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

[CBS]

What has the WPI done to deserve your snarl? If you are mad at someone else why bring in the WPI?

John,

I was under the impression that we were comparing advocacy orgs and earlier in the thread comparisons had been made to the CAA and other groups. Additionally, the CAA had been criticized for not being more like the WPI when it came to XMRV and so I thought it appropriate to compare the CAA to The Best Advocacy Org ever, the WPI. Personally, Even the WPI has had a few moment where I found myself cringing and begging them to please stop trying to help. That's all.

ETA: There is one other issue I have with the WPI. It has to do with the fall out from having created wildly optimistic and unreasonably high expectations which are inevitably followed by the failure to realize those expectations (if only on the original time line) and then those most likely to have believed the false promises needing to scapegoat someone or some organization.

 

[caledonia]

In general, I think the CAA is rather conservative and reactive, not proactive. I also think they haven't fully embraced the potential of the internet. It's like they're stuck back in 1995 or something.

 

[taniaaust1]

If XMRV did not exist, no one in the world would be looking for a retrovirus and the WPI would have gone broke. Now try and entertain the possibility that XMRV isn't causative or that you're not XMRV positive. Would you really be all that excited about the way that the WPI bet the farm and the public perception of all CFS patients on XMRV? And would you really dismiss the CAA's research efforts so blithely?

And you're still using this out of the present context with no knowledge of where future research might lead.

I dont think the WPI has done that at all.. They've said ALL ALONG that XMRV may not be causative for CFS... and it possibly may be just a carrier virus.

I dont understand why people keep putting a misconception out there that they've said it is the actual cause of CFS when they have not said that.

 

[V99]

I think there has been an effort to spread that particular piece of misinformation, so that if XMRV fails, the patients will already have it in their minds 'where is the scapegoat'. That way our enemies would be able to get rid of an organisation who are looking for the cause of ME. Well I'm not like that, and i think a lot of people aren't either. I don't hit out when forward thinking research goes wrong.

The weakest ME research organisation are those that have decided certain research will be a dead end.

 

[garcia]

I have detected sarcasm directed against a forum member, alert! alert! four alarm violation! Where's Martlett? : )

LMAO ROFL!!! :Retro wink::Retro smile::Retro tongue::tear:

 

[thegodofpleasure]

A damning indictment of subtly camouflaged bias.

In general, I think the CAA is rather conservative and reactive, not proactive. I also think they haven't fully embraced the potential of the internet. It's like they're stuck back in 1995 or something.

I totally agree with you Caledonia.

There is no doubt that Dr. Vernon is a clever and astute person, who's statements (for the most part) are well balanced, well intentioned and helpful.
However, over the course of time, just like Omerbasket & others, I too have observed an unhelpful bias (against viral research) at the CAA. (whilst they did do a webinar on XMRV, I wasn't overly impressed by it)
Dr. Vernon is too clever to be overt in displaying such bias, but I think that it ultimately shows through in the CAA's actions (or lack of them) and whom they support (or not whole heartedly).

This is especially important now, when I believe we are at a tipping point and strong advocacy can really make a real difference to strengthening the case for more funding of retroviral research.

Whilst we (the patient community) have become very good at waiting, surely every additional day, unnecessarily wasted, is a damning indictment of those who have failed to vigorousy pursue the obvious, especially when it's laid out right there in front of them.

TGOP

 

[V99]

Sort of leading on from what TGOP said, right now we are getting lots of publicity about this disease. The publicity however is all about XMRV (that's not a bad thing) It is the perfect time for all ME/CFS organisations to promote this disease. You can support further research into XMRV and educate the public about the truth of this disease. So where is that publicity?

 

[Cort]

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.

I suggest you look at the research over the years before singling the CAA out and read Dr. Vernon's quote a little more carefully - it summed up the research findings to date. Are you suggesting that the physiological research showed something else? Not on the CDC but the Gow Group, a Japanese group, a major pharmaceutical firm, a lab in Texas and even Dr. DeFreitas, herself, was unable to replicate the results of her study. The CDC then looked at CFS patient's blood for all types of retroviruses and found none.

The CAA, however, continued funding Dr. Grossman (I think his name was) for several years in his search for a retrovirus in CFS.

Around 2000 the National CFIDS Association looked for evidence of a HTLV-like virus in CFS patients and failed to find any. Aside from that there have been zero studies that I know of from any of the hundreds of CFS researchers for the past 15 years.

Whatever your thoughts about the CFIDS Association it's unfair to single them out in this regard. Nobody was looking for retroviruses in CFS until the XMRV was found in RNase L deficient patients with prostate cancer.

As I pointed out before CFIDS Association has funded a great deal of research into viruses effects in CFS - more than any other organization (EBV, HHV-6, HERV's, retroviruses). Again you choose to ignore the fact that the CFIDS Association is one of only two patient associations this actually putting money into XMRV research at this point. I would think that would
some recognition that this organization is interested in retroviruses (as well as other pathogens and other causes of CFS).

 

[V99]

Defreitas's research and XMRV are irrelevant to this point. No research could ever show that a retrovirus is not responsible for ME. The idea that science knows everything there is to know about retroviruses or anything is totally absurd. It is the fact, that the CAA gave up looking which is important. I would say the same about any organisation that would take such a naive approach to the biology of ME. They should have been looking. Will they be looking in the future if XMRV goes no where?

