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

[CBS]

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.

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

I'm done with the CAA. They are incompetant. They have proven that to anybody but their most loyal fanatics.


At the end of the day, WPI believed in retroviruses. They hired Mikovits because she had a history of working with retroviruses.

The CAA has been consistently betting on the wrong horse. Deal with it and get over it as far as I'm concerned.

I'm not wasting my time helping them or dealing with any more of the nonsense coming from their campaign.

I'm not Alter's Boss. Even his boss though doesn't get to interfere with his research... this is the reason why universities establish tenure systems and the peer review process is supposed to eliminate this kind of interference.

Judderwocky,

You don't have to support them and I'm surely not going to push you to like them.

Dismissing anyone who stands up for the CAA as an apologist is a rhetorical trick.

What we have are two schools of thought. One feels that the CAA does more harm than good while the other disagrees and feels that attacks on the CAA are harming all of us.

The folks that are attacking the CAA tend to defend the WPI. In my opinion, beyond the original Science article (which was no small thing), the actions of some at the WPI have been harmful. The WPI has "bet the farm" on XMRV and if it doesn't work out, I feel that the way the WPI has acted will be viewed as having done real harm to the CFS community.

I don't feel the need to attack the WPI. Nor will I refuse to give credit where credit is due.

And yeah, I really wouldn't want to defend having compared Reeves and the CDC to Vernon and the Biobank.

Reeves = destructive
Earth Bound Pets - http://eternal-earthbound-pets.com/ = benign
Boibank = in my book, clearly makes up for a number of missteps

Now I need to go make sure my dog will always have someone to look after her!

 

[judderwocky]

Judderwocky,

You don't have to support them and I'm surely not going to push you to like them.

Dismissing anyone who stands up for the CAA as an apologist is a rhetorical trick.

What we have are two schools of thought. One feels that the CAA does more harm than good while the other disagrees and feels that attacks on the CAA are harming all of us.

The folks that are attacking the CAA tend to defend the WPI. In my opinion, beyond the original Science article (which was no small thing), the actions of some at the WPI have been harmful. The WPI has "bet the farm" on XMRV and if it doesn't work out, I feel that the way the WPI has acted will be viewed as having done real harm to the CFS community.

I don't feel the need to attack the WPI. Nor will I refuse to give credit where credit is due.

And yeah, I really wouldn't want to defend having compared Reeves and the CDC to Vernon and the Biobank.

Reeves = destructive
Earth Bound Pets - http://eternal-earthbound-pets.com/ = benign
Boibank = in my book, clearly makes up for a number of missteps

Now I need to go make sure my dog will always have someone to look after her!

That wasn't a comparison actually. Your inability to distinguish the two is irritating. Someone made the point that they had done a lot to help us and I simply pointed out that if you use that as justification for supporting a cause, then you would have to also count Reeves as a supporter because he would make the same claim. Claiming that a group is an advocate simply because a portion of their intentions/efforts seem to align with your own position, does not alter the presence of other conflicting actions. I was actually pointing out a flaw in someone else's logic. But way to miss the point. People keep making the point that they have done X or Y , to omit or negate their mistakes on Z. Z remains.
You are using tricks.

I still don't care.

 

[CBS]

That wasn't a comparison actually. Your inability to distinguish the two is irritating. Someone made the point that they had done a lot to help us and I simply pointed out that if you use that as justification for supporting a cause, then you would have to also count Reeves as a supporter because he would make the same claim. Claiming that a group is an advocate simply because a portion of their intentions/efforts seem to align with your own position, does not alter the presence of other conflicting actions. I was actually pointing out a flaw in someone else's logic. But way to miss the point.

You are using tricks.

I still don't care.

I'm using tricks? You threw the CDC and reeves into the same sentence as the CAA and said that claiming to have benefited the CFS community didn't mean anything. It's called defamation by association and it wasn't defensible. A person's or organization's body of work ought to be judged on the whole and in my book, using that metric makes the CAA an advocacy org (albeit far from perfect) and it makes the CDC responsible for decades of suffering.

 

[judderwocky]

I'm using tricks? You threw the CDC and reeves into the same sentence as the CAA and said that claiming to have benefited the CFS community didn't mean anything. It's called defamation by association and it wasn't defensible. A person's or organization's body of work ought to be judged on the whole and in my book, using that metric makes the CAA an advocacy org (albeit far from perfect) and it makes the CDC responsible for decades of suffering.

Even if the CDC has overlooked the disease, they did not start it. Unless you want to go down SUPER conspirarcy road. Like I said, using one set of behaviors or actions to mitigate others does not make sense in my book - just doesn't work for me. I don't like the CAA. Its that simple. I'm glad it does work for you

 

[V99]

Reeve's CDC efforts versus the Biobank? I wouldn't want to try and defend having drawn that parallel.

