Are you taking antivirals?

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A question for patients currently (or previously) taking prescription anti-virals:

Which physician(s) did you visit that you found was most helpful to you in this area?

I am particularly interested in hearing about some of the less well-known doctors and clinics, who may be useful for people on waiting lists at the big-name institutions.
 

nerd

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I couldn't get anything prescribed for ME. But I got Valaciclovir prescribed by an online dermatologist. I claimed that I have frequent HSV on my lips and that I want to prevent it. You can get it prescribed for HSV prophylaxis if you have frequent HSV outbreaks, apparently, but not for ME. Can you believe it...
 

BrightCandle

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I can't even get a doctor to acknowledge I am sick let alone give me something like anti viral drugs. The one doctor who might have prescribed them I chased repeatedly and he just never called back. There are many drugs I would have liked to try over the years that may have helped but which due to widespread systemic prejudice in the NHS I have literally zero chance of doing so.
 

Cipher

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I can't even get a doctor to acknowledge I am sick let alone give me something like anti viral drugs. The one doctor who might have prescribed them I chased repeatedly and he just never called back. There are many drugs I would have liked to try over the years that may have helped but which due to widespread systemic prejudice in the NHS I have literally zero chance of doing so.
People in the UK (and some other countries) can legally import medicine from abroad via prescription-free online pharmacies, check out this thread.
 
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I am not taking antivirals and I wouldn't without some pretty strong evidence that I have an ongoing infection.

There's a statement on antivirals here by Dr. Davis and Dr. Naviaux:
https://www.omf.ngo/viruses-and-cfs-statement-by-ron-davis-and-bob-naviaux/
This is an old statement and they said after it that many docs have great success with antivirals so there might be a link. It’s also quite odd this statement because back then they only did PCR tests on peripheral blood afaik, which is - I am sorry - often useless. There are viruses which can easily bypass the BBB and disappear from blood and saliva (please read for example the explanations by the enterovirus foundation). Especially HSV, HHV6a and Enteroviruses are known to do so. I think for the second Prusty has shown enough evidence. PCR - Right! But of what material? Dr. Chia has shown that his patients can be negative on blood but positive on a stomach biopsy. You can further read the study of Hanson et. al. where brain biopsies are mentioned
 

BrightCandle

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The penis dysfunction paper I posted about a month ago where Covid19 was causing erectile dysfunction, showed no signs of covid19, clean on PCR and blood tests and yet when he died they found Covid in the dysfunctional cells. There is no doubt viruses can and do hide in cells in the human body causing dysfunctions. We don't know for sure its the cause of ME but given 80% of patients report an infection beforehand it is a darn good guess that its the cause and we just need a smoking gun.

Over 100 years of ME/CFS now and they never bothered to do DNA testing post mortum, they weren't even trying to find out if it was the cause in the most obviously direct way.
 
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The penis dysfunction paper I posted about a month ago where Covid19 was causing erectile dysfunction, showed no signs of covid19, clean on PCR and blood tests and yet when he died they found Covid in the dysfunctional cells. There is no doubt viruses can and do hide in cells in the human body causing dysfunctions. We don't know for sure its the cause of ME but given 80% of patients report an infection beforehand it is a darn good guess that its the cause and we just need a smoking gun.

Over 100 years of ME/CFS now and they never bothered to do DNA testing post mortum, they weren't even trying to find out if it was the cause in the most obviously direct way.
That’s not entirely true, see the new Hanson study on enteroviruses and ME mentioning three biopsies
 

wabi-sabi

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Ok, here's the abstract, which is all my brain is up for right now.

