Tissue specific signature of HHV-6 infection in ME/CFS (Bhupesh Prusty)

[junkcrap50]

I think the discovery is more likely to be that Prusty found EBV or HHV6 microRNA as a biomarker. His previous research has found HHV6 miRNA in the brain and another study found HHv6 miRNA in me/cfs patietns. Also, miRNA of viruses is something he's studied before me/cfs. Perhaps he's found them inside T-cells or other immune cells.

I wouldn't be surprised its literally as boring as the micro clots contain HHV6 or EBV and there is a simple way to break them up and ascertain that fact. Would be a simple biomarker showing viral persistence which has proved is happening in the brain which previously we hadn't detected in the blood because the body had wrapped them up in tiny clots. Simple and straightforward and boring pathology rooted in a likely cause of the disease.

I had thought of this. But I don't think so. If the EVB or HHV6 virus or viral proteins are in the microclots, how is it causing systemic problems? Do just part of the protein/virus stick out of the microclot? If the microclots do breakdown overtime, but much more slowly to slow to get rid of them, then how do new clots that form contain the virus or viral proteins? Where are the virus or proteins coming from to be incorporated into new clots? Maybe there are so many microclots that there's an endless supply of me/cfs triggers/irritants. Or that once enough damage has been done, it's locked in.

What would be an awesome expirement would be to separate the microclots from long covid patients and inject them into mice, similar to the studies of fibromyalgia IgG transplants into mice. And see if the microclots alone (or whatver is attached or contained in them) causes long covid in mice.

They also need to replicate Bruce Patterson's expirement where he discovered spike proteins in/on non-classical, persistant monocytes but look for EBV, Lyme, HHV6 proteins in patients with these specific triggers.

There is supposedly a way to measure that they are breaking down ...dimers.

Actually d-dimer blood test is not a reliable way to detect microclots. If you have found microclots (via microscopy) and start anticoagulation therapy, then an increase in d-dimer would indicate you're breaking them down. But these microclots are breakdown resistant and are present even with normal d-dimer levels.

I cant remember if theres any scattered testimonials on people with cfs who tried large doses of valtrex ie 3g

3g/day valtex is based on research by Dr. Martin Learner from Michigan. It was 1g 3x/day and for a very long time, at the very least many months, but could take 6 years. For larger patients (over 170 lbs I think), he recommended 1.5g 3x/day.

I can't remember seeing any patient annecdotes of success of this long term therapy besides those that Dr. Learner claimed. Several stories of patients seeing various levels of improvment on valtrex, but never specifically Dr. Learner's protocol. I've been taking 1g 2x/day for many years, but have found no difference as a result. But based on his protocol, I should be taking 1.5g 3x/day, so I'm taking only 44% of the recommended dose. Insurance won't pay for any more. Though, if I had saved up by not taking any for the first couple years, I could have tried it.

 

[Forummember9922]

I can't remember seeing any patient annecdotes of success of this long term therapy besides those that Dr. Learner claimed. Several stories of patients seeing various levels of improvment on valtrex, but never specifically Dr. Learner's protocol. I've been taking 1g 2x/day for many years, but have found no difference as a result. But based on his protocol, I should be taking 1.5g 3x/day, so I'm taking only 44% of the recommended dose. Insurance won't pay for any more. Though, if I had saved up by not taking any for the first couple years, I could have tried it.

Maybe the trick would be 3g valtrex WITH biofilm/clot buster IE your natto serra, etc. Spitballing and getting off track. Will be interesting to see what the man has to say. As mentioned previously the herpes family destroyer that will enter the central nervous system will be IM-250.

 

[junkcrap50]

There's a new tweet from Prusty suggesting he has found a biomarker.

https://twitter.com/i/web/status/1641403718187753474

"We will announce a biomarker for #MECFS and #LongCovid very soon. A very interesting piece of the puzzle to unfold in coming weeks. Knowingly I did not use the word 'Novel Biomarker' as a lot is known about it and that is actually a very good news. Fingers crossed!"

This is probably linked to the patients vs controls heatmap he tweeted in December: he's found *somethiing* on which patients and controls differ.

