Coxsackievirus B vaccine appears feasible, and may drastically reduce ME/CFS incidence in future

Waverunner

Senior Member
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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)​
 

Hip

Senior Member
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18,148
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?

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.
 

Hip

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18,148
I know they say most people aquire ebv/cmv/hhv6 etc early in life but there are alot of us cfsers who dont have some of these infections

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.
 

Hip

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We might not have weak immune systems to begin with, but that doesn't necessarily mean that a new pathogen is needed to trigger ME/CFS. Stress, toxins, meds, vaccines, aging, gut dysbiosis, any kind of strong environmental insult that shift the balance of the immune system, could trigger a reactivation of prior infections.

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.
 

heapsreal

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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??
 

Waverunner

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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.
 

Hip

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18,148
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:
Hi Hip,
Thanks for your reply. At my appointment, Dr. Chia referenced the hepatitis C drug being developed by Abbot. Apparently it is actually a combination of three medications plus ribavirin (based on information from the trial I found), the latest trial showing a 99% success rate in terms of hepatitis C viral clearance/cure. Here are a couple of links:

http://news.yahoo.com/abbott-hepatitis-c-drugs-produce-high-cure-rates-145615038–finance.html
http://www.bloomberg.com/news/2012-...is-c-drugs-clear-virus-in-99-of-patients.html

I asked him about this and he said it would not be available anytime soon due to pharmaceutical politics. The (possibly incorrect) perception I received from him was that he had something else he was working on that may be effective and available in the near future. He said (with a bit of a sly grin, as though he had figured something out) ‘I may have something to help you soon’. I am guessing this is whatever nucleoside drug he is working with/on that he thinks may be a viable option and is something other than the hepatitis C drug. I will have another appointment with him in January sometime, so I will keep you updated.
 

Hip

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18,148
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.

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.
 

Hip

Senior Member
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18,148
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.
 

Hip

Senior Member
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18,148
His test at ARUP has a sensitivity of 95%. The FDA approved viral tests at Nanosphere have a sensitivity of above 99%.

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.
 

Waverunner

Senior Member
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1,079
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.

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​
 
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