emergency report from China

[Hip]

I have already written to Charles, and suggested to him that my virus may well be the same as the "Fear of AIDS Disease" virus in China

But please note: I am not guessing about this virus. I while ago Dr John Chia (infectious disease expert) read my account of the symptoms that my virus creates, as it spread and infected more than 15 people in my social network. Dr Chia confirmed that my symptoms list were highly likely to be caused by an enterovirus. This enterovirus theory is important information, as it can eliminate the fear and worry that it seems many people in China have: that they may have some kind of new retrovirus.

Infectious disease experts themselves rely on information like the virus incubation period (as fast as 8 hours, in our case), its mode of transmission (salvia, in our case), and its various symptoms to help identify a virus, and to rule out other possibilities. This is not idle talk, but important data. If you read some virology web sites, and read about infectious diseases, you will realize that identifying an infectious disease is often a very difficult task. Enteroviruses are particularly hard to detect and identify. Hence the amazing work of Dr John Chia in pushing forward the field of enterovirus detection in CFS patients.

At the present time, medical science and medical technology often finds it very difficult to identify a mystery viral infection in a patient, even if that virus turns out to be a known virus. If it is an unknown virus, then it is even more difficult to characterize. This is why all information about a virus's symptoms is useful, to help its identification.


The ViroChip is new technology, not currently available outside research laboratories. The ViroChip does make it much easier to identify an unkown virus. We will be very lucky if we get out blood samples tested by the ViroChip. I have written to Charles on this matter, and I hope he takes interest in our story.

 

[hanchuchu]

two things:

1. due to some reason, the news has not yet been released. But it will. I am taking my patience.

2. China media is following up the story and the test conducted in Beijing Ditan hospital goes as scheduled. The doctors become more careful about their comments instead of simplying calling us "fear of aids", although there are some stubborn guy stilling insisting the syptoms resulting from fears.

 

[hanchuchu]

latest news report from domestic media

http://nf.nfdaily.cn/nfdsb/content/2010-01/09/content_7969950.htm

English translation is done by translation software

国家疾控中心关注"类艾人群" 招募60人进行研究
2010-01-09 10:08 南方都市报 网友评论 1 条，点击查看
　　本报讯 (记者鲍小东)今天，上海网友“在所难免”将乘机飞往北京，接受中国疾病预防控制中心(以下简称“国家CDC”)性病艾滋病预防控制中心安排于明日的研究。他被称为“疑似艾滋病人”，或者“阴性感染者”等。和他一起参加此次研究的两批共60名“病人”，是从全国众多“病人”中招募出来的。

　　官方课题研究组成立

　　目前，尚不知中国有多少这样的“疑似艾滋病人”，但北京、上海、广州、杭州、武汉等地的艾滋病临床权威机构透露，每家医疗机构每年均接待几千名这样的“病人”，而且，这个人群正在逐年增多。

　　2009年7月1日，“病人”们找到了曾光，他是国家CDC流行病学首席科学家。曾光十分重视此事，并给“病人”们回信称，对国家和社会而言，“你们的诉求已经成为了需要认真调查解决的公共卫生问题”。

　　他随后安排秘书进行了长达3个月的调查。国家CDC也成立了“疑似艾滋病”课题研究组。2009年10月30日，课题研究组从国家CDC性病艾滋病预防控制中心获得经费支持，开始在全国招募60名病人分期参加研究。

　　本次研究，课题组将委托国家CDC最权威的实验室对病人是否感染艾滋病病毒作出决定性的复测，并组织国内权威的临床、医疗以及科学研究的专家，共同组成专家组，对病人共同进行临床检查，并提出诊疗意见。

　　是“恐艾”还是新病毒？

　　“疑似艾滋病人”大多是在“高危”性行为之后患病。他们最初怀疑感染了艾滋病，但反复的检测结果均显示，他们并非感染H IV病毒；然而，医生也无法找到他们的真实病因。因此，他们继而坚信自己感染了一种类似于艾滋病的未知病毒(本报曾此做过“阴性感染者”的相关报道)，他们将此病描述为，一种目前无法检测的、可以唾液传播的、攻击人类免疫系统的、类H IV病毒。

