Alan Dove misunderstands ME/CFS patients

[WillowJ]

Alan Dove says he thinks patients are "true believers" in XMRV because of seeking ridicule from outsiders in order to be a martyr in the eyes of other believers. I thought it took a Sharpe to make this stuff up. Please correct him as kindly as you can.

url removed

My comments (awaiting moderation)

I think youre overreacting. Most of the ME/CFS community is saying they dont know what to think about murine leukemia viruses, which is, incidentally, the same think Ian Lipkin says. Yes, I know, contamination. But that really cant explain, for instance, negative controls when they were handled the same way as the samples (which I think is the case). No contamination has been demonstrated, which is something which directly applies to the Lombardi study. There could be some sort of as-yet-undetermined contamination which could explain things.

But its normal for science to have false leads this early in the process. Maybe the MLVs are a false lead, and maybe the thought that *all* results are explainable by contamination is a false lead. Its too soon to tell. As Lipkin says, sometimes other (good!) scientists are unable to replicate a particular result and WPI deserves a chance to replicate their own methods in a blinded study. Any conclusion prior to that is premature.

Maybe MLVs will turn out to be unimportant. Maybe methods will turn out to be more important than virologists are accustomed to thinking. At this point, I agree with Lipkins public statment, that we have a state of confusion.

The really important point here, the take-home message, is that ME/CFS patients have been basically thrown in a dungeon for the last few decades. Did you know that the federal research budget for ME/CFS is generally only $4-6 million? Compare to MS, $144 million, Asthma, $300 million, Alzheimers, $500 million. Whether or not any retrovirus is involved, the important thing is that ME/CFS patients deserve hard science, not insults. If you dont want them believing in XMRV, then, by all means, get NIH to give some funding for something else. Despite the lack of funding, there is no lack of promising avenues. For instance:

Jammes Y, Steinberg JG, Delliaux S, Brgeon F. Chronic fatigue syndrome combines increased exercise-induced oxidative stress and reduced cytokine and Hsp responses. J Intern Med. 2009 Aug;266(2):196-206. Epub 2009 May 19. PMID: 19457057

Chia J, Chia A, Voeller M, Lee T, Chang R. Acute enterovirus infection followed by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and viral persistence. J Clin Pathol. 2010 Feb;63(2):165-8. Epub 2009 Oct 14. PMID: 19828908

Fletcher MA, Zeng XR, Maher K, Levis S, Hurwitz B, Antoni M, Broderick G, Klimas NG. Biomarkers in chronic fatigue syndrome: evaluation of natural killer cell function and dipeptidyl peptidase IV/CD26. PLoS One. 2010 May 25;5(5):e10817. PMID: 20520837

Kerr JR, Gough J, Richards SC, Main J, Enlander D, McCreary M, Komaroff AL, Chia JK. Antibody to parvovirus B19 nonstructural protein is associated with chronic arthralgia in patients with chronic fatigue syndrome/myalgic encephalomyelitis. J Gen Virol. 2010 Apr;91(Pt 4):893-7. Epub 2009 Dec 9. PMID: 20007355

Zhang L, Gough J, Christmas D, Mattey DL, Richards SC, Main J, Enlander D, Honeybourne D, Ayres JG, Nutt DJ, Kerr JR. Microbial infections in eight genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis. J Clin Pathol. 2010 Feb;63(2):156-64. Epub 2009 Dec 2. PMID: 19955554

Peckerman A, LaManca JJ, Dahl KA, Chemitiganti R, Qureishi B, Natelson BH. Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome. Am J Med Sci. 2003 Aug;326(2):55-60. PMID: 12920435

Konstantinov K, von Mikecz A, Buchwald D, Jones J, Gerace L, Tan EM. Autoantibodies to nuclear envelope antigens in chronic fatigue syndrome. J Clin Invest. 1996 Oct 15;98(8):1888-96. PMID: 8878441

Whistler T, Jones JF, Unger ER, Vernon SD. Exercise responsive genes measured in peripheral blood of women with chronic fatigue syndrome and matched control subjects. BMC Physiol. 2005 Mar 24;5(1):5. PMID: 15790422

Let me correct myself slightly. The ME/CFS community has all types, including many who have largely abandoned, and some who never believed, the XMRV/MLV theory in the first place. Many others (and I think these mentioned groups comprise the great majority) are taking a cautious but wait-and-see attitude, but concerned that the scientific process may be cut shortregardless of what the outcome is on MLVs, we want to know for sure what it is. We care less what is wrong than that someone looks dilligently and finds appropriate treatment as soon as possible.

 

[Angela Kennedy]

In other news - the tide came in...

And there's 'ERV' with her particular brand of ad hominem, misinformation and condescension against this patient community we've all come to know so well. That young woman's got some strange personal issues about patients and another woman scientist that dwarfs any knowledge of retrovirology she claims to have.

But good job with the comment WillowJ.

