At this point, how likely do you think it is that HMRVs are the cause of CFS/ME?

ukxmrv · Sep 29, 2011

Tate in New Zealand had a delay in even starting research. They had to build a new facility for him at the Uni / Med School and I don't know if he has even begun to look at XMRV in earnest.

justinreilly · Sep 29, 2011

undcvr said:
I have never thought at XMRV was the cause of CFS/ME and am glad that I can finally say it without being seen as being disloyal to the CFS community. Back then, it seemed ridiculous considering the demographic of where CFS would occur. It just did not seem consistent with the graph of how a new virus would spread when it first goes epidemic. CFS was already everywhere.

Can you pls elaborate on this? In Osler's Web Cheney graphed out cases of his patients and he (and/or Johnson) said it followed a classic virus attack rate curve which they characterized as very slow for years then steeply rising for a few years and then slowly descending (after the virus had already caused ME in the 'low-hanging fruit' people).

justinreilly · Sep 29, 2011

eric_s said:
It's not such a big deal because of one thread and like i said i really don't want to bother anyone. I also use the term ME/CFS, for the reasons people mentioned on this thread. But even if it seems like an irrelevant detail, i think there's an important difference between "ME/CFS" and "CFS/ME". Because it gives you a different impression, but also because it's a different group of people that's using each. And one of them are not our friends, in my opinion (that of course doesn't include members of our community who say "CFS/ME", don't misunderstand me). Im quoting from Cort's interview with Marj van Sande (http://forums.phoenixrising.me/cont...-Criteria-for-ME-the-Marj-Van-Sande-Interview): I just think we should not play into the hands of these people (don't know if you say that in English). Sorry, Esther, like i said, nothing personal ;-) I personally prefer "CFS" over "CFS/ME", because CFS is just CFS, something defined by Fukuda, Holmes, etc. "CFS/ME" gives me the impression that there is a disease called CFS, but you can also call it ME and now you lump the ME cases together with the CFS population, but it's still CFS. It kind of soils the name "ME". Even though weasels don't have a very large brain, i don't think they introduced this term by chance... "ME/CFS" on the other hand puts the emphasis on ME. Now i will stop taking this thread off topic...

Eric, I totally agree that ME/CFS is much better than CFS/ME for the reasons you state. I do think ME is the best term and "CFS" the worst, so i don't use "CFS" and I urge everyone to do the same and only use ME.

Bob · Sep 30, 2011

barbc56 said:
Bob, haven't had a chance to answer your question until now. This thread is about how likely we think HGRV's are the cause of ME/CFS. I gave my opinion, voted 0-1% and won't be sidetracked nor drawn in by your post and go round and round with these stale arguments.

Hi barb,

I apologise if my post irritated you.

It wasn't aimed directly at you personally...

I was just making a general discussion point, using your post as a starting point.

So I didn't mean to challenge you personally.

My post was just part of the general discussion.

Bob

Bob · Sep 30, 2011

I'd just like to make the point that I think this thread is a perfect place to discuss or debate XMRV, and our opinions about it.

I think that's what Esther set it up for (?)

FancyMyBlood · Sep 30, 2011

mellster said:
This doc in New Zealand I think who has a daughter with ME/CFS and was about to publish some breakthrough retroviral related stuff I think - this was gathered from a radio interview posted on this forum some time ago.

I believe it had nothing to do with retroviral stuff. One of his students was looking for biomarkers in ME/CFS and IIRC he was discussing a viral pathway they were looking at. The only thing he said about XMRV was that the subject is highly controversial and he wouldn't really comment any further. This is all from the top of my head, though.

Also I don't understand the results of the poll. I think it's solely based on wishfull thinking. Don't get me wrong, I really hoped XMRV played out as much as the next guy/girl, but it's dead. We have to accept this fact and start focussing on other options. I also don't put much trust anymore in anything the WPI has to say about XMRV/HGRV. They've become an outcast in the scientific community, and I believe they also should be focussing on other options. Everything they've told in the past is pretty much proven wrong, so it seems it's only a matter of time this HGRV stuff is gonna collapse too.

Esther12 · Sep 30, 2011

Bob said:
I'd just like to make the point that I think this thread is a perfect place to discuss or debate XMRV, and our opinions about it.

I think that's what Esther set it up for (?)

I actually set it up just because I was really interested in how people would vote - but threads always define themselves. I've probably done more to turn it in to a discussion than anyone else! This could be the perfect place for such a discussion, despite my more limited intentions for it.

Currently, I'm surprised by both the distribution of the vote (lots of 10-39%), and how many people still think the WPI's work is likely to stand up. I wonder if I did the same poll, but in the 'General' section, rather than the 'XMRV' section, it would get very different results?

Possibly related to this discussion: I've seen a few places reporting that WPI and associated labs have pulled all testing for XMRV/HGRV/related now. : http://forums.phoenixrising.me/showthread.php?13925-VIP-Dx-XMRV-Test-discontinued

barbc56 · Sep 30, 2011

Bob said:
Hi barb,

I apologise if my post irritated you.

It wasn't aimed directly at you personally...

I was just making a general discussion point, using your post as a starting point.

So I didn't mean to challenge you personally.