　　桂希恩、时代强、李太生、蔡卫平、吴焱均是国内艾滋病临床领域权威专家，他们均一致认为，这种“病人”大多是恐艾症，“但也不排除少数人感染了未知病毒”。

　　多年来，这个人群四处求医，但中国医学界仍基本维持“恐艾说”。“病人”“在所难免”认为，确实有很多“病人”属于“恐艾”，这因此影响了医生、专家对少数真正感染了“未知病毒的病人”的判断。

　National CDC concerned about "class Ai crowd" to recruit 60 people to study

Southern Metropolis Daily 2010-01-09 10:08

(Reporter Bao Xiao-dong), today, the Shanghai netizen "inevitable," will flew to Beijing to accept the China Disease Prevention and Control Center (hereinafter referred to as "national CDC") of STD and AIDS Prevention and Control Center for the Study of tomorrow. He was known as the "suspected AIDS" or "negative infections" and so on. With him to participate in the study of two batches of a total of 60 "patients" is from the National number of "patients" in the recruitment of out.

Study Group set up an official topic

At present, China still do not know how many such a "suspected AIDS", but Beijing, Shanghai, Guangzhou, Hangzhou, Wuhan and other places of the AIDS clinical authority revealed that each receive an annual medical institutions thousands of such "patient", Moreover, the population is increasing year by year.

July 1, 2009, "patient" who had found the light, he is chief scientist of the national CDC epidemiologist. Zeng Guang attaches great importance to the matter and to the "patient" who replied said that the state and society, "Your appeal has become a need for careful investigation to solve public health problems."

He then arranged the Secretary for as long as 3 months of the investigation. National CDC has also set up a "suspected AIDS" the research team. October 30, 2009, the research team from the CDC National STD and AIDS Prevention and Control Center is funded, and started to recruit 60 patients across the country participated in the study phases.

This study, the research group would be entrusted with the country's most authoritative CDC laboratory whether a patient infected with HIV to make a decisive re-measurement, and the organization of an authority on the clinical, medical and scientific experts, together constitute the group of experts, jointly conducted the patient Clinical examination and put forward treatment opinions.

Is "fear Ai" or a new virus?

"Suspected AIDS" mostly in "high risk" sexual behavior after the sick. They initially suspected of being infected with AIDS, but the repeated test results show that they are not infected with H IV virus; However, the doctors were unable to find their true cause. Thus, they believe they are infected and then an unknown virus similar to AIDS (Our newspaper has this been the "negative infections," the relevant reports), they will be described as a disease, a current can not be detected, they can spread saliva , the attack on the human immune system, class H IV virus.

Gui Xi-en, times Strong, Li Tai-sheng, CAI Wei-ping, Wu Yan, China AIDS clinical areas are authoritative experts, they all agreed that this "patient" are mostly AIDS Phobia, "but does not rule out a small number of people are infected with an unknown virus" .

Over the years, the group 4 treatment, but China remained at the medical profession, "said Ai fear." "Patients" are "inevitable" that there are indeed many "patients" are "afraid Ai", which thus affected the doctors, specialists of the small number of truly infected with the "unknown virus, the patient" judgments

 

[hanchuchu]

CDC's current attitude

CDC starts to comment on this illness in news paper. Insisting we are fear of aids, although they see the patients test reports and the syptoms. Hopeless... the country I am living in is still in thick darkness--no respect of human rights.

Exhausted...

 

[starryeyes]

That's really frightening. Our CDC is a scary entity. I don't trust them at all.

 

[Hip]

That is so typical of the CDC, and indeed, typical of many government health agencies around the world.

This happens time after time: governments all around the world have a bad habit of saying something is a psychological disease, even if there are plenty of physical symptoms.


This has been the official government policy in the US for chronic fatigue syndrome for decades (in the UK, in Australia, etc).

I don't know if you have been following the story of Morgellon's Disease: a new emerging disease (but very rare) with symptoms very similar to chronic fatigue syndrome and Lyme disease. Morgellon's Disease is characterized by extreme anxiety states, and sometimes some mild psychosis (extreme anxiety can often create some psychosis), and also characterized by some very peculiar skin lesions, which sprout fibers of different colors, typically, blue, red and black.

What was the official response to Morgellon's Disease? Did they rush to set up an emergency team to deal with this new disease phenomenon? Not at all. Initially, the medical profession, and the CDC, said that Morgellon's was a psychological disorder, in which the patients were mentally ill, and they said the patients believed that they had the strange fibers growing from their skin, but that these fibers were just imagined. So this is the same story again: the CDC just tell you that your disease is "All in your Mind". Ridiculous!

