Ongoing research: Identifying viruses in tissue and nerve samples from ME/CFS patients

[SWAlexander]

At least two of my questions are answered.

Excerpt:
"It is possible that viruses associated with ME/CFS do not clear from patients after the initial infection, but remain in a persistent state. If that is the case, it is important to search for them in samples beyond just the blood, because those viruses most connected to ME/CFS – especially the polio-type enteroviruses and herpesviruses – can infect nerves and ‘hide’ in tissue."
https://www.meresearch.org.uk/research/proal-059-summary/

 

[Hoosierfans]

So if we get those samples, could we submit them to Proal’s team or are they using an existing bank of samples?

Any idea when they will publish their results? This could be HUGE.

 

[SWAlexander]

Any idea when they will publish their results?

I posted what have read to inform everyone interested. See link to the article.

Maybe some in the States get in touch with Amy Proal.

"Potential benefits"
The results will help clarify if viral activity can contribute to the disease process in ME/CFS, and shed light on which specific viral species are most involved. That could provide the impetus for treatments for ME/CFS that target those viruses.

 

[Hoosierfans]

I’ll see if I can find her email and email her. 😊

 

[Wishful]

While I disagree that these hidden viruses are the root cause of ME, they could add to the severity of ME in some people. Maybe this research can show whether it's a significant percentage of PWME who might benefit from antiviral treatments, or just a small minority.

 

[SWAlexander]

While I disagree that these hidden viruses are the root cause of ME

What else could it be if not viruses? Maybe bacteria, fungus, chemicals etc.
Regardless of the cause it produces cell inflammation.
Inflammation causes the autoimmune system to overreact and affect ALL cells in the body causing multiple symptoms.
The removal of death cells (especially in the brain), caused by inflammation, is the tricky part.
There is only one problem with removing toxic proteins from the brain. These toxic proteins can move into other cells.

Researchers return to Alzheimer's vaccines, buoyed by recent drug success
https://www.reuters.com/business/he...nes-buoyed-by-recent-drug-success-2023-11-20/

 

[Dude]

What else could it be if not viruses? Maybe bacteria, fungus, chemicals etc.
Regardless of the cause it produces cell inflammation....

i find this picture quite fitting. Even if I think it only applies to some of the MECFS people. This graphic shows some recent findings. Ron Davies IDO Metabolic Trap, Low Serotonin in Long Covid, Increased Inflammatory Cytokines in MECFS, impairment in BH4 metabolism,...
I recognize even more values that appear again and again in studies.
The origin could be the inflammation, the question is, what triggers it?

source

 

[heapsreal]

At least two of my questions are answered.

Excerpt:
"It is possible that viruses associated with ME/CFS do not clear from patients after the initial infection, but remain in a persistent state. If that is the case, it is important to search for them in samples beyond just the blood, because those viruses most connected to ME/CFS – especially the polio-type enteroviruses and herpesviruses – can infect nerves and ‘hide’ in tissue."
https://www.meresearch.org.uk/research/proal-059-summary/

There was some sort of study where autopsies were done on several ME pts and they found herpes virus type lesions on their spinal cord.
More research like this would be interesting also. The other thing is, can current Antivirals reach viruses in these tissues??

 

[SWAlexander]

The origin could be the inflammation, the question is, what triggers it?

This is exactly my question.
1967 my dermatologist and later, in 1979, my gynecologist said you have Inflammation. Both Dr's wondered about what is the cause. Virus, bacteria, fungus?
Catecholamines out of balance - permanent low cortisol.
Cytokines are present permanently.
Has science made progress since?

can current Antivirals reach viruses in these tissues??

I have taken a lot of antivirals over a long period of years. If they could reach viruses in these tissues, I would not have psoriasis among multiple other symptoms.

 

[Oliver3]

What else could it be if not viruses? Maybe bacteria, fungus, chemicals etc.
Regardless of the cause it produces cell inflammation.
Inflammation causes the autoimmune system to overreact and affect ALL cells in the body causing multiple symptoms.
The removal of death cells (especially in the brain), caused by inflammation, is the tricky part.
There is only one problem with removing toxic proteins from the brain. These toxic proteins can move into other cells.

Researchers return to Alzheimer's vaccines, buoyed by recent drug success
https://www.reuters.com/business/he...nes-buoyed-by-recent-drug-success-2023-11-20/

It's surely the bodies response to a stressor and not the stressor itself. Virtually everyone is exposed to these stressors

 

[Rufous McKinney]

Reminder that we have unrefreshing sleep, and I believe our brains are not being cleansed properly each night.

CSF is not moving through the system properly, and lymphatics are impaired.

If there are dead cells in our brains, we have having issues clearing that out.

Our system in somehow clogged up. Full of accumulations, debris, etc. This translates as blood stagnation, clearly my lymph system is stagnant as well (I have lymphoma, now too)

Dunno the WHY.

 

[Rufous McKinney]

Maybe viruses/bac/pathogens START the problem and toxins keep it going .

 

[Wishful]

What else could it be if not viruses?

