(POLL) Which of the following viral/bacterial infection tests have you had?

[sometexan84]

I am working on combining all studies over the past 40 yrs to determine which infections are most associated with ME/CFS. (it's not finished)
Will be interesting to see how that correlates w/ ME/CFS testing

All of these have been linked to ME/CFS multiple times over the years (aside from HHV-7 and HHV-8, which are comparatively new to the mix). Some more than others.

There are others w/ major ME/CFS implications such as Lyme, that I purposefully left out. And then you have many other viral, bacterial, and fungal infections that have also been linked to CFS.

That said, many of these in the poll have been mentioned countless times over many years as either a direct or indirect cause or even exacerbation of ME/CFS symptoms.

Feel free to provide additional information in the comments, such as test results, or why you chose to not test for something, or what tests you're planning to get.

 

[Hip]

Good poll.

Note that according to Dr John Chia's research, only coxsackievirus B and echovirus (EV) antibody tests using the neutralization method are sensitive enough to detect these chronic low-level enterovirus infections found in ME/CFS.

The ARUP Lab CVB and EV tests use neutralization, so these are good. So is the EV antibody test from Cambridge Biomedical in Boston good, that is a neutralization test. So these tests are valid.

But the LabCorp antibody test for CVB using the CFT method is not going to be sensitive enough to reliably detect these low-level infections. Nor is the Quest CVB test using CFT sensitive enough. These are not considered valid tests by Dr Chia, in the context of ME/CFS.

Testing for CVB and EV by other antibody methods like ELISA, EIA or IFA are probably not going to be sensitive enough either to detect chronic enterovirus.

 

[Wishful]

I have no idea what tests have been done on me over the years. I do recall one doctor saying I had the antibodies for EBV, but no active infection. Despite lots of tests, nothing abnormal came up in terms of infections.

 

[sometexan84]

I have no idea what tests have been done on me over the years. I do recall one doctor saying I had the antibodies for EBV, but no active infection. Despite lots of tests, nothing abnormal came up in terms of infections.

Ever considered doing enterovirus testing?

 

[sometexan84]

@Hip You never tested for Echovirus? You know that one is like my highest infection, right? And still suspect as initial trigger for my condition.

 

[Hip]

@Hip You never tested for Echovirus? You know that one is like my highest infection, right? And still suspect as initial trigger for my condition.

At the time I did my tests, I did not know any places which offered the echovirus antibody tests by neutralization. ARUP Lab which does offer this echovirus test by neutralization did not accept blood samples from outside the US (it does now).

But ARUP I find ridiculously expensive anyway. Later I discovered IMD in Germany test for EV6 and EV30, for a good price, but that's a limited range.

In any case, once I found I had very high antibody titers to CVB4, that put me firmly in the enterovirus camp. So I know I am an enterovirus ME/CFS patient. It's possible I may have some echovirus co-infections, but I am not paying the $440 cost of the ARUP test to find out. I would not gain anything by determining my echovirus status anyway. If I find a echovirus test for a more sensible price (eg $100 or less), I'll get it.

If had been negative for the coxsackievirus B tests, I would have been more curious to take an echovirus test. But being being positive for CVB already puts me in the enterovirus camp.

In terms of which enteroviruses are most commonly found in ME/CFS patients, Chia says it is this:

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

 

[sometexan84]

but I am not paying the $440 cost of the ARUP test to find out.

Yea, it's nuts.

In terms of which enteroviruses are most commonly found in ME/CFS patients, Chia says it is this:

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

Yea, but wasn't that from a long time ago? I wonder if he still sees it this way.

 

[Hip]

Yea, but wasn't that from a long time ago? I wonder if he still sees it this way.

If we had more ME/CFS patients on this forum testing for coxsackievirus B and echovirus via the ARUP Lab antibody tests, we could run our own poll and find out which are the most common enteroviruses in ME/CFS.

 

[sometexan84]

If we had more ME/CFS patients on this forum testing for coxsackievirus B and echovirus via the ARUP Lab antibody tests, we could run our own poll and find out which are the most common enteroviruses in ME/CFS.

If we have more results in this Poll, then we can just ask them.

"Hey, you said you tested for Coxackie in the poll. Which types did you test and which were you positive for?"

Or I guess create a new poll and make sure to invite all those that said they did the enterovirus tests. I do wish there was a way to get more responses in these things.

 

[Sushi]

One problem is that many of us have been tested for decades and don’t remember all the results.

