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

[Cort]

This is what she said

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.

The outcomes of pathophysiological research - she is referring to the outcomes of prior research - do you get what I'm saying?

Now, regarding "that was well before XMRV"... Well, that was in July 2009... The "Science" study was published just three months afterwards, and was in press three months before (in April 2009). I don't know if she knew about it - but I think it's a very reasonable option that she did know about it. Again, I don't know, but I don't dismiss that possibility. I even uploaded links on this thread that shows that Dr. Mikovits, in an interview in April 2009, implemented that they found the specific viruses that are related to ME/CFS.

You have a point here - she may have (or she may have not). I would note that Dr. Mikovits had an opportunity to inform the major players of the CFS research community of XMRV at the Banbury Conference but chose not to do that.

When you take that, and take people that are real scientists, such as Dr. Bell and Dr. DeFreitas, who says that a retrovirus might be the cause of ME/CFS and that anyway it really fits, you have no reason whatsoever to say that it isn't the cause.

Dr. Bell is not a scientist or researcher - he's a physician. Dr. DeFreitas career, unfortunately has been over a long time. Dr. Vernon will have all sorts of references in her overview as will any researcher.

Now, not only that Vernon has no evidence of ME/CFS not-being-caused by a retrovirus - and we did have, even in July 2009, evidence that it is caused by a retrovirus - by stating it is not caused by a retrovirus she also disregards that there are many many studies connecting XMRV to viruses. A retrovirus is a virus, and if it can be HHV-6, EBV, CMV, enteroviruses etc., why can't it be a retrovirus?

You're collapsing the difference between the idea that CFS could be caused by a retrovirus and evidence that it is caused by a retrovirus and again you're ignoring the fact that Dr. Vernon was talking about the research evidence to date. I think you're also making a mountain out of a molehill. There was no published evidence at that point that CFS or fibromyalgia or I imagine autism was caused by a retrovirus. If you think that's untrue then please show me where in the scientific literature there's the hint that that was so. I honestly don't why you are ignoring the fact she was talking about the scientific literature "ie the outcomes of pathophysiological research to date". No one who looked at the scientific literature could argue otherwise. Do you disagree with that?

What's important is what the CAA did after evidence was published that a retrovirus might be causing CFS and what they did was put together a good study to see if that was true. If you're wondering what DR. Vernon's thoughts now about XMRV are I suggest that you consider that fact.

 

[Cort]

"By the way Annette Peterson recently stated that the big pathogen arrays the WPI has been using found evidence of each pathogen ( HHV-6 a, HHV-6 B, HHV-7, EBV, CMV) in no more than 10% of CFS patients." That means that you have a wide variety of pathogens, each of which occurs in a fairly small subset of CFS patients. The pathogen arrays did not pick up evidence of any other pathogens consistently.

Cort, could you please provide a link to this statement. Thank you

That was in an email and I hope I characterized it correctly because I was strangely worded but that is what I understood it to say. The jist of it was that everything else is an opportunistic infection and XMRV is the major player.

 

[V99]

The outcomes of pathophysiological research - she is referring to the outcomes of prior research - do you get what I'm saying?

Prior research would still not come to that conclusion, because it could not. It does not matter that she was talking about research to date. What matters is if the CAA were looking, are looking, and will be looking for the obvious cause of the disease.

You have a point here - she may have (or she may have not). I would note that Dr. Mikovits had an opportunity to inform the major players of the CFS research community of XMRV at the Banbury Conference but chose not to do that.

I don't think you would, if you paper was going to be published in Science magazine.

 

[Cort]

Here's an interesting quote. Obviously, something changed after this.

http://www.me-cvs.nl/index.php?pageid=3024&printlink=true&highlight=lyme

Alot did. None of the research panned out. They continued to fund Grossman or whatever his name was for several years; he, too, thought he had found a retrovirus. Dr. Martin blew up in their face and Dr. DeFreitas didn't work out. They funded De Freitas for three years! They funded Grossman or whatever his name was for even longer. The CFIDS Association has probably easily funded more retroviral research than anyone else to date. .

They worked really hard at it and nothing turned up.L Were they wary after allocating their entire research budget for several years to something that tanked? I imagine they were. Its an expensive arena that often takes years to come to a conclusion on. (Did you see the quote by the researcher who took four years to figure out that his retrovirus wasn't one)

They don't create research projects either; people submit grants - its also possible that there were no retroviral grants submitted. There has been one study on retroviruses in CFS over the past 15 years I believe and I don't think it was published....it was negative.

 

[judderwocky]

It seems clear to me that regardless of their stance now, if it hadn't been for the WPI, the CAA wouldn't be looking at retroviruses and it seems like there was at least enough evidence to warrant more investigations,

angela, you are not reading my comments very carefully or you simply want to resort to victim tactics. Either way diabetes IS a manageable condition, and its a poor comparison to CFS.

