The Enterovirus Theory of Disease Etiology in ME/CFS: A Critical Review (O'Neal and Hanson, 2021)

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It will work.

I was thinking I might donate a few hundred, and if we were down to the end and needed more I would donate more. And I bet there are a bunch more people on here who who value their lives enough to make a significant donation. It's either that or we go back to sifting through medical journals and waiting for something to happen.

I bet the average person on here spends more than that every year on supplements that don't do anything for them.
 

sometexan84

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We need a campaign. Only here and there a few hundred won’t be enough.
I think the first step is to find out how many people in this forum are interested. For all we know, the 3 or 4 of us are the only ones. Because if there's not enough interest HERE, then there is no point in creating a campaign.

We have to figure out a way to gauge the potential. It's not smart just to go all out w/out knowing what we're getting into.

I will think more on this.
 
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Maybe I'm confused.

The condensed version of my understanding is as follows:

  • People have speculated for decades that enteroviruses are the cause of CFS
  • Dr. Chia and others have found evidence of active enterovirus infections in a large percentage of people who have CFS
  • Interferon Lambda has been effective at eradicating viruses that are similar to enteroviruses, and for other reasons should be a promising treatment for enteroviruses
Why would someone with CFS not want to fund this?

It would be good if someone could put together a short bullet point argument for why we should do this (including supporting evidence) and create a post gauging interest in donations. I don't have the level of knowledge to do it myself.
 

Pyrrhus

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Why would someone with CFS not want to fund this?
trials with type I interferons generally showed promise only when combined with a direct-acting antiviral drug (DAA). These trials also demonstrated that including type I interferons in such a combination led to intolerable side effects, including brain inflammation.
Right, one reason the side effects were severe is because Type I interferon affects the whole body. But Type III (lambda) works at just the organ barriers (epitheliums), like intestine, lung, etc.
If that's true, then IFN-lambda might not be helpful as it would have no effect on the posited persistent infection in the brain.
 
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What I often ask myself are two questions:

1. How can tenofovir be sometimes that a successful while we know now that enteroviruses go into a none-cytolytic state with only slow and low replication numbers (and while the ssRNA or dsRNA remains in the cell (which itself is not destroyed by cytolysis) and should be uneffected by oxymatrine and tenofovir

2. Tenofovir can't pass the BBB. But there is evidence of viral infection with enteroviruses in the brain. What now?

Maybe someone could help?
 

Pyrrhus

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1. How can tenofovir be sometimes that a successful while we know now that enteroviruses go into a none-cytolytic state with only slow and low replication numbers (and while the ssRNA or dsRNA remains in the cell (which itself is not destroyed by cytolysis) and should be uneffected by oxymatrine and tenofovir

2. Tenofovir can't pass the BBB. But there is evidence of viral infection with enteroviruses in the brain. What now?
Good questions. You may be interested in these discussions:
https://forums.phoenixrising.me/thr...-inflammation-in-old-mice.63127/#post-1030448
https://forums.phoenixrising.me/threads/input-on-treatment-protocol.81150/#post-2294340
https://forums.phoenixrising.me/thr...iew-oneal-and-hanson-2021.84191/#post-2343765
 

sometexan84

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Maybe I'm confused.

The condensed version of my understanding is as follows:
  • People have speculated for decades that enteroviruses are the cause of CFS
  • Dr. Chia and others have found evidence of active enterovirus infections in a large percentage of people who have CFS
  • Interferon Lambda has been effective at eradicating viruses that are similar to enteroviruses, and for other reasons should be a promising treatment for enteroviruses
That condensed version is accurate. You're not confused.

Why would someone with CFS not want to fund this?
I could think of many reasons. Just being a realist, not a pessimist.

Those like @Wishful, who think this viral hypothesis is way off base.

Those that think the infection exists in places of the body IFN lambda will not reach, like @Pyrrhus.

People w/ a large enough lack of base knowledge.

Maybe that think if this is so important, why hasn't it been studied yet, and why has it not garnered grant money for funding?

They don't trust or like me.

They don't trust or like the research group.

They don't think they have an Enterovirus infection. SO many reasons this could be the case, one of which is, they truly do not have an Enterovirus infection. Though, many just haven't tested. Many haven't tested the right way. Etc. etc.
 

sometexan84

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What I often ask myself are two questions:

1. How can tenofovir be sometimes that a successful while we know now that enteroviruses go into a none-cytolytic state with only slow and low replication numbers (and while the ssRNA or dsRNA remains in the cell (which itself is not destroyed by cytolysis) and should be uneffected by oxymatrine and tenofovir

2. Tenofovir can't pass the BBB. But there is evidence of viral infection with enteroviruses in the brain. What now?

Maybe someone could help?
also @Pyrrhus

If I'm wrong, pls let me know but...

I believe neuroinflammation is the only fact we have. That it's there and happening. As opposed to, we all have neuroinflammation due to an active infection found in the CNS, BBB, brain stem, or other part of the brain.

