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

[Andrew]

Dang! There are some great analogies and explanations posted by our patient community.

 

[Recovery Soon]

We should all remember that AIDS patients didn't get anywhere until they brought massive public attention to their own plight through some the ACT UP campaign. ACTing UP involved some really interesting acts of civil disobedience. It got people paying attention, especially the news media. It eventually embarrassed and humiliated the government and research communities into doing something about AIDS. People were rude, and broke the law, and called people murderers, and so forth. The book "AIDS DEMOGRAPHICS" is a wonderful photo essay on the topic, if anybody cares.

So I actually do disagree that Alan Dove is worth treating with respect, trying to win him over, or anything of the kind. He's unethical.

There is definitely validity to this kind of approach. But it's probably more effective when executed as a campaign with clear mission and objective- like ACT-Up. Just defensively lashing out makes you look crazy in some people's eyes. Maybe you don't care (you, collectively- not to kdeneris, specifically). But that's one problem the AIDS folks didn't have. I don't think anyone was questioning whether AIDS was a psychological condition.

We are already being branded as tempermental loose cannons- so firing away in anger, can be counteractive. I don't think researchers are running away saying "Wow- look how pissed they are. We need to fix this quick!" More likely, they're just running away. And thinking, "Look how restless the nut-bags are today."

I think keeping this stuff less personal is better. Unless, there is a well thought out strategy that involves civil disobedience with a clear objective- then fire away as heavy as possible.

Some of those comments made him look better than he needed to look, and that did not help us.

He's laughing at us right now. To our faces. I don't see it as a win.

 

[urbantravels]

I don't see the point in an argument ad hominem. Or in claiming that his wife's profession is a "conflict of interest" that he should have "disclosed" before being allowed to appear on TWiV. Huh??

I think if we are really interested in the truth about our disease, we should rebut arguments, not attack people. Is the argument good? Is the science sound?

I agree that some of his comments on his blog were condescending and made him sound like an asshat. That situation isn't improved by sinking to that level, or lower. I know it's a hell of a bore to have to explain over and over again, rationally and reasonably, that the "psychosocial" theory of how CFS is caused has done terrible harm to the patient community for decades. We think it's obvious because we're so well-versed in it - but the ignorance out there is vast. Get ready, we're going to have to do a LOT more of that kind of explaining once XMRV blows up in the popular press.

There probably is a place for anger and outrage and trouble-making in getting the recognition we need for our disease, but I don't think making snarky comments on people's blogs or sending them hate e-mail is a particularly effective way to harness our anger. What good does it do?

In this particular case, it seems like the recipient was quite ready to focus on the few comments that were emotional and irrational among a group of comments that were really quite reasonable, so I don't know how much it would have helped if the comments were 100% reasonable. Why waste energy in a pile-on after that? To prove we're angry? I think he got the point. Given the choice, I'd rather communicate some information and make an argument rather than take out my anger on everyone who makes an insensitive comment or doesn't seem to "get" the full history here.

 

[gracenote]

He's laughing at us right now. To our faces. I don't see it as a win.

At least he's not forgetting us. And how much do you want to bet that the next time he says anything about chronic fatigue syndrome he will be more precise? More informed? Less obtuse? There were some excellent responses posted in reply to his drivel of a blog. He chose to have a snit instead of engaging around the real concerns expressed.

Here is something I posted on another thread last week:

I hope you're not suggesting that we need to behave ourselves in order to be worthy of research and treatment. That would be kind of . . . discriminatory? I'm tired of having it insinuated that we the patients are the reason we don't get appropriate care. Maybe it's our personalities: We're too introverted! We're too driven! We're malingerers who're just wanting a free ride! We speak up too much! We get mad that all these political games are being played at our expense! We complain! We write impassioned letters! We're giving THEM a reason not to help US! It's OUR fault they think we're CRAZY!

SOME QUOTES ON VERBAL ABUSE​

Verbal abuse often includes blaming, brainwashing, and intimidation. Hidden aggression is a part of verbal abuse, as well. Verbal abuse is extremely manipulative, as insults are often disguised as caring comments. Verbal abuse can be overt or covert, but it is always about controlling and manipulating the victim.

