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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by voner, Aug 14, 2010.

  1. leaves

    leaves Senior Member

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    Yes, I totally understand the emotions behind these responses, God know I have them too, but it is just not effective in making people change their minds. And we do need people to change their minds. I guess we could all learn from psychology/ negotiation here :) there is ample evidence on what it takes for people to change their minds;
    1. An open atmosphere, not focused on right/ wrong
    2. Talking in positive terms (hope vs fear)
    3. TIME (not demanding immediate change; people do not want to feel forced to change opinion, but rather have it feel like it is their own idea
    4. Flattering and being generous and respectful to opponent, pointing out how the opponent made you change your mind/ gave you new insights.
    5. Style; not sounding emotional and not sounding paternalistic
    6. Make use of logic, facts and illustrations , preferably that stick
    7. Make your opponent like (not pity) you; people are more likely to agree with a person they sympathize with
    8. Make the change of opinion as least costly as possible (e.g. don't aim for them to spell it out or retract earlier statements as this may cost their ego or bring themselves in an embarrassing situation)
    will all increase the likelihood of success.
    http://www.wikihow.com/Persuade-People
     
  2. Esther12

    Esther12 Senior Member

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    While not wanting to side-track this positive promotion of a more thoughtful, cautious and hopefully persuasive approach to engaging with others over the internet...

    that Alan Dove guy really is pretty irritating. Has he just cleared out his comment section? His "the reason we disagree is because I'm too science" posturing was bad enough, but the way he's ignored all the fair criticism of his post and cherry picked what he wanted.... the guy's really not worth bothering with. What a disappointment that he's featured on TWIV.

    whoop whoop - edit to clear up: His post seems to be online at a few different places, each with different comments underneath. He has stopped people adding comments after he's had his replies, but he has not cleared out his comment section. (Actually, re-reading my post, I didn't say he had but just asked. Being cautious... it saves some trouble).
     
  3. Robyn

    Robyn *****

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    Unfortunately it's the narrowminded way of thinking that has continued to keep us from getting the medical treatment and correct diagnosis that we all deserve. If doctor's or scientists knew what it was to lay in bed for 20, 10, or even 5 years, they would understand why we get upset. I'm sorry but there' is no antidepressant that can touch this condition. It is a life sentence. One none of us deserve.
     
  4. kdeneris

    kdeneris

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    To respond to the many people who have critiqued my personal response to Alan Dove -- some thoughts:

    In almost all cases, I would have no problem following the reasoned and careful approach to winning hearts and minds to the CFS cause. In most cases, I would consider all your advice about "getting to yes" to be appropriate. In my mind, this case is very different.

    Alan Dove's behavior was unethical, misleading, and completely unprofessional. He concealed a serious conflict of interest, which is truly heinous behavior in either a journalist, or a scientist So my intent was to be as unpleasant as possible about his conflict of interest, which is the concealment of his wife's influence on his biased and ill-informed opinions. I have no intention of hiding behind this forum, which is why I use my real name here and elsewhere on the internet. If Dr. Racaniello is his close friend, then Dr. Racaniello apparently failed to report a conflict of interest he, too, must have known existed. Alan Dove was rude and condescending to Dr. Singh, and is nothing but a liability to any institution with which he might be affiliated, including TWIV.

    So, it's not my intention to say I was just blowing off steam. I'm quite serious and ready to stand behind every word of it. I was more direct than he was in his nasty, hateful blog, but I couldn't possibly have outdone him in the nastiness,and hatefulness of his attack on CFS patients. Some people won't agree with my approach to the problem -- and they don't have to emulate me. But I saw no reason to deprive him of my personal response. I don't recall that I even identified myself as a CFS patient -- although, of course, I am. and don't intend to hide it. I felt equally offended by his comments just from the standpoint of being a woman.

    In a more general sense, though, I know that I and other CFS'ers disagree that playing nice is always the way to get things done. I think there is room for nice guys like Jspotila, whose public relations efforts I do appreciate, but there is also room, and increasingly more of it, for people who want to take a harder-edged approach, especially to dealing with the psych lobby and its (secretly) embedded pseudo-scienctific journalists. 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. He put his opinion out there -- in a misleading fashion -- and he deserves everything that has come back at him. He deserves to have his reputation trashed. and so I also appreciate the efforts of any anyone who pursues that goal publically. I hope the problems with Alan Dove and elsewhere do come to the attention of the media, not that they seem very interested in policing themselves.

