Any thoughts on this blog post about retrovirus and ME?

[duncan]

Hip, I clearly state it is a theory. Please take your time and re-read what I wrote.

As to your request that I explain how an ERV or an exogenous cousin can be ascribed to the ebb and flow nature of ME/CFS - or chronic Lyme, for that matter - we have three retroviruses from which to draw insight, each with characteristics peculiar to themselves, as distinct entities. Not enough to ascribe much based solely on it being a retrovirus, particularly in an attempt to derive general patterns from only three predecessors. I fear your request is, er, disingenuous or inappropriate. I apologize if I am wrong.

But it's just as likely to explain the relapsing-remitting quality many ME/CFS sufferers are familiar with as any other mechanism. Ditto for persistent Lyme - would you like to explain how Borrelia Burgdorferi - not considered a relapsing remitting disease - might be behind that characteristic, i.e. ebb/flow, post-treatment?

 

[Hip]

I am not being disingenuous as such, rather just scientifically hard nosed, and asking for some support to back up your statements.

Discussions on retroviruses on this forum always seem to stir up lots of emotion, so under these conditions, it's best I think to stick to science.

 

[duncan]

Science is good. So is history. If you check back in Phoenix Rising records you will find this theory and all its tributaries explained in detail.

 

[Hip]

If you check back in Phoenix Rising records you will find this theory and all its tributaries explained in detail.

It's only courteous that, if you make statements on scientific matters and someone asks you for supporting references (which generally means providing a link to a published study or article by researcher that supports the statements you are making), that you provide such references.

 

[duncan]

It's only courteous that if you accuse someone as stating as fact something that he actually clearly stated as theory, you apologize for your error.

Now go do your own homework, please.

 

[Ecoclimber]

I

The endogenous retrovirus angle is still viable. Infectious retrovirus does not currently have traction. If someone can prove high levels of reverse transcriptase then the hypothesis might get traction again. Alternatively they might find the retrovirus reliably this time, unlike XMRV. Otherwise almost nobody in the scientific or medical worlds will listen.

Many of us are intimately familiar with the retrovirus hypothesis, and its failures. It divided this forum, and was at least as controversial as the current IOM issue. A new forum was created because of this and many people left.

From an epidemiological standpoint, if you look at all the cluster outbreaks -Roayl Free Hospital, Lake Tahoe 87, Los Angeles Hospital 36, the incubation period was between 4-6 days which is a very significant viral outbreak if compared to or associated with retroviral incubation periods.

 

[Hip]

It's only courteous that if you accuse someone as stating as fact something that he actually clearly stated as theory, you apologize for your error.

Now go do your own homework, please.

I explained earlier that if you say "is" rather than "may be", then that is stating something as a fact. If you go back and check, you will find you wrote "is".

 

[duncan]

Sigh.

In the paragraph where I introduce the concept of the retrovirus, both endogenous and exogenous, I clearly state "theoretically."

That qualifier precedes and sets up the sentence I think you are referencing. But as it PRECEDES that sentence, its relevance should be clear, and the sentence should be interpreted accordingly by the reader.

I am sorry you were unable to make that connection. Perhaps I could have made it clearer.

Now, please, move along.

 

[duncan]

Just out of curiosity, Hip, evidently you have close to 4,000 posts. So you've got some mileage under your belt.

Did all that come after 2010/2011?

 

[alex3619]

the incubation period was between 4-6 days which is a very significant viral outbreak if compared to or associated with retroviral incubation periods.

Yes, which rules out retroviruses unless you follow a two hit hypothesis. Which is why I was using a two hit hypothesis as a possibility when we were discussing XMRV. What the outbreak is due to is the trigger, not the cause.

However, this raises a question. If such a retrovirus is widespread enough for another virus to trigger an outbreak, then it should be very common in the population. This appears unlikely.

PS In this version of the hypothesis the incubation period is the trigger, not the causative pathogen.

 

[Hip]

Just out of curiosity, Hip, evidently you have close to 4,000 posts. So you've got some mileage under your belt.

Did all that come after 2010/2011?

I have had ME/CFS for approaching 10 years now, so I followed all the XMRV stuff from beginning to end.

Sorry if I have come over too hard nosed or pedantic. It's just that I remember how XMRV turned into a kind of passionate faith movement in the ME/CFS community; an emotional subject that so many patients pinned their hopes on. When you pin so much hope on something like this, emotions can override reason.

Emotions ran so high that when virologist Myra McClure published her study that did not replicate the results of Judy Mikovit's original XMRV paper, McClure received a ton of email abuse from extremist ME/CFS patients, which was a terrible thing to happen. McClure has no connection to Wessely School "all in the mind" view of ME/CFS that many ME/CFS patients abhor.

 

[duncan]

Pedantic? No. Hard-nosed? Perhaps...

Yeah, it was a surreal time.

When I first joined some of the Lyme forums (after the XMRV fiasco), and I threw out the possibility of a retroviral component to chronic Lyme, I was skewered - and not just by the IDSA die-hards - by advocates I have come to respect, micro-biologists and physicians and researchers steeped in TBD science.

So it was even there a hard position to promote. But I continue to believe the theory has merit. I'm not saying it is right, only that it should not be shelved as a possible explanation - albeit admittedly one in want of proof.

Lots of backstory to that whole thing, too, though. As you know.

 

[Hip]

But I continue to believe the theory has merit. I'm not saying it is right, only that it should not be shelved as a possible explanation - albeit admittedly one in want of proof.

I agree, a retrovirus is not beyond the realms of possibility to explain these chronic infections like EBV, enterovirus or Borrelia found in ME/CFS / Lyme.

Though I think the reason we are specifically looking for an explanation (retroviral or otherwise) as to why such chronic infections exist in the body may be more to do with a bias in the thinking of medical researchers in general. It is often conveniently assumed by doctors and researchers that in a normal person, infections are always cleared up and fully controlled by the immune system, except in the case of fatal infections like Ebola, or unusual chronic ones like HIV.

However, it may turn out that having chronic infections in your body that lead to disease is the norm. If you briefly scan this article: List of Chronic Human Diseases Linked To Infectious Pathogens, you will notice that many common diseases are associated with chronic infections.

For example, epilepsy is linked to HHV-6 infection in the brain, Alzheimer's to HSV infection in the brain, multiple sclerosis to EBV, type 1 diabetes to enterovirus, heart disease to Chlamydia pneumoniae, lower back pain to a spinal disc infection with Propionibacterium acnes.

It is not yet known whether these pathogens are actually the cause of the disease they are linked to; that needs further research. But if it does turn out that most of these diseases are caused by their associated pathogens, that would indicate that disease-precipitating chronic infections in the body are the norm for everybody.

And if that turns out to be true, then there would be nothing special about Lyme and ME/CFS; they would be just among hundreds of common diseases that may be caused by chronic infections in the body. And with that perspective, there would be no need to explain why a chronic infection exists.

 

[duncan]

Yep.

Great link, by the way.

Your train of thought could ultimately lead to the quagmire that is Diagnostics. The idea of chronicity, and the pathogens behind such cases, could mostly be validated with adequate diagnostics.

Unfortunately, there are often times contrived logjams in the generation of sensitive and reliable diagnostics - logjams, frequently caused out of greed and legacy concerns, that compound the problems confronting clinicians and patients, and researchers, too.

Diagnostics remains a huge and ongoing and acrimonious area in Lyme. It is an issue with RV's too, if I am not mistaken.

But it's late and that's a topic for another thread.