Often, verbally abusive comments are offered as jokes. When the target of the joke is hurt or insulted, the verbal abuser laughs it off and says that the victim is overly sensitive. However, the intent of the verbal abuser is to cause this hurt.

In verbally abusive arguments, real conflicts are not the issue and problems are not resolved. The abuse becomes the issue, and often the victim is told that everything is always his or her fault.

Often, verbal abusers tell their victims what to think and how to feel. They typically refuse to see or understand the victims point of view. In fact, they often object, in a violently verbal way, to the victims opinions and desires. Verbal abusers often deny reality and attempt to keep their victims confused by constantly changing or distorting the issue.

Verbal abuse can be described as stealthy; it leaves wounds that are not visible to the naked eye. As it harms the mind and spirit, it can be more difficult to recognize than physical abuse. Also, its victims become so torn down by it that they are often unable to notice the abuse themselves.

Eventually, the verbal abuse victim becomes so worn down by the abuse that he or she becomes unable to put up a defense against it. Often, the victim begins to try to change or placate the abuser, thinking that such change will improve the relationship. Sadly, verbal abusers typically do not change on their own. For real change to occur, professional psychiatric help is usually required

I think we've been showing a HEALTHY response to very inappropriate treatment. I, for one, will not sit down and shut up especially if that is what THEY want.

 

[kdeneris]

I don't see the point in an argument ad hominem. Or in claiming that his wife's profession is a "conflict of interest" that he should have "disclosed" before being allowed to appear on TWiV. Huh??

A professional journalist is absolutely required to make such a disclosure. Journalistiic ethics require it. He responded that if I were a regular follower of TWIV, of course I would know his wife has a specialty in psychosomatic medicine. He's quite wrong in stating any such previous disclosure was adequate. I'm not a regular follower of TWIV .

I think if we are really interested in the truth about our disease, we should rebut arguments, not attack people. Is the argument good? Is the science sound?

I agree that some of his comments on his blog were condescending and made him sound like an asshat. That situation isn't improved by sinking to that level, or lower. I know it's a hell of a bore to have to explain over and over again, rationally and reasonably, that the "psychosocial" theory of how CFS is caused has done terrible harm to the patient community for decades. We think it's obvious because we're so well-versed in it - but the ignorance out there is vast. Get ready, we're going to have to do a LOT more of that kind of explaining once XMRV blows up in the popular press.

There probably is a place for anger and outrage and trouble-making in getting the recognition we need for our disease, but I don't think making snarky comments on people's blogs or sending them hate e-mail is a particularly effective way to harness our anger. What good does it do?

Alan Dove is writing propaganda. He's not just an ignorant blow-hard; he's propagating hate and attacking CFS patients and researchers in a particularly insidious, underhanded manner. He's doing it deliberately, or he wouldn't have forgotten to mention his conflict of interest with respect to the topic of CFS. I am calling him out on it, and letting him reap a little of what he's sowing. We actually don't need any more of his "help."

I also don't see how exposing someone's complete lack of professional ethics can be categorized as snark. Snark is not productive of anything, and I actually disagree that Alan Dove is really laughing about the disclosure of a conflict of interest issue. It's a serious matter. Yes, of course he's saying we're crazy, but the fact is that he already strongly indicated that opinion in his blog.

 

[eric_s]

By totally antagonizing and polarizing scientific journalists like Dr. Dove, CFS patients are helping themselves in the very long run. If it becomes a common perception in the general scientific community that research or coverage of CFS is likely to unleash a cyclonic storm of negative reactions from patients, then people in the scientific community will simply avoid dealing with the disease and those patients that have it.

So they will dismiss it and go on to other less demanding types of work, and CFS will stay under-funded and below the scientific radar. Science will wash its hands and allow the field to be dominated by pseudo-scientific quacks and exploitative individuals who despise CFS patients and mock them in their suffering.

