Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

[V99]

He'll be back. Probably doing something

 

[Recovery Soon]

He was not in my opinion suggesting at all that we are foolish, nor was he talking down to us as some have said. He ate some crow and explained his viewpoint. And seemed open to hearing from others.

That could not have been easy to do. Telling someone you are not a fool who has not called you one, kind of makes you sound like one.

If that's insulting to anyone, it's just my culture, style, background, and writing ability talking. Please don't take offense.

 

[V99]

Then why does he bother explaining that causation has not be proven? I could be a dog and know that one.

That could not have been easy to do. Telling someone you are not a fool who has not called you one, kind of makes you sound like one.

Are we in a playground now?

If you remove all the obvious stuff from his post, what is his argument? or should I say, what is he trying to say?

 

[Recovery Soon]

Then why does he bother explaining that causation has not be proven?
Are we in a playground now?

1) Some people mistakenly believe that this correlation is the cause. Maybe you don't, but some do.
2) I don't know- Are we?

 

[V99]

But the majority do not. They are waiting for the science. So why speak as if we are all the same. (This is a myth perpetuated by psych lobby by the way, when the reality is that we reflect general society)

Alan is not our enemy, but I don't understand what else he is trying to say. I get the impression he thinks we are prejudiced about mental health problems. Yet, how can we be if we do not operate as one, and have personally experienced that same prejudice from those that claim we are prejudice about mental health problems. We know this reaction is based on ignorance and bigotry. We would not repeat it. The reason that so many patients support the none-psychiatric cause of the disease is because the science points to one, it always has, and doctors have always supported this. The psych theory is new, and based on ?????

 

[Recovery Soon]

But the majority do not. They are waiting for the science. So why speak as if we are all the same. (This is a myth perpetuated by psych lobby by the way, when the reality is that we reflect general society)

Alan is not our enemy, but I don't understand what else he is trying to say. I get the impression he thinks we are prejudiced about mental health problems. Yet, how can we be if we do not operate as one, and have personally experienced that same prejudice from those that claim we are prejudice about mental health problems. We know this reaction is based on ignorance and bigotry. We would not repeat it. The reason that so many patients support the none-psychiatric cause of the disease is because the science points to one, it always has, and doctors have always supported this. The psych theory is new, and based on ?????

The fact is that some people have taken these results to mean that a cause has been found. They just do. He is explaining as Dr. Alter went to great lengths to explain, that we don't have a cause as yet. This is a cautionary disclaimers that good scientists make with everything. It is not meant to demean anyone.

As far as the psych lobby- I don't want to say you're preaching to the choir, but....

I agree with you and so does everyone else here. Some people explained those views to him quite articulately in a non-defensive way.

Others, inferred their own insults from what he said, and reacted aggressively to what I thought was a great opportunity to build understanding. It is better to have him and others work with us and not create unnecessary adversarial relationships. Especially when the guy admitted to his own errors.

I know we are battle hardened because of the psych abuse- But sometimes we can be so geared up for a fight that we actually create one.

 

[V99]

Then why write a post to everyone and not to individuals?

No scientist put these things in studies, they don't put them on a blog or forum. This is different. Also, he is not an author of one of these papers. There is no reason to assume we are fools.

The psych lobby comment is for Alan to read, so no I am not preaching to the choir.

Who was aggressive?

 

[Wasbeer]

The fact is that some people have taken these results to mean that a cause has been found. They just do. He is explaining as Dr. Alter went to great lengths to explain, that we don't have a cause as yet. This is a cautionary disclaimers that good scientists make with everything. It is not meant to demean anyone.

As far as the psych lobby- I don't want to say you're preaching to the choir, but....

I agree with you and so does everyone else here. Some people explained those views to him quite articulately in a non-defensive way.

Others, inferred their own insults from what he said, and reacted aggressively to what I thought was a great opportunity to build understanding. It is better to have him and others work with us and not create unnecessary adversarial relationships. Especially when the guy admitted to his own errors.

I know we are battle hardened because of the psych abuse- But sometimes we can be so geared up for a fight that we actually create one.

I agree with you completely. It is my feeling that some people have forgotten how to pick their battles, bitter as they have become by so much deception and disappointment. Understandable, but far from constructive.

 

[V99]

Can I ask, who are you referring to?

 

[Recovery Soon]

Then why write a post to everyone and not to individuals?
There is no reason to assume we are fools.

1) Do you seriously expect him to write an explanation to every individual who disagreed with him? REALLY?
2) You are really caught up with the fool thing. I'll give it one more shot- that's all I have left. Here goes: In college, my major related in some way to the scientific method. Throughout the four years our instructors told us hundreds of times: "Correlation is NOT Causation."

Were they calling us fools without us realizing it?

 

[Wasbeer]

Yes, ofcourse you can ask, but I doubt if naming names will be constructive. Everybody has his own style of responding, and everybody means well. In general I can say that I don't think that reactions with an attacking or angry tone are helpful, especially when somebody like Alan (in my opinion) reaches out his hand to us. Whoever the shoe fits. I will not give names, because I only think it will cause more emotion and anger. If anybody thinks this comment is useful, and wants to use it, great, if not, please disregard it.

