The XMRV Confidence Poll

[Cort]

You've heard of the Consumer Confidence Poll that tracks how consumers feel about the economy? The XMRV Confidence Poll asks what your assessment of XMRV in CFS is right now.

 

[Knackered]

I don't believe you've worded the poll correctly, you didn't even state which criteria you'd like to use. Based on your poll I'd have to say I didn't believe XMRV was the cause of ME/CFS. However I do believe it's the cause of CCC/CCD CFS.

Based on a poll I made here:
http://www.forums.aboutmecfs.org/sh...ons-on-the-term-CFS-please.&p=86874#post86874

Most people, including myself think the term CFS is not an objective term and unfortunately it is, despite that most people speak of it as though it's one condition, XMRV most probably causes CCC CFS but I doubt it causes MCS or Oxford criteria etc. They're different illnesses. Someone I spoke to a couple of days ago likened it to Cancer and Anorexia patients, both suffer weight loss, so have a broad category called weight loss syndrome, put both set of patients and there and use them as a cohort for trying to find why people are losing weight. This is what's happening and has always happened with CFS and yet it's always spoken of as if it's one illness.

XMRV to CCC CFS should be thought of as HIV is to AIDS.

 

[awol]

I fully agree with Knackered, except that I am more open to the possibility that there is ANOTHER virus or other problem causing immune dysfunction that can lead to CCC CFS. As Knackered said, the category is way too broadly defined, and probably combines many illnesses. Even the CCC contain a huge number of different symptoms, not experienced the same way by everyone. I truly want to believe that XMRV will prove to be the cause for everyone. However this might not be the case, and some people with CCC CFS may turn out to have some other as yet not identified problem that creates a similar cascade of symptoms.

In other words, I am quite quite convinced that XMRV causes ME/CFS. I am not, however certain that it is the ONLY cause of ME/CFS as these things are currently defined. OBVIOUSLY XMRV will, by definition, be the only cause of XAND.

Cort - your poll should have an option that says "I absolutely believe that XMRV is A cause of ME/CFS"

 

[bullybeef]

The other issue is, with XMRV maybe being linked to numerous diseases, and therefore XAND maybe the outcome of a spectrum of diseases, all closely related, but reacting differently in people.

 

[Countrygirl]

( I have just written a post, but it has vanished from the screen , so apologies if it appears twice......I will try again.)

I have read through the poll, but find I cannot answer it.

I believe now, weighing up all the evidence, that XMRV is a major player, and very likely causative for a substantial subset - if not the majority - of those who fulfil the CCC. Here in the UK, however, you only require the symptom of prolonged fatigue to receive a dignosis of 'CFS' and I don't believe that XMRV will be the answer for that particular group of patients. However, in my experience, the majority of the people who I know who are being currently tested in the current WPI study do fulfil the CCC, so it is possible that they will prove positive. If this should prove to be so, I still don't think that we can then assume that XMRV is the cause of the condition being labelled CFS/ME in the UK because a number do not have the symptoms of ME as defined by Ramsey or by CCC.

For others, who fulfil the CCC, I think it likely that they will have what Dr Hyde refers to as 'Secondary ME' following poisoning by organochlorines and organosphosphates ( I think that the work of the Glasgow team back in the '90s confirmed that) and that others will have a chronic enterovirus infection as hypothesised by Ramsey, Dowsett, Richardson, and now, Dr Chia. (It is, of course, possible that XMRV is triggered by toxic exposure and that the chronic enteroviral infection is a result of a underlying XMRV infection, or even another undiscovered retrovirus. ) At the moment though, if you ask whether I think that XMRV is a major player in CCC ME, and probably causative, the answer is 'yes', I do.

 

[redo]

I voted "I think XMRV may play a role in ME/CFS as a cofactor".
And that's what I've thought from the very beginning.

I think the virus could "break the door open" for other infections.

So that the virus causes some direct symptoms by it's own (perhaps a third of the symptoms in many cases), and the other infection - which has been allowed to thrive because the immune system has been put out of place - causes the rest of the symptoms.

Key to treating it would most likely be to treat both.

Anyway, that's my thoughts about it.

 

[awol]

Redo,

How is saying that XMRV causes immune problems which lets other viruses thrive causing CFS different from saying that XMRV causes CFS?

This is exactly what happens in HIV/AIDS. People with AIDS don't technically die of HIV, they die of pnemonia, weakness from herpes viruses, from enteroviruses.... the list goes on and on. The viruses that are let loose in AIDS cause most of the symptoms, but the overall cause is still HIV.

I should know because my uncle, an early AIDS victim, technically died of pnemonia.