"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, multi-system disease whose etiological basis has not been established. Enteroviruses (EVs) as a cause of ME/CFS have sometimes been proposed, as they are known agents of acute respiratory and gastrointestinal infections that may persist in secondary infection sites, including the central nervous system, muscle, and heart. To date, the body of research that has investigated enterovirus infections in relation to ME/CFS supports an increased prevalence of chronic or persistent enteroviral infections in ME/CFS patient cohorts than in healthy individuals. Nevertheless, inconsistent results have fueled a decline in related studies over the past two decades. This review covers the aspects of ME/CFS pathophysiology that are consistent with a chronic enterovirus infection and critically reviews methodologies and approaches used in past EV-related ME/CFS studies. We describe the prior sample types that were interrogated, the methods used and the limitations to the approaches that were chosen. We conclude that there is considerable evidence that prior outbreaks of ME/CFS were caused by one or more enterovirus groups. Furthermore, we find that the methods used in prior studies were inadequate to rule out the presence of chronic enteroviral infections in individuals with ME/CFS. Given the possibility that such infections could be contributing to morbidity and preventing recovery, further studies of appropriate biological samples with the latest molecular methods are urgently needed."

I think it's important to note that Dr. Hanson says "Infections may persist", "inconsistent results", "given the possibility" and "could be contributing", and "further studies of appropriate biological samples are urgent necessary". The sum is that we don't know if ME/CFS is cause by a lingering infection, because the data isn't there. The studies have not been done yet. Jumping to the conclusion that you want-an ongoing infection easily cured if you can just fine the right antiviral- isn't warranted here. Yes, outbreaks in the past have ben caused by an infection. That's not the same as illness being sustained by an infection (compare how autoimmune diseases are frequently caused by an infection but cannot be treated with viral medications). It also isn't the same as any specific current patient's illness being caused by an infection.

This article is a perfect example of how we don't know if viruses are causing ME/CFS. That's why Dr. Hanson wrote it- to point out our collective ignorance as much as our collective knowledge- and to goad someone into getting the knowledge we so badly need.

For me, until we have that knowledge, antivirals are powerful, and therefore risky, medications that could do more harm them good or at best completely misfire, as Dr. Davis and Dr. Naviaux describe. I recognize that other people have different levels of risk tolerance than I do, but for me I need a sureity of causation, not a possibility if I were to take this medication.
 
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Ok, here's the abstract, which is all my brain is up for right now.

"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, multi-system disease whose etiological basis has not been established. Enteroviruses (EVs) as a cause of ME/CFS have sometimes been proposed, as they are known agents of acute respiratory and gastrointestinal infections that may persist in secondary infection sites, including the central nervous system, muscle, and heart. To date, the body of research that has investigated enterovirus infections in relation to ME/CFS supports an increased prevalence of chronic or persistent enteroviral infections in ME/CFS patient cohorts than in healthy individuals. Nevertheless, inconsistent results have fueled a decline in related studies over the past two decades. This review covers the aspects of ME/CFS pathophysiology that are consistent with a chronic enterovirus infection and critically reviews methodologies and approaches used in past EV-related ME/CFS studies. We describe the prior sample types that were interrogated, the methods used and the limitations to the approaches that were chosen. We conclude that there is considerable evidence that prior outbreaks of ME/CFS were caused by one or more enterovirus groups. Furthermore, we find that the methods used in prior studies were inadequate to rule out the presence of chronic enteroviral infections in individuals with ME/CFS. Given the possibility that such infections could be contributing to morbidity and preventing recovery, further studies of appropriate biological samples with the latest molecular methods are urgently needed."

I think it's important to note that Dr. Hanson says "Infections may persist", "inconsistent results", "given the possibility" and "could be contributing", and "further studies of appropriate biological samples are urgent necessary". The sum is that we don't know if ME/CFS is cause by a lingering infection, because the data isn't there. The studies have not been done yet. Jumping to the conclusion that you want-an ongoing infection easily cured if you can just fine the right antiviral- isn't warranted here. Yes, outbreaks in the past have ben caused by an infection. That's not the same as illness being sustained by an infection (compare how autoimmune diseases are frequently caused by an infection but cannot be treated with viral medications). It also isn't the same as any specific current patient's illness being caused by an infection.

