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Rna based antivirals

godlovesatrier

Senior Member
Messages
2,513
Location
United Kingdom
Hi all,

Has anyone here taken rna antivirals? What was your experience?

Rna antivirals are things like mulno or tenofovir. Not to be confused with DNA antivirals like valcyte, famvir or valtrex.

When I last took mulno post covid my fatigue disappeared on day three and this was two weeks after having had COVID.

Some people discussed the idea that rna antivirals might ameliorate ME symptoms in some people. Arguably those of us who are infected with rna based viruses like EVs but covid is now just another persistent rna virus. Also some studies have now shown efficacy in treating covid with the likes of say remdesivir still being used. Often with amazing results.

So wanted to hear from people who've taken them short or long term.

Mulno supposedly is a broad spectrum antiviral. Not all antivirals are.

Thanks!
 

godlovesatrier

Senior Member
Messages
2,513
Location
United Kingdom
Sure no worries. The info seems a tad fragmented on me-pedia but here is one that's very important to understand and grasp

https://me-pedia.org/wiki/Non-cytolytic_enterovirus

Explains why pwme and probably long covid patients (speculation) remain sick long term.

https://me-pedia.org/wiki/Antiviral

Strictly speaking the drugs don't specifically break down into rna and dna. But they may be known specifically for that usage. What do I mean? Well ebv for example responds to tenofovir but so does hiv. One is a DNA virus the other is an rna based virus. But generally the meds are created for a single purpose.

Haven't got a thorough list for either sadly. But you can check hips guide: https://mecfsroadmap.altervista.org/ which is excellent as an overview of various ME CFS causes and treatment options.
 

godlovesatrier

Senior Member
Messages
2,513
Location
United Kingdom
Polybio research group is currently focussing much effort on rna viruses not just covid but EVs as well for the first time for quite a long time. In the UK some ground breaking studies were done years ago and then completely ignored. They just got about 6 million dollars I think it is in funding yesterday for a new series of studies. This should progress things dramatically. As you know we are starved of good funding.
 

godlovesatrier

Senior Member
Messages
2,513
Location
United Kingdom
Thanks for correcting me. You are correct.

https://x.com/polybioRF/status/1719695012835770565?s=20

Screenshot_2023-11-01-19-49-16-14_40deb401b9ffe8e1df2f1cc5ba480b12.jpg
 

Hoosierfans

Senior Member
Messages
395
@godlovesatrier sorry can you clarify what you mean by “EVs”? Echovirus? Enterovirus? Something else?

Thanks for the links…I have a great PCP who is “learning as we go” and is very interested in treating my ME / CFS and learning what there is to know from other diseases like Long COVID, MS and Fibro (to the extent they may be smouldering viruses) so I’m trying to educate myself so I can help educate her! 😊
 

godlovesatrier

Senior Member
Messages
2,513
Location
United Kingdom
EV's meaning entereoviruses.

Polybio will no doubt uncover more and more evidence to support persistence in tissues, which will eventually extend to lots of other viruses and we will know for certain. Although it seems like a complete given to many at this point.

If anyone has taken an antiviral for a supposed rna virus like echo or cocksackie etc would be great to hear your expeirences.
 

ruben

Senior Member
Messages
277
Sorry to appear lazy, just so dam tired. I've never tried any antivirals. Can anyone recommend a good starting point?. My issues started with glandular fever years ago. I'm in UK. Are these something you can order online or would one go to their GP about it. My symptoms are the tiredness of course, along with IBS and migraines. How long would you need to try them for. Thanks in advance
 

godlovesatrier

Senior Member
Messages
2,513
Location
United Kingdom
You need to get an appointment with dr Bansal. Ring spire bushey hospital and they should be able to book you in. If not send me a message. He will be able to get you antivirals especially as you're issues started after ebv. Crushing tiredness tbh if more indicative of ebv than say muscle pain with fatigue. The two might sound the same but I think there not. So it sounds like you'd do well on valtrex.

People normally don't see improvements for 3 months. So I'd try them for six with Dr Bansals help.
 

ruben

Senior Member
Messages
277
Many thanks. Yes Dr, Bansal was on my radar. Is it worth would you say simply requesting valtrex from a local GP. I'm in Suffolk though so not too far from London. I also think I need a GP referral. Once again thanks for your input.
 

godlovesatrier

Senior Member
Messages
2,513
Location
United Kingdom
The defacto response I always have had is "You'll never get valtrex on the NHS." I recently got a prescription from my GP however I then got a mysterious text message from the practice later that day saying I must not ask for it again. I have no idea what happened and nobody knew anything about it when I went in to ask again. Anyway I highly doubt you'll get it without a letter.
 

ruben

Senior Member
Messages
277
The defacto response I always have had is "You'll never get valtrex on the NHS." I recently got a prescription from my GP however I then got a mysterious text message from the practice later that day saying I must not ask for it again. I have no idea what happened and nobody knew anything about it when I went in to ask again. Anyway I highly doubt you'll get it without a letter.
I did actually call the Dr. Bansal clinic recently. They did say to I needed a GP referral which I still have to do. Hurdles, hurdles and more hurdles.!!
 

Hoosierfans

Senior Member
Messages
395
@godlovesatrier maybe @Learner1 can weigh in here. I know she’s been on Tenofovir for awhile, and is in a private group of patients who’s doc treats with Tenofovir (can’t recall if it’s TAF or TDF). She pointed me towards this study:

https://pubmed.ncbi.nlm.nih.gov/32409608/

It sounds like of the two, TAF is the stronger. But I don’t know if it has more side effects etc. Maybe Learner can share her experience and what she’s seen from others. 😊
 

godlovesatrier

Senior Member
Messages
2,513
Location
United Kingdom
It's probably tenofovir. I don't think there's certainty about efficacy for TAF. Unless theres been a new study.

There were a few doctors in Europe who treated patients with rna based antivirals combinations. But it took years for them to see we results.

In the UK and America Dr Weir and Dr chia respectively used tenofovir (descovy I think) to treat ME patients and 50% improved. Some to remission. But they can't figure out why and Dr Weir has stopped prescribing. I think Dr chia is still prescribing it tho but he also does other drugs. He spoke about several in an Amy Proal interview he did. Which is on YouTube. Some of these stories are in hips recovery thread.

And yes tenofovir is very good at stopping ebv replication. But I found the generic drug had some unpleasant side effects. Not intolerable but the brainfog was severe. Tbh this means I was a responder but I also experienced a gun abscess and black stools on it. So both times I've had to discontinue taking it and Dr Weir won't prescribe it now.
 
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Hoosierfans

Senior Member
Messages
395
Just so everyone reading this is clear on terminology:

TAF = Tenofovir Alafenamide (Brand name: Vemlidy

Sometimes people say “TAF” but mean TAF + Emtricitabine = Tenofovir Alafenamide + Emtricitabine (Brand Name Descovy)

TDF = Tenofovir Disoproxil Fumarate (Brand name Viread)

Sometimes people say “TDF” but mean TDF + Emtricitabine = Tenofovir Emtricitabine (Brand name Truvada)

So when one refers to “Tenofovir” it could be any of these 4 drugs, which are different compounds. 😊