The fact is many people could prevent their diabetes. As I pointed out I am aware that is not the case for all, but even in those cases where it was not their choice its still more manageable than CFS.

I volunteered over a hundred hours in a diabetes clinic. I worked with both nutritionists and nurses. I listened to a lot of healthcare workers talk about this. For some people diabetes is a choice. For others its not.

CFS was not a choice for anybody.

 

[Cort]

Prior research would still not come to that conclusion, because it could not. It does not matter that she was talking about research to date. What matters is if the CAA were looking, are looking, and will be looking for the obvious cause of the disease.

I don't think you would, if you paper was going to be published in Science magazine.

.Maybe you should look at the research and decide whether Dr. Vernon was correct. You'll have to decide for yourself what the obvious cause of CFS is as will everybody else. I've presented evidence that its not so easy as you seem to think...I guess you feel that that is incorrect.

You've followed XMRV as much as anybody......You know very well the study results are often released in conferences prior to publication. Add that to the fact that the Banbury 'Conference' was a closed conference open to invited CFS researchers only (no public allowed) and you realize that could not have been the reason Dr. Mikovits did not attend the Banbury Conference. The fundraising event for the WPI was that weekend but she could have still attended a day and briefed everyone). I think she missed an excellent opportunity to (over three days) get CFS research community engaged early on in the most potentially important research discovery to date in CFS and I hope she will be at the next one. I believe Dr. Singh is scheduled to appear.

 

[Cort]

It seems clear to me that regardless of their stance now, if it hadn't been for the WPI, the CAA wouldn't be looking at retroviruses
.

That is absolutely true.

Do you hear of anyone, though, that is looking for retroviruses other than XMRV in CFS? There doesn't appear to be. Why? Because there is not enough evidence that they are present to spend the money.

Remember the WPI did their big pathogen arrays. They started doing that several years ago. They found no evidence of retroviruses in CFS Not even XMRV - which was odd because XMRV was first captured in a pathogen array. It does suggest that the arrays are not always effective...but still, if you don't have evidence of a retrovirus in an array that usually works why would you spend alot of money plowing through patients blood looking for them. You wouldn't.

Put it another way...if XMRV had not shown up in patients with RNase L problems...the WPI would have never looked for it again. They'd already decided that retroviruses do not play a role in CFS. That's what their evidence showed.

 

[V99]

.Maybe you should look at the research and decide whether Dr. Vernon was correct. You'll have to decide for yourself what the obvious cause of CFS is as will everybody else. I've presented evidence that its not so easy as you seem to think...I guess you feel that that is incorrect.

You've followed XMRV as much as anybody......You know very well the study results are often released in conferences prior to publication. Add that to the fact that the Banbury 'Conference' was a closed conference open to invited CFS researchers only (no public allowed) and you realize that could not have been the reason Dr. Mikovits did not attend the Banbury Conference. The fundraising event for the WPI was that weekend but she could have still attended a day and briefed everyone). I think she missed an excellent opportunity to (over three days) get CFS research community engaged early on in the most potentially important research discovery to date in CFS and I hope she will be at the next one. I believe Dr. Singh is scheduled to appear.

The XMRV study was not some small, run of the mill thing. It is more likely that she chose to keep the information secret while they checked that the results. After all CFS is not one of those diseases where biological science is readily accepted.

As for Vernon, she is definitely wrong.

 

[Sam Carter]

... What matters is if the CAA were looking, are looking, and will be looking for the obvious cause of the disease....

I don't think one can say that there is an obvious cause of ME.

There are a number of possible candidates and insufficient evidence so far to support any one of them.

 

[V99]

No, I said looking for what is obvious. Viruses, retroviruses, entroviruses, they are the obvious choice.

Cort
They started doing that several years ago. They found no evidence of retroviruses in CFS Not even XMRV - which was odd because XMRV was first captured in a pathogen array.

That is why you have to keep looking, not just some quick and dirty study. A virus or retrovirus is the obvious cause for ME, but if you look at the wrong one then you will get negative results. It doesn't stop it from being the cause.

 

[Sam Carter]

No, I said looking for what is obvious. Viruses, retroviruses, entroviruses, they are the obvious choice.....

Researchers have been looking for viruses in ME for decades without consistent findings. The cause of the disease is, I would argue, very far from being obvious.

 

[Cort]

No, I said looking for what is obvious. Viruses, retroviruses, entroviruses, they are the obvious choice.



That is why you have to keep looking, not just some quick and dirty study. A virus or retrovirus is the obvious cause for ME, but if you look at the wrong one then you will get negative results. It doesn't stop it from being the cause.

You realize you just accused the WPI of doing a quick and dirty study...