This scientific void will continue along as other fields of science progress in parallel in the mainstream. Maybe for decades. Finally, someone with a bit of wealth or importance or a close family member will get the illness. Finding no help from the medico-scientific community, they will, in their righteous outrage, simply go out and fund their very own private institution to solve things and hire private scientists and researchers. The items missed by the mainstream scientific community during those intervening decades will be so abundant and obvious that progress will be rapid and groundbreaking. They may even find a microbe responsible, and devise a diagnostic test that detects it.

Lol Levi, i like your kind of humour.

But seriously (not referring to your post now), i think we should be careful. It's never possible to look inside of a person and see exactly where he/she stands but i think we are making a mistake, if we attack people that don't have bad intentions and could even be won for our cause. Of course, there are moments when we have to fight, but even then we should think about what's the smartest way to do it.

 

[V99]

I may be crazy but :tear::tear: I think we can get Alan to listen. I think if we only provide the facts of the situation he will get it.

 

[kdeneris]

Sorry, I somehow messed up the quote function. Here is my reply to urbantravels post:


A professional journalist is absolutely required to make such a disclosure. Journalistiic ethics require it. He responded that if I were a regular follower of TWIV, of course I would know his wife has a specialty in psychosomatic medicine. He's quite wrong in stating any such previous disclosure was adequate. I'm not a regular follower of TWIV, nor is the information available on his blog.

Alan Dove is writing propaganda. He's not just an ignorant blow-hard; he's propagating hate and attacking CFS patients and researchers in a particularly insidious, underhanded manner. He's doing it deliberately, or he wouldn't have forgotten to mention his conflict of interest with respect to the topic of CFS. I am calling him out on it, and letting him reap a little of what he's sowing. We actually don't need any more of his "help."

I also don't see how exposing someone's complete lack of professional ethics can be categorized as snark. Snark is not productive of anything, and I actually disagree that Alan Dove is really laughing about the disclosure of a conflict of interest issue. It's a serious matter. Yes, of course he's saying we're crazy, but the fact is that he already strongly indicated that opinion in his blog.

My anger is justified by his dishonesty. His anger at being caught flogging his wife's interests on TWIV, without the required disclosure, is not justified. It's just more propaganda, in which the fat, delusional, balcony jumping, google stalking cfs patients are accused of proving all the worst stereotypes about themselves. The more of this garbage that he churns out and posts, the more evident it becomes to just about anyone who reads it. Since he's been masquerading as a scientist and a journalist, his responses to us are actually doing nothing but damaging the Alan Dove brand.

 

[kdeneris]

At least he's not forgetting us. And how much do you want to bet that the next time he says anything about chronic fatigue syndrome he will be more precise? More informed? Less obtuse? There were some excellent responses posted in reply to his drivel of a blog. He chose to have a snit instead of engaging around the real concerns expressed.

Here is something I posted on another thread last week:

I hope you're not suggesting that we need to behave ourselves in order to be worthy of research and treatment. That would be kind of . . . discriminatory? I'm tired of having it insinuated that we the patients are the reason we don't get appropriate care. Maybe it's our personalities: We're too introverted! We're too driven! We're malingerers who're just wanting a free ride! We speak up too much! We get mad that all these political games are being played at our expense! We complain! We write impassioned letters! We're giving THEM a reason not to help US! It's OUR fault they think we're CRAZY!




I think we've been showing a HEALTHY response to very inappropriate treatment. I, for one, will not sit down and shut up especially if that is what THEY want.

I agree that we are much too afraid of being stereotyped as crazy, and that Alan's efforts to spread the stereotype more widely are verbally abusive. CFS patients have experienced more than their fair share of such abuse and stereotyping. They have every right to be afraid, based on past experience. But the result can be a fear of standing up for oneself, or a denial that the abusive statement or action "was really that bad," or a hope that if one continues to take it with a smile, and a pleasant request for more empathy and greater understanding, it will stop.

I think circumstances have changed for us, however. The XMRV research snowball has too much momentum. The Light/Bateman study identified biomarkers for CFS. People can say we're crazy as much as they want now, but those tactics aren't going to work anymore.