Eventually the CDC did change their view on Morgellon's, and have commissioned an investigation in the nature of Morgellon's Disease (which is still ongoing) - but only after a huge media and Internet coverage of Morgellon's forced the CDC's hand.

 

[starryeyes]

Hip wrote: Eventually the CDC did change their view on Morgellon's, and have commissioned an investigation in the nature of Morgellon's Disease (which is still ongoing) - but only after a huge media and Internet coverage of Morgellon's forced the CDC's hand.

Oh good! Geez, it's about time. Thanks for letting us know. I have been following Morgellons and it's a super frightening illness. In the town by me, Oakland CA, a famous baseball player got it and now his wife and kids have it.

Warning: Don't look it up if you're squeamish or have anxiety about health issues.

How did they force the CDC to study Morgellons? We need to use those tactics ourselves.

 

[hanchuchu]

computer is honest, people are lying

The most ridicuous thing is that all the computer-generated medical reports show the inflammation over the whole body, but the experts say we are fine and it is normal to have such inflammation.

A computer cannont lie, but people can. They just deny everything and vow to fight back the media report. This is murder!

The CDC experts are selfish and they only concern their own political career instead of public health.

We will spread the virus to more people if they just ignore us this time. The whole country will pay the price. We have no choice but to let more people die like us...

 

[Dainty]

hanchuchu,

In the WPI live video feed today on XMRV Dr. Mikovits very briefly mentioned China, saying that someone was desperately asking her to help. I believe she mentioned something about someone going over there to check it out and that it may be a more aggressive form of XMRV. I'm sorry that I do not have any more information than that, since it was a live video feed I cannot go back and double-check what I heard and my brain isn't doing too well right now. But it sounds like the WPI has heard someone's cries from China and would be willing to test and see if it is a form of XMRV. I hope that's encouraging.

 

[hanchuchu]

thanks for the info

hanchuchu,

In the WPI live video feed today on XMRV Dr. Mikovits very briefly mentioned China, saying that someone was desperately asking her to help. I believe she mentioned something about someone going over there to check it out and that it may be a more aggressive form of XMRV. I'm sorry that I do not have any more information than that, since it was a live video feed I cannot go back and double-check what I heard and my brain isn't doing too well right now. But it sounds like the WPI has heard someone's cries from China and would be willing to test and see if it is a form of XMRV. I hope that's encouraging.

Judy is the first expert who gives me the response. I think it refers to us. The world will know the event soon, I believe. One internation media decides to report this the next week. People in the world will know the fact, although the government tries to cover it. Let's fight. I am a dying person right now, full of syptoms over the whole body. I am exposing my life to political risks, but I have no choice. There are so many people out there in China. China is such a huge country, if only a small number get infected, there is no way to set up so many online chatrooms and unite online. I believe there must be many many people, even without knowing what happened to themselves.

Well, Judy is a really nice lady. Her briefing may have some influence in the US medical circle. Good newes!

 

[madday]

Hello to everyone,

Thank you Hanchuchu for this thread and many thanks to all of you providing this forum. I am from Eastern Europe and after sexual encounter with an escort woman I started to have almost all of the symptoms described as "Chinese non-HIV aids virus". And of course I was sure it was HIV but the tests didn't proove it.

I wrote to many people, posted on many web sites and many forums begging for help with no results. (Some links to my threads: http://forum.notcrazy.net/index.php?topic=5438.0 , http://forums.poz.com/index.php?topic=2001.0)

After a few years after the encounter I was diagnosed by Prof . De Meirlier with CFS - Conclusion is: "Patient suffers from ME/CFS (WHO 93.3); however it is clear that there is a chronic persisting infection of unknown origin".


This is my story: "After sexual intercourse I started to have strange symptoms: body temp raised to 37,5 at least (it is two - actually it is 4 years now, as this part is a quotation from my post at other forum, link is attached above - years now that my body temp is rarely below 37,3 degrees), I had unbelievable sweats during nights and days – I was completely wet, I had to change my clothes few times a day, my pyjama few times a night. I got white cover on my tongue – candida albicans was diagnosed, have afts quite often. I got sore throat – I couldn’t heal it by anything, no medicines no sprays worked and it lasted for almost half a year. I got problems with my eyes – can see lot of annoying small objects rolling ahead of my eyes, could not stand day light. I got kind of dementia which caused me to forgot things like my car’s whereabouts, PINs to my bank cards etc, my brain is fogged. I am tired, exchusted and sleepy all the time even after 10 hours of sleep. I have developed chronic sinusitis. My life became a nightmare.

