ME/CFS Outbreaks--discussion

[alex3619]

the following viruses are NOT linked to ME/CFS

Correct, but there is growing evidence that specific complications of many viruses, such as encephalitis, might be a critical trigger in their own right. In this case the specific pathogen is less important than what it did.

 

[MEssias]

There are many problems with this statement. For example, it does not differentiate between causes and triggers. It does not take into account different pathogens might have been at different outbreaks, or different strains of the same pathogen. It does not take into account co-causes or co-triggers at different outbreak locations., symptoms vary a lot between outbreaks It does not take into account the zero reporting of outbreaks in recent decades. There are potential explanations of all these but that makes it a much more complicated picture.

Researchers cannot go back and just study the outbreak patients reliably. We might with a new outbreak. There have been none in the last two decades, though I suspect this is because the trigger pathogen was found and the outbreak was named after the pathogen. There are many trigger pathogens, if you presume its all one illness. Alternatively we have post-SARS, post-Giardia, post-Ebola and so on.

I do know that a small number of the Royal Free outbreak patients are still alive and some of them (if not all) are still more or less sick.

Studying outbreak patients has many of the same issues as studying general population with ME ... unless you select from one single outbreak. The time to do that best was probably in the 80s, and the CDC failed to do so.

have you read underhills theory? And the retrovirus hypothesis has long since answered these questions. you only have to look at HIV and you will notice that everything is known. And of course all the other infections were just random triggers. the retrovirus is the cause. it is really sad how much confusion has been spread and today everyone believes it would be just a metabolism problem. hopefully we will see who was on the right track in the future.

 

[Hip]

But according to Ron davis, there are no infections in the tissues if they are not also found in the blood

That's not true in the case of enterovirus. Enterovirus infections can be found in the tissues of ME/CFS patients (when muscle or stomach tissues are biopsied), even though blood PCR can often be negative.

 

[Hip]

Correct, but there is growing evidence that specific complications of many viruses, such as encephalitis, might be a critical trigger in their own right. In this case the specific pathogen is less important than what it did.

Would you any specific studies in mind? I have not seen much research on the encephalitis — ME/CFS link, though my own ME/CFS started with an apparent viral encephalitis episode.

 

[alex3619]

There was a Lipkin study that called encephatis survivors with ME "atypical ME" as our cytokine profile is different. It was the same study that showed the three year switch in cytokines.

Encephalitis survivors, according to surveys so there are limits to accuracy, have a partial disability rate of about 70%, full disability of about 40%, and most of the same symptoms. Encephalitis involves the kind of brain insult you would expect to trigger ME, but so do other brain inflammatory problems like meningitis.

The thing about these is they involve possible damage to the blood brain barrier that might allow regular immune cells into the brain. They also cause diffuse damage that is hard to detect, though possibly they are finding it now with modern MRI, I have not followed up to be sure of this research.

I suspect that encephalitis survivors have very high rates of ME, or a similar disease.

 

[alex3619]

the retrovirus is the cause.

There is no credible evidence of a retrovirus, though also there is no published checking of reverse transcriptase in recent decades. This test does need to be done. Hypotheses are not facts.

 

[MEssias]

Would you any specific studies in mind? I have not seen much research on the encephalitis — ME/CFS link, though my own ME/CFS started with an apparent viral encephalitis episode.

I know it!! I meant that sarcastically.

 

[MEssias]

There is no credible evidence of a retrovirus, though also there is no published checking of reverse transcriptase in recent decades. This test does need to be done. Hypotheses are not facts.

