• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

emergency report from China

jackie

Senior Member
Messages
591
Hi Hanchuchu!.....I left some paperwork/info with one of my doctors (their spouse is Chinese) - have not heard back yet (will let you know the response, when I hear).

In the meantime, why not e-mail your story and the pertinent facts to Dr. Nancy Klimas at the University of Miami?

She is very involved in the new XMRV discovery...but more importantly, she divides her time between dealing with HIV/AIDS and CFS patients.

I can't think of a better person to appeal to at this point. (if you are not getting anywhere with the worldwide News media or organizations like WHO etc.)

I've looked up her E-mail and a ph#, and you can find the mailing address on the website - if you wanted to write/mail her (I suggest E-mailing).

Dr. Nancy G. Klimas, Professor Dept. of Microbiology and Immunology

University of Miami Leonard M. Miller School of Medicine

1(305) 243-4664

Her e-mail is: n.klimas@miami.edu

I hope this gives you another option to pursue!

Explain that you found info about her at this forum (you can read about some of her work on several of the threads here under XMRV)...and wondered if she has heard about this emerging deadly disease (that is being ignored by officials!)

I hope you can try this and let us know her response!

Good luck.....jackie:)
 

hanchuchu

Senior Member
Messages
145
Hi hanchuchu, I hear your plea, but I just don't know what to do. I so wish to be able to help you, and I hope someone does but personally speaking, I don't think there is anything I can do. I am young (21) and very sick myself... and many of the people here are very sick as well. This forum is also only a couple months old (if that). That said I'm just not sure that this is the best place to ask for help.

Having you been posting any of this on any other forums? If not I would seek out others - as many as you can - and try to spread this information so hopefully someone who can help you will see it.

The only other advice I can give is that, if you haven't already, try contacting the BBC through their website: http://www.bbc.co.uk/feedback/

Tell them your story and give them the links you pasted here (except for the first two. One is a well known conspiracy theory website (infowars) and the other just seems generally unhelpful. Doomdaily is also a conspiracy theory site from the looks of it. Do not give them those or they might not take you serious - just give them news articles that state the facts.)

Best of luck...

Hi, thank you. Can you recommend some other forums like this, especially about HIV. I want to let more people know the truth. I wrote many email to the WHO officials in the headquater as well. They just ingnored us. I don't know who should we ask for assistance now. They don't know who we are and they cannot detect the virus currently.

Sometimes, I become very crazy and just want to kill myself. But I don't want to die in vain. If my death can make the public know the truth, I can scarifice myself for other infected's benefit.
 

hanchuchu

Senior Member
Messages
145
Hi Hanchuchu!.....I left some paperwork/info with one of my doctors (their spouse is Chinese) - have not heard back yet (will let you know the response, when I hear).

In the meantime, why not e-mail your story and the pertinent facts to Dr. Nancy Klimas at the University of Miami?

She is very involved in the new XMRV discovery...but more importantly, she divides her time between dealing with HIV/AIDS and CFS patients.

I can't think of a better person to appeal to at this point. (if you are not getting anywhere with the worldwide News media or organizations like WHO etc.)

I've looked up her E-mail and a ph#, and you can find the mailing address on the website - if you wanted to write/mail her (I suggest E-mailing).

Dr. Nancy G. Klimas, Professor Dept. of Microbiology and Immunology

University of Miami Leonard M. Miller School of Medicine

1(305) 243-4664

Her e-mail is: n.klimas@miami.edu

I hope this gives you another option to pursue!

Explain that you found info about her at this forum (you can read about some of her work on several of the threads here under XMRV)...and wondered if she has heard about this emerging deadly disease (that is being ignored by officials!)

I hope you can try this and let us know her response!

Good luck.....jackie:)

Thanks Jackie. I will try to contact her and let you know what she will say. I have told you I have written to Judy and she also replied. But I don't think she is going to help possibly. The test conducted on individual basis is not the way of doing research.

Jackie, thanks for you continuous help and concern of our story.
 

hanchuchu

Senior Member
Messages
145
one question

Is there some test which can rule out the mutation of HIV? Nucleic Acid Test? Some of the infected said the PRC CDC used this test and confirmed the unkown virus is not the mutation of HIV (two or three months ago, some infected forced the PRC CDC to take the blood from them, but the CDC is initiating the second round test more organized and seriously currently). Just wonder whether this is true or not.

Anyone knows?

Thanks.

I still hope you can follow up and try to give us some suggestions.
 
K

_Kim_

Guest
Virochip?

Is there some test which can rule out the mutation of HIV? Nucleic Acid Test?
I still hope you can follow up and try to give us some suggestions.

