无法相信卫生部门的检测结果。当时，由于患者分散各地，媒体对个案的报道并未在社会上引发较大关注。
患者网络抱团 终获社会重视
近几年来，分散在各地的恐艾症患者通过QQ、论坛取得联系，改变了单打独斗的状态，在群里他们通报彼此的病情，互相鼓励。鉴于艾滋病抗体检测还是阴性，他们开始称自己感染了有传染性的“未知病毒”。从2009年起，河南、广东等地媒体描绘这一患者群体的境况，但卫生部门对他们的态度依旧。
从去年起，他们又改变了求援策略。2010年8月23日，一名叫“问天”的患者在新浪博客发文，呼吁病友到各大门户网站、论坛建立自己的博客，真实地记录自己的症状发展、医治、检测情况，展开自救。病友纷纷响应这一倡议，并在“微博元年”利用这一新兴私媒体，向社会发出求援呼声。
就这样，以群体形象出现在公众面前的恐艾症患者，在博客、微博等网络传播新载体的帮助下，终于推动卫生部门和社会公众重视他们的痛苦和诉求，也将个体恐惧放大为群体恐惧，继而引发整个社会对“阴滋病”“无名病毒”的恐惧。
抱团求医 频现网络世界
1.7万名“小鱼儿”
互相鼓励获得幸福
病友群有不少成功的范例。其中，创建于2003年7月“小鱼儿之家”是由鱼鳞病患者创立的互助网站，“小鱼儿”是患者的自称。作为国内最早一批出现的患者互助公益网站，“小鱼儿之家”如今已拥有17461名会员，不仅有寻常病友论坛常见的寻医问药栏目，还有同城约会、情感物语等版块，发帖者踊跃。
在交流论坛上，有人问“冬天你们是怎样去头皮屑的？”有人详细介绍自己如何保护受损的皮肤，还有人询问“ 我和我男朋友要结婚了，他还不知道我的病，我的病很轻微，请大家告诉我，我要不要告诉我男朋友啊！”
“做这个网站的初衷是想给病友们提供一个交流治疗经验、信息的平台，因为当时大家的信息比较闭塞，在生活中也很孤独，需要‘抱团取暖’。”创办人、站长肖华军说，自己就是‘抱团取暖’的受益者。他从小患鱼鳞病，至今未愈。“我们因为皮肤有问题，从小被别人另眼相看，经常痛苦、无奈、失望、自卑甚至绝望，特别需要跟同病相怜的朋友互相鼓励。”
肖华军说，最初几年，和网友的互相鼓励几乎成为他的精神支柱。“论坛上每当有病友取得工作顺利、爱情婚姻幸福等成功经验，都会跟大家分享，互相打气。”他说，在网友们的支持下，他相信能够战胜命运，人间自有真情在。通过不断自我调整心态，不断努力提高自身生存能力，他辗转江苏、济南、广州、西安，终于成为一名软件开发工程师，找到一份非常满意的归宿。
肿瘤病人：
误信“病友” 被骗三万元
网络的特点之一是匿名。病友群里许多人靠网名和QQ、邮箱联系，鱼龙混杂，既有古道热肠、伸手相助的热心人，也难免会有另有企图的谋财者以及抹黑者。并非所有的人都认可网络病友群的作用。“网上信息不是很可靠，除非你能确认病友的身份。”在保险公司工作的女白领Menam说，如果生了常见病，她会去网上检索相关知识，但只是作为参考，还是要到医院做检查，听听医生怎么说。
“有些病人宁可信陌生网友的口耳相传，也不信专家和医院的自我推介，结果上当受骗！”由于担心引发利益相关者的攻击，越秀区某三甲医院肿瘤科医生张明（化名）坚持要求使用化名。
两年前，他曾接诊一位胃肠道间质瘤患者。“当时他的肿瘤不算很大，还有挽救机会，我们建议他采用靶向治疗药物。”张明说，靶向治疗费用贵，但是对他的效果明显，服用后肚子马上开始“缩水”，而且这名患者家境富裕，可以承受得起治疗费用。
正当病情一天天好转时，这名患者突然看到病友群里的介绍，决定放弃靶向治疗。“他服用靶向治疗药物后高烧、乏力、过敏，我们跟他说，这是正常的反应，一定要坚持。但他觉得受不了。”张明记得，患者的弟弟坦言，哥哥上网查找信息时，听到群里的病友说：“西药毒副作用太大，我吃了某某名医的‘祖传秘方’，肿瘤缩到十厘米大小，现在可以上班啦！”
他看到这名病友留下的手机号，打过去仔细咨询，觉得可信，便花三万元去买所谓的“祖传秘方”。四个月后，张明在医院门口偶遇患者的弟弟，他说，哥哥已经去了。
专家观点
医生：
网络抱团 病情常被放大
“网络病友群对医疗服务发展是有帮助的！通过病友群介绍来的就诊者，往往更理性，问的问题更细致、到位。”广东省第二人民医院整形美容科主任罗盛康教授说，像整形美容学病友群发展已经十分成熟。网友会彼此分享就诊经验，给接触过的医生按技术实力、服务态度等进行打分，并向其他人推荐。
“网友群像团购，促使医生树立口碑意识。”罗盛康说，这有助于医疗服务质量的提高。不过，他认为，由于缺少“把关人”，病友群中也潜藏着不少风险。一方面，一些对于治疗、病情的错误认识可能会被病人放大，个人的感受本来没那么严重，但听别人一说，容易人云亦云，最终变成“严重问题”，在更大范围进行扩散。
