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

voner

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Evidently, many people, like myself, sent e-mails to Alan Dove, one of the participants in the recent This Week in Virology" podcast that featured Dr. Sing's research on XMRV. I sent an e-mail asking Alan to re-listened to the part of the podcast where Vincent Racaniello read e-mails from listeners (dominated by cfs/me patients) with questions about XMRV.. and contrast his responses to the Dr. Racaniello responsives. I found Alan's responses to be uninformed about xmrv, closed minded, and occasionally condescending and lacking any empathy.

Well Alan has chosen to respond via his blog:

http://dovdox.com/content/2010/08/xmrv-cfs-and-the-nature-of-science/

I am going to suggest to Alan that he read The Patient Advocates most recent blog, in which Consegura quotes a recent New York Times article about Alzheimer's and research and how some recent discoveries have been accelerated because of the sharing of data. I would put the web link to Consegura blog, but the link seems to be down right now, maybe someone else can post it. . so here is the New York Times article that he quotes:

http://www.nytimes.com/2010/08/13/health/research/13alzheimer.html?ref=health

I wonder if Alan realizes that the world of scientific research is changing, or maybe he is just highly sensitive to criticism.

voner
 

ukxmrv

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It is true that Alan Dove's wife is a Psychiatrist?

Maybe we hit a sensitive note in his household....
 

LaurelW

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Thanks for posting that link. I agree that Alan is behind Dr. Raccaniello in his knowledge about CFS. Several people have written really good comments on his blog. Hopefully he will read them and get more educated and change his attitude.
 

leaves

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Hmmm yeah, I've heard more empathic statements.
Anyway not much we can do about that opinion besides trying to feed him the facts in a digestible (read friendly and objective) way. Hopefully he is willing to change his opinion as science progresses.
 

leaves

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indeed it would be.
I just cannot imagine he thought that one through, that would be truly awful.
 

Sasha

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I just left a comment which is awaiting moderation. It was:

“Just try not to step off any balconies”? What is wrong with you?​

Looking forward to seeing if it makes it on there. What a sick thing to say.
 

eric_s

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I don't know which one Alan Dove is, but when i listened to the TWIV stream, i thought one of the two guys on there (other than Vincent Racianello) was quite good. But that might have been the other one, i don't know.

After listening to the programme i wrote an email to Dr. Racianello asking him to please stop using the term "chronic fatigue". He replied and explained why he did that (he said he does it to try to be brief). I still don't think one should use that term but i appreciate his reply and explanation. I think, i even offended him a bit, but nevertheless i tried to be polite and factual and i think that's important (in most cases).

I don't want to offend people on this thread but i don't think Alan Dove's response here http://dovdox.com/content/2010/08/xmrv-cfs-and-the-nature-of-science/ is so bad.
I certaily don't believe CFS is psychiatric. And i think there's enough evidence,luckily, to show that this is highly unlikely.
But still i believe that we should not try to control what science is allowed to look into and what it's not. I only have a problem with studies that are of bad quality (which is hard for me to judge). Those should be attacked, in the appropriate way.
Maybe that's just the way i do things, and i totally respect that other people do things differently. But if something is very important, as CFS obviously is for any of us, i try to be objective almost to the point where it hurts. Because i don't want to be biased and not see things that i should see. So i demand an even higher degree of quality for the points that are in our favour, because i want to be sure about them, so that we can beat or opponents over the head (metaphorically :tongue:) with them. If our points are more solid than theirs, we will win. And if we make statements that we can't back up well enough, it makes us look bad.

I think we should be very firm, smart and well organized in our effort to move CFS forward and get better treatment but i think in most cases it won't help to have a tone that is too aggressive. Let the facts speak and pull all the levers you can but don't attack the persons. Unless they really deserve it.

For example i think he's right when he says that
we dont know what causes CFS
I don't think we can say for sure, what the cause is, yet. Dr. Singh seems to agree. We need more studies on XMRV to be sure.

I can't speak for Alan Dove, but please don't misunderstand the sentence
Just try not to step off any balconies
Above he said
A postmodernist can scream until hes blue in the face that the Newtonian frame of reference is just one of many equally legitimate world views, and that non-Newtonian claims to reality have just as much validity. Nonetheless, if he steps off a tenth-floor balcony, he will accelerate downward at 9.8 meters per second per second (minus air resistance). It works every time.
and he was referring to that. Basically he was just saying: You may believe whatever you like, but if you act on those beliefs and they are wrong, you will be in trouble. And that's true.

