At first I misinterpreted the thing from Resia as being the same substance that Prusty is talking about, Fibronectin vs Fibrinogen. I'm unconvinced that microclots are driving ME/CFS though it might be a factor for some people in PEM or crashes or general fluctuations in symptoms over time, my CFS varied quite a bit over time in terms of symptom presentation and how it feeled, sometimes I liked to go out into the colder air in the evening or just after dark because it seemed to help me a little to cool down. My orthostatic intolerance was really bad early on but it improved over the years, and my POTS came and went. Many subtle feelings e.g. suddenly feeling weak and shaky and getting a strong urge to eat lots of food ( sugar / energy ).
Prusty talks about his upcoming research on a podcast
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Today, I found a paper (previously mentioned by @Consul ) by Maria Ariza, a researcher I have to admit I was not aware of (some of her significant previous work: https://www.mdpi.com/2218-273X/11/2/185 and as @Pyrrhus mentioned in a previous post, there’s more), which links to Prusty and his work. This paper is titled "EBV/HHV-6A dUTPases contribute to myalgic encephalomyelitis/chronic fatigue syndrome pathophysiology by enhancing TFH cell differentiation and extrafollicular activities".
One of the things that is different to most ME/CFS papers is that this paper was actually published in a decent/good journal and it is a comparably massive study, with n=351 for ME/CFS, n=54 for Gulf War Ilness and n=77 for HC. Finally, it builds upon the selection criteria used by Nancy Klimas in the paper “Myalgic encephalomyelitis/chronic fatigue syndrome and gulf war illness patients exhibit increased humoral responses to the herpesviruses-encoded dUTPase: Implications in disease pathophysiology”, that is patients have to meet both Fukunda and Canadian criterium, i.e. these patients are selected well.
One of the main takeaways from the paper is that ME/CFS exhibit heightened serum levels of activin A and IL-21, which positively correlate with increased anti-herpesvirus dUTPase Abs.
From what I can tell this is the first major publication finding differences in serum activin A in ME/CFS. However, only very few studies even look at the effects that virus dUTPases has, and probably close to none in human dendritic cells, and I cannot find other literature where activin A was studied.
Furthermore not many ME/CFS researchers seem to have the ability Maria Ariza has when it comes to HHV-6 and EBV as her research solely focuses on the role of EBV in other diseases such as cancers, Alzheimer, neuroinflammation and to a small extent also ME/CFS.
This study indicates impaired T_FH function in ME/CFS. While an increase in T_FH and circulating T_FH cells has been reported in individuals with infectious mononucleosis, it is the first study to determine whether T_FH cells are altered in ME/CFS or following HHV-6A infection.
It would be lovely if there could be a collaboration between this team in Ohio and Prusty, as the team in Ohio clearly has many things Prusty doesn’t: Big amounts of samples, a bigger research group, ME/CFS publications in big journals and some new ideas of their own. Unfortunately, collaborations in the ME/CFS field are far to rare (Prusty and Ariza collaborated once).
One of the things that is different to most ME/CFS papers is that this paper was actually published in a decent/good journal and it is a comparably massive study, with n=351 for ME/CFS, n=54 for Gulf War Ilness and n=77 for HC. Finally, it builds upon the selection criteria used by Nancy Klimas in the paper “Myalgic encephalomyelitis/chronic fatigue syndrome and gulf war illness patients exhibit increased humoral responses to the herpesviruses-encoded dUTPase: Implications in disease pathophysiology”, that is patients have to meet both Fukunda and Canadian criterium, i.e. these patients are selected well.
One of the main takeaways from the paper is that ME/CFS exhibit heightened serum levels of activin A and IL-21, which positively correlate with increased anti-herpesvirus dUTPase Abs.
From what I can tell this is the first major publication finding differences in serum activin A in ME/CFS. However, only very few studies even look at the effects that virus dUTPases has, and probably close to none in human dendritic cells, and I cannot find other literature where activin A was studied.
Furthermore not many ME/CFS researchers seem to have the ability Maria Ariza has when it comes to HHV-6 and EBV as her research solely focuses on the role of EBV in other diseases such as cancers, Alzheimer, neuroinflammation and to a small extent also ME/CFS.
This study indicates impaired T_FH function in ME/CFS. While an increase in T_FH and circulating T_FH cells has been reported in individuals with infectious mononucleosis, it is the first study to determine whether T_FH cells are altered in ME/CFS or following HHV-6A infection.
It would be lovely if there could be a collaboration between this team in Ohio and Prusty, as the team in Ohio clearly has many things Prusty doesn’t: Big amounts of samples, a bigger research group, ME/CFS publications in big journals and some new ideas of their own. Unfortunately, collaborations in the ME/CFS field are far to rare (Prusty and Ariza collaborated once).
