Does it look like CFS to you guys

[Hip]

The problem here is, no institution we know is willing to help. That is what drives us crazy.

This is definitely a terrible state of affairs in China, and every Chinese person I have communicated with who appeared to have this illness has said the same thing: about the government in China doing next to nothing.

These patients told me that not only does the Chinese government do very little in terms of research into this illness, the government also have stated that it is psychologically caused (which is in contradiction to what some virologists in China say, but the virologists do not want to risk causing trouble by contradicting the government view).



I think the best chances of getting research done may be by going out of China.

A few years ago, I was in contact with one Chinese patient, Kevin, with the disease who was studying at Stanford University in California. He was trying to get research on the Chinese virus done in the USA. He was in contact with Prof Ian Lipkin's department, the Center for Infection and Immunity, at Columbia University. The idea was to identify the Chinese pathogen using molecular methods such as high-throughput sequencing (which identifies pathogens by their genetic fingerprint). Columbia has lots of expertise in this area. But I never heard more from Kevin. One of the emails I gave you is Kevin's.

Early on in this outbreak of the Chinese virus, Professor Charles Chiu of the Division of Infectious Diseases at the University of California got involved in investigating this disease, and I heard that some patient blood / tissue samples were sent to his lab in California, but I heard nothing more.


It is hard to say though whether this outbreak of the Chinese "HIV-like" virus is still growing, or whether it has gone into decline. If you look at the historical infectious outbreaks of ME/CFS in different countries over the last 100 years, you find that the outbreaks do not last long, they typically only last for 2 or 3 years.



In terms of your symptoms, which symptoms do you think might prevent you from going to UCL and studying there? Is it the fatigue, which might make study difficult? Or perhaps the "brain fog" (brain fog = cognitive problems such as memory difficulties, and difficulty in mental concentration)? Or the anxiety symptoms that this neurological virus induces?

 

[Aurator]

China has a huge pollution problem, people don't even go outside because their houses are airtight enough to keep much of the pollution out...Another problem China has, is that most of the population is in complete denial over health science. They have a culture in which they overeat, overdrink, smoke etc.

I hope you don't mind my saying that there's both truth and exaggeration in those statements.

People do go out of their houses, even in heavily polluted cities, but especially in rural areas, many of which escape the worst of the atmospheric pollution. China is vast, and western media outfits rarely penetrate into the rural outback and see the parts of China that are not industrial smogscapes. It doesn't make for great news stories in the west, though, I suppose, to show Chinese people just getting on with life, living to a ripe old age, and not making a catastrophic mess of things.

I think it's a little unfair to characterize Chinese culture as one which overindulges in food, drink and cigarettes. A much bigger percentage of the population are of normal or below normal weight compared with the populations of the UK or USA, for example. A significant percentage of people cannot even afford an adequate diet and are malnourished, and many of the Chinese people I know of the older generation have quite sensible diets compared with those of many in the west, refined sugar and heavily processed foods, for a start, being notable by their absence.

Many Chinese people are keenly aware of the potentially harmful contaminants that can taint some of the foods available to them, and are only too keen to avoid damaging their health as a consequence of eating such foods. The problem is that they are not always in a position to know the full facts about what is in or on what they are eating, and even if they do know they do not necessarily have the choice or the money to buy anything better.

 

[Deltrus]

I think it's a little unfair to characterize Chinese culture as one which overindulges in food, drink and cigarettes.

Yeah my source of info on that is just reddit on that one, some person in China was saying how lots of the people there blame the wrong things for their bad health etc. I know, it isn't that great of a source for info. Really nothing is unless it sources back to objective data.

 

[Hip]

I think what @Deltrus said about pollution is not without it merits, and I had similar thoughts myself. If there were high exposure to toxins, it could potentially make a viral infection worse. This study for example found that inorganic mercury exposure before an acute coxsackievirus B infection increases the severity of the subsequent chronic CVB autoimmune myocarditis.


I have had an ongoing dialogue with myself about whether the virus I caught in London in 2003 is in fact the one and the same as Chinese HIV-like virus. This virus seemed to trigger my ME/CFS, but also caused a number unusual symptoms, many of which are identical to the Chinese virus symptoms.

Both my virus and the Chinese virus produced the following symptoms: mental state changes (extreme anxiety, anhedonia, loss of libido, depression, fatigue), chronic sore throat (lasting indefinitely), chronic nasal congestion, white tongue coating, sudden onset of gum problems (periodontitis), recurring stomach aches, constant flatulence, cold hands and feet, skin changes. More of my viral symptoms listed on my website here.

And my virus produced many of these symptoms in more than 30 people who caught my virus from me.

However, neither myself nor the 30+ others who caught my virus developed chest pain, twitching muscles, or popping or cracking sounds from their joints (crepitus), which are all common with the Chinese virus.