Please don't misunderstand me. When i say things like above, then i do this because i want to strengthen our "movement". We have to be critical of ourselves too, to see where we can improve. And i don't claim to know "the truth".
 

Sunshine

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Alan Dove: Pot calling the kettle black

Alan Dove quotes on XMRV and CFS patients in general found at http://dovdox.com/content/2010/08/xmrv-cfs-and-the-nature-of-science/

On the last episode of TWiV, we talked about XMRV, a retrovirus that appears to infect some people.
It has potentially infected 10 million Americans Alan, is that just ''some''?

we got a lot of comments on the TWiV blog and on alandove.com from CFS patients, some of them quite vehement (prostate cancer patients didn’t get nearly as riled up
Comparing the emotional 'reaction' of a life long chronic disabling disease (often CFS onset is in childhood/teen years) that is IGNORED BY THE GOVERNMENT and puts 1 in 4 people in a wheelchair/bed ridden (some paralysed), to Prostate cancer is ignorant Alan. Why type this comment other than to purposefuly goad more of a distressed reaction from the physically and socially neglected and disabled? Due to the age of onset, Prostate Cancer victims have had decades of living life before they develop the conditon unlike teens with CFS who have had their life stopped before graduating and now require 24/7 care.

I elaborated on the show, pointing out that there is evidence both for and against infectious, environmental, and psychiatric causes for this disease
There is no evidence for psychiatric causes of CFS which is not classified as a psychiatric illness (very important). There is evidence, however, that CFS diagnostic criteria over the decades has been weakned to the extent that people with psychiatric illnesses are now diagnosed with the CFS label meaning that people with neuro immune disease (who share the label CFS) are not taken seriously. You failed to explain this Alan. Why?

They’re ill – often debilitatingly so – and want clear answers and a cure immediately, if not sooner.
Total semantics. One cannot have a cure sooner than immediately, unless a person is mentally unstable or an unrealistically demanding person. Which is what the reader imbibes from the language used by you writing this. Again accidently on purpose Alan? What a poor way to conduct yourself I must say.

I’m not ill (thankfully), and I think like a scientist. And that’s the real problem.
.
More trash talk Alan. You imply that people who are 'ill' cannot be scientists and/or understand your very restricted knowledge on CFS. Many severe ill (and dying) people are scientists, understand science and have a high IQ. A very offensive comment I feel. Importantly one does NOT have to be a scientist to understand scientific research, which voids your comments and exposes them as simply rude. Rudeness is not part of a scientists remit I might add....

Similarly, saying that CFS could have infectious, environmental, and/or psychiatric causes presents a list of possible truths. The current science has not ruled out any of those possibilities, which aren’t even mutually exclusive.
No Alan you are incorrect. By finding XMRV in a well definded cohort of CFS with neuro immune disease at the WPI, (who do not have any psychiatric illness) then one has found XMRV (infectious retrovirus) in this group of people, period. This rules out psychiatric causes of CFS If not, when a person is found to be HIV+ are they also told they HIV may be caused by psychiatric causes? No.

Unfortunately, the word “psychiatric” carries heavy freight. Our society stigmatizes mental illness, and the current treatments for most psychiatric conditions range from mediocre to nonexistent. Saying that a disease could be psychiatric is saying that it could be ostracizing and incurable. That’s not something a CFS patient wants to hear. Many of them probably stopped reading after the previous paragraph.
Again inflammatory rhetoric that shows blatent prejudiced attitudes to the type of person you presume to have CFS. It's akin to a racist presuming someone of a certain ethinic background is prone to violence or being mean with their money because you heard it on a school bus one afternoon after a victorious ball game. How can you possibly know that 'many' people with CFS will refuse to read your article proposing that the illness may be psychiatric any more than someone with HIV or Parkinson's disease may refuse to read their disease is psychiatric too? I will repeat, CFS is not classified as a mental illness and persons with neuro immune disease have CFS. You cannot dodge this fact by throw away comments based on supposition or an excuse that you read from bigots in the psychiatric profession that CFS could be caused by psychiatric illness. There is no evidence whatsoever any more than any other discriminatory construct.

CFS has over 5,000 published articles showing organic pathology and had never been classified as mental illness. Accept this. Deal with it, and move on.
If as a CFS patient you cannot listen to us bad tempered CFS patients, maybe listen to American Harvard Medical School Professor of Medicine Dr Anthony Komaroff. Years ago he has stated years that the time for CFS being thought of as a mental condition ''is over''. Got that? Your views Alan are outdated, at best.

