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Is it a new disease or its CFS ?

Discussion in 'Immunological' started by Omar88, Aug 26, 2012.

  1. Hip

    Hip Senior Member

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    Don't forget that there is a difference between the diagnosis of a particular disease (with all the symptoms and dysfunctional metabolic processes that the disease entails), and the original causes (microbial, toxic or genetic) of that disease.

    For example: type 1 diabetes is an illness in which the pancreas does not produce enough insulin, due to damage or death of the insulin-producing beta cells in the pancreas. If you get diagnosed with type 1 diabetes, this diagnosis is given on the basis of your symptoms and blood tests that show low insulin.

    However, what causes type 1 diabetes in the first place is a different question. In fact, oddly enough, enteroviruses are also strongly suspected, as it is thought enteroviruses may infect and destroy the insulin producing beta-cells in the pancreas, and also enteroviruses may damage or destroy these cells via the indirect autoimmune mechanisms they precipitate (refs: 1, 2, 3, 4, 5).

    So similarly, ME/CFS is a disease that has certain symptoms and certain dysfunctional metabolic processes, and diagnosis should ideally be on the basis of those symptoms and dysfunctional metabolic processes.

    But what causes ME/CFS in the first place (in terms of microbes, toxins genetics, and other factors) is another question, which is a different question to the diagnosis of the condition.
  2. victore

    victore

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    I am a Chinese young boy. I am 19. In China, lots of people infected with an unknown virus. We have 4 claasic symptoms.

    1. stomach which started aching a little and produced gas and bubbling sounds
    2. Popping the Joints. When you lift your leg, or turn the wrist or neck, or other parts, you can hear the sound of joints.
    3. Chronic white tongue coating (called geographic tongue or migratory glossitis).
    4. Beating muscle (But the muscle has not always been beating. It's occasionally, you can even see the skin beating.)

    Every patients have these 4 symptoms. These are classical symptoms. But you didn't mention the ring joints and muscle jump, you only mentioned the joint pain and muscle spasm. So I think our disease is similar, but there are not the same disease. But I think we may be infect with a similar virus. Because we have many similar symptoms. In addition to the four classic symptoms, we still have lots of symptoms.

    Lots of people are infected after high-risk behaviors. They first appeared in fever, rash, herpangina. They think they are infected with HIV. But after three months, their HIV antibody was negative. So many people return to calm, but the symptoms didn't disappear. But this disease is not recognized by the Chinese Ministry of Health. They said that unknow-virus doesn't exist. They said we get AIDS phobia.(the fear of AIDS patients). But once one person catches this virus, it will spread to most other members of their household. Even small children have the white tongue coating. I think the small child don't know AIDS. So we are extramely upset. When I know your web site, I want to get your help.

    Let's geat effort to find the truth.
    My email is victore@sina.com if you have any question, please email me.
    Yocheved likes this.
  3. Survivor84

    Survivor84 Senior Member

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    What do you guys think about emailing major newspapers and media? To help raise attention
    Yocheved and urraco2012 like this.
  4. Hip

    Hip Senior Member

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    Welcome to the forum, Victore.


    Note to everybody here: I have known Victore for a long time, from his many posts on the comments pages of my blog (from June 2011 onwards).

    Victore has good knowledge about the symptoms of the Chinese "HIV-like" virus, so if you have any particualr questions about the Chinese virus, please ask Victore here, and I am sure he will try to answer them accurately.

    For example, I once asked Victore about the incubation period of the Chinese "HIV-like" virus, and he replied: "I asked lot of patients, but their answer are very different. Some people said the incubation period is 2 days. But other people said it's 1 week. In my case, after I ate outside, I got fever and feel gas in my stomach 2 days later."


    Note on some Chinese–English translation issues:

    • Beating muscles = twitching muscles = fasciculation.
    Fasciculation is the medical term for twitching muscles.​

    • Popping joints = ring joints? = crepitus.
    Crepitus is the medical term for the popping sound coming from joints.​
    Crepitus is in fact the sound that you hear when you "crack your knuckles".​


    Teedot likes this.
  5. Survivor84

    Survivor84 Senior Member

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    Thank you hip and Victore
    It seems he has a lot to offer. Hopefully together we can make way. Hip have you ever tried to contact the media where you are? Maybe that will help get attention and for someone to see that this is world wide problem regardless of wether or not there are two typed of illnesses. Its obvious that they are both effecting a large amount of people.
  6. Hip

    Hip Senior Member

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    I have written to the CDC, but got no reply. But there is really too little evidence.