At the beginning I was sure it is HIV virus but the medical tests didn’t prove it. The last HIV antibody test I made two years after that unlucky intercourse. It came out negative as several tests before.
I was tested for all kind of common diseases for several time (like hepatitis a,b,c,d; EBV, CMV, Chlamydia, full STD’s panel, and many many others). I haven’t found anything".

I am still struggling with the symptoms.
I have met many people in similar condition from different parts of the Globe so I think it is not pecurial to China- it spreads worldwidely.

All the best to all of you,
Madday

 

[hanchuchu]

Madday,

the medicine you should take:

1. boost the immune system
2. activate the blood circulation
3. anti-inflammation

In China, the virus is initially spreading via sex contact, and then through house daily life

I don't think we are XMRV, anyway.

I just want to let you know, you should be a doer to act immediately. Your doctor should report the case to your national CDC or you may let him read the post here.

I decide to persuade the scientist I contacted to write letters to WHO once the news is released. Can you just let your doctor do the same thing for you?

It is the death sentence from God. We are struggling... but remember only action can push things forward. The infected in China has started to spread the virus to other people on purpose to raise the public awareness. It is not something we should do, but people are desparate...

 

[madday]

Thank you for your reply.
The only thing I could achieve from the medical care system was a psychiatric help. Before CFS I was diagnosed with psycho ilness with psycho-somatic symptoms. No any chance for any proper help! Noone (apart from some "underground" doctors ) treats CFS as a serionus ilness.
I had also thaughts to start to spraed it on purpose but I didn't do it. The kind of ilness I have can't be passed by everyday contacts - I haven't passed it to any one from my relatives or friends.

The medicine that worked for me was shots of VIT B12 - helped for brain fog and antivirals like aciclovir and isoprinosine. They didn't make me healthy person again but at least I can live quite "normally" now.
I also take a lot of vit C and magnesium.

I was also desperated but I have realised there is nothing can be done, I used all of the possible means I could.
I've lost bigger part of my previous life and the only thing I can do now is to wait...

 

[hanchuchu]

I have to tell you we are different

1. lots of people have sex with condoms in the whole process, including oral sex, still get infected/ it is a kiss-passable virus in China

2. lots people passed the virus to their family and friends by sharing dinner

3. our CD4 ranges around 500-300. This is important and you should take the test and see how much T-cell you have left in your body

4. oral sex without condom --100% will be infected

I don't understand what are you waiting for? Man, get up and fight. At least, there is some hope if some scientist steps in. You know what, in China, lots of people just discusses the disease without any action. I have told them I will not share any info with them if they won't act... If you don't help yourself, who are you expecting to come to help you?

It is life. I never expect my life is changed after the incident while I got drunk. Only one mistake, life is gone... I used the condoms in the whole process, but still get infected--it spreads by kiss

You won't spread the virus to your family, may because the dinner habit difference from China. We always use chopstick to get the dish from the same plate...

 

[madday]

My ilness started in April 2006. I did what I could, visted lot of "specialists" made tons of blood tests all for nothing.
I started to check my cd4 count for the first time 3 months after my ilness started it wsa 530. Later on it was: 800, 1049, 1540, 1430. So not bad after all.

Believe me I visited a lot of specialists in Infectious Diseases in two different countries. There is no point to revisit them - the only think I can hear is "go and seek some psychological help. All you heve are psycho-somatic symptoms".
I also sent emails to counterparts of CDC in two different european countries, I sent emails to WHO, to many scientists. All of them were ignored. What more can I do.

The only person who took it seriously was specialist in CFS, Prof . De Meirlier from Bruxelles. He gave me some medicines and vitamines which helped a bit but didn't heal me completely.
He told me it might be viral but couldn't specify it.

I started to feel better, although not completely recovered. At least I am able to go out, try to enjoy the moments.
The only thing I can do now is to wait and follow how the things in China and all of the matters concerning XMRV will evolve.

