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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Wishful

Senior Member
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5,679
Location
Alberta
https://newatlas.com/science/virrion-traps-identifies-viruses/

It's a cheap, simple device for quickly trapping and identifying viruses. This could speed up (and be easier to fund) medical research involving viruses. While I don't believe that viruses play a role in the persistence of the ME state, those who do believe so can look forward to faster/cheaper testing of that theory.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
While I don't believe that viruses play a role in the persistence of the ME state, those who do believe so can look forward to faster/cheaper testing of that theory.

I agree that viruses don't play a role in anything more than a trigger in ME/CFS, not the ongoing cause. Something like this might quickly help some to cross viruses off their list and move on to other possible causes.

I have read many posts here of people that had high viral antibodies to EBV etc. but once they had a PCR test done. Checking for actual viruses in the blood, the PCR tests I've seen here all came back negative except one. That person treated their EBV but still had ME/CFS.

ME/CFS researcher and virologist of 30 years, Robert Naviaux, says that in his experience, most people with this illness that have high antibodies to either viruses or bacterial infections come back PCR negative.

He says the cause of the high antibody titers is usually from the immune system dysfunction in ME/CFS, not any kind of viral or bacterial reactivation.
 

Hip

Senior Member
Messages
17,824
ME/CFS researcher and virologist of 30 years, Robert Naviaux, says that in his experience, most people with this illness that have high antibodies to either viruses or bacterial infections come back PCR negative.

That is an incorrect statement. I am surprised you are not aware that enterovirus is detected by PCR in the tissues of around 20% to 40% of ME/CFS patients.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
That is an incorrect statement. I am surprised you are not aware that enterovirus is detected by PCR in the tissues of around 20% to 40% of ME/CFS patients.

My guess is Naviaux wasn't referring to muscle biopsy PCR tests, just serology or PCR tests within blood samples. I just looked it up in his article, he was talking about serology not biopsy-

Third, latent and reactivated viral and bacterial infections can occur, but in the case of ME/CFS that has lasted for more than 6 months, this may be the exception rather than the rule.

Some doctors and scientists have not done a good job at educating patients and other scientists about the difference between serological evidence of infection in the form of antibodies like IgM and IgG, and physical evidence of viral replication like PCR amplification of viral RNA or DNA, or bacterial DNA.

Supertiters of IgG antibodies mean that the balancing T-cell and NK cell mediated immune activity is decreased. This is a functional kind of immune deficiency that causes an unbalanced increase in antibodies.
Link

It also seems that the finding of enterovirus in ME/CFS doesn't mean that they are causing symptoms. Enterovirus has been found in healthy controls-

Gow et al. reported on the detection of enteroviral RNA in muscle biopsies from 53% of 60 ME/CFS in comparison to 15% of 41 controls [93].
Link

My feeling is enteroviruses are not the ongoing cause of ME/CFS. I think Ron Davis is working on better ways to find viruses in ME/CFS. Maybe he will shed more light on enteroviruses and if they have any impact in the ongoing cause of ME/CFS.
 
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Hip

Senior Member
Messages
17,824
My guess is Naviaux wasn't referring to muscle biopsy PCR tests, just serology or PCR tests within blood samples. I just looked it up in his article, he was talking about serology not biopsy-

It may be the case that he was referring to blood, but it's rather short-sighted to assume that if the virus not in the blood, then it cannot be elsewhere in the tissues, such as in the brain.

There are examples where infection is localized to specific organs, but is not found in the blood. For example, there is evidence to suggest diabetes is caused by enterovirus infection of the insulin cells of the pancreas. But if you test diabetics for enterovirus infection of the blood, I expect it will be negative. You have to look in their pancreas to detect the infection.



It also seems that the finding of enterovirus in ME/CFS doesn't mean that they are causing symptoms. Enterovirus has been found in healthy controls-

I agree: finding enterovirus in gut or muscle tissues in both ME/CFS patients as well as healthy controls suggests that gut or muscle infection is not the only causal factor, or may not be the causal factor at all. It may be infection elsewhere which is the cause. But the problem is that we cannot get access to really important tissues such as the brain or vagus to test, except in post-mortem cases, which are very rare.

It may be that ME/CFS only occurs when very specific parts of the brain are infected, or for example when the vagus nerve is infected. But testing these cannot be done on living patients.
 
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ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
It may be the case that he was referring to blood, but it's rather short-sighted to assume that if the virus not in the blood, then it cannot be elsewhere in the tissues, such as in the brain.

