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Enterovirus Discovery at Stanford--Will a Treatment Follow?

Gemini

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Stanford researchers led by Dr. Jan Carette discovered a key component of the replication machinery of all enteroviruses they tested--host protein SETD3-- and successfully blocked it in an animal model.

Question now--can their discovery be translated into a much needed safe and effective human treatment?

https://www.nih.gov/news-events/nih...st-protein-blocks-enterovirus-infections-mice

www.ncbi.nlm.nih.gov/pubmed/31527793

Good to see NIH funding EV research esp. Dr. Fauci's NIAID.

Ron Davis might find this discovery interesting.

@Janet Dafoe (Rose49) @Hip
 

Hip

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Great research and it looks promising, though drug development is a lengthy process, so even if this went ahead now, it might take 15 years before an antiviral drug becomes available.

But a new anti-enterovirus drug based on the Rega compounds I mentioned in other posts should be available in a year or two.
 

Pyrrhus

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But a new anti-enterovirus drug based on the Rega compounds I mentioned in other posts should be available in a year or two.
I’m curious. What are you basing this on? Last time I spoke with John Chia, he said that the drugs had not started human testing, but Chia predicted that the drugs might enter phase 1 human testing in “a year or two”. As you probably know, roughly 90% of drugs that enter phase 1 never make it to market.
 

Hip

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I’m curious. What are you basing this on? Last time I spoke with John Chia, he said that the drugs had not started human testing, but Chia predicted that the drugs might enter phase 1 human testing in “a year or two”. As you probably know, roughly 90% of drugs that enter phase 1 never make it to market.
It's what some patients of Dr Chia were told, and this in turn is based on what Dr Chia was told by the pharmaceutical guys. Dr Chia was told in around Sept 2018 that it would be ready in two years. So in fact, we may be seeing this drug next year.

I don't understand it either, for the reasons that you give. I guess it is conceivable that the Rega Institute might already have performed some early human testing, which might then speed up the development process.

I do know that the FDA has a fast-track drug development scheme in place, and the FDA have said that any drug which might treat ME/CFS qualifies for fast-track, and this includes antivirals.
 
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consuegra

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It is difficult to determine where these two Rega drugs are now. There were rumors that they were purchased by Novartis and then, more recently, that Gilead had acquired some drugs from Novartis, with the possibility that these Rega drugs might be amongst them.

Chris
 

Janet Dafoe

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Stanford researchers led by Dr. Jan Carette discovered a key component of the replication machinery of all enteroviruses they tested--host protein SETD3-- and successfully blocked it in an animal model.

Question now--can their discovery be translated into a much needed safe and effective human treatment?

https://www.nih.gov/news-events/nih...st-protein-blocks-enterovirus-infections-mice

www.ncbi.nlm.nih.gov/pubmed/31527793

Good to see NIH funding EV research esp. Dr. Fauci's NIAID.

Ron Davis might find this discovery interesting.

@Janet Dafoe (Rose49) @Hip
I sent this to Ron. Thanks.
 

Hip

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It won't make a difference to CFS because CFS is not caused by a virus, it is caused by bacteria, yeast or fungi.
Since the actual cause of ME/CFS is remains unknown (though there are many theories), in terms of use of language, you shouldn't state as a fact that ME/CFS is caused by X, Y or Z. You can state your personal theory that you think ME/CFS may be caused by X, Y or Z, but it should not be stated as a fact. That's just the way language is used in science: carefully distinguishing what is known from what is hypothesized.


Also, you might like to check the success of anti-enteroviral interferon therapy for ME/CFS. Although the virus and the ME/CFS eventually returns several months to a year after interferon therapy is complete, it demonstrates that the anti-enteroviral approach appears to be a viable method of treatment of enterovirus-associated ME/CFS.
 
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consuegra

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Hi,
My daughter's situation is confusing, like many or all others with this disease. She has been sick for 18 years. She has severe photophobia, hyperacusis, PEM, serious fatigue. She lives in a darkened room with air filters and sound generators. She is unable to read, listen to music, have sustained conversations, be on a computer. She lives a life of almost complete isolation. She has a devoted boyfriend, who has stuck with her for the entire time. He is a marvel.

I first heard Dr. Chia talk in London in 2007, at the InvestinME conference. From him and prior, I knew the history of enteroviral connection with ME in the UK. I listened to Dr. Chia carefully - and still do. He really wants to help solve part of this illness.

In his 2007 Dr. Chia spoke of the ARUP coxsackie antibody via neutralization test. Coincidentally I had been running the ARUP coxsackie antibody test on my daughter for several years. I continued doing this for at least ten years, several times a year. My daughter's antibodies for CVB4 were consistently at the highest level, over the ten year period. There was almost no fluctuation. (Other coxsackie antibody test did not pick up a strong response and were modest).

I have tried to get other patients and doctors to do this antibody test via neutralization at ARUP, but no one - I emphasize no one - shows the slightest interest.

This has been the one consistent antibody blood test with my daughter, and, in her case, I believe it means something. Very few doctors know what to say about these results or give them any credibility - none.

My own ARUP antibody result for CVB4 is 1:160. This is strangely high.