 

[hanchuchu]

My ilness started in April 2006. I did what I could, visted lot of "specialists" made tons of blood tests all for nothing.
I started to check my cd4 count for the first time 3 months after my ilness started it wsa 530. Later on it was: 800, 1049, 1540, 1430. So not bad after all.

Believe me I visited a lot of specialists in Infectious Diseases in two different countries. There is no point to revisit them - the only think I can hear is "go and seek some psychological help. All you heve are psycho-somatic symptoms".
I also sent emails to counterparts of CDC in two different european countries, I sent emails to WHO, to many scientists. All of them were ignored. What more can I do.

The only person who took it seriously was specialist in CFS, Prof . De Meirlier from Bruxelles. He gave me some medicines and vitamines which helped a bit but didn't heal me completely.
He told me it might be viral but couldn't specify it.

I started to feel better, although not completely recovered. At least I am able to go out, try to enjoy the moments.
The only thing I can do now is to wait and follow how the things in China and all of the matters concerning XMRV will evolve.

Your CD4 is so good and there is nothing for you to worry. How about CD8?
I am still waiting for the report and I believe it will come out, as the reporter promised.

what is the most effective medicine working for you? I want to try...

Don't wait for our outcome. Nothing will be changed, we are still "fear of AIDS". ridiculous!

I just hope US scientists can help, but it seems like I have little hope. My efforts should be ruined by some official.

waiting for death...

 

[hanchuchu]

latest news--from "science news "
----we are still "fear of aids"

P.S.--when the experts speak for the government, we will definitely pass "fear" to more people
the funny thing is that none of the experts dare to shake hands with us. Why? They are afraid of being infected by sweat, but refuse to tell the truth to public

http://it.sohu.com/20100202/n270003742.shtml

艾滋“阴性感染者”苦寻未来
来源：《科学新闻》杂志 2010年02月02日16:31我来说两句(0)复制链接大中小大中小大中小　　“如果医学检查阴性后仍坚信患病，就应该看精神科医生。对一些人而言，现在患的病很可能是先前已有心理问题的火山口，心理治疗的价值正好在于处理深层的问题”

　　贺涛 李树峰

　　“未来”是一名教师，而且干得很不错，“我的学生都是年级上最好的”。他跟妻子相恋7年才结的婚，家庭很幸福。

　　但自从那次在声色场所的醉酒放纵之后，他的生活完全转折了。

　　那次越轨之后，“未来”心理非常愧疚。更糟糕的是，他时常感觉身体不适。他怀疑自己染上了艾滋病，就去做艾滋病检测，结果为阴性。但这并没有让他感觉好受些，因为他发觉自己的身体出现了更多的症状，“皮肤出现血点、划痕，一抓就红。嘴发炎，舌头白得厉害，肚子响、放屁多”，等等。

　　在“未来”加入的一个QQ群中，还有199位（QQ群用户上限是200人）与他经历类似的群友。他们在高危性行为后出现持续低烧、皮疹、身体消瘦等疑似艾滋病症状，反复检测HIV为阴性，但并不能使他们消除焦虑。他们自称是“阴性感染者”。

　　并非新型病症

　　由于对地方检测结果的怀疑，2009年7月份，有些“阴性感染者”找到了中国疾病预防控制中心（CDC）流行病学首席科学家曾光。

　　曾光在了解情况后认为，这是“需要认真调查解决的公共卫生问题”。他安排自己的助手裴迎新博士展开了长达三个月的调查。随后，中国疾病预防控制中心（以下简称CDC）成立了“疑似艾滋病”课题研究组。2009年10月30日，这个课题研究组在全国招募60名“病人”分批进京，参加研究。一切用于研究目的的检测费用由课题组承担。

　　1月29日，据“未来”所在的QQ群消息显示，“目前第一批去检测的HIV结果已经出来，全部为阴性。第二批HIV结果下周会出来，请大家耐心等待。”《科学新闻》向曾光的助手裴迎新求证此事，被告知“暂时还没有消息可以提供”。