此外，随着病友群影响力的扩大，在利益驱动下，也会出现一些乱象。例如一些病友论坛的版主，可能成为相关利益者的代言人，通过有选择的删帖、推荐信息，误导患者。
省卫生厅副厅长：
“抱团求医”别成“以讹传讹”
“如果病友们能够科学认识疾病，互相介绍好医生，交流怎样配合治疗，互相鼓励，这对医患都有好处！”广东省卫生厅副厅长廖新波表示，在糖尿病等慢性病治疗领域，患者“抱团求医”已经发挥了正面效应，例如糖友互相介绍如何进行生活管理，使得病情得到有效控制。
不过，他也指出，病友群不能离开科学而只讲个人感受，更不能忽视心理暗示的“群体效应”。“像‘恐艾症’事件中，一个人的感觉通过暗示，可能‘传染’给其他人，并在群体成员间互相进行强化，最后固化成整个群体的认知。”廖新波说，在对待疾病的认识方面，病友群里应该设有权威信息源，最好有专家驻群坐诊，这样才能避免“抱团求医”变成“以讹传讹”。
艾滋病不治会早死，早治才康复 艾滋病不治会早死，早治才康复 艾滋病不治会早死，早治才康复 艾滋病不治会早死，早治才康复
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| 图示∶2010年12月即将出版的《中国特色医疗金鉴》登载的刘君主任及其机构 |
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Baotuan medical attention: chaos OR to the edge?
Ocean News Time: 2011-04-16 Source: Guangzhou Daily Author: Ren Shanshan
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(Gettyimages for map)
● number of chronic diseases in the network such as the use of blog microblogging "private media" forms "Baotuan doctor" to help each other
● experts have warned that patients can not leave the group of scientific and talk about personal feelings, but can not ignore the psychological implications of the "mass effect"
Recently, the 59 claimed to be "HIV-negative infections," "unknown viral infection," the patient through the micro-blog, blog and other private media outlets for help information, triggering media reports, and then promote the six provincial health department of the risk of "abnormal "for testing.
In recent years, appeared in the online forum for all sorts of patients, QQ groups and micro-blog fan base, including almost all known diseases. To exchange experiences in patients with medical treatment, recommend good doctor, quack crusade, encouraging each other and help each other, the "heating" effect. But at the same time, personal fears and misconceptions of the disease will be amplified in the group, or even "transmitted" to all patients.