 

[Cort]

I am so sick of listening to CAA apologetics. If you want to nervously run through every single statement everybody on this board has made and divert more time. So be it. It seems pretty clear to me where they stand.

Letting a pharm company hunt through tissue samples is hardly sponsoring a study.

????? How about gathering a cohort of WPI like patients, drawing fresh blood from them and then having one of the biggest Pharmaceutical companies in the world - which has a huge incentive to find the bug - do their best to find XMRV is a pretty darn good study. What else do you want, really? How can you not be happy with this study?

 

[V99]

The issue is that they were not looking, and will they be looking in the future if XMRV goes no where?

Any new virus or retrovirus should be immediately checked to see if is not the cause. When XMRV was first discovered in 2006 every ME/CFS research group in the world, that had the means, should have been looking to see if there was a connection. It doesn't take a genius to work that out. How ridiculous it would be to miss a discovery because a link has not been found to be there with other viruses.

 

[Cort]

Defreitas's research and XMRV are irrelevant to this point. No research could ever show that a retrovirus is not responsible for ME. The idea that science knows everything there is to know about retroviruses or anything is totally absurd. It is the fact, that the CAA gave up looking which is important. I would say the same about any organisation that would take such a naive approach to the biology of ME. They should have been looking. Will they be looking in the future if XMRV goes no where?

Do you have any evidence that anybody else in the CFS research world was looking specifically at retroviruses before the XMRV discovery? (Was everybody else naive as well?)

Do you have any evidence that the CFIDS Association gave up possibility that retroviruses could be at play here? You have a statement from Dr. Vernon stating that the research had not shown at that point that retroviruses are responsible for CFS. The CFIDS Association is still funding, I believe, studies on human endogenous retroviruses. If they are willing to fund studies on human endogenous retroviruses (or even viruses like EBV and HHV6) why would they be reluctant to fund studies on retroviruses?

You're suggesting that the CAA would be willing to examine the possibility that endogenous retroviruses, viruses and bacteria (which they are now doing) are causing CFS but not retroviruses. That just doesn't make sense to me. Please tell me how they are interested in research on every other kind of pathogen but not this type of pathogen?

 

[V99]

Any one else who was looking, would of course not be of interest to this discussion. After all, they are looking.

I have no idea why the CAA would not be looking at retroviruses, except from Vernon's statement:

CFS is not [...] a retroviral infection

It is for them to show us where their retroviral research is.

 

[Cort]

I totally agree with you Caledonia.

There is no doubt that Dr. Vernon is a clever and astute person, who's statements (for the most part) are well balanced, well intentioned and helpful.
However, over the course of time, just like Omerbasket & others, I too have observed an unhelpful bias (against viral research) at the CAA. (whilst they did do a webinar on XMRV, I wasn't overly impressed by it)
:

I would agree that the WPI is more focused on pathogens than anyone and that CAA has focused on multi-systemic studies in their last round of grants - although one is looking at pathogens in the gut - but the prior round was mostly viral with two studies focusing on endogenous retroviruses and Epstein-Barr virus. That means that somewhere around a quarter of the studies funded by the CFIDS Association over the past five or six years have focused on pathogens. That hardly seems like a bias against viruses or pathogens.

 

[Cort]

Any one else who was looking, would of course not be of interest to this discussion. After all, they are looking.

I have no idea why the CAA would not be looking at retroviruses, except from Vernon's statement:

It is for them to show us where their retroviral research is.

I just gave you a number of facts and reasons why I believe your statements are incorrect and you provided me an out of context, shredded statement - that I felt I had covered. So have your opinion - I don't think it holds water - and you haven't given me any evidence that it holds water but I will let it be and move on to something else.

 

[V99]

I have no opinion, except that retroviruses should be looked at. If the CAA felt that they were not worth looking at, they would do no studies into retroviruses. They stopped looking until XMRV came around. I have simply asked the question will they do that in the future if XMRV is shown to have no relevance? They should have jumped all over XMRV when it was discovered in 2006, they should have been checking. The same goes for the MEA, ME Research UK, CDC, MRC, AFME.

 

[CBS]

Defreitas's research and XMRV are irrelevant to this point. No research could ever show that a retrovirus is not responsible for ME. The idea that science knows everything there is to know about retroviruses or anything is totally absurd.

There is no rational response to this. It borders on religious fanaticism that cannot be reasoned with. You've summed up your unwillingness to have a rational conversation quite nicely.

 

[V99]

religious fanaticism

Where?

 

[V99]

If you think the world is flat, and you do nothing to find out, you are not going to stumble on the correct answer.

 

[urbantravels]

Just to clarify a point: exogenous retroviruses are the infectious kind that are most often associated with disease. Endogenous retroviruses are the kind that have already been incorporated into the genome, most of which we live with without ever knowing about them (they are "silent", having become part of the extra stuff in our genome that just sits there without doing anything in particular), but a few are associated with disease.

This link is helpful, although it is not up-to-date enough to mention XMRV (it dates from 1996). The list of known exogenous retroviruses in humans is very short (so far) but there are a number of exogenous retroviruses known to exist in animals.

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=mmed&part=A3287