 

[Enid]

What a weird interpretation of the Easter event anyway. Can't see it related in any form to viruses. Confusion of levels = sloppy thinking.

 

[Snow Leopard]

I think it would be a good idea not to flood this blog with comments though and leave the responding up to WillowJ.
Or ERV for that matter - she does it for attention, I think we should ignore her from now on so she loses interest.

 

[In Vitro Infidelium]

Alan Dove says he thinks patients are "true believers" in XMRV because of seeking ridicule from outsiders in order to be a martyr in the eyes of other believers. I thought it took a Sharpe to make this stuff up. Please correct him as kindly as you can.

You are accepting a 'hat' that Dove isn't offering you to 'wear'. The article happens to include in its examples of on-line cultism, a belief about CFS causation, but Dove hasn't said anything generic about M.E/CFS affected people. What he has very succinctly identified is the pervasive dangers of succumbing to the group think of, in his suggested terminology, Forum Faiths, or E-tribes, or Chatroom Counterfactuals. Of course I'm bound to support Dove given a very strong incentive to confirmation bias.

IVI

 

[Angela Kennedy]

You are accepting a 'hat' that Dove isn't offering you to 'wear'. The article happens to include in its examples of on-line cultism, a belief about CFS causation, but Dove hasn't said anything generic about M.E/CFS affected people. What he has very succinctly identified is the pervasive dangers of succumbing to the group think of, in his suggested terminology, Forum Faiths, or E-tribes, or Chatroom Counterfactuals. Of course I'm bound to support Dove given a very strong incentive to confirmation bias.

IVI

So Dove is writing in non-sequiturs? Jumping from one subject to another without a link? That's not the case. He is rhetorically associating the ME/CFS community with his own speculative, opinion based assertions about 'cultism' and 'groupthink'. It's a well-known rhetorical device.

 

[Enid]

And the suggestion of "cultism" and "groupthink" in his sense is utterly offensive in the ME/CFS world - couldn't be wider off the mark.

 

[Boule de feu]

My impression is:
"I will not waste my time on this. It is not worth it."
IMO, it's a way to get more traffic on his blog and ERV is contributing to that.
Bravo WilllowJ for your answer. It is a very good one.

 

[Navid]

My impression is:
"I will not waste my time on this. It is not worth it."
IMO, it's a way to get more traffic on his blog and ERV is contributing to that.
Bravo WilllowJ for your answer. It is a very good one.

Bdf:

Agree!!!! must mean i'm part of your cult!!! uh-oh

what i don't understand is why ppl like dove and ivi who obviously disdain me/cfs patients continue to write, talk, think about us. if you think we're crazy, great move on....we don't need you. we need compassionate, caring, smart, curious people who will help us find a way to recover from this life robbing disease.


please don't feed the animals.

 

[Angela Kennedy]

Willow brought this to people's attention because this community does need to know how they are being (mis)represented, and where possible, such misrepresentation can be countered.

 

[Wayne]

Hi Willow, really good job on your reply. I came across the following snippet in one of Alan Dove's replies.

Yes, it seems the majority of the CFS patients have already figured out whats up with XMRV. I was talking about the hard-core disciples of the Church of St. Judy.

Church of St. Judy?????? Arrogance reigns supreme with this guy. Ironically, he comes across as the kind of person he's trying to denigrate. Could be some kind of cosmic dynamic where he sees himself in others, I don't know. Anyway, he sounds like sort of a nut case to me; won't be giving him another thought.

 

[WillowJ]

I agree that it's not a good idea to drive up web traffic, and I've removed the link in the OP for search engine ranking purposes.

Alan is obviously not engaging with new ideas or information, so if anyone else wants to respond I would advise posting here (it shouldn't be too difficult for anyone to find this page if interested in his topic).

It's too bad there isn't a process whereby people with such a profound disrespect for patients are taken out of their current professions and routed into others where empathy is not needed.

Angela, thank you.

Thanks also everyone who had kind words for the content of my post.

The bizzare thing is, ME/CFS patients already have to deal with so much disrespect, it would be either completely insane, or entirely lacking in even a surface understanding of what is going on in our world, to suggest any of us (no matter how small he professes, when corrected, to believe the segment of "inappropriate" believers is) would go out seeking ridicule for any reason.

 

[justinreilly]

I agree that it's not a good idea to drive up web traffic, and I've removed the link in the OP for search engine ranking purposes.

Alan is obviously not engaging with new ideas or information, so if anyone else wants to respond I would advise posting here (it shouldn't be too difficult for anyone to find this page if interested in his topic).

It's too bad there isn't a process whereby people with such a profound disrespect for patients are taken out of their current professions and routed into others where empathy is not needed.

Angela, thank you.

Thanks also everyone who had kind words for the content of my post.

