New era for ME/CFS research as top cytokine study attracts media headlines
The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.
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emergency report from China

Discussion in 'Other Health News and Research' started by hanchuchu, Nov 3, 2009.

  1. starryeyes

    starryeyes Senior Member

    Bay Area, California
    I'm still praying for you hanchuchu and now I have tears in my eyes too. I pray you find something that helps you. I'll keep watching this thread.

  2. hanchuchu

    hanchuchu Senior Member

    Thanks. I think only you guys can understand our feelings now--fighting horrible unkown virus. Many infected, including myself, just don't believe it is HIV mutation because it attacks and spreads differently. Possibly this will bring us hope. If we find out the virus, there may be a cure. It is chronic and won't quickly kill. But we do suffer a lot. "to be or not to be" is the question I ask myself again and again everday. I need peace. when I feel too bad, I just want to kill myself. I just cannot imagine the life without purpose and dignity. Life is falling apart actually.

    I just pray Charels can have the chance to help us...
  3. _Kim_

    _Kim_ Guest

    hanchuchu, your purpose right now is clear to me. You are helping the thousands of sufferers who are too sick to find help for themselves. You are the voice for all of those who don't speak or write English well enough to let the world know about your plight. You are the one who was guided to this forum by your intuition, the one who has risked his own safety in order to get help. And it is you who has followed up with every single lead that everyone on this thread has suggested. I have no idea how you found us or why you thought we might be able to help. I believe that God is working through you to bring you the answers that you seek.

    There is great dignity in the kind of advocacy you are doing. I have been inspired to help, not because of your suffering, but because of your courage.

    I wish you peace today,
  4. kurt

    kurt Senior Member

    Syracuse, Utah, USA
    many good vendors of OLE and Oregano Oil

    Thanks Hanchuchu for the TCM information, I will look at that. I translated it with Babelfish and recognize a few of the words, like Atragalus and licorice.

    There are many good vendors for Olive Leaf Extracts and Oregano Oils. I have tried many OLE brands and all have been good. Both the liquid extract and the powdered form in capsule.

    There are some very good Oregano products, such as Oreganol and Oregamax. I have used them and those two can kill many different types of pathogens.

    I do not recognize that AIDS drug you mention, it translates as 'Tang Caopian'. Are they using Anti-AIDS drugs???? Some of those are probably safe but some are very dangerous, I hope they are being careful and aware of the side-effects. I have read that one of the worst is AZT, which was rejected as an anti-Cancer drug initially because it damages the bone marrow, stops cellular reproduction, and if it is taken long enough can cause death. I would never take that drug, particularly if I were sick...

    That is interesting that you mention Spleen. I was told once by an energy healer using a type of acupressure that I had spleen energy problems, and I often get sensations there. So I studied and found that there are several common diseases of spleen that damages or destroys red blood cells. That could make sense that spleen problems are part of CFS, and maybe your illness in China also.

  5. hanchuchu

    hanchuchu Senior Member

    Kurt, can you just put the names of the producer of LOE and Oregano for me-the most publicly available brand at the best? So I can ask my friends to buy them for me.

    "Tangcaopian" is safe, because it is the pure extracts from herbs.

    Energy healer? I believe it is the way of needle-heal in China. The healer will insert needles in specific points in your body, right? It is also traditional chinese method. I am taking TCM boosting the function of spleen as well.
  6. kurt

    kurt Senior Member

    Syracuse, Utah, USA
    Thanks for the Tangcaopian link.

    I am using some energy healing also, a type of acupressure for the feet (Reflexology), it gives me an energy boost for awhile after a session.

    Here are some good links for those oregano products:

    Oreganol products from Vitamin Shop (best price) - any of these are good, I use the oil in water but some people can not tolerate that and must use the capsules.

