The XMRV Confidence Poll

[redo]

The other factors, like those mentioned above, are triggers.

I think that the cause is the combination of one specific bacteriological infection and the virus. And that people can be fine with the virus, triggers that come, and the specific immune dysfunction that may very well be a result of the viral infection. As long as they don't get the specific bacteriological infection that problems with the immune system has opened the door for.

 

[Cort]

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.

That certainly nagged at me as I did the poll but I just decided to leave it vague. Its still hard to tell where XMRV is - remember the WPI found that 2/7 samples in the Kuppeveld group that Parvofighter demonstrated seemed so strange - were positive for XMRV! Hopefully some studies will differentiate between the different definitions and we'll know. I'd certainly agree with you that I would think XMRV is much more likely to be found in CCC than Oxford or Fukuda.

 

[awol]

redo,

Ok, well I am quite confused on why you seem to think a bacteria problem is necessary. A retrovirus messing with gene regulation and throwing the system off is sufficient when triggered by anything that stresses the immune system. I have ME/CFS, but I do not have a bacteria problem. What bacteria are you nominating as causal? Would you effectively be saying I don't have ME/CFS if I don't have a certain bacteria? I think you are making it more complicated than it already is, unnecessarily.

 

[Knackered]

I'd certainly agree with you that I would think XMRV is much more likely to be found in CCC than Oxford or Fukuda.

99% according to Whittemore. Oxford's useless.

That certainly nagged at me as I did the poll but I just decided to leave it vague.

Why? You're smart enough to know most people who fall under Oxford share pretty much zero relationship with those who are covered by CCC. I fail to understand why you'd purposely make it vague. It's precisely because vagueness of this why the more seriously sick people with a neurological condition are still sick after all these years, being lumped in with people who are depressed is damaging and is causing needless suffering and death. To promote this is to promote the longevity of this suffering and death.

The vagueness surounding "CFS" needs to be finished for good, it doesn't need administrators of major CFS boards promoting it. It's about time users of CFS boards along with those who run the boards start taking responsibility to do something about it.

 

[redo]

Which bacteria? I think spirochetes are involved in this soup. In many regions twenty to thirty percent of the population have a latent spirochete infection. And I think that it gets dangerous only when the immune system has been opened up by an XMRV infection.

I think the bacteria is transmitted through other ways then ticks. And that the spirochete is what causes most of the symptoms. It doesn't have to be the classical Borrelia spirochete. It could be other subgroups.

I don't know of any other group of either viruses or bacteria that causes the exact same symptoms as we see in CFS, except for that one.

There are many rocks which haven't been turned with regards to this.

 

[awol]

Which bacteria? I think spirochetes are involved in this soup. In many regions twenty to thirty percent of the population have a latent spirochete infection. And I think that it gets dangerous only when the immune system has been opened up by an XMRV infection.

I think the bacteria is transmitted through other ways then ticks. And that the spirochete is what causes most of the symptoms. It doesn't have to be the classical Borrelia spirochete. It could be other subgroups.

I don't know of any other group of either viruses or bacteria that causes the exact same symptoms as we see in CFS, except for that one.

There are many rocks which haven't been turned with regards to this.

This is unnecessarily complication. The gene disregulation and immune dysfunction that XMRV is responsible for is enough to explain all symptoms and coinfections. There is no need to muddy the soup with a theory about bacteria. These bacteria may indeed be present and causing symptoms in some people with CFS, but this will be just a sub-group like the HHV-6, EBV and various other sub-groups.

In my mind, the only other relevant co-factor will be the one that explains why this disease is more prevalent in women.

 

[redo]

It's my theory of how it is. I didn't expect that you'd get onboard with it.

When it comes to why the disease is more prevalent in women. And it is. I think the reason for that is much the same as we see with HIV: Women respond to the retrovirus differently then men. Men and women have significant differences in their immune system (in general). There are many studies on that.

Here's a presentation about HIV and the significant sex difference on disease progression:
http://www.whicc.net/pdf/Tuesday1/Gender HIV-1 innate immunity_JJC_Final tues.pdf

Absolutely worth a look.