(Since this statement really ruffled some feathers let me clearly point out that yes, while it was a bit a stab at V99 from me - it was done tongue in cheek (hence the smiley) and was never meant to imply that she actually felt the WPI did quick and dirty studies. It was a joke, a poor received one for sure, on my part)

Yes but!..... the CAA is funding a study on endogenous retroviruses and EBV and microbial bacteria....and has funded HHV6.....and is doing the XMRV study but no matter (it was the CAA..... Isn't this kind of crazy - the CAA has, aside from the WPI, funded more work on viruses in the past few years than ANYONE....and you think they're not looking the cause as you put it?

 

[Cort]

The XMRV study was not some small, run of the mill thing. It is more likely that she chose to keep the information secret while they checked that the results. After all CFS is not one of those diseases where biological science is readily accepted.

As for Vernon, she is definitely wrong.

PLEASE....... I think the CFS researchers would have accepted her biological evidence.

Here's as far as I'll go with you with that one sentence from Dr. Vernon that has troubled you so much - it would better for me if she had said "the evidence to date does not suggest retroviruses are causing CFS" She could also have said little research has been done for 10 years or so.

I think you should look at the research program Dr. Vernon has put together and the XMRV study she undoubtedly played a key role in getting together and decide based on that whether she deserves your support.

 

[V99]

You realize you just accused the WPI of doing a quick and dirty study...

No, I did not.

Moderator: Just reduced font size. No need to shout.

 

[Cloud]

That was in an email and I hope I characterized it correctly because I was strangely worded but that is what I understood it to say. The jist of it was that everything else is an opportunistic infection and XMRV is the major player.

Ok, thanks Cort....I was just really surprised that they had not found more than 10% prevalence of any of the known co-infections. I thought the % was much higher. I also remember something (sorry, don't remember where) about them finding Bb (or maybe it was Babesia) to be the most common co-infection at a much higher percentage of around 30%. But I think that was referring to xmrv co-infections.

 

[V99]

Scientist's, as I said, should be looking at the the obvious choices. Those that the biology of the disease point to. The idea that there are no clues, is merely propaganda. Just because science has not the ability to look for them, does not make them any less likely to be the cause. The CAA should have been checking the moment XMRV was discovered. They should have been checking for retroviruses full stop. Vernon clearly gave up on the search, out of a naivety. Whether the CAA would gain my trust would depend on how they acted, and are acting. If they were not looking before, why would I magically think they would look in the future, if XMRV research vanished tomorrow? You cannot ignore that particular set of viruses.

Perhaps the WPI wanted to keep it a secret at that point. There are millions of reasons why they might choose to do that.

 

[bakercape]

I suggest

Researchers have been looking for viruses in ME for decades without consistent findings. The cause of the disease is, I would argue, very far from being obvious.

I suggest You read Oslers Web then reassess your thinking Sam. You don't catch a genetic disorder or a multisystem immune problem. All those people in Tahoe caught something and it spread. The people in Lyndonville caught something and it spread. That alone is enough evidence to look for a contagion in those CFS patients and not quit. My family caught something all at once. Then My family that visited me caught CFS latter also. Were not all blood relatives either. We gave CFS to each other or whater causes CFS. Thisis why I have never given blood in 22 years.
The obvious choice for something contagious that causes immune problems in my mind as a layperson is a virus. No one should ever have quit looking for a virus/ infectious agent in my mind.

 

[Sam Carter]

I suggest You read Oslers Web then reassess your thinking Sam. You don't catch a genetic disorder or a multisystem immune problem. All those people in Tahoe caught something and it spread. The people in Lyndonville caught something and it spread. That alone is enough evidence to look for a contagion in those CFS patients and not quit. My family caught something all at once. Then My family that visited me caught CFS latter also. Were not all blood relatives either. We gave CFS to each other or whater causes CFS. Thisis why I have never given blood in 22 years.
The obvious choice for something contagious that causes immune problems in my mind as a layperson is a virus. No one should ever have quit looking for a virus/ infectious agent in my mind.

I agree with you, although I haven't seen evidence so far that shows all people with ME were made ill by the same pathogen.

I'm sorry, btw, to hear your family is so badly affected.

 

[V99]

If everyone stops looking and the pathogen is a retrovirus then you won't have evidence. That's why XMRV research has to be continued. The numbers are so good. It also would explain the reactivating viruses that so many of us have.

 

[blacksnake]

Elegance

If everyone stops looking and the pathogen is a retrovirus then you won't have evidence. That's why XMRV research has to be continued. The numbers are so good. It also would explain the reactivating viruses that so many of us have.

That's the interesting part of it:- elegance. One cause that has the potential to explain so much.

While on that subject I've noticed how many times I see the statement "CFS is a probably several diseases, it is so heterogeneous". This is starting to get up my nose severely. The remarkable thing about ME/CFS is not the divergence but the astounding similarity in clinical symptoms and disease development. I think in future I'm going to tackle comments like that.