    Oregamax, also from VS - this stuff is POWERFUL, stronger than many pharmaceutical antibiotics in my experience. Good for acute infections, I have to take several capsules (2-3) each day for a really bad infection like bronchitis. I have read of people taking 5-6 capsules but would not try that with CFS due to poor detox, but maybe the China illness requires stronger doses like that.
  7. hanchuchu

    hanchuchu Senior Member

    subsequent report from PRC new agency--the last crazy moment

    国家疾控中心已成立课题研究组,但这个特殊人群的大多数仍生活在病痛与恐惧中末路疯狂:阴性感染者的深渊类别:深度调查 作者:鲍小东 原创 浏览量:0  发布时间:2009-12-02 手机看新闻

    版次:AT04 版名:深度周刊 重磅 稿源:南方都市报 摘要:所谓扎阳,是指阴性感染者用针头在艾滋病人身上扎针,然后再回扎自己,或直接与艾滋病人性交,使自己变成真正的艾滋病人,以此获得治疗。

















    他们进行H IV抗体检测和治疗,结果都是阴性,病情也不见好转。一年多后,很多症状自行消失了,这个拥有大学学历的女人以为这是拜神的结果。













    对于专家们 的 恐 艾说,末路质问:如果只是恐艾,怎么会有这么多症状,而且如此传染呢?

    很多 病人 都有着与末路相 似 的经历:多次检测被排除艾滋病,医生们认为他们是恐艾,建议他们与家人正常生活,解除碗筷分开、不过夫妻生活等等隔离式生活。结果是全家中招。





    现在,她加入了一个自杀群,在Q Q群里,这些得了绝症的人们探讨着各种自杀方式,有的人相约一起自杀。





    曾光是国家C D C流行病学首席科学家、博士生导师,W H O传染病监测和应急反应科学委员会委员,中国现场流行病学培训项目执行主任,国务院特殊津贴获得者。








    之前的10月14日,本报刊发了1.5万字的关于阴性感染者的调查报道,10月20日,12名来自全国各地的心急病人,自发前往北京。国家CD C相关部门热情接待了他们,并及时动用国内最先进的技术,同时使用多种方法,对他们进行了H IV病毒、丙肝、梅毒、免疫值等项目进行检测,结果发现他们均无问题。





    我知道在Q Q群里,像我这样的有钱人只有几个,大多数人经济都很困难,他们打一份工,工资一两千元,根本吃不起这药。所以,他们想去扎阳。末路说。

    所谓扎阳,是指阴性感染者,用针头在艾滋病人身上扎针,然后再扎在自己身上,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。他们通过Q Q群寻找艾滋病人。






    对于改变了整个家庭命运的老公,她已经不再怨恨了,加入Q Q群后,发现很多人都得了这个病,那么我即使现在不得,将来也会得这个病,因为现在娱乐场所这么多。







    末路在和Q Q群里的病人私聊时,发现每个人都有报复社会的行为,深圳的一名男性病友,已经通过上网、去酒吧、找小姐、抠女等方式,传染了100多名女性,均记录了她们的手机号码。






    □采写:本报记者 鲍小东
  8. _Kim_

    _Kim_ Guest


    I translated those articles, but the story is not clear to me.

    Are they saying that some people that are infected with the mysterious illness are purposely contracting AIDS so that they can get health care?
    Did I understand that some are having sex with AIDS patients or using acupuncture needles of AIDS patients to give themselves HIV?

    And what about the CDC Research Group in Beijing? Is this the group that you've been in contact with? What is this group doing to help?

  9. hanchuchu

    hanchuchu Senior Member

    main points of the latest report

    Title--the last crazy moment down to the "end of the road"

    subtitle--Why HIV-negatives (people infected with the unknown virus) are willing to have sex or share needles with HIV-positives? Because once tested positive, they can have access to medical care.

    Main body text summary

    1. a netizen named "end of the road"--whole family get infected. Her brother died of lung cancer. Now, she and her husband are crazily spreading the virus to other people on purpose. She only wants to retaliate the society or death.

    2. a nitizen named "face the reality"--accidently passed the virus to more than ten colleagues in his company located in Shenzhen

    3. CDC--look into it without definite conclusion

    4. infected plan to committe collective suicide

    Thanks for following up.

    I also want to remind you that it is the news report and I cannot ensure every word is real. But obviously, the infected are going crazy...