 

[Countrygirl]

I have a question, which may have been answered here in the past, and I'm sorry if I am duplicating a discussion that has already been covered in detail. I can't remember

Today, I had a long conversation with a biochemist who is very severely ill with ME and multiple chemical sensitivities. Her condition is so extreme that she has lived in a hut on an organic field for about fifteen years. She is extremely knowledgable and I'm really hoping that I will be able to access her written work to post on this forum. However, her interpretation is very different to that which is posted here. She does have the advantage of being, in her words, the most researched person in Europe and has a mountain of papers of medical results, which are stored in my attic at present.

I am tryng to arrange a blood draw for her as part of the UK trial. According to the biochemist, however, she maintains that most of the cases of ME are chemical poisoning and she has a bewildering array of case notes and evidence from ME and MCS specialists to prove her case. She firmly believes that XMRV will only be a co-factor and not the cause of the illness.

What I would like to know from those here who scientifically inclined, is it possible that a gamma retrovirus alone could cause us to produce severe and life-threatening reactions to chemicals? I know many of us, including me, have MCS, but is it possible that XMRV could cause us to have this reaction in the first place. ( I am confused because my illness was triggered/caused by organochlorines) My friend says, no, the toxic exposure is the cause and the infections are secondary. As a biochemist, she worked with organochlorines and organophosphates, developed ME and then severe MCS. So, which comes first: XMRV or toxic chemical exposure? Or are chemical poisoning and ME two different conditions, which produce the same symptoms?

Anyone, please?

Thanks

C.G.

 

[awol]

What I would like to know from those here who scientifically inclined, is it possible that a gamma retrovirus alone could cause us to produce severe and life-threatening reactions to chemicals?

Yes, it is quite possible. It is a retrovirus, not just a virus. It inserts itself into our genome. By doing that it is probably capable of completely throwing our normal reactions to chemicals off.

 

[awol]

Here's a presentation about HIV and the significant sex difference on disease progression:
http://www.whicc.net/pdf/Tuesday1/Gender HIV-1 innate immunity_JJC_Final tues.pdf

Absolutely worth a look.

Thanks for the link redo

 

[Cort]

99% according to Whittemore. Oxford's useless.



Why? You're smart enough to know most people who fall under Oxford share pretty much zero relationship with those who are covered by CCC. I fail to understand why you'd purposely make it vague. It's precisely because vagueness of this why the more seriously sick people with a neurological condition are still sick after all these years, being lumped in with people who are depressed is damaging and is causing needless suffering and death. To promote this is to promote the longevity of this suffering and death.

The vagueness surounding "CFS" needs to be finished for good, it doesn't need administrators of major CFS boards promoting it. It's about time users of CFS boards along with those who run the boards start taking responsibility to do something about it.

honestly Knackered I was tired at the time and it was easier...but I do see another poll coming

 

[Knackered]

honestly Knackered I was tired at the time and it was easier...but I do see another poll coming

How about now?

We're all working towards the same goal, right? I'd support you and so would so many others if you did the right thing.

 

[Gemini]

What I would like to know from those here who scientifically inclined, is it possible that a gamma retrovirus alone could cause us to produce severe and life-threatening reactions to chemicals?

Countrygirl,

There is mounting scientific evidence that any chronic infection, including retroviral infections, alter the metabolizing enzymes in the cytochrome P450 system which metabolizes chemicals, toxins, drugs, etc. It is believed this altered metabolism may be caused by chronic immune activation and cytokine exposure, the consequences of a chronic infection.

If your friend checks MCS research on PubMed there are references to the specific P450 enzymes associated with MCS. HIV research is dealing with this issue as well (PMID: 20084375 for example).

There is commercially available genetic testing of the P450 system which can help MCS patients determine if they have a genetic predisposition to MCS. For instance, if one had a genetic predisposition to MCS and a chronic infection, that might lead to a more severe case of MCS.

I hope this helps.

Gemini

 

[Cort]

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

I agree. I knew I was missing options - just couldn't think what they were at the time

 

[Cort]

How about now?

We're all working towards the same goal, right? I'd support you and so would so many others if you did the right thing.

Well, the next poll is done - let me know what you think - the XMRV Prevalence and Definition Poll: http://www.forums.aboutmecfs.org/showthread.php?5328-XMRV-Prevalence-and-CFS-Definition-Poll