I don't know what Naviauxs' opinion is of viral infections not in the blood. In the article I posted, he was explaining his view on the main cause of high viral or bacterial antibodies found in ME/CFS, which are in the blood.
 

Hip

Senior Member
Messages
17,824
I don't think enterovirus or EBV infection directly causes ME/CFS, in the way that for example the flu infection directly causes symptoms.

When you get the flu, it is a whole-body full-blown infection, with lots of virus in the blood and other organs, and causes its symptoms as a result of the massive immune activation it creates.

But in ME/CFS, we don't really see much evidence of any full-blown infection.

So my feeling is that ME/CFS might be caused by more localized low-level infections, but in critical areas like the brainstem or vagus.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
So my feeling is that ME/CFS might be caused by more localized low-level infections, but in critical areas like the brainstem or vagus.

It seems to me like the brain has to be involved somehow but like you said, it's not easy to get to it find out how. I'm certainly not going to be the first one to volunteer for a brain biopsy. At least not while I'm still upright.:)

It also seems to make sense that the vagus nerve is somehow involved too.
 

Hip

Senior Member
Messages
17,824
It also seems to make sense that the vagus nerve is somehow involved too.

For me, the CCI connection to ME/CFS has been illuminating.

CCI affects the brainstem and autonomic nerves, so maybe ME/CFS arises in cases of CCI due to the latter's affect on the brainstem and autonomic. The autonomic helps orchestrate the immune response, so autonomic dysfunction might cause immune weakness, and could explain why you get these lingering low-level viral infections in the tissues. Might also explain the gut dysbiosis. In this scenario, the viral infection in the muscles and gut could just be a consequence, rather than the cause, of the ME/CFS.

There could be other ways that the brainstem and autonomic become dysfunctional: viral infections in these specific areas might impede brainstem and autonomic functioning. We know that enterovirus can travel from gut to brainstem along the vagus nerve in just 3 days. So this would presumably affect both vagus and brainstem.
 

Wishful

Senior Member
Messages
5,679
Location
Alberta
I don't think enterovirus or EBV infection directly causes ME/CFS, in the way that for example the flu infection directly causes symptoms.

Have you considered the possibility that changes in the immune system due to ME might make it harder for the body to fight enteroviruses properly? Its existence in PWME being a symptom rather than a factor?
 

Hip

Senior Member
Messages
17,824
Have you considered the possibility that changes in the immune system due to ME might make it harder for the body to fight enteroviruses properly? Its existence in PWME being a symptom rather than a factor?

I think that is a plausible possibility.

It could be that there is some immune weakness in ME/CFS that allows these chronic enterovirus infections to exist in the muscle and gut tissues.

But I also think it's possible that the viral infections that trigger ME/CFS could weaken the immune system in the first place.

For example, if these viruses infected the vagus nerve at the time when you first caught them, because the vagus helps orchestrate the immune response, a chronic vagus infection might conceivably weaken immunity. Once immunity is weakened, then perhaps this gives rise to the chronic muscle and gut enterovirus infections. And to bacteria dysbiosis in the gut.
 

Wishful

Senior Member
Messages
5,679
Location
Alberta
I did have one thought about how to test whether enterovirus infection is a symptom rather than a factor: the researchers who tested PWME could retest people who didn't have it at the time of that testing. If more of those people than average developed an infection since then, it would indicate a lower resistance to catching and maintaining an enterovirus infection. Unfortunately, I'm guessing that this type of statistical research would require a larger sample than presently exists, to show significant results.
 

Hip

Senior Member
Messages
17,824
I did have one thought about how to test whether enterovirus infection is a symptom rather than a factor: the researchers who tested PWME could retest people who didn't have it at the time of that testing. If more of those people than average developed an infection since then, it would indicate a lower resistance to catching and maintaining an enterovirus infection. Unfortunately, I'm guessing that this type of statistical research would require a larger sample than presently exists, to show significant results.

That would be one way of determining whether it is a symptom rather than a causal factor.

The other way is to give antivirals which target enterovirus, and seeing whether patients improve. The only potent antiviral we have for enterovirus at present is interferon. Experiments with interferon showed that it frequently gets severe bedbound ME/CFS patients healthy enough to return to work — but only if they have enterovirus ME/CFS. It does not work for herpesvirus ME/CFS.

Of course, again with interferon therapy, it may be that the ME/CFS clears up because it addresses infections in specific organs like the vagus or brainstem, rather than because it helps fight infections in the muscles and gut.