As a scientist, bigoted views are not meant to be of any relevance to science. CFS is classified in ICD-9-CM Diagnosis Code 780.71, and ME (Myalgic Encephalomyeltis) in ICD-10 G93.3 both which are not a psychiatric illness coding classification. CFS patients would therefore rightly explode at your lack of knowledge by suggesting otherwise, especially at someone in ownership of a Phd who should know to check facts before making judgements that are academically truant.

An extraordinarily bad article Alan. Bad show. You aren't a MD. If a Phd isn't enough maybe go to medical school and learn about the disabling illness that CFS is before passing judgement on 1 million Americans you have never met, and presume all think the same, which only someone ill-informed with pre set views on CFS sufferers would do. Yet how is this possible? You might not be able to admit you have cognitive issues regarding people with CFS due to the 'heavy freight' and the fact ''our society stigmatizes mental illness'', huh?

Your comments on CFS have just ampified this stigma and heavy freight. Well done.

:Retro mad:
 

Sasha

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I can't speak for Alan Dove, but please don't misunderstand the sentence "Just try not to step off any balconies" [...] he was just saying: You may believe whatever you like, but if you act on those beliefs and they are wrong, you will be in trouble. And that's true.
Oops! I hope he moderates me now!

I didn't read his article properly, just skimmed it to look for that comment because it had sounded so objectionable. That will teach me!

Thanks, Eric.
 

LaurelW

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:Sign Good one:I'd sure like to know who "Science_Based" is. S/he wrote an amazing post and summed up many really good points. Thanks, whoever you are!
 
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LaurelW
That is a good post. I hope that Alan actually does some research, instead of believing the propaganda.
 

VillageLife

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Alans posted a new message,
The comments so far are pretty much what I expected to hear: Im an idiot, people are suffering, the science is already settled, and a CDC-based conspiracy is suppressing the truth. As I said, youre entitled to your opinions.

The one recurring theme that I want to answer is the not enough research funding complaint. Youre preaching to the choir. Theres certainly not enough funding for studies on this disease, or for research on many others (malaria and TB come to mind). Unfortunately, government science funding is currently a zero-sum game, so if you only lobby for more CFS funding, what youre really saying is pull money away from some other serious disease. Instead, write to your elected representatives at all levels of government and demand more funding for biomedical research across the board, as well as an earmark or two for CFS.
 

gracenote

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And here is Alan's reply to all these (mostly) excellent posts:

The comments so far are pretty much what I expected to hear: Im an idiot, people are suffering, the science is already settled, and a CDC-based conspiracy is suppressing the truth. As I said, youre entitled to your opinions.

The one recurring theme that I want to answer is the not enough research funding complaint. Youre preaching to the choir. Theres certainly not enough funding for studies on this disease, or for research on many others (malaria and TB come to mind). Unfortunately, government science funding is currently a zero-sum game, so if you only lobby for more CFS funding, what youre really saying is pull money away from some other serious disease. Instead, write to your elected representatives at all levels of government and demand more funding for biomedical research across the board, as well as an earmark or two for CFS.
Someone needs to give him the numbers on funding for Malaria and TB as compared to CFS. (I can't do this right now.)

Here is the NIH funding site.

Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

The comments so far are pretty much what I expected to hear: Im an idiot, people are suffering, the science is already settled, and a CDC-based conspiracy is suppressing the truth. As I said, youre entitled to your opinions.
He heard what he "expected to hear" but not actually what was being said. Thanks, Alan, for saying "you are entitled to your opinions," but that doesn't really make up for your lack of objectivity and bigotry.

bigotry: intolerance toward those who hold different opinions from oneself
intolerant: not tolerant of others' views, beliefs, or behavior that differ from one's own
tolerant: showing willingness to allow the existence of opinions or behavior that one does not necessarily agree with
 

Otis

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And now Alan Dove has stopped accepting comments with the following quote:

Update: Comments are now closed. I approved all of the ones that came in initially, and the new ones are just reiterating the same points. Meanwhile, many folks have taken a really nasty tone. I said what was on my mind, you all said what was on yours. Now you can go yell at someone else and then wonder why they stop listening, too.
That pretty much confirms for me that he's uninformed, condescending believes he must be right because "HE (and none of us) thinks like a scientist". Alan Dove is a shining example of the fact that preconceived notions and science are not mutually exclusive.
 
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In his last blog entry and comment, Alan Dove uses primarily ad hominem attacks as his argument. Rather than discussing the topic, he attacks CFS patients and hence renders CFS patients conclusions as flawed. By prohibiting comments on his blog, his is acting in a diametrically opposed manner to a scientist. He is essentially saying I am right and Im not going to be open to criticisms of my arguments.