Thinking of this some more, I've lost some enthusiasm. What makes this biomarker any different than the half dozen of "biomarkers" that have been found in ME/CFS. "What biomarkers?! There are none!" you say. But many groups have found ways of distinguishing ME/CFS from healthy controls, such as the Australia researchers with calcium channel dysfunction, Hanson's and others metabolimic profiling, Cell Trend's test, Davis's electrical impedance, cytokine analyses, gut microbiome analysis, etc. Those are just the top of my head, here are more: https://me-pedia.org/wiki/Diagnostic_biomarker . Even microclots in long covid haven't been "proven" to be biomarkers for Long Covid. Oh, microclots were also found as a "biomarker" in me/cfs by Pretorius et al.

So unless he has found something unique to viruses or something that directly connects and explains long covid with me/cfs and other viruses, I'm actually pretty pessimistic.

 

[Rebecca under the papyrus]

Thinking of this some more, I've lost some enthusiasm. What makes this biomarker any different than the half dozen of "biomarkers" that have been found in ME/CFS. "What biomarkers?! There are none!" you say. But many groups have found ways of distinguishing ME/CFS from healthy controls, such as the Australia researchers with calcium channel dysfunction, Hanson's and others metabolimic profiling, Cell Trend's test, Davis's electrical impedance, cytokine analyses, gut microbiome analysis, etc. Those are just the top of my head, here are more: https://me-pedia.org/wiki/Diagnostic_biomarker . Even microclots in long covid haven't been "proven" to be biomarkers for Long Covid. Oh, microclots were also found as a "biomarker" in me/cfs by Pretorius et al.

So unless he has found something unique to viruses or something that directly connects and explains long covid with me/cfs and other viruses, I'm actually pretty pessimistic.

Distinguishing us from healthy controls is not the important point, I think. Every abnormality of a disease can do that. For a biomarker it has to also disinguish us from other chronic diseases. Microclots are not specific, they just happen with any inflammation, even those amyloid ones, and e.g. diabetes has more than ME. Virus reactivations are common in everyone with a disturbed immune system.

And things like metabolomic profiling is much too complex for diagnostic purposes.

It seems that the contents of platelets and microvesicles (for which platelets are a major source) are a current target for identifing biomarkers for chronic diseases. So another idea might be that they found a very specific ME-immune signature (of say three proteins, thinking of the heatmap he posted in december) in platelets or microvesicles that can be found relatively easily with a blood test. Or a signature of very specific mitochondrial disturbances induced by viruses, or whatever. As he sais it has something to do with "clot biology".

 

[BrightCandle]

I am more than happy with symptoms + pysiological test to be used for diagnosis. While an actual biomarker would be great and would start the process of drug development it requires more research, but for the purpose of diagnosis its not strictly necessary to have a theory of action for the disease. What we have is a number of abnormalities which combined with the symptom list (Canada criteria, International ME/CFS criteria) we can have good solid rule in diagnoses.

We could have had that at any point in the last decade at least, if we are honest since the finding of the brainstem swelling was in the 1950s we could have had that for 80 years. The issue for diagnosis and symptom relief treatment is clearly not a lack of abnormal tests or an inability to diagnose the condition, many diseases have similar diagnosis processes before a likely biomarker is selected for particular development. The problem is not the biomarker and while it would change things its not going to solve the problem ME/CFS patients face with prejudiced and abusive treatment every day with doctors.

 

[Rebecca under the papyrus]

but for the purpose of diagnosis its not strictly necessary to have a theory of action for the disease.

Absolutely, I just wanted to say that the things we already have are either not specific enough or too complex to be conveniently used as a biomarker.
For simple patient diagnosis the symptoms and elimination of a few things are perfectly fine.

 

[Rufous McKinney]

For a biomarker it has to also disinguish us from other chronic diseases.

I think that is the primary issue- whom ever funds those larger studies enabling distinguishing Our "non Deforming red blood cells" or our "disappeared fingerprints" or the crescent in our throats..from everybody else, that work does not seem to ever happen.

Diagnostics never seem to become anointed by the parties who anoint them. Call out the trumpets.

