Latent viruses as a cause of ME/CFS

Jonathan Edwards said:
I don't immediately see anything on EBV from that group on PubMed.
Not sure what the relevance of the fine needle work on Covid is.
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Polybio is great if you know what you have to look for!

Of what I mentioned above nothing has been published yet. They just presented what they're working on and what they have already found out.

 
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PageofME said:
Polybio is great if you know what you have to look for!
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That sort of statement seems custom made to make the other person lose interest.
Blather comes to mind!

I know what I am looking for and have not been impressed over a period of at least 5 years.
You gave the impression that there was stuff of relevance so I wasted half an hour.

I will have a look at that video but I am pretty sure I know what I will think. All the names I see associated with this I have only seen elsewhere associated with second rate Twitter hyped science.
 
Silip said:
But do they? If EBV reactiviation would be the sole culprit of some ME and these drugs work as well as you claim it, we would see hundreds of people getting in remission through them every year.
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I’ve never heard of an ME/CFS patient who responded to valacyclovir going into full remission. As soon as we stop these drugs, we are back to baseline.

Where have you seen 'dozens of people' who tried the Lerner protocol to no avail? We actually already had this discussion in the other thread, where it became clear that the idea of masses of ME/CFS patients having tried the Lerner protocol is a myth. If you're interested, you can catch up on the details over there—and please provide references for your claims.
 
To be honest i have wasted enough time chasing vague pointers from you @PageofME.
When there are some data worth spending time on I will have a look.
I don't recognise any of these people as have contributed anything useful to this field.
 
PageofME said:
I’ve never heard of an ME/CFS patient who responded to valacyclovir going into full remission. As soon as we stop these drugs, we are back to baseline.

Where have you seen 'dozens of people' who tried the Lerner protocol to no avail? We actually already had this discussion in the other thread, where it became clear that the idea of masses of ME/CFS patients having tried the Lerner protocol is a myth. If you're interested, you can catch up on the details over there—and please provide references for your claims.
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Who is "we"? According to your own posts elsewhere it really seems like you aren't profiting much from antivirals therapies.

My main sources are personal contacts with other patients who, like myself, have tried high-dose valaciclovir as well as the experiences of my Dr. who has tried valaciclovir in various patients with heightened EBV antibodies and signs of reactivation.

And it doesn't need huge masses trying it, but as Dr. Lerner prescribed high dose valaciclovir until 2015, Jose Montoya and others working with Dr. Lerner like Dr.Lapp have prescribed it, if I recall it correctly Dr. Myhill or Dr. Weir used to try this sometimes in the UK and there have been others as well as people trying it on their own I'd say we would know if a significant amount of those who tried got massive improvements.

I'd even say the same goes for truvada, which you mentioned elsewhere, as this has been tried by people for "Long Covid with PEM" aka ME to no avail, even more so as it is fairly easy to get, claim to be involved in 'risky' sexual practices and get it as a PrEP for HIV, in my country since 2024 that's even for free.

So I don't think you could make the argument that those haven't been tried enough. If you want you could make this argument for other antivirals used by Lerner, Montoya or others like Valcyte/Valganciclovir which is afaik way more toxic and has more side-effects than valac. and many Drs. and patients have been more reluctant to experiment with this drug.

As you are asking for sources, I am of course also interested in yours.
I am somewhat familiar already with the works of Lerner and Montoya and also know the ridiculous overstatements connected to the "pridgen protocol", but as I am sincerely interested in these theories I of course would be like to read it if there's something important I missed here.
 
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The strongest argument against the viral hypothesis is surely the fact that people can develop ME/CFS without any known viral infection. There are reports of people developing ME/CFS after childbirth or following extreme dehydration. Of course, you can always argue that these people may have had mild or undetected infections, but there is simply so much evidence pointing in other directions.

What I find particularly frustrating is that PolyBio receives so much research funding while seemingly putting almost all of it into a single hypothesis for which there still isn't convincing evidence, despite decades of research.
 
Dude said:
The strongest argument against the viral hypothesis is surely the fact that people can develop ME/CFS without any known viral infection. There are reports of people developing ME/CFS after childbirth or following extreme dehydration. Of course, you can always argue that these people may have had mild or undetected infections, but there is simply so much evidence pointing in other directions.
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I am acutely aware of non-infectious triggers because I can't pinpoint an infection that triggered my own initial ME/CFS flare. That said, I suspect ME/CFS could still have a contagious element: a couple of weeks before my first flare, I went on a date with someone who told me a few days later that he was experiencing mild ME/CFS symptoms. I believe that this is a better explanation for the related cases in families than genetic susceptibilty and a very strong argument for going full force after herpes in ME/CFS.

Regarding the mechanisms around herpesviruses, they are latent—they hibernate in the body and reactivate from time to time. The herpes theory in ME/CFS, in a nutshell, is that initial immune damage (whether triggered by a virus or a non-viral event) leaves the immune system unable to keep early-phase or tissue-specific herpes reactivation in check.
 
Silip said:
Who is "we"? According to your own posts elsewhere it really seems like you aren't profiting much from antivirals therapies.

My main sources are personal contacts with other patients who, like myself, have tried high-dose valaciclovir as well as the experiences of my Dr. who has tried valaciclovir in various patients with heightened EBV antibodies and signs of reactivation.

And it doesn't need huge masses trying it, but as Dr. Lerner prescribed high dose valaciclovir until 2015, Jose Montoya and others working with Dr. Lerner like Dr.Lapp have prescribed it, if I recall it correctly Dr. Myhill or Dr. Weir used to try this sometimes in the UK and there have been others as well as people trying it on their own I'd say we would know if a significant amount of those who tried got massive improvements.

I'd even say the same goes for truvada, which you mentioned elsewhere, as this has been tried by people for "Long Covid with PEM" aka ME to no avail, even more so as it is fairly easy to get, claim to be involved in 'risky' sexual practices and get it as a PrEP for HIV, in my country since 2024 that's even for free.

So I don't think you could make the argument that those haven't been tried enough. If you want you could make this argument for other antivirals used by Lerner, Montoya or others like Valcyte/Valganciclovir which is afaik way more toxic and has more side-effects than valac. and many Drs. and patients have been more reluctant to experiment with this drug.

As you are asking for sources, I am of course also interested in yours.
I am somewhat familiar already with the works of Lerner and Montoya and also know the ridiculous overstatements connected to the "pridgen protocol", but as I am sincerely interested in these theories I of course would be like to read it if there's something important I missed here.
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I have replied in the valacyclovir thread.
 
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