The bizzare thing is, ME/CFS patients already have to deal with so much disrespect, it would be either completely insane, or entirely lacking in even a surface understanding of what is going on in our world, to suggest any of us (no matter how small he professes, when corrected, to believe the segment of "inappropriate" believers is) would go out seeking ridicule for any reason.

Yes, really! Dove is emotionally disabled. I'd pity him if he weren't a jerk. (it would be ironic if HGRVs were the cause of his Asperger's) That's what he's going for- making himself feel better by kicking the most vulnerable.

 

[Desdinova]

Who is Alan Dove? Is he someone of importance or prominence? He seemed a bit erratic in his post jumping and jumbling seemingly unrelated issues together. I still have no idea what part religion had to do with the ME/CFS XMRV issue. Not to mention how he goes off on a tangent about autism and vaccines.

 

[Snow Leopard]

Is he someone of importance or prominence?

Not at all, just some PhD with a blog.

 

[floydguy]

Not at all, just some PhD with a blog.

With a wife who is a shrink.

 

[CBS]

Who is Alan Dove? Is he someone of importance or prominence? He seemed a bit erratic in his post jumping and jumbling seemingly unrelated issues together. I still have no idea what part religion had to do with the ME/CFS XMRV issue. Not to mention how he goes off on a tangent about autism and vaccines.

Alan Dove is someone who profits from the psych lobby BS about CFS. His wife is psychiatrist specializing in ""Psychosomatic Medicine."

He has an extremely over inflated view of his understanding of CFS. On TWIV several months ago, he stated that he was a medical journalist who was around during the CDC's $10 million "misappropriation" scandal. Dove stated that there were questions about whether or not the money was ever really "misdirected." He claimed that is was nothing more than an unproven allegation. Bill Reeves didn't even go that far.

Dove is one step this side of ERV and without Racaniello (or his wife's income) he'd most likely be living on the street.

On the surface it appears as though he spends his days blogging and tweeting about science but to me his posts seem to be a bit sad as the theme is often more about why people don't appreciate his efforts to save them from themselves (it's a recurring theme). A bit of a messiah complex. I'd suggest that he ask his wife for a good referral but I haven't read (or heard) anything from him to indicate that he has that kind of self awareness.

Not worth much more forum space than that.

 

[WillowJ]

ERV is just some student, but Racaniello gives AD a platform because why? I'm puzzled. What's his PhD in? Journalism or virology?

 

[Navid]

It's too bad there isn't a process whereby people with such a profound disrespect for patients are taken out of their current professions and routed into others where empathy is not needed.....willow

I think he should become a professional mercenary....that's about the best role for him given his non-existent empathy. And why VR gives him a platform is a very good question.....

i don't like to admit this but i sometimes visualize slapping him across the face....cruel but true.

thanks willow.

 

[voner]

how does it feel?

Alan is prone to making flippant statements and has not realized that when you participate in a popular podcast,( this week in virology), and also blog, you have become a public person.

Allen also has a very thin skin, and he was very offended when in the early days after the WPI's original science publication, he made the statement that he was horrified that anybody would consider antiretrovirals drugs, etc. this prompted a large response on his blog from CFS patients. I think he said to the CFS patients who replied to him on his blog something like "you people are crazy", shut down the reply feature......... and then he disappeared the blog a short time later and started a new one.

Allen would not be worth discussing, except for he does put out an opinion that it is emotional and opinionated on XMRV and CFS, couched in references published scientific papers. I listen to twiv -- because Vincent Racaniello and the rest of the folks on the show are absolutely wonderful. IMHO, the world would be much better off if we had many more Vincent Racaniello's. They do a good job of educating the public and I like their folksy style. They live in extremely insular world, but they are only podcasting about their insular world -- for the most part.

what Alan does not express -- and Vincent Racaniello does -- is compassion for very sick people. instead of expressing that it's sad that in an incredibly wealthy country like the United States, there are few medical options, if any, for these very sick and desperate patients.

A while back on twiv, the discussion wandered around to viruses in the endangered gorilla population around Rwanda (I think that was the subject) and somewhere within the discussion Allen made a flippant statement about eating endangered mountain gorillas..... meant in jest -- but he just doesn't understand how offensive he can be. and then he takes any opportunity to passive aggressively poke back at people that have offended him...

I think Alan could use quite a little psychological counseling himself.

as a listener of TWIV, that's my take on it. Alan does contribute viable information to the broadcast.....And then I cringe when he does one of his flippant remarks, and remarks like that always make me think of the Bob Dylan song, "like a Rolling Stone"":

Once upon a time you dressed so fine
You threw the bums a dime in your prime, didn't you ?
People'd call, say, "Beware doll, you're bound to fall"
You thought they were all kiddin' you
You used to laugh about
Everybody that was hangin' out
Now you don't talk so loud
Now you don't seem so proud
About having to be scrounging for your next meal.

How does it feel
How does it feel
To be without a home
Like a complete unknown
Like a rolling stone ?