 

[Rufous McKinney]

This article is about a new nannosensor.........

https://www.ajc.com/pulse/do-i-have...you-in-10-seconds/IBYBLU7ZMND55ERFDVMSOBMT6I/

The American Chemical Society (ACS), a nonprofit organization chartered by the U.S. Congress, announced on March 28 that scientists have used a single-atom-thick nanomaterial to construct a device capable of detecting the viruses that cause COVID-19 and the flu much more quickly than conventional tests for either infection.

 

[Oliver3]

I think that is the primary issue- whom ever funds those larger studies enabling distinguishing Our "non Deforming red blood cells" or our "disappeared fingerprints" or the crescent in our throats..from everybody else, that work does not seem to ever happen.

Diagnostics never seem to become anointed by the parties who anoint them. Call out the trumpets.

Sorry, can you elucidate on the crescent in the neck thing?

 

[bthompsonjr1993]

Distinguishing us from healthy controls is not the important point, I think. Every abnormality of a disease can do that. For a biomarker it has to also disinguish us from other chronic diseases. Microclots are not specific, they just happen with any inflammation, even those amyloid ones, and e.g. diabetes has more than ME. Virus reactivations are common in everyone with a disturbed immune system.

And things like metabolomic profiling is much too complex for diagnostic purposes.

It seems that the contents of platelets and microvesicles (for which platelets are a major source) are a current target for identifing biomarkers for chronic diseases. So another idea might be that they found a very specific ME-immune signature (of say three proteins, thinking of the heatmap he posted in december) in platelets or microvesicles that can be found relatively easily with a blood test. Or a signature of very specific mitochondrial disturbances induced by viruses, or whatever. As he sais it has something to do with "clot biology".

It actually is extremely important to distinguish us from healthy controls. Most doctors dismiss CFS patients as hypochondriacs, or say the symptoms are psychosomatic. Having a quick test that can generate objective proof that we are sick would end this for every CFS patient who ever visits their doctor. It would also force every doctor to abandon their incorrect notion of CFS not being a physical disease. I have been to well over 50 different docs in the 9 years I've had CFS. Less than 5 have ever listened to me and acknowledged that I am sick.

I also agree with @junkcrap50 that when I hear someone claiming a new biomarker, I don't care at ALL. Generates zero hope for me, because fool me once shame on you, fool me 20+ times, shame on me. All I've been hearing since I've had this disease is that some researcher has found a biomarker. Not one single time did these "biomarkers" amount to anything that has helped me at all.

Remember Ron Davis' nanoneedle that was a quick effective test to diagnose CFS patients? Where is it? Nowhere to be found. Just dead in the water. Never diagnosed any of us. I will not believe anyone has found a biomarker until I go into my doctor's office and they test me for CFS with a blood test or a device.

 

[Forummember9922]

This isn't directly related to the announcement of a biomarker. But as someone who got ill from a herpes onset here are some horses in the race for new HSV treatments.

-MRNA Moderna therapeutic vaccine (cure) - 10 years out give or take
-Pretilivir. Works better than valtrex and kills the virus earlier and by a different means. (will likely be authorized to treat hsv infections in 2024 or 2025 but initially only will be available to immunocompromised)
-Im250. A modified version of pretilivir that was shrunk so it can get to more places in the body, notably the central nervous system. I think its only in phase 1

There exists a drug similar to pretilivir that is available in Japan called Amenamivir. If you search this forum theres a user in Germany who gave it 3 weeks and stopped. Said he felt worse.

I cant remember if theres any scattered testimonials on people with cfs who tried large doses of valtrex ie 3g

Either way new weapons in the making. There are other companies competing against modernas mrna but a cures a decade out give or take. We also will have a non therapeutic preventative herpes vaccine in 5-7 years.

I forgot to mention CP-COV03 which could potentially be out quite soon and would treat (maybe) any virus by targeting host cells rather than a virus. Cp-cov03 could be a massive gamechanger even treating the flu, hsv, hpv, etc. The most comprehensive info about it is on the reddit herpescureresearch

 

[junkcrap50]

Every abnormality of a disease can do that. For a biomarker it has to also disinguish us from other chronic diseases.

I agree. But none of these biomarker researchers ever compare ME/CFS to other chronic diseases using their biomarker.