 

[Justin_Sohan]

In terms of your symptoms, which symptoms do you think might prevent you from going to UCL and studying there? Is it the fatigue, which might make study difficult? Or perhaps the "brain fog" (brain fog = cognitive problems such as memory difficulties, and difficulty in mental concentration)? Or the anxiety symptoms that this neurological virus induces?

yes I worry about fatigue may affect my study, but most of my concern is from a economical perspective. Study in London would be a no small expense, at the return may seems not so parallel as I am not healthy anymore.
I did contact with Kevien but there is no respond from him. As you said, our best hope may lie abroad. Yesterday I found some American and British patients of the same problem on medhelp.org, most of them have sexual entercourse with Asian CWS, especially Chinese, and has no idea what happened to them. Their symptom are typical hiv- like virus in China. Here are some links:
http://www.medhelp.org/posts/Undiag...sexual-encounter-with-Asian-girl/show/2440466
http://www.medhelp.org/posts/Undiagnosed-Symptoms/-For-are-all-people-suffering/show/1788264
http://www.medhelp.org/posts/HIV-Prevention/HIV-Symptoms/show/1922064
http://www.medhelp.org/posts/STDs/New-HIV-like-disease-in-chinahelp-pls/show/2114087
http://www.medhelp.org/posts/HIV-Prevention/HIV-Symptoms/show/1922064
http://www.medhelp.org/posts/Undiagnosed-Symptoms/Unknown-HIV-Virus-possibility/show/1735920
http://www.medhelp.org/posts/HIV-Prevention/Prostitute-in-China---HIV/show/1219429

It seems to me that they have the same disease. I am worry about it. If it is a really unknown and coutagious virus and we do nothing about it now, it would be a diseaster for the whole world.

 

[Hip]

@Justin_Sohan
Some of those medhelp.org accounts are pretty vague in terms of describing the symptoms, so the infection that they picked up from the prostitutes could be anything. I have read many accounts online of people picking up mysterious infections after sex with a prostitute, or after a brief sexual affair with someone.

I caught my own virus after kissing someone on a date (no sex involved, just kissing).

Unless the symptoms are a very strong match to the Chinese "HIV-like" virus, it is not really possible to say what they caught.


When I caught my virus in 2003 (which may or may not be the same as the Chinese virus), I became very worried about it, because I saw how severely it affected the people (friends and family) who caught it from me. Myself and two other people rapidly developed severe anxiety symptoms as a result of the neurological effect of the virus on the brain. And I saw how many people who caught my virus developed some permanent personality change. Plus my virus triggered three heart attacks in three previously healthy people (enteroviruses are linked to sudden heart attacks).

I thought that there might be an epidemic of illness in the world as my virus spread. I myself infected around 30 new people within the first year or two (my chronic sore throat I think was shedding viral particles and transmitting the infection). So I figured my virus would start infecting more and more people.

So in 2007, I set up my website describing the symptoms of my virus. I regularly get people from the UK, US, Canada, Australia, and sometimes China, India and other countries posting on my website, saying that after a viral infection they developed the same or similar symptoms.

However, since 2007, there has not been any increase in the number of people arriving at my website with the same symptoms. My website gets around 200 to 400 hits per day, and this number of visitors has remained fairly constant since 2007. So there is no sign of any epidemic from my website statistics.

 

[Hip]

@Justin_Sohan
In terms of your future plans for studying, etc: although you may be feeling quite ill now, in 6 months or a year's time, you may be feeling a lot better, because lots of people who catch this virus in China do seem to improve after a while. So you may have to put your plans on hold for a while, but I think there is a good chance you will be feeling much better before long.

 

[Justin_Sohan]

@Justin_Sohan
In terms of your future plans for studying, etc: although you may be feeling quite ill now, in 6 months or a year's time, you may be feeling a lot better, because lots of people who catch this virus in China do seem to improve after a while. So you may have to put your plans on hold for a while, but I think there is a good chance you will be feeling much better before long.

Thank you for your useful advice. I will consider it. By the way, what is your situation now? Are you feeling any better? And does it affect your career? Sorry if this is a too personal question.

And I really want to do something to this group. Like help get more public exposure overseas. Can you give me some suggestions

 

[Hip]

Thank you for your useful advice. I will consider it. By the way, what is your situation now? Are you feeling any better? And does it affect your career? Sorry if this is a too personal question.

I don't mind personal questions at all.

In my case, I was suffering significant anxiety already for 5 years before I caught my virus, due to developing irritable bowel syndrome (IBS) with diarrhea, which triggered some anxiety symptoms. IBS often causes mental symptoms such as anxiety (generalized anxiety disorder).