    I am also suffering everyday, but never think retaliation is a good way to solve the problem. All we need is the CDC to say "yes" to Charles and let the cooperation happen.

    I was told that the CDC just postponed the test recently.
  10. hanchuchu

    hanchuchu Senior Member

    Are you walking away?

    It seems like people are start walking away from this post. I think Kim helped a lot, really a lot. Things are moving forward with UCSF. However, what will happen next is uncertain. The CDC just postponed the test. Although the subsequent news appeared online. Normal people still don't pay much attention.
  11. _Kim_

    _Kim_ Guest


    None of us have access to international media. If we did, we wouldn't be in the position we are in. We are a group of very sick patients and our governments have done nothing but stand in the way of helping us get treatments. We sympathize with you. We understand how frustrating it is to be sick and not know why. We are also afraid about who we might infect.

    But you also have to understand that this is the first time in decades that those with CFS have a chance of hope. Our attention is singly focused on the XMRV news and progress. Some of us (points finger at self) have become obsessed with reading every word in internet print about this unraveling story.

    So, our parallels allow us to have greater empathy for you plight, but our current on-the-edge-of-your-seat story has captured our full attention. I know that I cannot speak for all of the members of this forum, but I believe that we want to help you, but have run out of ideas.

    Please don't take the lack of response to mean that we don't care. But this group has taken on more advocacy in the last 2 months than is probably good for our health. We are writing letters to our government representatives, to newspaper editors, to doctors, to researchers, to TV celebrity doctors. And so far, only a few of these efforts have made any visible difference. Many of our members have pushed themselves into severe relapses recently (known as "crashes") and are putting their health at stake to try and get their voices heard.

    I will not abandon you. And there are many members who are reading every one of your posts and sending you prayers. Some of them have sent me private messages telling me so. I believe you will find the answers you seek. Please be patient.
  12. jackie

    jackie Senior Member

    Hanchuchu...I was wondering if you have investigated and/or received any response from the two sources I suggested in post#86 of this thread?

    By the way, I just found an E-mail for EV MED RESEARCH -

    My own Primary Care Dr. has dropped my HMO Insurance Coverage as of Dec. 01...and I have no P.C. Doc for the time being (unfortunately, this was the one I gave copies of this thread/info to! I don't expect a response from him)

    Also, have you read about "Oxymatrine" or "Matrine" (both apparently used extensively in China for everything from Cancer to Hepatitis). Made from the Sophora plant - it is used as an Immune-modulator.

    Several years ago I intended to import it from China to add to my treatment protocol of Anti-virals - but decided against it. Now, a milder version in a supplement form (called "Equilibrant") is available from a supplier in the U.S.

    Something to consider researching.

  13. hanchuchu

    hanchuchu Senior Member

    Sorry, guys

    I am sorry. The silence in the forum just caused my panic. I suddenly realized you are as sick as us. If you need anything from China, just let me know. I will use my best efforts to provide whatever you want for the heal to CFS.

    Kim, thanks for being with us for such a long time.

    Jackie, I cannot remember whether I have sent the email or not, because I sent too many emails. I will check, if not, I will definitely send.

    since UCSF is in contact with the CDC, I don't think I should seek more assistance from the research center.

    Thanks. I will keep you updated.
  14. Alesh

    Alesh Senior Member

    Czech Republic, EU
    "In China, there are tens of thousands of people infected with an unidentified virus after having sex out of marriage such as sex trade and one night stand, even with condoms in the whole intercourse process, including oral sex."

    May I ask why it matters that the victims had "sex out of marriage"?

    I lived in a communistic country until 1989 and the general health care was in many respects better than it is now.

    I would hate to be wrong and I apologize in advance if I am but your story seems to look like an Christian "values" ad.
  15. hanchuchu

    hanchuchu Senior Member


    Many well-educated people are worried about the development of China...

