Why XMRV causes CFS in some, and not in others - my hypothesis

[redo]

As we know studies showing a strong correlation between XMRV and CFS have been published.
And in that study, 3.7% of the healthy controls were also positive.

Here's my hypothesis of how all the dots are connected:

XMRV is a virus, which is in the same narrow class of viruses as HIV. And as we know, what HIV does to the immune system is to "break the door open" for many other infections. Otherwise normal infections can and do take lives of some of the HIV patients.

But that doesn't happen with CFS patients. They don't die from normal infections, although normal infections can be harder to tackle for them...

What I think happens when someone gets a XMRV infection is that they don't get a broad immune deficiency - like with HIV. But what they get is a more narrow, and specific immune deficiency.

So when asked which test to go for, Dr. Peterson replies that "the best biomarker for CFS is the Low NKCell function test". Which is a small part of the immune system.

I think that the 3.7% of the healthy controls in the XMRV and CFS study, have the same specific immune deficiency that the others had. But since the only had that, they didn't become ill.

Immune deficiency + specific infection = CFS
I think that what happens when someone becomes sick is that they get a specific infection which normal people would handle well.

But with the specific immune deficiency caused by XMRV, this specific infection can really become serious. And when they get that infection, they get symptomatic - meaning the broad symptom package that ME/CFS is.

 

[Frank]

I'm sure if this is correct, but your hypothesis can be right if XMRV is not as active as HIV.

 

[DysautonomiaXMRV]

XMRV is a virus, which is in the same narrow class of viruses as HIV. And as we know, what HIV does to the immune system is to "break the door open" for many other infections. Otherwise normal infections can and do take lives of some of the HIV patients.

But that doesn't happen with CFS patients. They don't die from normal infections, although normal infections can be harder to tackle for them

I think you're on the right track here. Thanks to the psychiatric profession producing a mixed bag of CFS, ME and ME/CFS or whatever, there are some thoughts maybe to be added - because, frustratingly (for both patient groups) ME is refered to as CFS (rightly or wrongly).

So if one were to included in ME in CFS description, maybe I would word it something like:

'Patients don't die from common infections', (rather than) 'normal infections'.

Having said that, we don't know know the rates of death in 'CFS' as they are never recorded being linked to CFS, and that's a fact (tragically). CFS is not seen as a disease that can end life. So we simply don't know, who is dying from what. If we had a diagnostic test, all that would end.

ME patients do die from rare types of infections: such as Myocarditis (Casey Fero RIP) and inflammatory states such as dorsal root ganglionitis (Sophia Mirza RIP). These are rarer conditions than the usual killers in AIDS, such as pneumonia. Yet Alison Hunter (RIP) died from immune collapse and infections, more akin to an AIDS patient. So everything is muddled and confusing, which is expected in a heterogenous group of patients (multiple groups) using the same, or interchangeable illness/disease labels. Multiple labels were created for this very reason - to confuse.

So it's very hard to know what is happening, even when studying XMRV. For sure if one uses the label and criteria 'CFS' then it appears probable that Fukuda/CCC CFS patients wobble on through life until coming down with heart failure, cancer and other horrible things. (Jason et al, 2006). Yet, critically none of us know if these CFS patients had XMRV, or ME or what.

This big question mark plays very nicely into the hands of the government and military - who can accuse patients (who may die prematurely from ? or XMRV) of having MUPS (Medically Unexplained Symptoms), PUPS (Persistant Unexplained Physical Symptoms) and Somatization disorder and refuse them treatment to save their lives, or discharge them from the armed forces in disgrace.

Hence the label 'CFS' is so useful to people who need to cover up XMRV, and other chronic disease states and for those who 'need' CFS to remain a 'mystery' multi causative problem (rather than a disease).

NB: By having no single cause, 'CFS' can never be traced back to the root of the problem - this is beneficial to people with a highly questionable agenda posing as anyone from government representatives, to pro-psychiatric patient support groups, to even patients themselves.

NB: By the public realising patients with XMRV have been misdiagnosed with 'CFS' the root of the problem is materialised before our own eyes - a retrovirus - a single cause. This is very scary for those in power. Which is explains the utter disinterest about XMRV, and even failure to protect the blood supply. 'CFS' effectively hid, AIDS Version 2.

Inside the name 'CFS' lies a sub-group of desperately ill, (some are dying) patients and tracing this to XMRV (and realising or discounting this) is very important. Hence no federal funding, or people with questionable ethics NOT using proven XMRV detection methods that work to produce false 'failed' XMRV studies. As it stands, no one has failed to replicate the SCIENCE XMRV study which is very telling - because it was robust enough research to be published in the world's best medical journal.

When using XMRV tests that work, it is clearly obvious XMRV will be linked to immune disease and immune supression - however as you question, what are the rates and why do some people appear to get very ill and others not? The simple answer is 'CFS' being a hotch - podge of conditions of multiple causes, some being psychiatric. Yet we'll only know with more research and if research funding for 'CFS' is less in the USA than it is for Hay-Fever........ then we will never know.

