The Enterovirus Theory of Disease Etiology in ME/CFS: A Critical Review (O'Neal and Hanson, 2021)

R

Rim1

Messages
56
Guys even if they conduct that kind of study (which we all know is highly unlikely) it would take years for it to be available. Expensive also. I would instead look/push for another source in the near future (like indian or russian pharmacies where at the moment other interferons are available) and try it for myself. Does any of you know any alternative lab who could make interferon lambda if they asked to do so ?
 
Nuno

Nuno

Senior Member
Messages
112
Pep1 said:
Guys even if they conduct that kind of study (which we all know is highly unlikely) it would take years for it to be available. Expensive also. I would instead look/push for another source in the near future (like indian or russian pharmacies where at the moment other interferons are available) and try it for myself. Does any of you know any alternative lab who could make interferon lambda if they asked to do so ?
Click to expand...

Are you not in the cfs research discord group? We have been discussing possible lambda suppliers there
 
R

Rim1

Messages
56
Martin aka paused||M.E. said:
Hip has a road map where it’s mentioned. For antibodies it’s the neutralization test (only a few labs offer it, in Germany IMD Berlin)
In case you want to have a full enterovirus panel you need a PCR taken from a tissue sample (Dr. Chia uses stomach biopsies)
https://mecfsroadmap.altervista.org/#coxsackievirus-b-and-echovirus
Click to expand...

Hello,
I saw that the IMD Berlin tests only a few serotypes. Do you know if the other German lab in Frankfurt named in the roadmap, also does the test privately?
I can't find a way how to contact them.
 
R

Rim1

Messages
56
It should be a public institution. Hope @Hip comes to the rescue and tell how he found the test and the prices. Or if there are other labs in Europe other than those ones.
 
Hip

Hip

Senior Member
Messages
18,109
Pep1 said:
It should be a public institution. Hope @Hip comes to the rescue and tell how he found the test and the prices. Or if there are other labs in Europe other than those ones.
Click to expand...

All the enterovirus testing labs I know are detailed in the roadmap coxsackievirus B and echovirus section. Enterovirus antibody tests by the neutralization are very rare, only a few labs do them.

It can also be hard work dealing with labs, as many do not operate like commercial business (you do not find a Buy button on their website), but more like scientific labs.
 
Hip

Hip

Senior Member
Messages
18,109
Martin aka paused||M.E. said:
The IMD guys are great and very helpful and easy going
Click to expand...

The staff may not necessarily know all the details about their tests though. One ME/CFS patient in the UK I know emailed IMD to confirm they test CVB and echovirus by neutralization, and IMD staff told him they were not neutralization tests.

Later a German patient on this forum offered to phone the lab, and find out more and clarify the issue. He asked to speak to the lab director, and the director confirmed they are actually neutralization tests.
 
R

Rim1

Messages
56
Hip said:
The staff may not necessarily know all the details about their tests though. One ME/CFS patient in the UK I know emailed IMD to confirm they test CVB and echovirus by neutralization, and IMD staff told him they were not neutralization tests.

Later a German patient on this forum offered to phone the lab, and find out more and clarify the issue. He asked to speak to the lab director, and the director confirmed they are actually neutralization tests.
Click to expand...

I get it. Do you know if the greek one has all the 6 CVBs ?
 
Hip

Hip

Senior Member
Messages
18,109
Pep1 said:
Do you know if the greek one has all the 6 CVBs ?
Click to expand...

Yes they do all 6 CVB, but no echoviruses. No email address either, so you have to write. And they are the national lab of Greece, so might be quite busy during this pandemic.

Dr John Chia observes that the CVB and echovirus serotypes most often found in ME/CFS are:

• CVB3 and CVB4 first and foremost
• Then CVB2, EV6, EV7 and EV9
• And then much less EV11

Source: 1
 
sometexan84

sometexan84

Senior Member
Messages
1,241
Hip said:
Yes they do all 6 CVB, but no echoviruses. No email address either, so you have to write. And they are the national lab of Greece, so might be quite busy during this pandemic.