　　由于HIV检测一直是阴性，在一些媒体报道中，将“阴性感染者”定性为“恐艾症”或者“艾滋病恐惧症”。

　　心身医学科主任医师徐亮（化名）对此有不同看法：“不用发明‘恐艾症’这样的新名词了，此类病症早在上世纪八九十年代就很常见，学术期刊中有很多论文。这种症状多数被诊断为精神障碍中神经症下的疑病症、焦虑症、性传播疾病（艾滋病）恐惧症，或强迫症（洁癖行为）。其中最多的应是疑病症，即怀疑甚至坚信自己被病原微生物感染，患上严重的性传播疾病，尤其是艾滋病。”徐亮担心发表意见后会有人上门骚扰，他要求隐匿工作单位和姓名。

　　北京大学精神卫生研究所教授周东丰认为，类似于“阴性感染者”的群体大量存在。“不光怀疑艾滋病，疑什么病的都有。有些病人什么检测也不相信，就是认为自己有病。比如有的人怀疑自己得了胃癌，几十次甚至上百次去做胃镜。有人认为胆囊有问题，把胆囊切了，还是疼，就把阑尾也切了，照样疼，还要求开刀。如果有过不良性生活史，就会很容易往艾滋病上去想。”

　　对“传染性”的解释

　　临近年关，“未来”的很多群友不打算回家过年了。他们害怕把病传染给家人。其实，这也是很多“阴性感染者”固执己见的原因，他们认为“恐艾”说无法解释为何他们的病具有传染性。在很多人的描述中，不但自己的家人，甚至连他们的同事朋友都被传染，这使得他们在经受病痛折磨的同时，背负上沉重的罪恶感。

　　“未来”也认为妻子已经被自己传染了，但他没有向妻子说明。“我是高危的，不敢告诉她我生病了。在我HIV检测为阴性后，也就和她没有注意隔离。夫妻生活1周后，妻子身体皮肤就出红血点、肚子响、多梦等症状。以前她的皮肤很好，现在黄的不得了，我看到就心疼。”

　　针对“阴性感染者”认为其所患疾病的传染性，武汉大学人民医院精神病学教授王高华认为这是由于感应性精神障碍所致。“比如说预防接种，一个学生出现头晕，剩下的都会出现头晕的情况，有相互感应的效应。而在别人不知情的情况下传染别人，这个不好解释，觉得同事有自己类似的症状，可能有一定想象的成分。如果坚信同事出现类似症状，应从精神上去考虑。”王高华说。

　　——也就是说，这些病人对于周围人所谓“症状”的判断，本身就不可靠。

　　并不是所有“阴性感染者”都认为自己具有传染性，来自杭州的群友“晕”虽然出现了与其他人类似的症状，但他并没有发现有人被自己传染。“我的症状一直没有传染给别人，但有些人据说是会传染的，我不明白。”

　　生理—心理交互作用

　　大多数“阴性感染者”在逐步排除感染艾滋的可能后，不再怀疑自己感染的是艾滋病，甚至谁在群里再提HIV都会受到其他人的指责，“谁要再说咱们恐艾的，就让他们喝咱们的血，吃咱们的唾液。”他们开始坚信自己感染的是一种新型的疾病，而目前专家们对此缺乏了解。

　　对此，徐亮表示：“患有此类疾病的人具有强烈的疑病倾向，怀疑自己有病，对检查结果也不相信，怀疑检验错误或者自己处于窗口期，或者怀疑自己感染的病原微生物比较怪，检测不出来，就是对自己不信任，内心有冲突。”所谓窗口期，是指从受到艾滋病病毒感染，到体内产生出艾滋病病毒抗体的这一段时间。在窗口期，艾滋病病毒感染者的血液检测查不到艾滋病病毒抗体，结果呈阴性。

　　在徐亮看来，这都是疑病症的正常表现。病人对健康缺乏信任，疑病观念是核心的心理症状，相应地便产生与焦虑、紧张情绪相关的其他心理、躯体症状，如失眠、惶恐不安、过度敏感、自责、心情低落、注意力不集中、虚弱感、全身酸软乏力、肌肉震颤及疼痛、手抖、坐立不安、出汗、尿频尿急、食欲减少、大便次数增加、腹泻、消瘦、低热等。这也与很多病友叙述的症状相符。

　　而这些躯体症状反过来又成为加重疑病观念的“证据”，二者形成恶性循环，导致病情越来越严重。“心理与生理是机体活动的两个相辅相成的方面，情绪活动伴随生理活动。基本的机制是不洁性行为引起道德、良心冲突，自责自罪引起对医学后果的过度关注，激发紧张—应激反应，应激激素水平增高、交感神经兴奋。”徐亮说。