 

[free at last]

Good post and one deserving of discussion redo.
I think you could be right, Lets hope science proves it soon. For those it might help

And DysautonomiaXMRV everytime you post i always tend to agree with almost all of what you say. Some may see you as a millitant fanatic, conspirecy theory nut. But then we have the classified ME documents we are all not allowed to see. Is this conspirecy or is it real. erm i thinks its REAL. So good on you for speaking the truth as you see it. You know most ( if not all ) of what you say is right on the money as far as i can see. I suspect those ME documents relate to how to deal with the nutters, and bellitling us constantly. And they know there will be a public outcry if we get to read them. especially as scientific evidence is now mounting showing how wrong and insensitive those documents probably are. There just saving themselves by hiding the truth is what there doing.

 

[garcia]

NB: By having no single cause, 'CFS' can never be traced back to the root of the problem

This is the crux of the ever-expanding definition. No single cause = they must all be mad, also no effective treatment, therefore nothing to shell-out for. It is pure genius.

 

[usedtobeperkytina]

redo, interesting theory. I had not considered the limited immune system dysfunction angle.

But, from hearing Mikovits and seeing how hard it is to find it through current testing, I favor another theory.

I think the nature of the virus is unique in that it goes dormant, that is not replicating a lot and can be turned on, replicating a lot. Mikovits said cortisol, androgens and anything "turning on" the immune system can cause the virus to replicate. She has emphasized that finding it early and lowering these triggers might help keep the person from reaching the tipping point of so much virus in the blood, that (according to her theory) it causes the illness.

In this way, it is both different and similar to HIV. From what I understand about HIV, it infects and just keeps replicating until it damages the immune system to the point there is no response to cancers or other infections. Seems XMRV can be "turned on" from what Mikovits said and she laid out the triggers that do that. If there are triggers to turn on replication, then there must be times when replication is stopped or greatly diminished.

But similar to HIV, the illness comes at a pivotal point where damage done to immune system is too great and the amount of virus is too high. This is when coinfections will suddenly be able to produce symptoms because the immune system is too weak to fight them effectively. So cytokines go out. But it becomes a chronic see saw between immune system and XMRV, since the virus can go dormant. This would explain good days and bad days for many of us. It also might explain why some of us actually recover. If we are able to cut back on the triggers, then maybe some of us actually win the war so the immune system gets it at such a low level that the coinfections are kept in check and no cytokine response.

But, even for those who have recovered, they can get a sudden, strong trigger, such as when I caught the H1N1 last year, and suddenly XMRV is replicating like mad, and the downward spiral returns.

Now, your theory is that even the healthy with the virus have the immune system dysfunction we have. I would say they do, but at so much lower a level, with lots less level of virus in their system, that the immune system is still able to fight HHV-6, EBV, etc. And likely a NK Cell test for them would not show abnormally since many more of their NK cells don't have the XMRV. But these individuals, in my opinion, are susceptible to coming down with CFS if the virus gets the upper hand by some triggers.

Also, the virus may be handled by the immune system, but the virus takes up lodging in the prostate, the brain or other areas causing problems that lead to illness. I am thinking of HPV that irritates the cells, ultimately causing cancer. But, it can also be kept at a low level in many women. Many women live for many years without the illness. But some do develop cervical cancer.

In these cases, the virus is causing damage to the cells in that area. Since we know that XMRV can infect many cells of many different parts of the body, then who knows what damage it is doing in those cells, especially since it is a retrovirus, it could be pulling strings of other parts of the cell DNA.

Correct me if I am wrong, but doesn't HIV attack just a certain part of the immune system, just a different part than CFS?

I remember Klimas saying that her first CFS patient showed immune system abnormalities that mirrored AIDS patients, that is parts of the immune system abnormal in the CFS patient was opposite to the parts abnormal in her AIDS patients. Does that mean AIDS patients have only parts of their immune system affected?

I am sure someone on this board can confirm for me or tell me I am wrong.

I think the key is whether the virus continues to replicate or needs triggers to replicate.

Tina

 

[redo]

Thanks for your thoughts Tina.

One key to understanding the illness would be to find out of the healthy controls do or do not have the same immune problems as those with CFS. If they do, then that strengthens the theory that another infection is needed to cause the symptoms, and if it don't then i weakens it.

"Correct me if I am wrong, but doesn't HIV attack just a certain part of the immune system, just a different part than CFS?"

Yes, it only attacks part of it. But those parts are important for a lot of normal diseases, so the immune dysfuction which can be seen is "broad" in terms of how many illnesses the body get a problem with.

Do you have any links to info on XMRV using the prostate as a reservoir? I'd really like to read more on it.
I thought it was only the strain that was associated with prostate cancer that had that reservoir.

 

[usedtobeperkytina]

you're right, the studies did say the prostate cancer XMRV was slightly different.

That is curious, isn't it?

I was thinking of the rhesus macaques study that showed the virus all over the body. It didn't say whether it was the CFS strain or prostate cancer strain. It may not matter. I'm thinking that wherever it is in the body, living in those cells, it can be causing problems, possibly cancer. And, of course, some theorize that other neurological diseases (autism, for one) may be caused by it. So, that would assume it does go to brain cells. In fact, Mikovits said it is important to reduce the virus in the body before it ends up into long-living cells.

So I don't know if there is a place that is a "reservoir" but it seems it can infect many different cells all over the body. And an infected cell can not become uninfected. So there the virus is.

Tina