 

[bullybeef]

Just to concur with you awol; it is fascinating how much we don't understand about AIDS unless we’ve looked it up. Last time I visited my consultant, I pick up a HIV leaflet and have a good read. And you are quite right, awol, HIV causes AIDS which simply reduces the immune system allowing for other infections, and viruses to become the cause of death. In any sense, AIDS is a cofactor, but it is also the outcome of HIV.

To my mind, only one person in the UK has died as a direct result of ME (Sophia Mirza), but how many deaths have been lost in autopsies, or by more likely as a result of another co-infection, and ME avoids the radar (or is conveniently ‘covered-up‘)?

 

[redo]

There's a important difference.

I can explain what I meant. And let me know if there's something you'd like me to elaborate on. Needles to say, I don't have an exact answer, but a hypothesis...

What I think, and have thought since the Science paper came out, is that having XMRV is not enough to get CFS.
3.7% healthy people in the study had XMRV, which I think reflects the general population. (Give or take some to that percentage).

And I think that the immunocompromised state that arrives from XMRV is a specific immuncompromised state. If not, then we'd see much of the same as we see with HIV (stuff like you mentioned, that people can and do die from common infections).

I think the specific immunecompromised state the patient gets in makes the patient much more vulnerable to an otherwise manageable infection (bacteriological).

I don't think it's a random infection (because the immunecompromisation isn't broad). I think it's a specific infection, that in turn causes the specific, but broad, symptom package that we see with CFS.

That one infection causes most of the symptoms, but it could do so without the "help" of XMRV.

That's my thoughts.

 

[Mithriel]

Polio is a respiratory virus which goes in a few days. What we think of as polio is a s serious side effect that only a few people get. It was only when they realised this that they were able to isolate the polio virus.

Other enteroviruses are the same so the Coxsackie b virus which is implicated in classic ME is called summer flu, but some people get ME.

XMRV may be the reason, or one of the reasons why the viruses are able to get deep into the body by evading the immune system.

I'm don't think immunocompromised is the right word. We have an immune disease but it is a dysfunctional system which works well for some things at some times not at others.

Mithriel

 

[redo]

I didn't write immunecompromised, but "specific immunecompromised state". Meaning handles most infections well, but has serious problems with a few (or one, which is my hypothesis).

Well I am not sure if it's the right word or not. But I guess you can understand the meaning of it.

Do you have suggestions for other words for it, when what is meant is serious problems with handling one infection, but handles most others well?

Specific immunodeficiency?

 

[Mithriel]

I was just musing rather than answering anything specific.

ME/CFS is such a minefield that we have to keep looking at how an issue will be perceived. If we say we are immuno compromised then they will say we are pretending to have a serious issue that thye can easily prove we don't.

I think the traditional immune dysfunction covers everything important as a short hand.

When I first read about XMRV I got the impression that they felt it created an environment where certain viruses were able to get to a position where they were then able to evade the immune system even when it was working normally, though XMRV itself also causes mitochondrial and nerve damage.

With AIDS, you get things that the immune system could keep under control if it was working, but in general, with ME/CFS you get herpes viruses which are only ever controlled by a healthy immune system but never destroyed and enteroviruses which don't replicate true so the immune system can't recognise them any more.

Mithriel

 

[redo]

You're right it's a minefield.

The point made was that I don't think there is a broad immune dysfunction - if you will - but a specific one. Which is serious if we get the infection that the XMRV has "open up for".


(this is not addressed to you Mithriel, or anyone else in specific)
Saying HIV leads to AIDS is often right.
And I think that saying XMRV leads to a specific immune dysfunction is often right.

But the big difference between saying XMRV leads to CFS -- and saying HIV leads to AIDS; is that AIDS is the broken down immune system, and not the symptoms.
It's for the most part the other, otherwise non-life-threatening infections that kill the AIDS patients. HIV may cause a chunk of the symptoms, but far from all...

I think it's the same with XMRV, but that it's a specific immune dysfunction that opens up for a specific infection.
And that the healthy positive controls don't have that specific infection, and are therefore for the most part fine...

 

[awol]

But the big difference between saying XMRV leads to CFS -- and saying HIV leads to AIDS; is that AIDS is the broken down immune system, and not the symptoms.

Redo,

This is simply the result of the fact that with AIDS the results of HIV were clearly documented, while with CFS this is not the case. Our disease is defined ENTIRELY by our symptoms for the moment. This distinction will disappear when we say that XMRV infection leads to XAND, which once upon a time, for lack of complete understanding, was called CFS.