Dr John Chia observes that the CVB and echovirus serotypes most often found in ME/CFS are:

• CVB3 and CVB4 first and foremost
• Then CVB2, EV6, EV7 and EV9
• And then much less EV11

Source: 1
Click to expand...
In this forum, these appear to be the most frequent...

CVB3, CVB4, EV11, EV30
 
R

Rim1

Messages
56
sometexan84 said:
In this forum, these appear to be the most frequent...

CVB3, CVB4, EV11, EV30
Click to expand...

Has Chia also made the tests in normal people to see if they also have chronic enteroviruses? Maybe most of the population has them.
And then maybe all of CFS people have more than one enterovirus causing it(not calculating those who have herpesviruses causing it for example). In that case only a universal antiviral like Draco (or other things i'm not aware of) would be of help I think.
 
Martin aka paused||M.E.

Martin aka paused||M.E.

Senior Member
Messages
2,291
Pep1 said:
Has Chia also made the tests in normal people to see if they also have chronic enteroviruses? Maybe most of the population has them.
And then maybe all of CFS people have more than one enterovirus causing it(not calculating those who have herpesviruses causing it for example). In that case only a universal antiviral like Draco (or other things i'm not aware of) would be of help I think.
Click to expand...
He has. The control group was negative.
 
Hip

Hip

Senior Member
Messages
18,109
Pep1 said:
Has Chia also made the tests in normal people to see if they also have chronic enteroviruses?
Click to expand...

If you look at Dr Chia's MEpedia page, in the "Talks and interviews" and "Media coverage" coverage, there are many links to videos and articles on Dr Chia and his enterovirus work.

From the patient perspective, the main reason to get tested for enterovirus is because a positive result means you can try one of Dr Chia's enterovirus treatments, like oxymatrine. But you can actually try oxymatrine anyway, even without being tested. I tried oxymatrine without being tested, because for years I could not find a neutralization test. But the success rata of oxymatrine is not that high, it did not help me.
 
R

Rim1

Messages
56
Hip said:
If you look at Dr Chia's MEpedia page, in the "Talks and interviews" and "Media coverage" coverage, there are many links to videos and articles on Dr Chia and his enterovirus work.

From the patient perspective, the main reason to get tested for enterovirus is because a positive result means you can try one of Dr Chia's enterovirus treatments, like oxymatrine. But you can actually try oxymatrine anyway, even without being tested. I tried oxymatrine without being tested, because for years I could not find a neutralization test. But the success rata of oxymatrine is not that high, it did not help me.
Click to expand...

Yeah of course I'm considering Oxymatrine. I heard Chia saying it has 52% success rate for enteroviruses but honestly the fact that everyone is looking for other solutions makes me think the success rate can be much lower. Haven't seen any direct success story also (except the 3 ones in the list of success stories you have made).
Hope I'm wrong.
 
Hip

Hip

Senior Member
Messages
18,109
Pep1 said:
I heard Chia saying it has 52% success rate for enteroviruses
Click to expand...

Yes, the success rate with oxymatrine on this forum seems lower.

Dr Chia says 30% of his enterovirus ME/CFS patients make major improvements on oxymatrine, and then a few more make minor improvements, bringing the overall success rate to 52%.

But a poll on this forum found that only 13% of patients achieve a major improvement (in that poll, a "major improvement" was defined as moving up by 1 level or more on the ME/CFS scale of very severe, severe, moderate, mild, remission).

Oxymatrine did not help me (my ME/CFS was triggered by CVB4), but then I also have high IgG antibodies to cytomegalovirus, suggesting I have issues with more than one virus.



Pep1 said:
Has Chia also made the tests in normal people to see if they also have chronic enteroviruses? Maybe most of the population has them.
Click to expand...

Dr Chia validated the ARUP Lab enterovirus antibody tests he used by comparing antibody levels in ME/CFS and healthy controls, see the graph in this post. A lot of ME/CFS patients have chronically high antibody levels, but very few controls have high levels.
 
You must log in or register to reply here.
Back