    Sex plays a very important role in the transmission of this disease. In big cities, people start to have sex at an earlier age and many have several sex partners. You can find "one night stand" bars runing underground. However, I emphasized a lot on the way of spreading--it could be passed via saliva. Many infected claimed that their whole family get infected because they live together. The Chinese always share the same dish...but people in western world always divide the food to their own bowels. Some was infected by their girlfriends or boyfriends, with condoms in the whole process. That's why we always believe the virus can be passed via saliva, meaning kiss-pass-virus.

    an Christian "values" ad--well, it is all my personnel value and has nothing to do with this post. I exposed myself to western culture and received a pro-west education. I hope I answered your question.

    I could live a very good life if I were not sick.

    Always, people doubt the story I am telling...

    Unfortunately, one CDC staff in Guangdong province get infected as well when some infected visited him. Then, the CDC realized it is not "fear of aids"...
  16. markmc20001

    markmc20001 Guest


    Hi Han,

    I have been following this thread, and am curious what your/your friends symptoms are for this disease? Sounds terrible, but I'm curious if it isn't the same thing some of us already are dealing with?

    My symptoms are:
    flu like feeling
    mental and physical fatigue after exertion, ongoing fatigue and weekness
    ringing in ears
    swollen lympth nodes
    chest pain
    sensitivities to chemicals in foods, cleaners, perservatives, medications
    overall soreness of joints
    poor sleep
    poor memory and cognitive disfunction
    problems with gums
    GI tract problems
    mood problems at times; depression, easy irratated, anxiety

    I know each person has a different set of symptoms, and varying levels of disability. ANy of this sounds like your problem?

  17. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    Sex out of marriage can be a marker for promiscuity, especially where it is not so common -- in a place with more conservative social mores than central and western europe. Which would certainly include China and all of asia. Though even then, it is not, of course, a perfect marker of promiscuity and high lifetime partner numbers.

    Promiscuity certainly has a big relationship to sexually transmitted disease, regardless of what christians, druids, or zoroastrians say about it.
  18. hanchuchu

    hanchuchu Senior Member

    Mark, we have all the bolded symptoms... In addition, the white and yellow tongue coating, and the blood stain scattered therein. We also have blood stains underneath the skin, as small as needle-head. Weight-loss and hair-loss. The standing and breath difficulty. The skin will become very dry. You feel a swimming snake or worm is moving inside your body and bite you everywhere. the muscle withers. The traditional doctor diagose "the failure/dsyfunction of spleen". The CD4 and CD8 is lower than normal people and ratio between them will reverse.Some people think it is CFS, but many don't. The way of spreading is different. Sex is only one way of passing the virus. The infected all believe it can be passed via saliva. Some claimed they can pass the virus via sweat... The CDC guy being infected in Guangdong insists it is a super-bacteria instead of virus. People have different ideas about this. But many don't believe it is the mutation of HIV, because no matter how the virus evolves, it can not be so infectious and the syptoms are continous. We all know HIV will have dormant period.

    we are waiting for the CDC to say "Yes" to Charles and let him to identify the unkown so-called "virus" through virochip.

    I don't want to guess anymore, which is meaningless. The syptoms are caused by co-infection, I think.
  19. hanchuchu

    hanchuchu Senior Member

    In China, students in junior high school even starts to have sex... young people always joke "you can only find virgins in the kindergarten". It is sort of exaggeration. But it reflects the big change of the attitude towards sex in China. You can find call-girls in hotels, bars, kTV room... one night stand frequently happens in big cities.
  20. jackie

    jackie Senior Member

    Hi Hanchuchu. Petechiae is also common in Viral infections (problems with blood coagulation), and many of us (especially those with Enteroviruses have the "Tongue" you describe) From what I know of Enteroviruses - they're initially spread through contact with contaminated food/water and person to person, I believe.

    I know you are tired of speculating - but your checklist of symptoms SOUNDS like ME/CFS, caused by XMRV or "XAND" (sexual transmission, saliva)...on a monstrous scale.

    Have the WPI, Dr. Coffin, etc. been notified...and what has been their response?

    VIPDX or Cooperative Diagnostics Labs willing to send trial test kits? Is ANYONE responding?


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