1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Coxsackievirus B vaccine appears feasible, and might conceivably abolish ME/CFS in future

Discussion in 'Other Health News and Research' started by Hip, Jan 10, 2013.

  1. Waverunner

    Waverunner Senior Member

    Messages:
    992
    Likes:
    836
    In my eyes, one of the most important things would be, to test us for respiratory viral infections. It should be a sensitive but also cost effective test, like this one at Nanosphere. It includes all kinds of viruses and should cost less, than 100 dollars. Within 1.5 hours you get the results, while sensitivity should be close to 100%. Hip, have you thought about getting yourself tested? Getting this nanosphere test done, is still one of my main priorities but I don't know a place, that runs it.

    http://www.nanosphere.us/product/respiratory-virus-xp

    ...
    Adenovirus (Species A - F)​
    Rhinovirus (Species A and B)/Enterovirus (Species A - D)​
  2. Hip

    Hip Senior Member

    Messages:
    2,723
    Likes:
    2,471
    The only lab that has sensitive enough tests to detect the low levels of enterovirus (coxsackievirus B and echovirus) antibodies present in ME/CFS patients is ARUP Lab. This is the lab Dr Chia uses. Chia found that no other commercial lab was able to detect enterovirus. So this is the only lab to use for enterovirus testing.

    I would like to get tested by ARUP, but they told me they do not accept blood samples from outside the US.

    I have been tested for a range of other viruses linked to ME/CFS, and I know that some of my herpes family viruses were reactivated at the time I took the test.
  3. Hip

    Hip Senior Member

    Messages:
    2,723
    Likes:
    2,471
    Sure, there are sometimes individuals who only get EBV later in life (and some people who never ever catch it at all); but on average, EBV is caught in the teens, so that implies that if EBV were the main triggering virus of ME/CFS, you would then expect, statistically speaking, that most cases of ME/CFS would appear in adolescence. But this is not the case, so in my mind, this discounts the possibility that EBV is a main triggering virus of ME/CFS. This is a statistical argument based on averages; but of course in individual cases, anything might happen.

    And in any case, EBV may well be playing an important role in ME/CFS: if you had a triggering enterovirus infection, the immunosuppressive effects of enterovirus may allow an old latent EBV infection to reactivate, and then this reactivated EBV contributes to your symptoms. Likewise for other herpes family viruses. So this means that antivirals for herpes family viruses may still be useful, even if the trigger of your ME/CFS was an enterovirus.
  4. Hip

    Hip Senior Member

    Messages:
    2,723
    Likes:
    2,471
    Yes there are rare cases of ME/CFS being triggered immediately after hepatitis B vaccination (but no other type of vaccination other than this, as far as I am aware). And as mentioned, physical traumas like car accidents are known to sometimes trigger ME/CFS. And significant exposure to mold toxins does seem to be able to trigger ME/CFS.

    So there are other triggers, it cannot be denied. But the mainstream triggering cause for most people with ME/CFS seems to be viral infection. And in this large virally-triggered subset, my hunch is that enterovirus is the main culprit, based on the arguments above.

    But the other non-infectious triggers are very interesting. I keep trying to find some common denominator across all these various triggers; figuring out what the common denominator is might throw light on some underlying universal causal mechanism for all cases of ME/CFS.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,149
    Likes:
    4,403
    australia (brisbane)
    Im not disagreeing with you but just think there are multiple sub sets, i think ebv/herpes viruses play a bigger role then u think, i say this as there are recoveries or great improvements with valtex/famvir for ebv and valcyte for cmv/hhv6, if entero was playing a big part in these people then they wouldnt get the improvement.

    I think those that dont improve on antivirals with these herpes infections then should really consider bacterial co-infections and entero which is what Lerner is more or less saying, although i havent heard him mention much about enteroviruses. I think klimas though does put her patients pos to entero on equilibrant and if they have ebv etc will also use av's.