　　“自救”

　　由于无法检查出是何种疾病，部分病友顺其自然，未采取任何治疗措施。而更多的病友选择对症治疗，“头痛医头，脚痛医脚”，长期服药，但仍然难以摆脱病痛折磨。

　　“未来”现在靠中药来维持，“现在吃活血化瘀的中药，效果还好”。药方子是QQ群里的一位患病十多年的老病友“十年”给的。在几乎所有的专家医生都认为是“恐艾”后，他们中的很多人已经不再相信医生，靠与病友在QQ群里交流寻找治疗方法。

　　“十年”的经历更为痛苦，他认为自己的病是1999年，一个从乡下来的女孩传染给他的。而现在，那女孩已不知所踪。他认为这种病的源头来自某种动物。“我是第二个得这病的人，所以对这个病没有人比我更了解。”时常有群里的病友会找“十年”要方子。

　　据“十年”讲述，他的亲戚朋友几十人全部被他传染，他甚至认为他所在的地区有数万人已经染上此病，而当地的医生对此一无所知。他曾数次向当地疾控部门反映，甚至自己跑到北京，找到中国科学院和中国疾病预防控制中心的专家，但是无人理会，反而认为他精神有问题。

　　他对政府和相关专家失望至极，“我觉得现在没什么希望，这个病只能自己靠自己，靠别人是靠不住的。”无奈之下，他只能尝试自己给自己治疗，十年的试药经历使得他发展出了一套自己的理论。“现在我自己控制得很好，但我不想宣扬这件事，免得他们认为我精神有问题。”

　　不光“未来”，群里的很多病友都在尝试中药治疗。很多病友认为治疗艾滋病药物对自己症状有效，但其高昂价格却不是一般的患者能负担得起的。

　　如果不是艾滋病，为何治疗艾滋病的药物会有效？徐亮认为这只是心理作用。“没有感染证据而觉得抗艾滋病治疗有效，主要是此类治疗产生了心理反应，即‘安慰剂效应’。任何被患者认为有效的疗法，包括抗菌素、维生素、中草药、巫医、民间疗法等等，都会产生安慰剂效应。”

　　蔓延的恐惧

　　在求助无望后，QQ群成为“阴性感染者”们重要的精神寄托。他们一方面后悔自己当初的行为，一方面商量治疗方法，不满与失望情绪弥漫其间。已有的QQ群人满为患，不断有病友开辟新群。

　　隐瞒病情、坚持工作、群里交流，三点一线成为群里很多人生活的主要内容。除去晚上休息时间，几乎每时每刻群里都有人在讨论病情或者发泄不满。

　　他们不相信专家，转而相信病友。无助中，任何病友的信息都可能成为他们的救命稻草。有病友提出哪种药物有效，用不了多久就会有人买来使用，然后反馈效果。各种稀奇古怪的药方、疗法在群里广泛流传。甚至有人想到“以毒攻毒”、安乐死。

　　专家对这种缺乏专业人士的交流并不乐观。徐亮说：“引入科学的讨论，了解该病的社会文化背景和心理生理机制，引导患者正确求医，对该群体的正规治疗、自我调整和康复有益。如果大家在网上以讹传讹，制造恐慌，加重病耻感，讳疾忌医，则网上的交流会加剧相关人员的病情。”

　　广州市脑科医院主任医师马崔认为：“很多人对此认识不足，把情况说得那么可怕，容易产生负面影响。对他们要给予辅导，让他们做一些集体的治疗，不要让这些东西再扩散开去，要采取适当的措施，将不良扩散缩小到最小范围。”马崔现在兼任中华医学会精神病学分会顾问。

　　王高华也认为：“互相交流会有影响、心理暗示，不一定对病情有帮助，非医学专业讨论医学问题往往会有一些误导。应该和专业人士讨论，和医生讨论。”

　　现在群中病友情况各异：有人心态平和，正在寻找积极的治疗方法；有人不知所措，无助地被群体意见裹挟；还有人情绪极不稳定，试图将病传染给更多的人，以报复社会对他们的忽视；更有甚者，有人去“扎阳”，所谓“扎阳”，就是用针头在艾滋病人身上扎针，然后再扎在自己身上，还有人直接与艾滋病人性交，使自己变成真正的艾滋病人，以此获得国家免费的艾滋病治疗药物。