 

[acer2000]

There is definitely validity to this kind of approach. But it's probably more effective when executed as a campaign with clear mission and objective- like ACT-Up. Just defensively lashing out makes you look crazy in some people's eyes. Maybe you don't care (you, collectively- not to kdeneris, specifically). But that's one problem the AIDS folks didn't have. I don't think anyone was questioning whether AIDS was a psychological condition.

We are already being branded as tempermental loose cannons- so firing away in anger, can be counteractive. I don't think researchers are running away saying "Wow- look how pissed they are. We need to fix this quick!" More likely, they're just running away. And thinking, "Look how restless the nut-bags are today."

I think keeping this stuff less personal is better. Unless, there is a well thought out strategy that involves civil disobedience with a clear objective- then fire away as heavy as possible.

Some of those comments made him look better than he needed to look, and that did not help us.

He's laughing at us right now. To our faces. I don't see it as a win.

Agreed. Its a fine line.

acer2000

 

[Recovery Soon]

At least he's not forgetting us. And how much do you want to bet that the next time he says anything about chronic fatigue syndrome he will be more precise? More informed? Less obtuse? There were some excellent responses posted in reply to his drivel of a blog. He chose to have a snit instead of engaging around the real concerns expressed. ]

Yes- and the personal attacks dominated the conversation in the end AT THE EXPENSE of the excellent responses.

I don't agree that he is more likely to get it right with us in the future. I think he will either ignore us entirely or be more antagonistic because his Ego has been attacked.

There was an opportunity for a logical exchange of ideas that devolved into us talking amongst ourselves again.

And somehow that's effective? Someone said Pyrrhic Victory. That sounds about right.

 

[jspotila]

At least he's not forgetting us. And how much do you want to bet that the next time he says anything about chronic fatigue syndrome he will be more precise? More informed? Less obtuse? There were some excellent responses posted in reply to his drivel of a blog. He chose to have a snit instead of engaging around the real concerns expressed.

I don't want to take that bet. Given the exchanges so far, I think it is far more likely that if he says anything about CFS in the future it will be shaped by the negative part of the experience rather than the positive/educational part. That's human nature. The same is true for us. What will we think of first the next time we hear or read about Alan Dove? Will it be this controversy, or will it be something he said in another episode of TWiV?

My fear is that negative attacks innoculate people against examining the issues more closely. Again, I think it's human nature. I do not - for one second - believe that we should be silent, be nice, or lay down and die. I do believe that we need to be strategic, organized, tactical and persuasive.

 

[garcia]

Again, I think it's human nature. I do not - for one second - believe that we should be silent, be nice, or lay down and die. I do believe that we need to be strategic, organized, tactical and persuasive.

I don't think anyone would argue against that Jenny.

 

[gracenote]

I do believe that we need to be strategic, organized, tactical and persuasive.

So, after all these years, why do the Alan Dove's of the world still think they can get away with such condescending, belittling comments? Where IS the strategic, organized, tactical and persuasive responses to blogs like his? Why is it that we patients still feel we have to defend ourselves against these types of attacks? Might it be because there is no "official" organization taking them to task?

I don't really get the point of trying to adjust the communication from the patients when these kinds of blogs are going unchallenged. I would love to hear the CFIDS Association respond quickly and decisively each time such misinformation and yes, abuse, is being perpetuated. Where is the outrage from our patient organization? I realize that these things take time but, jspotila, you've posted several times speaking to patients and suggesting that we tone it down. I suggest that we would be better served if you direct your comments to Mr. Dove and others who think that it's okay to be so cavalier about a group of patients who have suffered far too long.

There, I said it.

Do I need to run and hide?

 

[Sam Carter]

To clarify my argument (see post #40) I would suggest that when deciding how to pitch our advocacy we need to think not in terms of polite vs impolite but rather in terms of the effectiveness of the message.