If you decide that a retrovirus is not the cause of this disease, and it is, then you are wasting the time and money that would go into a biobank? That's not to say other abnormalities can be teased out, but if a retrovirus is the cause, then you will miss it. It doesn't matter that we have XMRV now. If it suddenly disappeared tomorrow, will Vernon continue to believe that retroviral research is not worthwhile? What if it's a different retrovirus. After all the most obvious cause for this disease is a virus. This is not to say that Vernon is the enemy.

John Leslie, sounds like you have some interesting emails. I suspect they will be items of historical importance in the future, you know, when we teach others to never do this again.

 

[CBS]

If you decide that a retrovirus is not the cause of this disease, and it is, then you are wasting the time and money that would go into a biobank? That's not to say other abnormalities can be teased out, but if a retrovirus is the cause, then you will miss it. It doesn't matter that we have XMRV now. If it suddenly disappeared tomorrow, will Vernon continue to believe that retroviral research is not worthwhile? What if it's a different retrovirus. After all the most obvious cause for this disease is a virus. This is not to say that Vernon is the enemy.

So you know that at present Dr. Vernon feels that retroviral research is not worthwhile?

 

[V99]

So you know that at present Dr. Vernon feels that retroviral research is not worthwhile?

Why has she changed her stance since she wrote the report?

Again, if the cause is a retrovirus, how would the CAA find it, if they choose not to look?

One feels that the CAA does more harm than good while the other disagrees and feels that attacks on the CAA are harming all of us.

I think there a lots of different opinions, not just two sides. Some will also think that the CAA is harming all of us. It's not as simple as you make out, and reminds me of statements I have read in the Gibson report.

 

[CBS]

I think there a lots of different opinions, not just two sides. Some will also think that the CAA is harming all of us. It's not as simple as you make out, and reminds me of statements I have read in the Gibson report.

Ok, three or maybe even ten (or eleven) different views on this but acknowledging that there are numerous valid perspectives is really that simple. As for Dr. Vernon's opinion on retroviruses, I think the CAA's actions speak for themselves. Wasn't there a webinar just the other day on XMRV and isn't there another coming up on XMRV and blood safety on 8/12 (I seriously doubt that they put those together just to appease us).

 

[V99]

No, XMRV doesn't count. The point is, they were not looking.

 

[CBS]

No, XMRV doesn't count. The point is, they were not looking.

So everything else the CAA is looking at doesn't count either? Care to discuss their support of the need for carefully defined cohorts? The work with the Lights on gene expression? Ventricular lactic acid?

Just say you're not happy with their gaffs on advocacy issues and that no matter how worthwhile their research efforts, you'll never forgive them. Then you won't have to presume to know what their present views are on retroviruses and you won't need to keep changing the standard.

 

[V99]

Getting a bit off topic.


Pretend XMRV does not exist. The CAA would not be looking for a retrovirus, not then, not in the future, because Vernon says it is not a retrovirus that causes ME.

That is clearly a ridiculous approach to take.

 

[CBS]

Getting a bit off topic.


Pretend XMRV does not exist. The CAA would not be looking for a retrovirus, not then, not in the future, because Vernon says it is not a retrovirus that causes ME.

That is clearly a ridiculous approach to take.

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.

because Vernon says it is not a retrovirus that causes ME

 

[V99]

Still getting off topic.

If XMRV was disproven tomorrow will Vernon go with her idea that there is no retroviral cause for ME? When a virus is the most likely cause of the disease.

 

[CBS]

Still getting off topic.

If XMRV was disproven tomorrow will Vernon go with her idea that there is no retroviral cause for ME? When a virus is the most likely cause of the disease.

I suspect she'd be honest and say she doesn't know the cause. Why do we even bother with the research? This has taken on the flavor of an article of faith, not science.

 

[V99]

I get the impression your computer has a different language setting to mine.

 

[Andrew]

I don't recall whose sig line it is, but I think it sums up the CAA. They do things that help us and things that hurt us. I've seen the second part in action when we had to hound them to remove harmful information based on bogus studies. The first reason they gave for not removing it was they could not because of an agreement with the CDC. This confirmed what I had previously thought was just a rumor about them.

Anyway, I'm not an anti-CAA hardliner, but I think their actions speak for themselves. They help us and hurt us. Many of use would prefer they just help us.

 

[CBS]

Anyway, I'm not an anti-CAA hardliner, but I think their actions speak for themselves. They help us and hurt us. Many of use would prefer they just help us.

I think it would be fair to say that all of us would prefer they just help us. I also would prefer that the WPI would only help us.

 

[justinreilly]

(or did they put those together just to appease you).

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

 

[John Leslie]

I think it would be fair to say that all of us would prefer they just help us. I also would prefer that the WPI would only help us.

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

 

[CBS]

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

Justin,

You've probably read this with the accent on the word "you" when I actually wrote it with the a soft accent on the word appease. Sorry that wasn't more clearly state in the original.