For me, there is another thread. My son, two years younger than my daughter, has type 1 diabetes. Type 1 diabetes has some association with coxsackie B4.

My own supposition is that my daughter and my son were both exposed to a coxsackie b4 virus prior to when my third child was born.

My daughter very well might have multiple things wrong with her, but I believe she has a coxsackie b4 infection.

For more than ten years, it has amazed me that very few people pay any attention to Dr. Chia

Chris
cfspatientadvocate.com
 
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Hip

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For me, there is another thread. My son, two years younger than my daughter, has type 1 diabetes. Type 1 diabetes has some association with coxsackie B4.
CVB4 is the virus which triggered my ME/CFS. I caught this in 2003, and as this virus spread to over 30 friends and family, it caused a number of illnesses in these people, including sudden heart attacks with myocarditis in the previously healthy. And in one relative who caught my CVB4 while a young boy, he later developed type 1 diabetes as a teenager. My feeling is that he would never had developed T1D if he had not previously caught CVB4, which as you say is linked to T1D.

The diseases, physical and mental, triggered by my Coxsackie B4 virus in these 30+ people are listed in this post.



I have tried to get other patients and doctors to do this antibody test via neutralization at ARUP, but no one - I emphasize no one - shows the slightest interest.
I wonder if it is the cost of the ARUP lab tests which put people off getting tested? I think the CVB and echovirus tests are around $440 each last time I checked. Although if you have insurance, presumably they will pay. I am in the UK, so I am not too familiar with US health insurance rules.

It's very unfortunate that only antibody tests by the neutralization method are sensitive enough to detect chronic enterovirus infection in ME/CFS patients — because labs offering these neutralization tests are very few and far between. So maybe that's another factor why ME/CFS patients often get tested for herpesviruses, but not enteroviruses. I find it frustrating too that enterovirus is often ignored by both ME/CFS patients and ME/CFS doctors alike.

The only 3 labs I know in the world that offer neutralization tests for coxsackievirus B are: ARUP in the USA, IMD in Germany (but IMD only offer CVB3, 4 and 5 at €34 each), and the Hellenic Pasteur Institute in Greece which tests for CVB1 to 6 for €68.
 
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gbells

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Can someone please explain why enteroviruses matter with regards to CFS. Per MEPEDIA they usually acute and can't establish chronic infection. Sure I can see them contributing to nagase overall but I don't see any reason to think they can persist on their own. https://me-pedia.org/wiki/Enterovirus

Therefore, why treat them at all? If you knock out the underlying chronic infections they should resolve.
 

consuegra

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I thought I read somewhere that Dr.Maureen Hanson was working with Dr. Chia looking into the enteroviral connection? Chris, do you know anything about this?
From April 2019
Maureen Hanson, is also looking for enteroviruses in the blood samples she gets from the cPET tests. She is trying to culture the samples for over 1 month to see the virus can be grown, similar to what Toniolo did for type 1 DM.
 
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consuegra

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I wonder if it is the cost of the ARUP lab tests which put people off getting tested? I think the CVB and echovirus tests are around $440 each last time I checked. Although if you have insurance, presumably they will pay. I am in the UK, so I am not too familiar with US health insurance rules.
This is not my experience. In the US, Medicare will pay for this test. One has to be careful that the sample is actually sent to ARUP, because many labs just send it to wherever they want. Also private insurance often will pay for ARUP testing.

My experience is that enteroviruses in ME are a black hole. People are ignorant as to the history of ME and do not want to bother to do this testing, preferring to chase off in other directions. I have suggested this test to tens of patients and doctors, but I am afraid it is a matter of flat out ignorance/indifference. Twice I have gone to the OMF conferences and found no one interested in coxsackie or any enteroviruses. Consequently I have stopped going. Willful blindness is hard to take.

Chris
 
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Is there a specific series of ARUP tests that are the most potentially valuable for viral involvement / viral treatment in ME? Most ID doctors seem pretty clueless, and my doctor who deals more with ME isn't the most up to date on testing practices I think.
 

Hip

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Is there a specific series of ARUP tests that are the most potentially valuable for viral involvement / viral treatment in ME?
You only need the ARUP tests for coxsackievirus B and echovirus. For herpesviruses like EBV, CMV and HHV-6, you can use regular antibody tests. This roadmap document details the viral tests used by ME/CFS doctors. If you look at the coxsackievirus B and echovirus section, you'll see the ARUP tests.
 
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Thanks for the link. With the range of potential viral infections and with how little information on how to treat them, I wonder if an empirical approach of trialing some antivirals might make sense. I had some possible exposure in SE Asia, so I wonder if it could also be something that we just don't have tests for yet as that part of the world seems to have a range of pathogens, especially in rural areas.

I also have a weird reaction to blood work that has worsened as my condition has worsened. The last blood test (which was several vials) I seemed to go into shock afterward (not the usual fainting type reaction). Eventually they got my body temperature and convulsions under control, but it was an unpleasant experience. So now I have to be careful to only do one vial at a time, which is a hassle.

I did have a doctor 'diagnose' me with CIRS, but MARCONs came up negative and his treatments were not particularly helpful, so I question that pathway.