My post was just part of the general discussion.

Bob

I don't let people irritate me nor mind personal challanges. I do, however, prioritize how I use my energy. :>)

barbc56 · Sep 30, 2011

Esther12 said:
I actually set it up just because I was really interested in how people would vote - but threads always define themselves. I've probably done more to turn it in to a discussion than anyone else!

Currently, I'm surprised by both the distribution of the vote (lots of 10-39%), and how many people still think the WPI's work is likely to stand up. I wonder if I did the same poll, but in the 'General' section, rather than the 'XMRV' section, it would get very different results?

Possibly related to this discussion: I've seen a few places reporting that WPI and associated labs have pulled all testing for XMRV/HGRV/related now. : http://forums.phoenixrising.me/showthread.php?13925-VIP-Dx-XMRV-Test-discontinued

I'm rather surprised, too. It would be an interesting to see if posting the same poll in the general section would show different results. I think it's a great idea.

Thanks for the link. It looks like this issue has become quite contenscious on the mecfs forum.

Bob · Sep 30, 2011

Esther12 said:
I actually set it up just because I was really interested in how people would vote - but threads always define themselves. I've probably done more to turn it in to a discussion than anyone else! This could be the perfect place for such a discussion, despite my more limited intentions for it.

Currently, I'm surprised by both the distribution of the vote (lots of 10-39%), and how many people still think the WPI's work is likely to stand up. I wonder if I did the same poll, but in the 'General' section, rather than the 'XMRV' section, it would get very different results?

Possibly related to this discussion: I've seen a few places reporting that WPI and associated labs have pulled all testing for XMRV/HGRV/related now. : http://forums.phoenixrising.me/showthread.php?13925-VIP-Dx-XMRV-Test-discontinued

I suppose that "10-39%" is something like: "it's a possibilty, but it's not looking very likely right now."

(But that's not putting words into people's mouths - it's just my interpretation.)

I agree that you might get different scores in the general section.

SilverbladeTE · Sep 30, 2011

Science isn't about consensus
but "real" science gets cloused by ego and money/power etc.
Eventually the facts, or disaster/profit potential, bulldozes through.
Just wait, folks, as it takes time for it to get sorted out and with the bias against us from "On High" it doesn't help clarity

ukxmrv · Sep 30, 2011

It's not wishful thinking of behalf of patients who selected the high scores in this poll. I've tried to read every relevant XMRV paper that has come out since the original Science paper. I've also read the BWG paper that just came out.

Nothing has happened to change my mind that HGRV's could be implicated in CFS and ME. There have been no new arguments put forward in this thread that would make it any difference - just other people's opinions - which is fine with me.

barbc56 · Oct 2, 2011

ukxmrv said:
It's not wishful thinking of behalf of patients who selected the high scores in this poll. I've tried to read every relevant XMRV paper that has come out since the original Science paper. I've also read the BWG paper that just came out.

Nothing has happened to change my mind that HGRV's could be implicated in CFS and ME. There have been no new arguments put forward in this thread that would make it any difference - just other people's opinions - which is fine with me.

So have I, yet we have very different conclusions.

Anything is possible, but HGRVs implicated in ME/CFS isn't very probable. In fact, highly improbable.

In Science/Statistics these two terms are very important. :>)

Firestormm · Oct 3, 2011

'At this point, how likely do you think it is that HMRVs are the cause of CFS/ME?'

Sorry to be dumb, but what's a 'HMRV'? I get lost with all the acronyms - is this one new only I replied thinking it was 'HGRV'?!?!

Dreambirdie · Oct 3, 2011

Firestormm said:
'At this point, how likely do you think it is that HMRVs are the cause of CFS/ME?'

Sorry to be dumb, but what's a 'HMRV'? I get lost with all the acronyms - is this one new only I replied thinking it was 'HGRV'?!?!

I assume it was a typo, and is supposed to say HGRV--as in human gamma retrovirus.

Esther12 · Oct 3, 2011

They kept changing names!!! It's not my fault.

Ah well - it seems that most of us think CFS is likely to be caused by an acronym that I just made up. Whenever we do find out exactly what causes CFS, we should name it 'HMRVs' in honour of this poll.

Firestormm · Oct 3, 2011

So long as it isn't just me Esther

Daffodil · Oct 3, 2011

we should name it FKA virus as in fking azzhole virus

barbc56 · Oct 3, 2011

SOC said:
Improbable based on the nature of the illness and symptoms? Or are you just thinking improbable that current research will play out?

Poll questions always leave so much room for interpretation.

What I meant was that HGRVs will not play out as causative of ME/CFS. My theory is that it's something connected to our immune system that is making us react so dramatically to exposure. My first sentence goes by the science as it stands now. My second, of course is an educated guess and IMHO, needs to be investigated.

Daffodil · Oct 3, 2011

well mikoivts has seen the virus budding out of the cells of CFS patients. that counts for something. and i am 110% sure it a retrovirus.

At this point, how likely do you think it is that HMRVs are the cause of CFS/ME?

At this point, how likely do you think it is that HMRVs are the cause of CFS/ME?

70-100%

40-69%

10-39%

2-9%

0-1%

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work in progress

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