However, when I caught the virus in 2003, it quickly caused my already high anxiety levels to shoot through the roof. Once I caught the virus, my anxiety became really quite bad, and so I found it hard to be with people, because social activity would worsen the anxiety.

My anxiety consisted of intense internal mental tension, rather than worry. (In generalized anxiety disorder, anxiety involves mental tension and/or excessive worry about things; in my case, I had mental tension, but not so much worries about things).

My tense anxiety was like the feeling you would get if, when walking down the street, you were suddenly dragged into a dark alley, and suddenly had a gun pointed at your head. If you can imagine the mental tension you would feel in those circumstances, with a gun at your head, that was my anxiety level. My anxiety was like this all day long, year after year.

Of course there was no external reason for my anxiety; my anxiety was caused by the virus somehow turning on the anxiety circuits in the brain.



Then soon after this anxiety, I stared getting severe anhedonia and emotional flatness, which were symptoms even worse than the anxiety. I also started to get short-term memory difficulties, and inability to concentrate.

It was at this point that I stopped being able to work and function normally. In fact, I found it hard even to socialize with friends.

My chronic fatigue syndrome however, did not reach it full levels until around 2 years after catching the virus. At the worst stage, I was so deeply fatigued that I would often be in bed for most of the day and night.

What little energy I had was devoted to trying to find drugs or supplements that could help my condition. I had these severe levels of ME/CFS, anxiety and anhedonia for around 5 years. It was truly hellish time, especially the severe anhedonia and anxiety.



In 2012, I found some supplements that made significant improvements to my anxiety and fatigue levels. These were N-acetyl-glucosamine and high dose selenium. My thread on high dose selenium is here:

High Dose Selenium Significantly Improves My Fatigue and Brain Fog

High dose selenium (400 mcg of yeast-free selenomethionine taken on an empty stomach each day) is something you might want to try yourself, because I found it worked very well for my virus, which may be the same as the Chinese virus. Selenium has an antiviral action against enteroviruses like coxsackievirus B.


I am not working at present, but my health now is such that I could probably do a simple part-time job that was not too difficult, and was very low stress (like most ME/CFS patients, I am very sensitive to stress and any emotional discord).

However, I am still hoping to improve my health even further, which is why I spend the entire day, every day, reading about ME/CFS treatments, slowly trying these treatments, one by one.

 

[Hip]

And I really want to do something to this group. Like help get more public exposure overseas. Can you give me some suggestions

Let me think about that.

One thing you could do is start a forum on the Chinese "HIV-like" illness, either in English or in Chinese, or both languages. That might attract other people with the same symptoms. There are some places where you can set up a simple online forum for free. Here for example.

Or just post on this forum. There are two other threads on the Chinese virus here and here.



But what you should question and contemplate is whether the Chinese "HIV-like" illness is something completely new, or just an unusual form of ME/CFS.

This is an important question for two reasons:

(1) If the Chinese "HIV-like" illness is a form of ME/CFS, then in terms of advocacy and trying to raise awareness and support for this "HIV-like" disease, this can be done within the context of ME/CFS.

ME/CFS suffers from all the same problems as the Chinese "HIV-like" illness: most doctors in the US and Europe think that ME/CFS is an "all in the mind" psychologically-caused condition. Most doctors do not consider ME/CFS to be a physical disease caused by physical factors such as infections and/or autoimmune processes. So on forums like this one, the ME/CFS community puts in a lot of effort to make people understand that ME/CFS is a physical disease, not a psychologically-caused condition.


(2) If the Chinese "HIV-like" illness is a form of ME/CFS, then many of the drug and supplement treatments that are known to help ME/CFS may also work for the Chinese virus.

 

[Hip]

I have a pulmonary restriction

Have you considered sarcoidosis? Sarcoidosis is listed under restrictive lung diseases, and sarcoidosis can cause POTS. POTS can be a secondary condition in a number of diseases, including sarcoidosis, amyloidosis, diabetes, lupus, ME/CFS, fibromyalgia and Lyme.

 

[Gingergrrl]

Have you considered sarcoidosis? Sarcoidosis is listed under restrictive lung diseases, and sarcoidosis can cause POTS. POTS can be a secondary condition in a number of diseases, including sarcoidosis, amyloidosis, diabetes, lupus, ME/CFS, fibromyalgia and Lyme.

@Hip I deleted my first two posts from this thread last night as I realized they were off topic and disrespectful to the OP who is looking for info on the HIV type Chinese virus.

I do not have sarcoidosis or any interstitial lung disease, confirmed via high resolution cat scan, and my lung restriction is neuromuscular or of an extra-pulmonary cause.

Am happy to discuss via PM but am backing out of this particular thread so it can stay on topic and hoping you will be cool with that. Thank you @Hip.