We should never pull our punches but we do need to "box clever". Most people (including doctors and journalists) remain shockingly ignorant of how ill we are and the magnitude of the injustice perpetrated against us - to educate them otherwise requires well thought out, intelligent and consistent messages.

Tom Kindlon and Gerwyn Morris have written the kind of letter that presents an unarguable case in our favour and which, I would argue, serve as templates for genuinely effective advocacy.

 

[Recovery Soon]

So, after all these years, why do the Alan Dove's of the world still think they can get away with such condescending, belittling comments? Where IS the strategic, organized, tactical and persuasive responses to blogs like his? Why is it that we patients still feel we have to defend ourselves against these types of attacks? Might it be because there is no "official" organization taking them to task?

I don't really get the point of trying to adjust the communication from the patients when these kinds of blogs are going unchallenged. I would love to hear the CFIDS Association respond quickly and decisively each time such misinformation and yes, abuse, is being perpetuated. Where is the outrage from our patient organization?

So is your anger at them or him? Because he doesn't care. He said so.

He is an A&&hole. Is that what you want to hear?

Maybe a more effective strategy is to strategically counterpoint him. Not take personal shots, which ended the discussion.

And/or contact those agencies you mentioned and articulate your displeasure in order to get some action.

 

[Esther12]

Something I often notice with these discussions is that those who want to take a more aggressive approach tend to believe that CFS patients have previously just been meek and mild, without making a fuss and getting angry, and that this approach has failed; while those who want a less agressive approach think that CFS patients have already tried being shouty and angry, and have gained a reputation for such behaviour without it achieving anything.

Both sides think that the current tactic is not working and needs to change, but seem to disagree as much on what has happened as how we should move foreward. I'm not really sure how we can resolve this.

I'm normally in favour of a less emotional and aggressive response, and still am, marginally, in this case. I also think Dove was a bit of an unusual tit and that most of the replies from patients were pretty decent and fair. That he was able to avoid addressing the points raised by drawing attention to the few more aggressive replies illustrates one of the problems with this more abrasive approach though - it can allow people to act as if they're taking the high-road by failing to respond.

 

[Recovery Soon]

we need to "box clever"

bingo.......

 

[eric_s]

I may be crazy but :tear::tear: I think we can get Alan to listen. I think if we only provide the facts of the situation he will get it.

I don't know if you're making fun or not but before any offending comments were made to Alan Dove (justified or not), i believe this might well have been possible. It's probably still possible, but much harder now. He's a scientist and an intelligent person. He might be wrong, as any of us too, but i think he wants to know the truth. And i think this is true for the majority.
What did he say in the programme that was so bad (i'm too tired to go back and check, but i remember that he mentioned different attempts out of different corners to explain CFS and that the cause is not yet known)? We may not like to hear that, neither do i, but at this point, we can't prove his statements wrong, in my opinion, and so we have to let him say that. If some of us had presented some evidence for a biological cause of CFS to him, without attacking him, probably he would have taken some time to go through it.
Were those couple of sentences really worth the fight and the potential damage to us?
Sorry, if some people don't like to hear that. I'm on the side of people with CFS, either way, but that's what i believe.

 

[akrasia]

So, after all these years, why do the Alan Dove's of the world still think they can get away with such condescending, belittling comments? Where IS the strategic, organized, tactical and persuasive responses to blogs like his? Why is it that we patients still feel we have to defend ourselves against these types of attacks? Might it be because there is no "official" organization taking them to task?

I don't really get the point of trying to adjust the communication from the patients when these kinds of blogs are going unchallenged. I would love to hear the CFIDS Association respond quickly and decisively each time such misinformation and yes, abuse, is being perpetuated. Where is the outrage from our patient organization? I realize that these things take time but, jspotila, you've posted several times speaking to patients and suggesting that we tone it down. I suggest that we would be better served if you direct your comments to Mr. Dove and others who think that it's okay to be so cavalier about a group of patients who have suffered far too long.

There, I said it.

Do I need to run and hide?

Nope. It's the elephant in the room.

That was one lucid post, Gracenote.

Welcome to the M.E. Avengers.