 

[Hip]

I do wish there was a way to get more responses in these things.

These days, lots of ME/CFS patients have wondered off into various ME/CFS Facebook groups (there are dozens of these), and places like Reddit CFS.

 

[sometexan84]

These days, lots of ME/CFS patients have wondered off into various ME/CFS Facebook groups (there are dozens of these), and places like Reddit CFS.

Speaking of which, I invited Cort to do a Reddit AMA for the CFS sub-reddit a while back. He agreed, but then it fizzled out. He's since emailed me back about it, still wanting to do it. But I forgot to get back to him until just now. When you mentioned it.

At any rate, you think people would like that? Cort Johnson AMA?

I got Michael VanElzakker to "semi-agree" to do one. But said he needs another month or two before he can.

These days, lots of ME/CFS patients have wondered off into various ME/CFS Facebook groups

I know this. This is the best place to be. FB isn't good. You know what the worst place is? Freakin Youtube! Anyone w/ newly diagnosed ME/CFS that goes straight to Youtube for answers might be lead astray immediately and for a long time thereafter. There aren't being videos on youtube that mention anything about viruses or infection. It's extremely commercial.

 

[Hip]

I am not familiar with a Reddit AMA, it stands for "Ask Me Any Question"?

 

[sometexan84]

I am not familiar with a Reddit AMA, it stands for "Ask Me Any Question"?

omg Hip, you are so old

If you didn't google it, then your acronym deciphering abilities are amazing.

AMA = Ask Me Anything

All sorts of people do it, very little-known niche scientists, all the way to like Bill Gates.

 

[Hip]

If you didn't google it, then your acronym deciphering abilities are amazing.

I looked it it up, but within 60 seconds forgot the exact phrase (due to my wonderful memory!), and posted the wrong phrase!

All sorts of people do it, very little-known niche scientists, all the way to like Bill Gates.

Interesting, is the question-asking a text based thing, posting on the Reddit forum?

 

[sometexan84]

@Hip Are you surprised to see that so far C. Pneumoniae is the 2nd highest in the poll?

Interesting, is the question-asking a text based thing, posting on the Reddit forum?

They are text based. On the reddit forum. But reddit has "Sub-Reddits" like there's a million of them, there's one for science, there's one for CFS, there's one for any individual video game every, etc.

https://www.reddit.com/r/science/comments/5tsr50

https://www.reddit.com/r/AskHistorians/comments/i2wfsm

https://www.reddit.com/r/formula1/comments/hszcuw

https://www.reddit.com/r/Music/comments/humu9t

https://www.reddit.com/r/space/comments/humooh

Here's a new one from Joseph Gordon-Levitt! From 2 days ago
https://www.reddit.com/r/movies/comments/i9v907/i_am_joseph_gordonlevitt_project_power_out_now_on/

 

[Abrin]

It's extremely commercial.

I completely agree.

The one thing that I really hate about the majority of people who are offering ME/CFS 'programs' on YouTube is that those programs are so expensive and the videos they do offer on their channel really contain so little free information. A lot of the times they are mostly just testimonials of the people who have gotten well using their 'programs'.

And it isn't like these 'talking heads' don't understand that there is a big subset of people with ME/CFS that can't work full-time either. They will mention that fact in their videos while still asking for thousands of dollars.

 

[Abrin]

AMA = Ask Me Anything

All sorts of people do it, very little-known niche scientists, all the way to like Bill Gates.

I have to admit that my favourite AMAs are the ones that go horribly wrong.

 

[Hip]

@Hip Are you surprised to see that so far C. Pneumoniae is the 2nd highest in the poll?

Yes I am actually. Although I believe a lot of ME/CFS doctors do include Chlamydia pneumoniae in their standard panel of ME/CFS patient tests.

It's also interesting that Dr Chia, in his published letter Diverse Etiologies for Chronic Fatigue Syndrome, found that 9% of all ME/CFS cases had a probably cause of Cpn. By comparison, he found 55% had a probably cause of enterovirus. He is dismissive of herpesvirus causes, though, which might be due to having an enterovirus bias.

 

[Wishful]

Ever considered doing enterovirus testing?

No. At this point there's no consensus on which tests give useful results or what the results mean in terms of chances of certain treatments working. For example, if ME is due to an abortive viral infection hiding in the hypothalamus cells, what tests will reveal that, and what treatments will target that properly?