Antivirals as ME/CFS or Long Covid treatments (e.g. valacyclovir, valgancyclovir, amantadine)

Jonathan Edwards said:
That would be surprising for an anti-viral effect.
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Actually not. I've looked into the pharmacology of aciclovir a bit because I'm a self-medicator at the moment and wanted to know how I can figure out to take just enough to have a robust effect while not being too low and increase the risk of resistency.

This effect is consistent with what infectiologists know about aciclovir. It works within one hour – against herpes, of course.

The recommended use for aciclovir is to take 200 mg every hour and then watch whether there is an effect and how much you have to take to have a robust enough answer.

In the ME world I have seen that doctors try herpes drugs with their patients for weeks and months and claim that sometimes it begins to work after many weeks. That's another question and I have no idea why they believe that. But maybe you do?
 
PageofME said:
This effect is consistent with what infectiologists know about aciclovir. It works within one hour – against herpes, of course.
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It may have an effect on viral replication in one hour but that is a very long way from it having noticeable clinical effects. And in a situation of latency one would not expect much to happen at all. The situation is completely different from something like evolving shingles.

PageofME said:
In the ME world I have seen that doctors try herpes drugs with their patients for weeks and months and claim that sometimes it begins to work after many weeks. That's another question and I have no idea why they believe that. But maybe you do?
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I think it unlikely that it makes any difference to ME/CFS at all.
 
Venicequeenf said:
That is interesting. Is it not possible to test active viral persistance/corculation by PcR in EDta blood?

I had a good specialist (rehab) bit she stopped working there and her patients incl me got sent back to the Hausarzt or in other words: they are left to fight alone now which is hard because no one there now to make special blood tests or try new medications
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I understand. It's interesting to hear what's going on in Basel. My specialist is in Chur. Sorry, you lost yours! Do you know that Jonas from the Schweiz. Gesellschaft für ME und CFS has a list of Swiss doctors who know ME?
 
Jonathan Edwards said:
It may have an effect on viral replication in one hour but that is a very long way from it having noticeable clinical effects. And in a situation of latency one would not expect much to happen at all. The situation is completely different from something like evolving shingles.



I think it unlikely that it makes any difference to ME/CFS at all.
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Yes, viral replication stops in one hour and it's not only me personally who feels the effect but it's what that infectious disease clinician claims can be observed in the patients as well.

Latency: I have tried it for one week when I felt I needed a break from pacing. It of course does make a huge difference. I was able to lead a completely normal live for one week because there was't a flare after a couple of hours/days of not staying under my pathological limit of exertion.

The first aciclovir study into ME was done in 1988 because there is anecdotal evidence of it having a good effect in ME since back then. It is also recommended in the contemporary literature that herpes drugs should be investigated further.
pubmed.ncbi.nlm.nih.gov

Pharmaceutical Interventions in Chronic Fatigue Syndrome: A Literature-based Commentary - PubMed

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disorder characterized by prolonged periods of fatigue, chronic pain, depression, and a complex constellation of other symptoms. Currently, ME/CFS has no known cause, nor are the mechanisms of illness well understood...
pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov

I'll post the literature on the usage of aciclovir when I come across it again.
 
PageofME said:
Yes, viral replication stops in one hour and it's not only me personally who feels the effect but it's what that infectious disease clinician claims can be observed in the patients as well
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I think the point Jonathan is making is: if a herpesvirus reactivation was making people feel awful, the “feeling awful” would be mediated by the immune response to the virus, as in pretty much all other infections. In which case, the immune system would still be responding to virus and still causing symptoms for much longer than an hour, regardless of whether viral replication has decreased in that hour.

That’s why, for example, it may take several days for symptoms to improve with paxlovid, but something that targets the immune response directly (like an NSAID) would make people feel better within an hour. And why the awful bitter taste from paxlovid may appear much quicker than any benefits—because that’s an off-target affect on your cells rather than viruses.

PageofME said:
Yes, viral replication stops in one hour and it's not only me personally who feels the effect but it's what that infectious disease clinician claims can be observed in the patients as well.
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The clinician would not be able to differentiate between immediate off target effects and effects of reduced viral replication either.

Acyclovir is known for affecting other cellular pathways besides its effect on viral replication.
 
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jnmaciuch said:
That’s why, for example, it may take several days for symptoms to improve with paxlovid, but something that targets the immune response directly (like an NSAID) would make people feel better within an hour.
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I can only tell you what I've read in that paper. Infectiologists believe that the activity of aciclovir can be observed very fast because that's how they find out how much to give the patients. And they believe that this overlaps with aciclovir's pharmacology.

What you are saying is very interesting, very sophisticated but I can't see how it is relevant to the discussion on how fast ME patients who respond to aciclovir have an alleviation of symptoms.
 
ryanc97 said:
Antivirals are cheap and easy to get. If it worked we would know by now.
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Well, at least I know that they work.

Sorry, that aciclovir doesn't work for you.

However, your ideas are wrong. There is ample anecdotal evidence that aciclovir has activity in a group of ME/CFS patients and in the drug research overview on aciclovir research in ME/CFS from 2019 that I posted above researchers concluded that there should be more studies into aciclovir and other herpes anti-virals, preferrably by seperating subgroups. Because it could be shown in several small studies that a part of the participants had an improvement.
 
PageofME said:
What you are saying is very interesting, very sophisticated but I can't see how it is relevant to the discussion on how fast ME patients who respond to aciclovir have an alleviation of symptoms.
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The timelines are a pretty good indication that any positive effect of aciclovir is from an off-target effect, not its action on herpesvirus replication
 
PageofME said:
There is ample anecdotal evidence that aciclovir has activity in a group of ME/CFS patients
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And since anecdotal evidence in ME/CFS is worthless, where does that get us?
If there was even a small subgroup that had useful responses, trials should pick up a signal.
I am also not very impressed by the 'clinical seat of the pants' of 'infectiologists' to be honest. That sounds way outside the sphere of reliable evidence.

I don't think you are going to convince anyone, and saying that people's 'ideas are wrong' alongside anecdotes is likely to ensure it.
 
PageofME said:
Well, at least I know that they work.

Sorry, that aciclovir doesn't work for you.

However, your ideas are wrong. There is ample anecdotal evidence that aciclovir has activity in a group of ME/CFS patients and in the drug research overview on aciclovir research in ME/CFS from 2019 that I posted above researchers concluded that there should be more studies into aciclovir and other herpes anti-virals, preferrably by seperating subgroups. Because it could be shown in several small studies that a part of the participants had an improvement.
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Is that so?

So why hasn't it worked for everyone then?
 
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