    Even on my website, which has been running since May 2007 and gets a lot of hits (around 200 to 400 unique visitors a day), there is very little evidence of any epidemic. If an epidemic were taking place, then each successive year I would have had more and more people posting on my website with the same symptoms. But in fact there has been no major increase in the numbers of infected people arriving at my site and posting their symptoms over the 5 years that my site has been running. (Though my site has generally got more hits each year: 2008 had 77,859 hits, 2009 had 96,815 hits, 2010 had 83,404 hits, 2011 had 172,828 hits, and 2012 had 152,777 hits).

    Furthermore, there is not much to suggest that the virus I caught as anything more than just a more potent strain of an existing coxsackievirus B or other enterovirus. Most of the symptoms my virus has produced in me are just classic ME/CFS symptoms. The only unusual symptoms are the anhedonia and emotional flatness symptoms produced by my virus, which are not normally a part of ME/CFS, and also the super-extreme anxiety symptoms (though anxiety disorder is not unusual in ME/CFS).

    Yes, the virus I caught has dramatically impacted several people out of my friends and family (a group of 30+ people). One person in this group did not get ME/CFS, but got severe anhedonia and emotional flatness. Another person did not get ME/CFS, but had super extreme anxiety disorder for around a year. There were three heart attacks in my group, one fatal, but then it is known that coxsackievirus B is linked to heart attacks (ref: here). And everyone who caught my virus got some permanent mild mental and physical symptoms. But I have not proof that these symptoms were caused by my virus. I know for certain they were, but I have no objective proof.

    What I think is more important is trying to get the media, and governments, to appreciate in general that there is a strong link between infectious pathogenic microbes of all sorts, and common but serious diseases. Too few people realize that infectious pathogenic microbes of all types are the greatest enemy of mankind, and always have been
  7. Survivor84

    Survivor84 Senior Member

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    I appreciate all that you have said and I completely agree. But I feel so many ppl have been going to doctors complaining of these issues for years and not getting anywhere, we have got to get closer to someone of higher power, we should do what China did. I don't know, what do you feel we could do next to pick up the pace and get recognized?
  8. Hip

    Hip Senior Member

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    If you look at the EMERGING VIRUSES page on my website, which lists all the enterovirus and similar outbreaks that have occurred around the world over the last 15 years, you will see that the CDC already know that a newly mutated, more virulent strain of coxsackievirus B1 may be circulation. This mutated coxsackievirus B1 killed five babies in 2007 alone (probably much more, but these are the known cases).

    This mutated coxsackievirus B1 may well be the virus I caught. If this is the case, then we don't have to inform the CDC, as they already know about this virus.

    So the next question is, what can be done? Well, drug companies don't seem to have that much interest in researching into an antiviral drug for enteroviruses. Though there are many enterovirus antiviral drugs in the pipeline, including the following anti-enteroviral drugs in research:

    Anti-enteroviral drugs in the pipeline:
    BTA-798 (vapendavir)
    TTP 8307
    SCH 48973
    Ro 09-0179
    SDZ 35-682
    MDL-860
    Rupintrivir
    BTA-798
    Picovir (pleconaril)
    R77975(pirodavir)
    LY-122772 (enviroxime)
    WIN 51711 (disoxaril)
    WIN 54954

    But whether these drugs will be effective is another question. The trouble with enteroviruses such as coxsackievirus B1 is that they are RNA viruses, not DNA viruses. RNA viruses always have a much higher natural mutation rate than DNA viruses, so you expect to get lots of newly mutated enterovirus strains appearing all the time. This may make it harder to create an effective antiviral drug.

    What's even worse, is that even in your own body, an enterovirus infection always mutates all the time, and the initial virus you caught actually converts into a number of different mutated strains within your own body. These different strains that appear within your own body are called enteroviral quasi-species.

    So my guess is that this makes it hard to develop and antiviral for enteroviruses, because their high natural mutation rate means that they may quickly evolve into strains that are resistant to the antiviral drug.

    Even worse still, in chronic enterovirus infection, some of the enteroviruses inside you turn into a very different beast, called a non-cytopathic enterovirus. Normal anti-enteroviral drugs cannot touch non-cytopathic enteroviruses, because non-cytopathic enteroviruses actually live within our cells, rather than in the blood or tissues.