It seems that the contents of platelets and microvesicles (for which platelets are a major source) are a current target for identifing biomarkers for chronic diseases. So another idea might be that they found a very specific ME-immune signature (of say three proteins, thinking of the heatmap he posted in december) in platelets or microvesicles that can be found relatively easily with a blood test.

I hope it works and is unique enough to not need to compare to other diseases. But even the heatmap he posted was comparing me/cfs to healthy. However, HHV6 virus in the brain is so unique/abnormal that it's not very believable that other chronic diseases also have that issue as well (except perhaps yet undiscovered in MS or Alzhiemers).

 

[Rufous McKinney]

on the crescent in the neck thing?

Oh, I am recalling a bunch of folks discovered if you look in our throats, you can see this red crescent on either side of the back of the throat (visible if you open wide).

 

[Rufous McKinney]

But none of these biomarker researchers ever compare ME/CFS to other chronic diseases using their biomarker.

because nobody funds those studies. Researchers don't apply to do those studies.

IN fact, things we hear include:

if you mention your research results to others, its less publishable so the research must remain a big secret

pilot studies never seem to be followed up with any further studies, larger cohorts, better diagnostic definitions etc.

I am again reminded that We are Going to Test All the Drugs in the Nannoneedle: never happened.

 

[Judee]

Sorry, can you elucidate on the crescent in the neck thing?

Some of these threads show pictures:
https://forums.phoenixrising.me/thr...virus-b-titers-me-cfs-onset-after-mono.42248/

https://forums.phoenixrising.me/threads/do-you-have-crimson-crescents.4088/page-7 (post 140 has a picture too)

 

[Oliver3]

Thank you. Another thing to look out for. Bloody hell

 

[Rebecca under the papyrus]

I agree. But none of these biomarker researchers ever compare ME/CFS to other chronic diseases using their biomarker.


I hope it works and is unique enough to not need to compare to other diseases. But even the heatmap he posted was comparing me/cfs to healthy. However, HHV6 virus in the brain is so unique/abnormal that it's not very believable that other chronic diseases also have that issue as well (except perhaps yet undiscovered in MS or Alzhiemers).

I am cautious with the HHV6 in the brain findings. Sure, it's interesting, and infections in the brain are sure not helpful, but it seems that it is not unique to ME. E.g. here is a Harvard review which states that HHV6 is found in healthy brains as well as those with neurological diseases. So while it might play a part in our pathology it's sadly not unique, it seems.
Who knows, maybe other factors lead to specific effects of the infection in ME.

 

[Forummember9922]

Another fun thing to think about RE HHV causing CFS is 'old friends theory' showing how certain bacteria can prevent viral infections from getting out of hand. This becomes relevant when antibiotics precede a CFS onset: the antibiotics hypothetically killing the bacteria that, whether it was good or bad (and maybe not always in the gut) was being used as a shield to certain viruses. You have to give the viruses and the human body credit, it's been a long lasting battle with plenty of time to come up with tactics.

 

[MonkeyMan]

Remember Ron Davis' nanoneedle that was a quick effective test to diagnose CFS patients? Where is it? Nowhere to be found. Just dead in the water. Never diagnosed any of us. I will not believe anyone has found a biomarker until I go into my doctor's office and they test me for CFS with a blood test or a device.

I really feel like we were sold a bill of goods with the "nanoneedle". We were told it would identify what is the problem in the blood, and, years later, have never gotten a convincing explanation for why it just disappeared.

 

[Judee]

I really feel like we were sold a bill of goods with the "nanoneedle". We were told it would identify what is the problem in the blood, and, years later, have never gotten a convincing explanation for why it just disappeared.

I don't. They're just researchers and not God. They can only try to figure this out by testing one theory at a time.

It's not much different than what we do here with all our self-experiments. I mean there have been so many times I was sure I was on the right track...with toxoplasmosis, then with thiamine, then with something else, lather, rinse, repeat... (30+ years of trying things.)

Yeah, I might come back and give an update saying something didn't work for me but then I quickly move on to the next thing because I'm anxious to be well again and it takes all my energy to be focused on the next thing I need to test out.

I think it's the same for them. And don't forget Dr Davis has more in this than just an interest in research. He wants to solve this just as much as we do because of Whitney.

And have you seen how tired they look...

So please stop making it sound like a scam or something.