Article: Muddy Waters: XMRV and CFS

You can view the page at http://www.forums.aboutmecfs.org/content.php?89-Muddy-Waters-XMRV-and-CFS

 

Thanks for another update.

A shame that things seem to be staying so murky, rather than getting clearer.

 

It is rather bizarre. I think we will get some clarity, though, with the article in Science from Dr. Mikovits next month.

 

Thank you for consolidating some info - I haven't been able to get through Parvo's posts yet. Too much for me to process right now!

 

Hi Cort

As always you have put together another great piece of journalism. Each article dovetailing nicely with the last. There is a but here. I bet you could sense it coming? It's the following paragraph I found out of kilter with the all the others.

Kurt has brought forward another more disturbing possibility; that the validation study results thus far are correct and that XMRV is not found in CFS…but something else is. In this scenario XMRV shows up in those original uncultured samples and then disappears in later uncultured samples and then appears to reappear in cultured samples because the culture process itself is bringing something else out patient's blood that looks very much like XMRV. This is a kind of ‘ inadvertent but possibly very lucky’ scenario in which WPI researchers do possibly find an important factor in ME/CFS - just not the one they were looking for. It’s all speculation at this point; with a new set of studies reportedly about to be reported on, XMRV is at a fork right now; the path it ends up traveling down is still encouraging wreathed in the fogs of the future.

I have followed Gerwyn and Kurt (and others in the HERV thread), and, whilst I admit I am more than a little biased in favour of XMRV being the cause of CFS/ME (Judy M speculates, and is clear that she is doing so, that she thinks most people with CFS/ME will have the bug) I did not find anything compelling in the pro-HERV argument. From what I can discern, using my less than scientific take on matters, this is highly speculative. It might be best to be a little more clear about this in the article, when you say, 'Kurt has brought forward another more disturbing possibility...'

I understand you wish to achieve balance, but on that basis any number of speculative theories could have made it into the article. If the pro-HERV theory is indeed gaining any credibilty, then it is incumbent upon you to cite a couple of well regarded sources (no offence to Kurt) to back this up.

 

"This, of course, lead some in the patient community to wonder if the early studies wanted to find a virus."

This comment begs the question whether patients understand the scientific method.

In a scientific study, at least in those that can be trusted, the investigator(s) hypothesize a condition. I.E., do people with CFS exhibit any evidence of retroviral DNA in their blood? They then design a study that will either confirm or deny the existence of such retrovirus particles in the blood collected from their selected cohort. In a perfect world, the cohort would be selected prior to the hypothesis. Sometimes that doesn't happen, and it can indeed muddy the waters if the cohort is selected after the hypothesis is made.

However, it is my understanding that the WPI study, at least, had a group they were performing tests on prior to their XMRV discovery. So the selection effect - that is, selecting study subjects to influence the outcome - was not a factor. In fact, I believe the WPI were as surprised as anyone else to find that indeed there were retroviral particles in a large number of study participants. Maybe they were influenced by earlier work by Dr. Elaine DeFreitas to state the hypothesis. But I doubt they expected - or wanted - to find a retrovirus, one of the most difficult illnesses to treat, in their blood samples.

I cannot comment on other reports about finding XMRV, since I haven't studied them. It is hard enough for me to go through even 1 report. But I think it is important for everyone to keep the over-all scientific method in mind before commenting on whether a study is valid or not. Not replicating the exact test protocol is a definite way to dismiss a follow-up study. That's about as far as I would go to dismiss work done in other labs.

 

Welcome Pat. Thanks for your post.

 

HERV would stick out like a sore thumb

Hi Cort

As always you have put together another great piece of journalism. Each article dovetailing nicely with the last. There is a but here. I bet you could sense it coming? It's the following paragraph I found out of kilter with the all the others.



I have followed Gerwyn and Kurt (and others in the HERV thread), and, whilst I admit I am more than a little biased in favour of XMRV being the cause of CFS/ME (Judy M speculates, and is clear that she is doing so, that she thinks most people with CFS/ME will have the bug) I did not find anything compelling in the pro-HERV argument. From what I can discern, using my less than scientific take on matters, this is highly speculative. It might be best to be a little more clear about this in the article, when you say, 'Kurt has brought forward another more disturbing possibility...'

I understand you wish to achieve balance, but on that basis any number of speculative theories could have made it into the article. If the pro-HERV theory is indeed gaining any credibilty, then it is incumbent upon you to cite a couple of well regarded sources (no offence to Kurt) to back this up.

As I recall the conversation, Kurt brought up HERVs and Gerwyn said they would stick out like a sore thumb in some of the tests done by WPI, and Kurt conceded that was true. So, I have to second Adam's comment. I didn't find anything compelling in the pro-HERV argument, at least re: the WPI research which was the subject at hand.