    The latest video of dr chia speaking of treatments for enteroviruses didnt really sound that promising, maybe it was his tone?? when asked about treatments he said thay equilibrant is all we really have and it sound half hearted to me, then he said the need to push for a better diagnosis so then big pharma would persue treatments. He did mention interferon treatments but said many felt terrible on it and afterwards have short remissions but he didnt like to use it any more. So i take it he is waiting on other, better meds down the track. He mentions ampligen being helpful in those who's immune system can be stimulated by interferon inducers, which also immunovir and cycloferon are, maybe they are some of the best treatments with equilibrant currently available??
    merylg likes this.
  6. Waverunner

    Waverunner Senior Member

    Messages:
    992
    Likes:
    836
    His test at ARUP has a sensitivity of 95%. The FDA approved viral tests at Nanosphere have a sensitivity of above 99%. Moreover his tests are quite expensive and only test for one(!) virus, while the Nanosphere test looks for a whole bunch of viruses. It would be very interesting to know, if Dr. Chia knows about Nanosphere.
  7. Hip

    Hip Senior Member

    Messages:
    2,723
    Likes:
    2,471
    Remember that the logic of my argument is only about enterovirus being the triggering cause of ME/CFS, but not necessarily that enterovirus is the driving cause of the symptoms and pathophysiology of ME/CFS.

    These are different things.

    EBV or HHV-6 might conceivably be causing 100% of the symptoms of ME/CFS, but still may not be the triggering cause.



    The latest I heard about Dr Chia suggested that he may have someone new up his sleeve: one person who went to see Dr Chia recently posted the following comment on my blog in Nov 2012:
    heapsreal likes this.
  8. Hip

    Hip Senior Member

    Messages:
    2,723
    Likes:
    2,471
    I think Chia would have to validate the Nanosphere test against his ME/CFS patients. This is what Chia did originally: he sent blood samples from his ME/CFS patients (presumably patients that had a positive immunohistochemistry test — the gold standard test for chronic enterovirus infection) to various major commercial labs in the US offering coxsackievirus B and echovirus antibody tests, and found that, out of all the labs he tried, only ARUP Lab was able to positively detect chronic enterovirus infection antibodies in ME/CFS patients. All the other labs' tests came back negative.

    So presumably to see if the Nanosphere test is sensitive enough to detect for chronic enterovirus infection in ME/CFS patients, you would have to perform the same validation against ME/CFS patients.
  9. Hip

    Hip Senior Member

    Messages:
    2,723
    Likes:
    2,471
    On the subject of antivirals for herpes family viruses: I have just done 3 months of Nexavir/Kutapressin injections, which is an antiviral for herpes family viruses. Nexavir has the advantage of having very low side effects, plus it has nice anti-inflammatory properties to boot.

    If Nexavir works for you, you are normally supposed to feel benefits after around two months of treatment. I had very high hopes for it, but I cannot say that I feel any better, even after three months. But like most things, Nexavir only works for some people. It's worth a try (or gamble, should I say) if you don't mind parting with around US$800 for around 3 months supply.
  10. Hip

    Hip Senior Member

    Messages:
    2,723
    Likes:
    2,471
    By the way, Waverunner, where did you read these 95% and 99% figures? Have you got a reference please?

    It certainly looks good if these figures are accurate.
  11. Waverunner

    Waverunner Senior Member

    Messages:
    992
    Likes:
    836
    Hip, I really would love to see more testing in this area. I also tried Nexavir, it helped to some degree but I stopped it after several months, it just didn't pay off.

    Here are the numbers regarding sensitivity/specificity, you just have to click "performance" under the picture:

    http://www.nanosphere.us/product/respiratory-virus-plus

    Target
    Sensitivity (%)
    Specificity (%)
    Influenza Ab
    100​
    100​
    Influenza A - H3
    100​
    100​
    Influenza A - H1
    100​
    99.9​
    Influenza A - 2009 H1N1
    99.5​
    100​
    Influenza B
    100​
    100​
    RSV
    99.1c​
    100​

See more popular forum discussions.

Share This Page