1986 Michael Holmes
Holmes MJ „A Retrovirus Aetiology for CFS?“ Chapter 33 (S. 319-324) in Hyde BM (H. & A.), Levine PH (H.), Goldstein JA (H. & A.) „The Clinical and Scientific Basis for M.E./ CFS“, Nightingale Research Foundation (C. A.) 1992

1989 Sidney Grossberg http://www.ncf-net.org/patents/pdf/GrossPat.pdf

1990 Elaine deFreitas
http://web.archive.org/web/20171023155024/http://www.me-ireland.com/retrovirus.pdf

2009 Judy Mikovits https://www.ncbi.nlm.nih.gov/pubmed/19815723?dopt=Abstract
http://iv.iiarjournals.org/content/25/3/307.long#xref-ref-18-1

2010 Shyh-Ching Lo / Harvey Alter
http://www.pnas.org/content/107/36/15874

2011 Maureen Hanson / David Bell
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3112714/

2013 Sidney Grossberg https://www.futuremedicine.com/doi/abs/10.2217/fvl.13.25?journalCode=fvl&

2013 Ian Lipkin HIMSELF
„We also found retroviruses in 85% of the sample pools.“ Ian Lipkin, in Fleming, Russel „Transcript: Ian Lipkin – CDC Telephone Broadcast Conference 10 September 2013“


No credible evidence ? Come on...
And all that though the retrovirus research is completely barricaded!

Do I have to mention that there are already some people who came in remission by ART?

 

[JES]

2013 Ian Lipkin HIMSELF
„We also found retroviruses in 85% of the sample pools.“ Ian Lipkin, in Fleming, Russel „Transcript: Ian Lipkin – CDC Telephone Broadcast Conference 10 September 2013“

Correlation does not imply causation, which is the problem with all of these findings. In the paper you linked by Shyh-Ching Lo / Harvey Alter, they even state:

Further studies are needed to determine whether the same strong association with MLV-related viruses is found in other groups of patients with CFS, whether these viruses play a causative role in the development of CFS, and whether they represent a threat to the blood supply.

Until we have better evidence, it's just a bunch of random findings with not much significance. Same level or stronger evidence is available for competing theories, such as altered microbiome, enterovirus, pathogenic bacteria, metabolic defects, autoimmunity, etc. etc. The list is endless. You need a theory and framework that links together all observed findings before you can state that something "causes CFS".

 

[MEssias]

Until we have better evidence, it's just a bunch of random findings with not much significance. Same level or stronger evidence is available for competing theories, such as altered microbiome, enterovirus, pathogenic bacteria, metabolic defects, autoimmunity, etc. etc. The list is endless. You need a theory and framework that links together all observed findings before you can state that something "causes CFS".

Epidemics are dependent on a pathogen. That's why most theories fall out for me. if you see it differently, ok. But please do not be too disappointed if in 10 years just as little has happened as in the last 10 years.

 

[Hip]

No credible evidence ? Come on...

There are existing threads on this forum in which those who believe in the retrovirus theory try to persuade other forum members that there is credibility to this theory; but the retrovirus theory usually gets demolished in these threads. You might like to read those threads, so that we do not have to go through the same retrovirus discussions yet again.

It's not entirely implausible that some ME/CFS patients may have a retrovirus in their body which makes it harder to control infections such as enterovirus and herpesvirus. Recently it was demonstrated that at least 33% of the human population have the BLV retrovirus in their body, which is known to be immunosuppressive. This may be the pathogen that Lipkin found.

But at this stage there is almost no good evidence for retrovirus involvement in ME/CFS. The most well researched virus in ME/CFS is enterovirus, with nearly 30 studies finding enterovirus in ME/CFS patients.

 

[alex3619]

No credible evidence ?

Just that. Credible evidence of a retrovirus causing ME is severely lacking. EVERYONE has endogenous retroviruses in their DNA. Many people have non-disease-causing viruses of all sorts. Viruses, like bacteria, are part of our microbiome.

DeFreitus and Mikovits were unable to replicate their own findings.

For a causal association, particularly if you want to imply sole causation, then you need very high rates of the same retrovirus. There are lots more requirements too.

Do I have to mention that there are already some people who came in remission by ART?

This does not prove retroviral causation. Where are the large double blind placebo controlled trials? These days a pilot study can easily be funded using various crowdfunding options. Even if such a trial proved somewhat effective, it would still not prove retroviral causation. For example, one of the current theories as to why herpes targeting antivirals work is because of secondary effects, or lowering viral load in general rather than removing a causative agent. There are claims on the net of so many things causing remission, but none of them have credible evidence.

There are strict rules for proving something in science, and once proved that proof can always be overturned.