This article is a perfect example of how we don't know if viruses are causing ME/CFS. That's why Dr. Hanson wrote it- to point out our collective ignorance as much as our collective knowledge- and to goad someone into getting the knowledge we so badly need.

For me, until we have that knowledge, antivirals are powerful, and therefore risky, medications that could do more harm them good or at best completely misfire, as Dr. Davis and Dr. Naviaux describe. I recognize that other people have different levels of risk tolerance than I do, but for me I need a sureity of causation, not a possibility if I were to take this medication.
If you’d reread my post you’d notice that I’ve never claimed anything different. Btw: I’m tested positive for multiple viruses (PCR)
 

wabi-sabi

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If you’d reread my post you’d notice that I’ve never claimed anything different.
I'm not addressing your personal situation, suggesting that you claimed something, trying to insult you/hurt your feelings or anything of the sort.

I am trying to evaluate the evidence for whether it's safe for a ME/CFS patients in general to take antivirals. I don't think the evidence bears that out. Many people with ME/CFS self-medicate with all sorts of things and I am concerned this will be harmful for people and am trying to discuss and evaluate the evidence base on which to do so. And then assuming people want to hear my opinion...

I am NOT commenting on your personal situation or whether you should or should not take antivirals since I cannot evaluate that. I am sorry if I was in any way unclear about this.
 
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There is no evidence to take anything safely for ME patients... (I mean drugs, not supps). But of course, antivirals are no sugar pills. Depends on how much you suffer and how likely you're suffering is linked to your infection.

BTW: I did not think that you would comment on my situation. Perhaps I chose the wrong words (German with bad English). With “never claimed sth different” I meant I never said it would be safe or that there is enough evidence that ME/CFS is a viral disease.

✌️🏼✌️🏼
 

Pyrrhus

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This article is a perfect example of how we don't know if viruses are causing ME/CFS. That's why Dr. Hanson wrote it- to point out our collective ignorance as much as our collective knowledge- and to goad someone into getting the knowledge we so badly need
There is at least some potential that "parts of " viruses- viral ghosts- maybe at play. I think POLYBIO group have indicated an interest in viral ghosts.
 

Pyrrhus

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There is at least some potential that "parts of " viruses- viral ghosts- maybe at play. I think POLYBIO group have indicated an interest in viral ghosts.
Here is what PolyBio has to say:
Here are a few selected quotes from this excellent paper:
A growing number of studies show that some patients infected with SARS-CoV-2 do not successfully clear the virus over long periods of time (Liotti et al., 2020; Sun et al., 2020; Vibholm et al., 2021). In such studies, confirmation of SARS-CoV-2 in patient samples is generally assessed via identification of viral RNA and/or proteins. While identification of SARS-CoV-2 RNA could technically represent “inert” RNA, the possibility is unlikely because inert RNA in the human body is rapidly degraded (Houseley and Tollervey, 2009; Fabre et al., 2014). Nearly every human cell type, and human tears, saliva, mucus, perspiration, and extracellular spaces express RNAase enzymes that rapidly degrade inert RNA (Sorrentino, 2010; Gupta et al., 2013).
Basically, PolyBio is saying that viral ghosts do not exist. If you see an apparition of a virus, it is just a virus.
 
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I had a long conversation about antivirals with a doctor who has CFS and also treats CFS patients. He was not enthusiastic about antivirals. He said he hadn't seen good results with them with the exception of a small number of patients who likely had comorbid viral infections.

He was well-versed in the scientific literature on the topic, but he didn't appear to think that antivirals held much promise. He discouraged me from trying them and recommends against them.

However, he did say that if I insisted on a trial of antivirals that it was important to get the dosing right. He didn't think the commonly prescribed doses for HSV and other conditions were sufficient for treating CFS-type infections, if they existed at all. He had specific criteria for minimum dosing and duration that he used in his patients.