You may wonder why the CAA treats XMRV the way they do... So:

[omerbasket]

You may want to read these things, that were written by Dr. Vernon in the following article from July 2009:

the outcomes of pathophysiological research have generally featured delineation of what CFS is not - a muscle disorder, a retroviral infection, a recognised psychiatric disorder, a known autoimmune disorder, etc.

I found this on google, so there is the HTML version of the article:
http://webcache.googleusercontent.c...etroviral+infection"&cd=1&hl=iw&ct=clnk&gl=il

And the "Word" version of the article:
http://www.google.co.il/url?sa=t&so...nMlOMI&usg=AFQjCNGeueCSTEJa3WajP50_qGhCjwTEIA

Notice that in the Word version the date is April 2010, but saying that CFS is not a retroviral infection after the publication is science would really be stupid, and when you look at the HTML version, you see that it's from July 2009.

So - bias? Or perhaps trying to avoid an admission of being wrong and, even innocently, misleading others? Or maybe both?

Now, not only that, but notice how she treats the possibility of a psychiatric disorder as opposed to a retroviral infection:

CFS is not [...] a retroviral infection

CFS is not [...] a recognised psychiatric disorder

So if I understand her correctly, and I think that I do, she thought that CFS is not a retroviral infection, but it is possible (doesn't matter if likely or unlikely) that it is a psychiatric disorder.

So, really, why does the CAA treat this enormous discovery - the best we have ever had in ME/CFS - in a way that is so hostile?

 

[VillageLife]

I have nothing against CAA why would any association of ME/CFS not be open to any possible cause of illness!

Also CAA have been keeping us up to date with Dr Alters paper.
Also CAA have said the CDC study was bad.
They have also had Dr Bateman (who seems very pro xmrv) on a webinar and they had the guy from virology blog on a webinar.

Maybe CAA need to have a webinar with WPI next though.

 

[Esther12]

Back then, I'd have agree with her.

It's only as I've leanrt about how crazy and varied retroviruses can be that I've come to realise they could be the cuase of almost any condition.

I've generally thought it to be a good thing for CFS organisations to stay sceptical about XMRV. It seemed that if XMRV was significant, it would almost certainly be shown to be so without need for active involvement by patient organisations; and if it were not significant, better for these organisations to have avoided getting caught up in the hype of another failed CFS theory. The way it's panned out, with the long delays and trouble over the NIH study have made me think that I could have been wrong about this.

I'm not sure.

If the NIH positive study comes out looking strong and still the WPI gets no government funding, or the commitment to studying CFS remains weak, then all these organisations nned to start being more aggressive. I'm still worried that XMRV could turn out to be nothing, and that all the hoo-hah will put us in a worse position than ever. I can still see the advantage of hanging back.

 

[omerbasket]

I have nothing against CAA why would any association of ME/CFS not be open to any possible cause of illness!

Also CAA have been keeping us up to date with Dr Alters paper.
Also CAA have said the CDC study was bad.
They have also had Dr Bateman (who seems very pro xmrv) on a webinare and they had the guy from virology blog on a webinare.

Maybe CAA need to have a webinare with WPI next though.

And what with Dr. Kerr's unreplication study being so complimented by Dr. Vernon although they didn't use any method that is known to be able to find XMRV in a clinical blood sample when it's there?
And what about their misleading message about WPI being the only organization that found false XMRV, while not mentioning that they used a new assay that was not used in the "Science" paper (and also was not used by them or VIP Dx/RED Labs ever)? Innocent mistake? Perhaps. Perhaps this "truth, but not all the truth" statement was deliberate? Perhaps they do think they have things to lose?
And what about the following quote from their Facebook page?

The CFIDS Association of America: Dr. Mikovits responded to a question about testing multiply transfused individuals and she expressed concern about the CDC study but she did not make a formal presentation, although time was available during the public comment session.

I don't remember seeing them using sarcasm against, let's say, Dr. Reeves, for example when he said that he does not understand how a prestigous journal like "Science" published WPI's paper, and that he would test HIS (empirically tested) CFS patinet samples to see if he finds XMRV, but his guess is that he won't?

And anyway, how can she say that CFS is not a retroviral infection when there is no proof that it isn't, and especially when we remember the saga regarding Elain DeFreitas study that found a retrovirus in a CFS patient?

 

[V99]

It looks to me like the CAA abandoned the search for a retroviral cause a while ago. Even if XMRV goes nowhere (which doesn't seem to be the case), this is a ridiculous position for any ME/CFS research group to take.

 

[Angela Kennedy]

I don't remember seeing them using sarcasm against, let's say, Dr. Bell, for example when he said that he does not understand how a prestigous journal like "Science" published WPI's paper, and that he would test HIS (empirically tested) CFS patinet samples to see if he finds XMRV, but his guess is that he won't?

Hi Omer,
I'm guessing you mean Bill Reeves here, not Dr Bell?