There is a way to find out what your infection is. It's called the Virochip and it was developed by Joe DeRisi. It was designed to detect every known virus. Eric just posted this video on another link. And here is the contact information for DeRisi's Lab.
 

hanchuchu

Senior Member
Messages
145
There is a way to find out what your infection is. It's called the Virochip and it was developed by Joe DeRisi. It was designed to detect every known virus. Eric just posted this video on another link. And here is the contact information for DeRisi's Lab.

"every known virus"--confusing. If the virus is the mutation of HIV, I don't see a possibility to detect. Anyway, I will write and see what they reply. Thank you, Kim. The CDC is undergoing the selection of the infected for the next round test. I will keep updating. Thanks again.
 

hanchuchu

Senior Member
Messages
145
hopeless and helpless

Jackie and Kim, I have sent the email to the person you directed. Unfortunately, no one replied. Maybe they thought I am insane or crazy. It is so hard to gain people's trust. (I think the CFS patients have the same experience as us at the very start) I don't know what is the next step. I know Americans have no duty to help us. But even for research purpose only, it is something worth doing. Now, only Instutite of Pasteur offered to help. Maybe it is our only hope. Feel so exhausted and tired...

Anyway, you guys really helped us a lot by sharing your thoughts. I really don't know how long I can survive, especially in the case of a cross-infection by accident. Take traditional Chinese Medicine everyday...
 

richvank

Senior Member
Messages
2,732
To hanchuchu

Dear hanchuchu,

I have forwarded your posts to the U.S. State Department and to the U.S. Centers for Disease Control. I have written them that I believe that your reports sound credible, and I have encouraged them to check them out. They have international contacts, and hopefully they will take my request seriously.

Rich Van Konynenburg, Ph.D.
 

richvank

Senior Member
Messages
2,732
To hanchuchu

Dear Hanchuchu,

I also forwarded your posts to the Southeast Asia office of the World Health Organization, asking them if they are aware of this disease or whether they can check it out.

Best regards,

Rich
 

hanchuchu

Senior Member
Messages
145
Dear Hanchuchu,

I also forwarded your posts to the Southeast Asia office of the World Health Organization, asking them if they are aware of this disease or whether they can check it out.

Best regards,

Rich

Dear Rich. Thanks for you kind assistance. But I really don't know whether the WHO will take it seriously or not.

If you are medical professional, please let more doctors or researchers know this. We are willing to pay all the cost to take the blood from us, including the round-trip tickets and hotel, etc, if any researcher can transfer our blood to their lab within 24 hours and conduct the relevant research. If possible, I would like to organize people to fly to the US for the test. If any research center want to do a joint research along with Institute of Pasteur of Shanghai, I will use my best effort to make it happen. I have the medical officer's email from that institute and can coordinate this.

I am just a very common citizen. Luckily, I can speak English. So I am here to ask for help.

Just let me know if there is any response from your end.
 

hanchuchu

Senior Member
Messages
145
response from DeRisi Lab

Dear Kim,

The Manager of DeRisi Lab just replied my email, saying that my email has been forwarded to some researcher. I hope they can take it seriously and do some research for us.

Thanks again.

Thank you all, guys.
 

hanchuchu

Senior Member
Messages
145
Can anyone help me find the contact info of David Da-i Ho ?

David Da-i Ho. I want to write emails to him for assistance. He is Taiwanese American and possibly will care about us much more.

http://en.wikipedia.org/wiki/David_Ho_(scientist)


David Da-i Ho (traditional Chinese: 何大一; born November 3, 1952) is a Taiwanese American[1] AIDS researcher famous for pioneering the use of protease inhibitors in treating HIV-infected patients with his team.


If anyone find his contact, please let me know.

Many many thanks.
 
K

_Kim_

Guest
Dear Kim,

The Manager of DeRisi Lab just replied my email, saying that my email has been forwarded to some researcher. I hope they can take it seriously and do some research for us.

Thanks again.

Thank you all, guys.

hanchuchu,

I've got a good feeling about the DeRisi connection. I hope you get another response.

I found this on Dr. Ho:

David Da-I Ho MD
455 1st Ave # 7 New York
New York, 4, 10016-9102
USA

David D. Ho

A single measurement of the amount of the human immunodeficiency virus (HIV) in a patient's blood can predict the subsequent risk of acquired immunodeficiency syndrome (AIDS) or death, even before the patient shows signs of the disease--so reports a paper (Mellors et al., p.1167) in this issue. In his Perspective, Ho discusses why this is the case and why measurement of viral loads will become extremely useful clinically.
The author is at the Aaron Diamond AIDS Research Center, Rockefeller University, 455 First Avenue, New York, NY 10016, USA.

His email for the Aaron Diamond AIDS Research Center goes through one of his assistants:

Contact Denise Gottwald at: dgottwal@adarc.org

Good luck!
~Kim
 

hanchuchu

Senior Member
Messages
145
Thank you, Kim. I will try to contact him via that email.