Ergo, XMRV is still likely a cause of CFS.

 

[redo]

Well, of course it's fine to have that viewpoint on it: That XMRV causes CFS, without other factors in most cases.

My viewpoint is different.

I think what will happen years down the line is that they'll see that XMRV causes a specific immune dysfunction.
And that the Low NKCell function is part of that immune problem.

I think the 3.7% of the healthy controls in the Science study of XMRV have much of the same specific immune dysfunction that the CFS patients have.

But that they 'need' to get another specific infection to get CFS. And that most of the symptoms don't come from XMRV, but from the infection that XMRV has opened the door for.

 

[awol]

Well, of course it's fine to have that viewpoint on it: That XMRV causes CFS, without other factors in most cases.

My viewpoint is different.

I think what will happen years down the line is that they'll see that XMRV causes a specific immune dysfunction.
And that the Low NKCell function is part of that immune problem.

I think the 3.7% of the healthy controls in the Science study of XMRV have much of the same specific immune dysfunction that the CFS patients have.

But that they 'need' to get another specific infection to get CFS. And that most of the symptoms don't come from XMRV, but from the infection that XMRV has opened the door for.

Redo,

I didn't say causes without other factors. Noone is saying causes without other factors. But none of the other viruses or infections currently linked to CFS leads to this condition under normal circumstances. The fact then that the circumstances are NOT normal is the root cause of the disease. And ANY of these other factors can tip a person into full blown CFS.

 

[redo]

Well, I didn't say that you proposed that XMRV leads to CFS without other factors. What I understood you as was that you meant that XMRV leads to CFS, in most cases, without other factors.

But as I see it in the last post, your opinion is that you need any of the other factors in a person with XMRV, to give them CFS.
And then you also think that XMRV causes most of the symptoms when the other infection has set XMRV off? Or do you think it's the other factors, setting it off, that stands for most of the symptoms?

It's a legitimate hypothesis, no pun intended.

My opinion is that the XMRV only opens up for one specific other infection, because the immune dysfunction seen in the patients is more specific than broad. And that the combo (of XMRV + other specific infection) can lie latent for years until a immune suppressing event happens (such as a vaccine, child birth, epstein barr infection, surgery, stress, influenza etc). And then it breaks out, and gives the patient CFS.

 

[awol]

My opinion is exactly the same as the hypothesis set out by the discoverers of XMRV in CFS:

XMRV is a virus that, like other known retroviruses, causes systemic disregulation. The exact nature of this disregulation needs further study, but seems to implicate NK cells. The disregulation leaves those infected at a disadvantage with regard to common infections and toxins that normally would not cause significant problems.

Vaccines on their own do not lead to full blown CFS. XMRV infection plus an immune trigger like a vaccine does.
Heavy metal exposure on its own does not lead to full blown CFS. XMRV infection plus a heavy metal trigger does.
EBV, HHV-6, enteroviruses, etc... none of these on their own lead to full blown CFS. XMRV infection plus these viruses does.

Notice how the ONLY consistent factor in the above examples is XMRV? Therefore it is the cause, not simply a co-factor. Saying it is just a co-factor would mean that if I combined heavy metal exposure with HHV-6 I would also get full blown CFS. This is simply not the case.

As I said earlier though, I am open to there being ANOTHER virus or defect that causes a similar disregulation that also causes CFS, that has not been identified yet. So while being a cause, it may not be the only cause.

 

[redo]

Yes, it needs further study. What we have now are hypothesis and not answers.

I think that when the tests are perfected, they can find it in almost all of the CFS sufferers. So it's almost always a factor in the disease.

I think that when XMRV is there alone, like in the healthy controls, it causes little harm (even when other factors such as vaccines, surgery and the others mentioned has been done/happened with the patient). And that there has to be XMRV + a specific bacteriological infection that XMRV has open the door to, to become CFS.

And that they lie latent together (XMRV + specific bacteriological infection), until another factor, like the immune stressors I mentioned, sets them off.

 

[awol]

Yes, it needs further study. What we have now are hypothesis and not answers.

I think that when the tests are perfected, they can find it in almost all of the CFS sufferers. So it's almost always a factor in the disease.

I think that when XMRV is there alone, like in the healthy controls, it causes little harm (even when other factors such as vaccines, surgery and the others mentioned has been done/happened with the patient). And that there has to be XMRV + a specific bacteriological infection that XMRV has open the door to, to become CFS.

And that they lie latent together (XMRV + specific bacteriological infection), until another factor, like the immune stressors I mentioned, sets them off.

But those other factors are triggers, not causes. The cause is XMRV.