 

[omerbasket]

Ofcourse, Angela. I have corrected it now. I'm sorry for Dr. Bell - which is definitley on our side and I very very much respect him.
I guess that perhaps his first name (their first names are both William), or the fact that I wrote about the DeFreitas study, which he took part in, or the fact that Bill (William) somehwat resmebles Bell caused me to make that mistake...
Can you make a correction in your quote of mine? like adding "(that was a mistake, omerbasket meant to write Dr. Reeves)" in red or something next to the words "Dr. Bell", so that no one thinks something bad about the wonderful Dr. Bell that does not deserve this bad association?

 

[garcia]

It looks to me like the CAA abandoned the search for a retroviral cause a while ago. Even if XMRV goes nowhere (which doesn't seem to be the case), this is a ridiculous position for any ME/CFS research group to take.

At the very least it is unscientific to say disease X *isn't* caused by a retrovirus unless you have categoric proof. If Suzanne Vernon does have such proof then I for one would like to see it.

 

[caledonia]

I think you're taking that particular quote the wrong way. She's listing the state of the art of research for CFS, which was that it's not a retrovirus. This would be due to the CDC not confirming DeFreitas' study.

The XMRV info was not yet published, so she's not talking about XMRV. The HTML version has a date of 7/17/2009.

 

[dannybex]

This is a year old...

Vernon's conclusions were from over a year ago -- 07/16/2009.

The other date, in the upper right hand corner automatically changes as each day passes -- it doesn't reflect an actual update of her conclusions.

At least that's my interpretation. The one I just opened has a faint (grey) date of 8/4/2010 in the upper right hand corner, yet the original is dated 7/16/09.

d.

 

[V99]

It doesn't matter when the conclusions were written. As Garcia said:

If Suzanne Vernon does have such proof then I for one would like to see it.

 

[omerbasket]

I think you're taking that particular quote the wrong way. She's listing the state of the art of research for CFS, which was that it's not a retrovirus. This would be due to the CDC not confirming DeFreitas' study.

The XMRV info was not yet published, so she's not talking about XMRV. The HTML version has a date of 7/17/2009.

That would be rediculous. That is because of two reasons:
1) We know how the CDC's studies regarding ME/CFS, especially under the administration of Dr. Reeves, are worth. And they didn't even replicate her study!
2) It's not only that not proving that one virus causes ME/CFS doesn't prove that it does not causes ME/CFS, especially when you do not replicate the study that did found the association (how funny, does someone see resemblesness to what's happenning today?); It's also that even if you prove that one retrovirus does not cause ME/CFS, it says nothing, nadda, about the possibility that other retroviruses do cause ME/CFS. Especially since a retrovirus can explain every single symptom of ME/CFS. And anyway, let's say that in the 17th century I would have proven that tuberculosis is not caused by streptoccocus. Would that say that it is not caused by a bacteria? It would just say that it is not caused by streptoccocus. And in the ME/CFS case, they didn't even prove that the Defrietas study got it wrong.

 

[omerbasket]

Vernon's conclusions were from over a year ago -- 07/16/2009.

The other date, in the upper right hand corner automatically changes as each day passes -- it doesn't reflect an actual update of her conclusions.

At least that's my interpretation. The one I just opened has a faint (grey) date of 8/4/2010 in the upper right hand corner, yet the original is dated 7/16/09.

d.

I made a mistake in my first message here. I did mean to write "July 2009", as I've written before on the same message, but mistakingly I wrote "July 2010". I've now corrected it. Thanks for noticing it and notifying me! I want to make it clear: This article must have been written in 2009 and before the publication of the "Science" paper.
Still, that doesn't change anything else of what I've written, since I knew this and meant to say that it was in 2009 (as I also said that it would be stupid to say such a thing in 2010, and the CAA are not stupid).

 

[dannybex]

It doesn't matter when the conclusions were written.

I disagree -- she said "the outcomes of pathophysiological research have generally featured delineation of what CFS is not" -- and there was no XMRV/CFS connection at that time. Omerbasket is correct -- the CAA are not stupid.

 

[V99]

How can previous research have shown that CFS is not caused by a retrovirus? They don't know what is out there. XMRV is irrelevant to this point.

 

[omerbasket]

I disagree -- she said "the outcomes of pathophysiological research have generally featured delineation of what CFS is not" -- and there was no XMRV/CFS connection at that time. Omerbasket is correct -- the CAA are not stupid.

How can studies that didn't prove anything "generally feature delineation of what CFS is not"?

 

[garcia]

How can previous research have shown that CFS is not caused by a retrovirus? They don't know what is out there. XMRV is irrelevant to this point.

You can't V. It is a logical absurdity to have "shown that CFS is not caused by a retrovirus".

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[dannybex]

How can previous research have shown that CFS is not caused by a retrovirus? They don't know what is out there.

Of course they don't know what's out there...and still don't. CFS/ME can have many, many causes, and probably does, but I'm taking this to mean that she was saying research up to that date suggested that it is/was not caused by a retrovirus.

 

[V99]

But there is no research that does say that. It couldn't possibly say that.