A malfunctioning response to stressors. Our bodies have a vast number of subsystems, with feedback loops to keep them in an optimal state or respond to stressors. It could take only one of those subsystems to malfunction to cause all of our symptoms. To me, the way ME can switch state so rapidly indicates that it's a feedback loop which has its feedback coefficient move to a positive number rather than a negative one, which causes it to lock up in an abnormal state. Some chemicals might be able to overwhelm the feedback to switch it out of that state (thus the temporary remissions), but the coefficient could have other feedback that pushes it even more positive.

We have PWME who claim non-viral initial triggers, which if true, disproves the viral root cause theories. We also have many reports of symptom severity correlating with non-viral factors. I think that's lesser evidence, because viral activity could be affected by those factors too. Viruses can certainly worsen ME symptoms, through multiple pathways, but they certainly are not the only possible theories for ME's root cause.

Regardless of the cause it produces cell inflammation.

Actually, I'm unaware of evidence that ME causes inflammation. Inflammation may be present in some PWME due to a downstream effect of ME's root cause, but maybe it's not mandatory. Inflammation commonly worsens ME severity, but I don't think there's evidence that worsening ME results in more inflammation. If that was true, we'd likely get locked into that state and our serum would show definite severe inflammation. AFAIK the results showing neuroinflammation are still questionable, rather than supported by all studies.

 

[SWAlexander]

Dunno the WHY.

I have a vague notion.
In both cases, the spine and CSF are involved if there is inflammation.

Microglia are a type of glial cell located throughout the brain and spinal cord. They act as the first and main form of active immune defense in the central nervous system (CNS). In response to certain brain injuries or diseases, microglia can change their behavior, becoming activated. This activation plays a key role in the brain's inflammatory response, which can be both protective and, if excessive, potentially harmful. One other theory is, that an overload of spinal or brain inflammation could exhaust microglia activity.

Inflammatory Conditions: Diseases like sarcoidosis, tuberculosis, or certain forms of arteritis can lead to lymphatic obstruction or dysfunction. Even chyle enters the thoracic duct and flows upwards into the thoracic duct. The thoracic duct is the largest lymphatic vessel in the body, and it ascends through the chest, alongside the spine. It continues upwards, eventually reaching the neck.

 

[SWAlexander]

I'm unaware of evidence that ME causes inflammation.

This is very interesting. Would you please provide some evidence?
My understanding is, that inflammation is considered to be one of the potential contributing factors or a consequence of ME disease process.

 

[Springbok1988]

Dr. Chia is doing research right now that is showing enterovirus protein in the peripheral blood leukocytes. They are testing the samples then incubating and testing them again. His lab found enterovirus protein in my sample pre-incubation then much more enterovirus protein post-incubation, indicating an active infection.

This is remarkable research, IMO. I'm glad to see more researchers starting to take enteroviruses more seriously.

 

[Osaca]

This is very interesting. Would you please provide some evidence?
My understanding is, that inflammation is considered to be one of the potential contributing factors or a consequence of ME disease process.

What type of evidence are you looking for that something isn't happening, are all the negative study results on this topic not evidence of it (the most basic ones measuring CRP)?

As @Wishful statest there isn't "evidence that ME causes inflammation...AFAIK the results showing neuroinflammation are still questionable, rather than supported by all studies.". That doesn't mean it couldn't be happening, it just means it isn't proven yet, possibly simply due to a lack of research funding.

Your understanding of it being a "potential factor", however is still correct since a potential factor is a hypothesised occurrence rather than a proven fact.

There's many hypotheses surrounding ME/CFS, some based on pieces of evidence, some not, but proven are only the things which we know that don't play a role (psychological factors, autoimmunity purely mediated by CD-20 B-cells, etc).

 

[heapsreal]

I have taken a lot of antivirals over a long period of years. If they could reach viruses in these tissues, I would not have psoriasis among multiple other symptoms.

I'm the same too. The antivirals help but don't eradicate the viruses. If there was an antiviral to eradicate the particular virus troubling us, we still need some way to fix our immune system, eg if it was ebv, we could potentially catch ebv again.

Also, a 'normal' person gets ebv mono, than recovers and their immune system keeps it suppressed. I think fixing the immune system is closer to a real cure than an antiviral that could eradicate a virus, but I'd take either.

For now, I have to stay on antivirals to maintain my level of function as well as a few other things. Just using what's available for now. I think even with a cure, age is going to make it harder to recover???

 

[SWAlexander]

The origin could be the inflammation, the question is, what triggers it?

The list of BH4 malfunctions, serotonin etc. is very very long, too long to post here.
I have mentioned several times before. https://forums.phoenixrising.me/search/865274/?q=Gs224&o=date

If you would like to go deeper you may look into:

BH4 Tetrahydrobiopterin Genetics: GCH1 variant associated with lower levels of tetrahydrobiopterin (BH4) and total biopterins.
Gs224 SNPedia https://www.snpedia.com › index.php › Gs224
Also involved in Autism, ADHD, and much more.

 

[Wishful]

This is very interesting. Would you please provide some evidence?

As Osaca responded, I can't really provide evidence of lack of evidence. I haven't seen any studies that show that 100% of PWME have significant levels of inflammation, much less that any inflammation is cause by ME. Inflammation might well be a contributing factor in ME severity, but it might be via different mechanisms in different people, and not an issue for others. It's simply too soon to say how much connection there is between ME and inflammation.