How to treat patients community network? Patients through the network "Baotuan doctor" phenomenon is good or? Progress of medicine and medical services will play what role? Patients, doctors were different opinions. Deputy Director of Health Department of Guangdong Province, Liao Xinbo yesterday that the network "Baotuan doctor" is a double-edged sword, and preferably a specialist "in group" to the construction, to help patients find the treatment of shortcuts.
Text / reporter correspondent SONG Zhong Lei Ren Shanshan
Fear of AIDS patients a decade ago to help the media
In late March of this year, the media broke the Mainland, 59 patients suspected of the country are infected with AIDS, but dozens of detecting HIV, the results showed a negative, then, they suspect are infected with a kind of modern medicine is still not recognized known, infectious "unknown viruses." Subsequently, the Hong Kong media as "the mainland that 'negative AIDS'" in the title were reported, once again raised public concern.
April 6, the Ministry of Health official response, the U.S. laboratory testing of samples of these patients have shown that HIV antibodies were negative, and the relevant disease pathogens have been detected. Health Ministry spokesman Deng Haihua, and a number of domestic AIDS treatment experts pointed out that these patients suffer from "fear of AIDS disease."
In fact, as early as ten years ago, there were scattered to the fear of AIDS patients, including this newspaper, major newspapers for help, the readme suffering from "AIDS", including oral ulcers, limb weakness, lymph nodes, joints creaked and other symptoms, they can not believe that the health sector test results. At that time, were dispersed as the media coverage of the case did not lead to greater concern in the community.
Patients finally got the network of social importance Baotuan
In recent years, scattered around the fear of AIDS patients through QQ, forums to get in touch, changing the state alone, in groups where they informed each other's illness, encourage each other. View of the HIV antibody test was negative, they began to call themselves infected with the infectious "unknown viruses." From 2009 onwards, Henan, Guangdong and other places the media portrayed the situation in this patient population, but their attitude towards the health sector remains.
Since last year, they changed the policy for help. August 23, 2010, a man named "Ask Heaven" of patients in the Sina blog posting, calling patients to the major portals, forums, create your own blog, a true record of the development of their symptoms, treatment, testing conditions, expand self-help . Patients have responded to this initiative, and "the first year of microblogging" use the new private media, to the community to call for help.
In this way, the group appeared before the public image of the fear of AIDS patients, in a blog, microblogging and other network communication with the help of the new carrier, and finally to promote the health sector and the public attention to their suffering and aspirations, will also enlarge the individual fears groups fear, sparking the whole community, "HIV negative" "unknown virus" of fear.
Baotuan frequency is seeking Network World
17 000 "Small Fish"
Encourage each other to be happy
Patient group there are many success stories. Which was founded in July 2003, "Small Fish House" created by the scale of mutual assistance in patients with site, "Small Fish" is the patient himself. As the first group of patients appeared mutual public Web site, "Little fish home" now has 17,461 members, is not only a common ordinary patients Xunyiwenyao forum sections, as well as city dating, emotion, etc. Forum Story , poster enthusiastic.
In the exchange forum, someone asked, "How do you go in winter dandruff?" Some details of how to protect their own damaged skin, people are asking "me and my boyfriend to get married, he did not know of my illness, I have very mild illness, please tell me, I tell my boyfriend ah! "
"Do this Web site was designed to provide a communication to the treatment, she has the experience, the information platform for comparison because it was blocking all the information in life is very lonely, and need 'Baotuan heating'." Founder, webmaster Xiaohua Jun says he is 'Baotuan heating' of the beneficiaries. Suffering from ichthyosis since childhood, he has healed. "We have problems because of the skin, from small new light by others, often pain, frustration, disappointment and low self-esteem and even despair, in particular, need to encourage each other with the same boat, friend."
Xiaohua Jun said that the early years, and friends to encourage each other almost to be his spiritual support. "Forum on the work whenever a patient to obtain a smooth, successful experience of love, marital happiness, will share with each other encouragement." He said, with the support of friends who, he believed that to overcome the fate of their own true feelings in the world. Through continuous self-attitude adjustment, and constantly strive to improve their viability, he was removed Jiangsu, Jinan, Guangzhou, Xi'an, and finally to become a software development engineers, to find a very satisfactory end.