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junkcrap50
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Great find. Consider making a separate thread for the paper & abstract and then just copy your post. It's a new paper, published April 2022. Great to see that group is still working on ME/CFS.
Thanks for the feedback! I would have done so, but unfortunately the thread by @Consul and the response by @Pyrrhus that are mentioned in my above comment did not receive any attention (https://forums.phoenixrising.me/thr...ell-differ-cox-et-al-2022.87590/#post-2397429). That's why I decided to go this route.
Jackb23
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Is it that hard to create an EBV specific antiviral?
Treeman
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I'm probably not the most knowledgeable to comment on this, but doesn't valacyclovir and valcyte stop it reproducing.
Are you asking about a drug to outright kill ebv?
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No, we are not looking for a drug to outright kill EBV, we are looking for something that would be effective against EBV.
Unfortunately, there's no drug in this world that has shown any clinical effectivity against EBV. That's the whole problem.
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Treeman
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I think alot of these things are more about money than ability.
I think It would take millions to develop with little chance of recovery of that money due to not enough of a demand for the drug.
I partially agree. Unfortunately, it is indeed all about money, since that is what the pharmaceutical industry has come to.
But I do not agree that there isn't enough demand. MS, mononucleosis, ME/CFS, Burkitt's lymphoma, Hodgkin's lymphoma, stomach cancer, oral hairy leukoplakia, Epstein-Barr virus-positive mucocutaneous ulcers, Long-Covid and primary effusion lymphoma are just some of the diseases associated or proven to be caused by EBV.
The pharmaceutical industry does not operate by demand and supply. They operate in an almost risk free world. Only if researchers at universities give them all the answers, or countries pay for their research and often even development, will they consider the production of drugs.
I speculate that MCS could be caused by viral reactivation localized in the brain specifically, possibly with a dual factor pre-requisite like leaky BBB or some form of gut dysfunction / bad bacteria in the stomach, or possibly fungal colonisation somewhere in the body. Theres another theory that it could be caused by an overactive NMDA receptor that affects something else ( Martin Pall theory ) https://me-pedia.org/wiki/Nitric_oxide_hypothesis
but if this were correct then why hasn't MCS been successfully cured by now and the treatment well known ? his theory isn't exactly new. I believe I have had occasional issues with some sort of viral re-activation, possibly parvovirus throughout my CFS experience, as I often get burn like sore areas on the sides of my fingers, sometimes seemingly presenting as red marks on the knuckle area or circular rings there that are not raised or sensitive. I understand that not all CFS patients experience full MCS although some may experience mild but limited sensitivities to certain chemicals or materials, rooms where the air isn't very clean ( that was how I was for years ).
but if this were correct then why hasn't MCS been successfully cured by now and the treatment well known ? his theory isn't exactly new. I believe I have had occasional issues with some sort of viral re-activation, possibly parvovirus throughout my CFS experience, as I often get burn like sore areas on the sides of my fingers, sometimes seemingly presenting as red marks on the knuckle area or circular rings there that are not raised or sensitive. I understand that not all CFS patients experience full MCS although some may experience mild but limited sensitivities to certain chemicals or materials, rooms where the air isn't very clean ( that was how I was for years ).
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But the disease burden from MS and ME together is huge - that is how much would be saved if EBV is the most significant factor in both MS and ME. Even if it's EBV and HHV-6a or something that account for most ME cases, it would take a large chunk of that economic hit to the economy. Money back easily!
Corporate medicine needs to be stopped for good.
It's not naive to say that. It's just the only way things will move quickly.
There's gonna have to be a radical acceptance amongst the population that we fund this through taxes like most countries do their armies
Treeman
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I don't think that's definitely been proven, and that's the problem.
More quality research is required.
Treeman
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It sounds good to me, unfortunately I don't make the decision, people who believe the accumulation of individual wealth is the most important thing do.
Forummember9922
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RE EBV treatments theres certainly positive tenofovir testimonials to be found. To which one shows "This person did it for a long time and did not improve" To which I propose- perhaps they are more HHV6 then EBV? I would be interested to see a person who has been on valcyte for 6 months and tenofovir for 6 months but did not greatly improve?
In the UK, we got closer to this ideal with a labour government who wanted to make generic versions of drugs.
This can be done eventually.
I think if the truth about the pandemic cones out, the corporations may be broken up
Judee
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So I don't watch things really because I have a harder time understanding concepts that way but wonder if someone else is planning to watch this (if if will be available for public viewing, that is)?
The #BRMEC12 is invitation only and the #IIMEC15 is a ticket only event
There are videos available from former IIMEC conferences.
ME/CFS Conference @Charité: presentations now available
https://mecfs-research.org/mecfs-conference2023/
https://mecfs-research.org/mecfs-conference2023/