Rich, I believe you involves in the research of CFS, so I hope you can find some lab which is interested in doing some research for us.

Your thoughts are much helpful, because you have the access to the most updated info.

Thanks. I will update this report on a daily basis if everything goes smoothly for me (although my health is worsening every day).
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Mary, I know you want to help. I have reported this to WHO and can wait for their response for a few days. Advocacy group report may hurt people who believe us and ruin all my prior efforts. The only purpose I am here is to seek assistance from the international community. I wrote emails everyday, but very few reply. Yes, they just don't believe. I don't believe this either until the day I find I am one of the victims. We are "invisible vampires" in real life. Nobody knows who is the next one we are going to bite. But the truth is what if people continuously ingore us and deny the existence of such an unkown infectious virus. When the infected become totally desparate, what will happen? We have contacted a BBC reporter a few days ago and sent him the links. Although he read the links by himself, he still refused to report, saying that the Ministry of Health denies there is such a thing. OK. Denial, ingorance, indifference... People just don't wake up until they become victims like us. I am not afraid of death. One day, we all become dusts.But no people want their beloved to become the next victim, right? Just imagine the pain we are experiencing now. How to get rid of this-one is asking for outside assistance, another is suicide. I am taking the first option now. But what if I cannot tolerant this life anymore? I am not writing for myself. There are thousands of people active in the online chatrooms, exchanging views everyday on what Chinese medicine should take and what is the next move we are going to take. The disease came to the surface more than 6 year ago, but until today, the fact is still buried and people are not aware of the situation and the danger they are exposing.

If I don't update this post anymore, it means something really bad happens to me. I am taking risk to warn people and they just don't want to listen...


Hi Hanchuchu,

There is a group of viruses related to the polio virus, echo and coxsackie virus families, that have many of the symptoms you mention and can follow the nerves and attack the nervous system. Methylcobalamin is being investigated in helpinmg relieve the neurological damage of HIV and it appears to help with nervous system damage of any cause. It also boosts the immune system. Many viruses cause severe b12 deficiency type symptoms for some reason that can be helped with methylcobalamion (mecocobalamin) Most of ther worlds supply is made in China. You might want to check that out on general principles and see if it helps you.
 

hanchuchu

Senior Member
Messages
145
Hi Hanchuchu,

There is a group of viruses related to the polio virus, echo and coxsackie virus families, that have many of the symptoms you mention and can follow the nerves and attack the nervous system. Methylcobalamin is being investigated in helpinmg relieve the neurological damage of HIV and it appears to help with nervous system damage of any cause. It also boosts the immune system. Many viruses cause severe b12 deficiency type symptoms for some reason that can be helped with methylcobalamion (mecocobalamin) Most of ther worlds supply is made in China. You might want to check that out on general principles and see if it helps you.

Thanks. I think I will check. I dare not take medicines like that without a doctor. I feel more comfortable with Traditional Chinese Medicine, because it is safer. Just feel tired of going to hospitals again and again. Really exhausted.
 

hanchuchu

Senior Member
Messages
145
reply from a Ph.d in Aaron Diamond AIDS Research Center

Thanks for this information. I will try to forward your e-mail to Dr. Ho. Since he is very busy, you may not receive reponse swiftly.

Personally, I don't see strong evidence to show that the disease is caused by HIV. Some viruses or microbes may infect human beings via similar pathways, whiich results in similar symptoms. If you want to make sure, my suggestion is that besides western blotting and ELISA for detection of virus-specific antibody, Immunofluorescent cytometry for detection of virus protein and virus DNA/RNA isolation from serum/Primary Blood cells (which are quite common for HIV clinical test), you could use Reverse Transcriptase assay to detect infection by other retroviruses.

Should serum sample be available here, I would like to help.

For any questions, feel free to ask me.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks. I think I will check. I dare not take medicines like that without a doctor. I feel more comfortable with Traditional Chinese Medicine, because it is safer. Just feel tired of going to hospitals again and again. Really exhausted.


Methylb12 is a vitamin, not a medicine per se. It is absolutely required for the body to work. Nothiong else from any planty source can possibly replace it.
 

hanchuchu

Senior Member
Messages
145
failed attempts

Although I emailed many institutes and scientists, I don't think any of them wants to really help. Our voice is too weak. In their eyes, our life may not worth one penny. My health is deteriating day by day. I will try some AIDS drugs. But I don't know what is the purpose of the rest of my life. Virus kills people, indifference kills more. This virus is more infectious and fatal than AIDS.

Arrogant scientists may only believe something proven. I don't know how to persuade them to accept something unknown. The weakness of human beings is that we don't admit how humble we are as a little creature in nature.