Cancer patients:
Mistakenly believed the "patients" deceived thirty thousand yuan
One of the characteristics of the network is anonymous. Patient group where many people rely on screen name and QQ, E-mail contact, cohabitation, both Gudaorechang, reaching enthusiasts help solve the problem, inevitably there will be another attempt to discredit those persons and robbed. Not all people have recognized the role of network patient group. "Online information is not very reliable, unless you can confirm the identity of patients." In the insurance company said the female white-collar Menam, If we have common, she would go online to retrieve relevant knowledge, but only as a reference, or to go to hospital Check and listen to how a doctor said.
"Some patients prefer to believe unfamiliar users through word of mouth, do not believe the self-promotion experts and hospitals, the results deceived!" For fear of attack induced stakeholders, Yuexiu Area with the top three hospital oncologist Zhang (not his real name) insisted using a pseudonym.
Two years ago, he admissions of a gastrointestinal stromal tumor patients. "At the time of his tumor is not great, there are opportunities to save, we recommend that he used the targeted therapy drugs." Zhang said the cost of your targeted therapy, but his effect is obvious, beginning immediately after taking the stomach "shrink" and this well-off patients, can afford the cost of treatment.
While conditions improved day by day, this group of patients suddenly see the patient in the introduction, decided to give up targeted therapy. "He targeted therapy after taking a high fever, fatigue, allergies, and we said to him, this is a normal reaction, we must adhere. But he can not stand that." Zhang recalled, the patient's brother admitted that his brother the Internet to find information heard in the patients group, said: "Western medicine side effects too much, I eat certain doctors of the 'traditional remedy', reduced to ten centimeters in size of tumor, now work it!"
He saw the name of patients left the phone number, playing in the past carefully consulting, feel trusted, they spend thirty thousand yuan to buy so-called "traditional remedy." Four months later, Zhang encounters with patients in the hospital door brother, he said, his brother was gone.
Expert opinion
Doctor:
Network condition is often amplified Baotuan
"Network of health care services group of patients is helpful! Described by patients to the treatment group who tend to be more rational, more detailed questions asked, in place." Second People's Hospital of Guangdong Province, director of plastic surgery, said Professor Luo Shengkang as study the development of plastic surgery patients has been very mature group. Users will share their treatment experiences, to contact the doctor by technical strength and service attitude to rate, recommend to others.
"User Images buy, build word of mouth to promote awareness of doctors." Luosheng Kang said, which helps improve the quality of medical services. However, he believes that the lack of "gatekeeper", patients are also lurking in a lot of group risk. On the one hand, some of the treatment, the disease may be the mistake of amplified patient, personal feelings have been less serious, but one that people listen to, easy to others, and eventually become a "serious problem" in the larger scope of diffusion.
In addition, with the influence of patient groups to expand, driven by the interests, will also be some chaos. For example, some patients forum moderator, may become the voice of stakeholders, through selective delete posts, recommended information to mislead patients.
Provincial Health Department deputy director:
"Baotuan doctor," Do as "repeated the baseless assertion"
"If she has to scientific understanding of disease and each other on good doctor, how to communicate with the treatment, mutual encouragement, and this patient is good!" The Guangdong provincial health department deputy director Liao Xinbo said that in the therapeutic areas of diabetes and other chronic diseases, patients " Baotuan doctor "has played a positive effect, such as sugar Friends of each other on how to manage life, making the condition was under control.
However, he also pointed out that the group of patients can not leave the scientific and talk about personal feelings, but can not ignore the psychological implications of the "group effect." "Like 'fear of AIDS patients' case, a person's feelings, by implication, may be 'transmitted' to other people, and each other in the intensive group members, and finally solidified into understanding the entire group." Liao Xinbo said that in the treatment of disease understanding, the patient group where there should be authoritative sources of information, preferably in groups of experts Zuozhen, so as to avoid the "Baotuan doctor" to "repeated the baseless assertion."