If a retrovirus is actively doing damage, and not via some unobvious mechanism without replication, then its a replicating retrovirus. That means reverse transcriptase. Show me the modern study that proves the existence of substantive quantities of reverse transcriptase. That would be an easy to study to crowdsource, and I think worth doing. Without that data however there is no evidence of actively replicating retrovirus. Some of the endogenous retroviruses might, but this is speculative, in general the evidence seems to be they are inert.

Many have looked for retroviruses using many techniques. RNA retroviruses are still possible as a causative agent, but far from demonstrated, but DNA retroviruses are very unlikely at this point.

These studies can often be explained by false positives or contamination or are not causative, such as with endogenous retroviruses. A researcher needs to be able to show that is not the case before they have a credible claim.

If anyone thinks a particular retrovirus is the cause, then find a researcher and crowdsource them for a pilot study. That will give them the data to make a grant application. This applies to any pathogen, not just a specific retrovirus.

 

[alex3619]

It's not entirely implausible that some ME/CFS patients may have a retrovirus in their body which makes it harder to control infections such as enterovirus and herpesvirus.

A few of us have HIV for example.

 

[MEssias]

Many have looked for retroviruses using many techniques. RNA retroviruses are still possible as a causative agent, but far from demonstrated, but DNA retroviruses are very unlikely at this point.
.

What is a DNA retrovirus? I only know RNA retroviruses and talk of nothing else. DNA retroviruses would be completely new to me. or do you mean endogenous retroviruses?

 

[alex3619]

What is a DNA retrovirus? I only know RNA retroviruses and talk of nothing else. DNA retroviruses would be completely new to me. or do you mean endogenous retroviruses?

I have discussed this in a confusing way. My bad. We store retroviruses in our genome as DNA ... all of them. I should have been more careful in my discussion. Retrovirus pathogens are single stranded RNA that write their code into the DNA. This includes inherited endogenous retroviruses. They are however only pathogenic after they are transcribed back into RNA, and even then only if they are complete and not damaged. Many endogenous retroviruses are incomplete, and do not transcribe into viable viruses.

There are also some regular DNA viruses that can integrate into the DNA, including I think HHV6. These do not have reverse transcriptase, or at least I think they do not. There would be no point.

The reason why I still leave the door open is that there has not been enough testing on RNA viruses ... some, not enough. We also have not had recent publication of reverse transcriptase results, though I suspect this has been done and not published because there was nothing to be found. I am not sure of that though.

There is research into endogenous retroviruses in MS for example. Its not a strong link, but was still being looked at a couple of years back, I have not kept up to date.

PS We also need to do more investigation of parasites. If our expressed gene match is closest to African Sleeping sickness then we have to rule out trypanosomes.

 

[Victronix]

They are however only pathogenic after they are transcribed back into RNA, and even then only if they are complete and not damaged.

Is there a line of research proving this? I'm not a microbiologist/biochemist, etc, not challenging it, just wondering.

My other question is about crowdsource funding of lab research - I had not heard of that and was wondering if there is a standard method or examples of this. I was looking around on gofundme but that seems to mostly have small funding projects based around individuals.

 

[alex3619]

Is there a line of research proving this? I'm not a microbiologist/biochemist, etc, not challenging it, just wondering.

Reverse transcriptase writes the virus into the DNA, which can then insert into a chromosome. Its then just DNA, but it can be harmful if it disrupts an existing gene. To become a fully formed virus again it has to have that DNA transcribed. This turns it back into RNA, which allows the virus to spread. Now some endogenous retroviruses, existing as DNA, are damaged. They either cannot be transcribed to RNA, or if this happens they are too damaged to be a threat.

Crowdsourcing could be used for a small pilot study to get the evidence to apply for a grant for a bigger study. We, as a community, put a lot of money into our big research charities. There is no reason we could not do this for small pilot studies. It just takes someone to start it.

Typically such a study would be on only a few individuals, up to maybe a couple of dozen.

 

[alex3619]

What is a DNA retrovirus?

On this point it turns out that there may be some DNA viruses with reverse transciptase! Including Hepatitis B. I have not investigated further, but I do find it interesting that Hep B vaccine is one we react badly to.