 

[V99]

Only if he felt they believed that this proves causation. Then he would be justified in explaining it to that individual. Kind of what you do on a forum.

Alan surely does not think we are students, therefore why talk to us like we are. (Student implies uneducated)

Were who calling us fools? If you are referring to the PNAS study, well you just said it. Its part of the scientific process, it is not however a good way to interact with people socially. It implies that the group is somehow inferior, incapable of grasping such basic concepts. I will be very happy if Alan says he does not think this about the entire group, but what is then left. What is he trying to say? I want to understand. He obviously wants to understand why some people have been upset by his previous blogs. Lets talk openly, it is better than dodging issues.

 

[cfs since 1998]

Throughout the four years our instructors told us hundreds of times: "Correlation is NOT Causation."

Correlation is not causation, but there is an enourmous amout of circumstantial evidence in favor of a retroviral cause, and to give equal weights to the "contamination" explanation and the "reverse causality" explanation is a ridiculous dismission of evidence.

 

[V99]

Yes, ofcourse you can ask, but I doubt if naming names will be constructive. Everybody has his own style of responding, and everybody means well. In general I can say that I don't think that reactions with an attacking or angry tone are helpful, especially when somebody like Alan (in my opinion) reaches out his hand to us. Whoever the shoe fits. I will not give names, because I only think it will cause more emotion and anger. If anybody thinks this comment is useful, and wants to use it, great, if not, please disregard it.

It's not that I want names, I am having difficulty understanding why any comments have been viewed as attacking, emotional or angry. A comment can only apply to the issue without being any of these things.

 

[V99]

Correlation is not causation, but there is an enourmous amout of circumstantial evidence in favor of a retroviral cause, and to give equal weight to the "contamination" explanation and the "reverse causality" explanation is ignoring that evidence.

I would agree with this. An infectious agent has always been suspected, and the known science does support the theory of a retrovirus.

 

[Recovery Soon]

Correlation is not causation, but there is an enourmous amout of circumstantial evidence in favor of a retroviral cause, and to give equal weight to the "contamination" explanation and the "reverse causality" explanation is ignoring that evidence.

Yeah- and he just admitted that the case for contamination is now much less likely. That is part of why he came today.

I'm not sure the circumstantial evidence argues any more in favor of a retro-viral cause than it does a weakened immune system vulnerable to one.

Even if it does- it is not a cause. Some people are desperate and are beginning to believe we have found one. We're not there yet. And good scientists prudently state that over and over again.

Believe me...I want one as badly as anyone does.

 

[V99]

Outbreaks would point to an infectious agent, a retrovirus would explain the reactivating viruses.

Where does cfs since 1998 say it proves causality?

 

[LaurelW]

I think this is a fascinating discussion, and I've learned a lot from it. Having dialogs even with people we strongly disagree with sometimes can move us all forward if we keep open minds and keep returning to the facts. What I really have trouble with are people that ignore the evidence, sometimes piles of it, because they are so attached to their world view and have more of an investment in vilifying a certain set of people than being an objective scientist. (a certain lady medical student blogger comes to mind). Trying to have a discussion with that type of person is a complete waste of time, as noted on other threads. But I don't think Alan is one of those people. I appreciate his clarification about mental illness being a real illness and having to fight for it. We're so used to insurance companies saying that if it's a mental illness, they won't cover it, as if one could just 'get over' it, therefore strengthening the stigma. That being said, the scientific establishment needs to give up the ghost about trying to pin CFS in that arena, as previously discussed.

I think what Alan was trying to say with the CFS causing XMRV statement (please correct me if I'm wrong, Alan) is that CFS, whatever its cause, could set the stage for XMRV or MLV's by being deficient in some way and not fighting it off, kind of like how AIDS patients get all kinds of opportunistic infections such as Kaposi's Sarcoma. I personally don't agree with this theory, but we're not at the end of the road yet. I recall Dr. Alter saying in yesterday's journalist teleconference that to prove causality they would have to show the actual virus embedded in the human DNA. I think he said that's one of the things he's going to work on next. If somebody knows more about this, please elaborate.

As far as the taking of anti-retrovirals before they are proven to be the right treatment, I don't think there is one blanket answer for this that you can use for everybody. The patients and their doctors need to weigh the possible benefits and risks against the possible harm of waiting a long time for better treatments. I know if I were as sick as some people I've heard about, I'd tell them to bring it on. As it is, I'm pretty miserable a lot of the time, but I prefer to wait and see what develops.

 

[Recovery Soon]

Where does cfs since 1998 say it proves causality?

He doesn't. I didn't say he did. This is what he said.

"there is an enourmous amout of circumstantial evidence in favor of a retroviral cause"

 

[V99]

Outsiders (for want of a better word) sometimes assume that we are mostly interested in the psych/organic issue. The truth is that what we really want is research, into all aspects. The obsession with continually studying the brain/mind has diverted attention away from other crucial aspects of the disease. So much is being missed and so much time is being lost focussing on one area. Since when was this a good model for any disease. All we get is CBT and GET studies, with slight tweaks here and there, with no use of objective outcome measures and little honesty in their interpretation.