　　记者在QQ群中发现，几乎没有人能提出针对疾病的建设性意见，持久的酝酿反而使得群体意见朝着情绪化和非理性方向发展。

　　最近，“未来”的群中流传出这样的消息，中国科学院上海巴斯德研究所正在进行相关研究，更有传言，巴斯德研究所已经从病人血液中分离出新型病毒。《科学新闻》向上海巴斯德研究所询问，接线人员称研究所根本不对病人提供此类服务。

　　群里的信息真假难辨，甚至有人故意在群里散布虚假消息。很多病友都清楚这一点，但权威信息的缺失使得QQ群成了唯一的信息来源。

　　“没有意义，甚至没有好处。但这个群是唯一能让我们得到最新消息的渠道，你问我们待在这里的目的是什么？对于这个我们也很矛盾。”“未来”很无奈，可是没有别的办法获得信息。他现在还是注意群里的信息，只不过已很少发言。

　　寻求心灵救治

　　对于“阴性感染者”群体，认为为图标周东丰的建议很简单——在确定没有躯体疾病的前提下，向精神科医生求助。“病其实不是很难治，但需要你到适当的地方看。只要拿着你正常的化验单，去精神科就行了，很多类似的患者经过治疗就好了。”周东丰说。

　　“其实很多非精神科医生对此类病人能够立即识别并提出转诊建议，也有许多人知道寻求精神科的心理与药物综合治疗，能得到缓解。”徐亮说。他将不愿意看精神医生的主要原因归为三类：一是缺乏知识，以为自己是躯体疾病，而精神科就只是处理精神病人；二是害怕面对、处理内心冲突，有病耻感；三是部分人缺乏对心理体验的内省、言语化能力，相应地有较强的躯体化倾向，按精神分析观念就是缺乏“心理学头脑”，或是有“述情障碍”。

　　“对一些人而言，现在患的病很可能是先前已有心理问题的火山口，心理治疗的价值正好在于处理深层的问题。基础的解决办法是在传染科、皮肤性病科、男性科等部门就诊，进行医学检查，包括实验室检查，如果结果阴性，多数人可以自愈。如果医学检查阴性后仍坚信患病，就应该看精神科医生。”徐亮说。

　　但很少有病友认同这种说法，在他们看来，自己不是精神疾病，理所当然地没必要找精神科医生，躯体疾病观念已经根深蒂固。说服“阴性感染者”进行心理治疗几乎是一项无法完成的任务。

　　“最主要的是解释和沟通，药物治疗主要是缓解情绪，如果焦虑可以用抗焦虑药，大多数效果还是不错的。很多人不了解，了解了以后，病就好了。甚至可以找精神医生和艾滋病医生一起来做治疗。做宣传，做科普，这是个教育和交流的问题。”王高华说。

　　病友“晕”在群中算是比较冷静的，他曾提出要做精神治疗，但是遭到群友的一致反对。他目前身体状况还好，正在等待自己细菌培养的结果。“如果我康复了，这事就算了，群里的人情况比较复杂，很难保证大家的情况是一样的。我想帮他们，这事情太痛苦了。”

　　“未来”的群中大多年龄在20～40岁之间，本来正值人生大好时期的他们现在整日为疾病苦恼，严重影响了工作和生活。

　　“他们都有美好的未来和前途，结果囫囵在这个问题里。”“未来”惋惜地说。■

 

[hanchuchu]

game is over

CDC said the investigation is sort of over today. Without any conclusion. But it is over! No expert opinions are given to us.

I am still waiting for the BBC. I hope they can release it soon.

Well, that's it.

 

[jace]

There was a report on BBC Radio 4 this morning, at 0840 hours GMT. It told of a chinese 'mystery illness', people convinced the are HIV positive even after many (nine was quoted) tests.
It was also reported that many in China think the sufferers are ill because of guilt after lying with prostitutes. Sounds familiar. They reported that many sufferers were living as hermits to avoid infecting others. There was no connection to a retrovirus made, or reference to CDC, that I heard.

Im sorry that this report is as it is. Let's hope that more positive results than this flow from the CDC investigation.

 

[Alexia]

I've found the BBC report you mentioned Jace. If people are interested you can listen it here http://news.bbc.co.uk/today/hi/today/newsid_8505000/8505572.stm