As far as I'm aware, the only information showing ME/CFS patients have infections in the brain, are from those post-mortem autopsies. But these were all people with massively severe symptoms, which one could argue ONLY occurs when the infection manages to reach your brain. And for everyone else with ME/CFS that does not have psychosis, or other extreme neurological symptoms, well maybe we just have brain inflammation but no brain infection.

Kind of like this, where they found massive brain inflammation in dead COVID-19 patients, but zero sign of the virus in the brain.

https://med.stanford.edu/news/all-n...in-brains-of-people-who-died-of-covid-19.html
 

junkcrap50

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Why do you think it will only cost $30,000. Should it not cost much more? Can you get Dr. Chia to get interested in it? Maybe he can apply for a grant of some sort or know researchers who would be interested in trying it for other diseases.
 

sometexan84

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Why do you think it will only cost $30,000. Should it not cost much more? Can you get Dr. Chia to get interested in it? Maybe he can apply for a grant of some sort or know researchers who would be interested in trying it for other diseases.
Because that is the budget estimate from the research team.

And unfortunately, it's actually 30k Euros, not dollars... so it's actually more like $35,000 :headslap:

There's actually NIH grant money going into ME/CFS Enterovirus studies believe it or not... but sadly this would not qualify.
 
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also @Pyrrhus

If I'm wrong, pls let me know but...

I believe neuroinflammation is the only fact we have. That it's there and happening. As opposed to, we all have neuroinflammation due to an active infection found in the CNS, BBB, brain stem, or other part of the brain.

As far as I'm aware, the only information showing ME/CFS patients have infections in the brain, are from those post-mortem autopsies. But these were all people with massively severe symptoms, which one could argue ONLY occurs when the infection manages to reach your brain. And for everyone else with ME/CFS that does not have psychosis, or other extreme neurological symptoms, well maybe we just have brain inflammation but no brain infection.

Kind of like this, where they found massive brain inflammation in dead COVID-19 patients, but zero sign of the virus in the brain.

https://med.stanford.edu/news/all-n...in-brains-of-people-who-died-of-covid-19.html
But tenofovir has not only shown good results in milder cases. Afaik Chia once said that severely ill patients even respond better statistically (I don't have the source).
 
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Because that is the budget estimate from the research team.

And unfortunately, it's actually 30k Euros, not dollars... so it's actually more like $35,000 :headslap:

There's actually NIH grant money going into ME/CFS Enterovirus studies believe it or not... but sadly this would not qualify.
Who is on the research team?
 

Wishful

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Those like @Wishful, who think this viral hypothesis is way off base.
I didn't say it was way off base, just that I haven't seen any evidence that convinces me that it is true. I see lots of possible connections and some measurements that some people interpret as what one might see from a non-standard viral infection, but little in the way of actual detection of viral strains (or definitive byproducts) or improvements from treatments ... and plenty of stories of people who have tried antiviral treatments that should work if it was an enteroviral infection, but showed no benefits.

As I see it, viral infection would trigger immune reactions, which in turn would worsen ME symptoms, so PWME who did show reductions in ME symptoms may simply have been responding to less inflammatory inputs. I expect that at least some of those who had been 'cured of ME' by antiviral treatments didn't actually have ME (since there's no test for it). They may have had non-standard viral infections that looked similar to ME.

As for the proposed treatment, it doesn't sound like a definite '100% cures enteroviral infections'. It sounds more like it works on some infections some of the time. I just see the odds of it working as very low. I think an individual with ME would have a better chance of finding an effective treatment if they had $30k to spend in ethnic markets or ordering unusual herbs&spices&roots&bark&etc.
 

sometexan84

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I didn't say it was way off base, just that I haven't seen any evidence that convinces me that it is true. I see lots of possible connections and some measurements that some people interpret as what one might see from a non-standard viral infection, but little in the way of actual detection of viral strains (or definitive byproducts) or improvements from treatments ... and plenty of stories of people who have tried antiviral treatments that should work if it was an enteroviral infection, but showed no benefits.

As I see it, viral infection would trigger immune reactions, which in turn would worsen ME symptoms, so PWME who did show reductions in ME symptoms may simply have been responding to less inflammatory inputs. I expect that at least some of those who had been 'cured of ME' by antiviral treatments didn't actually have ME (since there's no test for it). They may have had non-standard viral infections that looked similar to ME.

As for the proposed treatment, it doesn't sound like a definite '100% cures enteroviral infections'. It sounds more like it works on some infections some of the time. I just see the odds of it working as very low. I think an individual with ME would have a better chance of finding an effective treatment if they had $30k to spend in ethnic markets or ordering unusual herbs&spices&roots&bark&etc.
Fair enough. But there are no proven antiviral treatments for this type of enterovirus infection, hence the study.

And nothing is a definite 100%, certainly not at the preclinical testing phase.

All we know at this point is...
  • (Type III) Interferon Lambda is a potent antiviral of Enterovirus B
  • Peginterferon Lambda is the name of the drug
  • Chronic Enterovirus B is usually in your gut (GI tract)
  • Peginterferon Lambda works specifically at the GI tract
  • It has never been tested against any Enterovirus, at any level