Unfortunately patients relapse again after a several months (though some remain healthy for a year or more), so it's not a long term solution. But to my mind, it does suggest that enterovirus infection may be an ongoing cause of ME/CFS, and not just side effect of having ME/CFS.
 
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Hipsman

Senior Member
Messages
542
Location
Ukraine
A bit off topic, @Hip do you think a virus could cause or trigger ME with gradual onset, if there was no acute viral infections for more than 6 mounts before first symptoms appeared?
Assuming there is no immunodeficiency.
 
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Hip

Senior Member
Messages
17,824
A bit off topic, @Hip do you think a virus could cause or trigger ME with gradual onset, if there was no acute viral infections for more than 6 mounts before first symptoms appeared?

The enteroviruses and herpesviruses linked to ME/CFS can be caught asymptomatically, having no acute symptoms. So you can catch these viruses without knowing it.

Now most cases of ME/CFS, whether rapid or gradual onset, do follow an acute viral infection that the patient observed. But I would imagine that in a certain percentage of patients, a virus may have triggered their ME/CFS, but they caught the virus asymptomatically, so therefore they may have assume that no virus was involved, even though there was a virus.
 

Wishful

Senior Member
Messages
5,679
Location
Alberta
Experiments with interferon showed that it frequently gets severe bedbound ME/CFS patients healthy enough to return to work — but only if they have enterovirus ME/CFS. It does not work for herpesvirus ME/CFS.

It might be that the immune system changes due to fighting the infection causes worse ME symptoms than the patients would experience otherwise. Getting a cold virus makes my ME symptoms worse, but getting over the cold just returns me to my baseline level. Those bedbound patients might have a mild baseline without the virus.
 

Hip

Senior Member
Messages
17,824
ME/CFS researcher and virologist of 30 years, Robert Naviaux, says that in his experience, most people with this illness that have high antibodies to either viruses or bacterial infections come back PCR negative.

It looks like Robert Naviaux no longer believes viruses are not involved in ME/CFS, as Naviaux has started collaborating with virologist Dr Bhupesh Prusty, whose ME/CFS research focuses on HHV-6, and how infection with this virus may create a factor which whacks mitochondria.

Other exciting studies include a new collaboration with the brilliant virologist, Dr. Bhupesh Prusty at the University of Würzburg, Germany. Using a new, cell-based assay system, we are hot on the trail of both the identity and the biological control of the activity in ME/CFS blood that causes fatigue. This “fatigue factor” looks like it could be the same thing that coordinates the mitochondrial and metabolic features of the cell danger response (CDR) and inflammation5, changes impedance in the nanoneedle10, inhibits recovery from illness by blocking the healing cycle9, induces a dauer-like state11, and triggers collagen remodeling over time that can cause acquired forms of Ehlers Danlos-like syndromes.

Source: here.
 
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ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
It looks like Robert Naviaux no longer believes viruses are not involved in ME/CFS, as Naviaux has started collaborating with virologist Dr Bhupesh Prusty, whose ME/CFS research focuses on HHV-6, and how infection with this virus may create a factor which whacks mitochondria.

I think they both have a common goal of finding the "something in the blood" but Naviaux believes that whatever viral infection, bacterial infection, etc. that initially triggers the CDR, is gone. Having already created the CDR, which he sees as a self feeding process.

From the newsletter-

The Cell Danger Response. All
cells mount a coordinated defense when
threatened. This causes disease if it
persists after the threat is gone.

I'm kind of excited though that these guys are working on finding whatever is in our blood causing the mito. dysfunction. That could be a HUGE game changer and possibly lead to the cause.
 

Wishful

Senior Member
Messages
5,679
Location
Alberta
I wonder if the cell danger response could occur primarily in brain cells. It does seem possible. The CDR theory does seem to fit how I think ME works.
 

Hip

Senior Member
Messages
17,824
I think they both have a common goal of finding the "something in the blood" but Naviaux believes that whatever viral infection, bacterial infection, etc. that initially triggers the CDR, is gone. Having already created the CDR, which he sees as a self feeding process.

That's possible I guess, that Naviaux sees it as a self-sustaining process.

Though I find it hard to see how the forces of evolution would create a human body so shoddy that it falls into these self-sustaining metabolic traps. Our genetic makeup has evolved over billions of years, and Prof Paul Ewald argues that any gene which gives rise to disease would have been eliminated by now (with certain exceptions). So from this Ewald perspective, it's hard to explain how a self-sustaining metabolic trap would arise genetically. This is why Ewald argues that diseases are most likely caused by exogenous agents in the form of pathogens.
 
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