    Have you tried oxymatrine, by the way, Teedot? Dr Chia has had considerable success with treating his enterovirus-associated ME/CFS patients with oxymatrine. I tried it several years ago, but it did not seem to help me. I may try it again though.
    Last edited: Jun 28, 2014
    Teedot likes this.
  9. Survivor84

    Survivor84 Senior Member

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    Wow hip, very well said, you have definately done your research. So glad to have met you. I honestly would just like to know what I am dealing with at this point. Haha I had to laugh at that. I feel like I will never have an answer some days. My symptoms are not bad enough yet I notice things but they are managable at this point. Initially was the worst. I am scared to take any treatment until I know exactly what is going on. The thing that scares me is how these things are spread, I believe that the CDC is aware of all emerging viruses. Its funny because it seems like this will not be taken seriously, its seems the only time it may be is if people die in numbers. Not saying anybody will, but thats when moves are made. do you feel that you are getting anywhere as far as research goes from someone elses stand point?
  10. 8eraser8

    8eraser8

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    The best thing to do I think, would be to contact act up, the organisation that was setup to promote and push for treatment and testing for hiv, HIV is also a new illness back then and its only through MAJOR actions and public demonstration that meds were developed and funding was allocated. The reason why CDC and others I believe is not caring is simply they do not want to create panic and they do not want to invest money in it. The only way to get things done would be to FORCE authorities to act, just like act up did during its days for hiv.

    Most patients will be recorded as mentally ill or some imaginary problems, I read that in some cases drs are instructed to diagnose this as mental phobia so as not to initiate more. There definitely I believe must be a reason why all this is not public.
  11. 8eraser8

    8eraser8

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    Hello Victore,
    I was so bad luck and I got the china virus in guangzhou on a business trip, some crazy guy injected me with it. Now I am trying my best to know what it is and possibly seek treatment. But how to treat something that is not identified.

    I would like to know if you know new patients of this disease, hiv like? I have been in contact with a virologist who has accepted to run sequencing for me, but the best chance to detect this virus is to have acute phase blood, I mean blood of an infected person when the symptoms are the highest. I believe 2-3 weeks after infection.

    Hopefully we can help each other. Now my skin is getting many rashes. Let me know, in which city of china are u located?

    How long do you estimate that a person can live after infection?

    does this virus develop into aids?


  12. Survivor84

    Survivor84 Senior Member

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    How do we go about contacting ACT UP?
  13. 8eraser8

    8eraser8

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  14. Hip

    Hip Senior Member

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    It is unfortunately the case is that not very much can be done about a respiratory virus that spreads easily by normal social contact. Even if the CDC knows about such viruses, there is not much they can do. Look at swine flu (or bird flu if and when it appears). Not much could be done, apart from vaccination and distribution of antivirals. Once there is a virus like that, we are often powerless to stop its spread. Blood born viruses like HIV are different, because fortunately in these cases, as long as you modify your behavior, you are largely protected from catching it.

    It is not so much that it takes death to occur before moves are made, it just takes objective proof before action is taken. The great thing about death is that is definite evidence that someone is not very well! It's objective proof!

    But with a virus like mine, people who catch it can offer no objective proof that their symptoms (which are mainly mental anyway, and thus not readily observable) are caused by the virus. If I we could get objective proof, then action would likely be taken.

    The same is the case in ME/CFS in general. If tomorrow a researcher found definitive proof that enteroviruses cause ME/CFS, for example, well then no doubt all the gears of medical science would then whir into action to deal with this, because once there is objective proof, then there is usually a proper response.


    By the way Teedot, have you read the symptom list at the top of the main page of my blog? Would you say that you have the same symptoms, and the same virus? Or are you more a Chinese "HIV-like" virus patient?
  15. 8eraser8

    8eraser8

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  16. Hip

    Hip Senior Member

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    8eraser8, do you have the 4 classic symptoms that Victore said all patients with the Chinese "HIV-like" virus have?
  17. 8eraser8

    8eraser8

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    yes, I did get all this and many others, me I got this virus in china, so I am convinced its this china unknown virus. How many people u know got this new virus? we need to group all and see what can be done, we need scientists, virologists

  18. 8eraser8

    8eraser8

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    Did anyone try to contact ian lipkin, well known virologist who identified many viruses about this unknown hiv like virus

    http://www.mailman.columbia.edu/our-faculty/profile?uni=wil2001 is his university contact info

  19. Hip

    Hip Senior Member

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    Just a few Chinese people who posted on my blog, like Victore (I suggested to Victore to make himself known and say hello on this thread). But I have not got the Chinese virus, I don't think; I have my own nightmare virus. It just has very similar symptoms.

    And unlike the Chinese virus, the symptoms of my virus did not improve after 2 years.
  20. Survivor84

    Survivor84 Senior Member

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    And unlike the Chinese virus, the symptoms of my virus did not improve after 2 years.[/quote]
    If this virus truely is like HIV, the initial symptoms will b the worst. People may go through an asymptomatic phase, it will eventually come back when the immune system becomes weak. :(

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