    There seems to be a "meme" among certain researchers and CFS patients that says we all have to be really careful not to get angry, because then people will think that we're crazy, and not want to do research on our illness. I think this is quite unlikely. People do research on an illness because there is funding, not because they like the patients. And the funding comes because somebody expects to make money from it, and nowhere else. Suppose, just suppose, that someone wants to quote my remarks about Alan Dove somewhere. If they try to say that proves something about all CFS patients, I can't see how that proves anything to anyone who isn't a fool. If someone quoted me, what I have to say about Alan Dove won't really do him much good -- and that's my intention. I would really like Racaniello to consider what I have to say, and reconsider his friendship/professional relationship with Dove. He may not be convinced by one letter, but a lot of angry letters might do it. Letters that suggest Dr. Dove simply needs to educate himself on CFS won't do anything to show Racaniello why Dove's behavior on the show and (even more so) statements in his blog were outrageous and offensive.

    More generally, again, I think CFS patients need to respond to people like Alan Dove -- fiercely, even outrageously, offensively, or shockingly, both as a means of getting attention, and debunking the propaganda about our illness. I'm saying we need to attack those people relentlessly and expose any underhandedness. We need to embarrass and humiliate them. They are harming us, quite directly, and I am not going to take it anymore.
     
  5. parvofighter

    parvofighter Senior Member

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    Diff'rent Strokes

    HEALTH ADVOCACY ORGANIZATIONS INTENTIONALLY USE A WIDE RANGE OF STRATEGIES
    This discussion reminds me of an excellent presentation I saw once by a Canadian Rare Diseases organization. The chief executive of this organization was eloquently describing the reality that different strategies are needed at different times, and by different people, in different situations. In fact, "mixing it up" is essential.

    • When facing an imminently dying child who needs a certain type of blood product only available on the other side of the globe, an urgent, in-your-face approach is often necessary... or the child will quite simply die.
    • When medically collaborating with repeatedly uncooperative agencies, escalation - with an overt attempt to be SEEN by the media - is often the only recourse.
    • When describing a devastating illness that has been ignored for decades by the medical establishment, emotional overlay is unsurprising, indeed a natural response.
    NO REASON TO BE ASHAMED OF EMOTION RESULTING FROM A DEVASTATING AND NEGLECTED ILLNESS
    My experience at rare disorders conferences is that the testimony of patients, and indeed their loved ones - provided in a forum comprising government, industry, clinicians, researchers, and other patients, provides a dose of medical reality that is lacking in the clinical conferences I've attended.

    WHEN IS "BEING NICE" A HANDICAP?

    ME/CFS appears to strike people from all walks of life. However the preponderance of middle-aged women has me wondering... is it really necessary, indeed productive, to be "nice" all the time? If this were a male-dominated disease, would the patients keep intoning, "let's be nice"? Suzanne Vernon's comment that the CDC XMRV study was "designed not to find XMRV" is an example of appropriate edginess IMO.

    TELLING IT LIKE IT IS: WHAT WE'VE BEEN ASKING FOR!
    THIS is what we've been asking for! Tell it like it is! So identifying Alan's wife's profession, and her specific interest in psychosomatic medicine - after a heavily bias-laden interview on the part of Alan - is ENTIRELY germane to effective advocacy.

    I for one am not ashamed that this community is not emotionally robotic... and that it shows heart when describing the devastation of this illness, or in responding to bigotry. This is a healthy, normal reaction. That said, I totally agree that hard, cold reason and crystal clear scientific examples are beneficial in illuminating our points.

    SEEING THE FOREST FOR THE TREES
    Taken as a whole though, I see the comments about Alan's bias and his own vitriol against ME/CFS patients as something the media and Vince NEEDS to see, and that is why I continue to screencap this type of exchange. I would not at all be surprised if Dr Racaniello were mortified at Alan's progressively toxic outbursts, and deeply regretted including Alan - and his unscientific bias - on this program. I know that any of the high-level health execs and scientists that I used to work with would be.

    ILLUSTRATING BLATANT UNSCIENTIFIC BIAS

    I see the exchanges on TWIV about Alan's bias, and Alan's blog as a wonderful illustration of the blatant unscientific bias that us patients have been up against. Bringing up psychiatry was totally irrelevant to this TWIV episode. And the dialogue ensuing online will indeed provide wonderful grist for those investigative reporters. In fact, if it weren't for the online follow-up, Alan's true colors wouldn't have surfaced so starkly.

    MEDIA COVERAGE IS NECESSARY!
    In other words, the media SHOULD eat this up! If the following comments aren't mediagenic, I don't know what is:

    Alan:

    • Youre entitled to your beliefs. Just try not to step off any balconies.
    • 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.
    • Kim, regular TWiV listeners already know what my wife does for a living. Youre the only loser who had to waste three hours Google-stalking me to figure it out. Heres to your future graduation from the eighth grade
    • 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.
    Read that last caption again... Alan's saying this to patients who, as a result of medical neglect, now have neurological damage, viral cardiomyopathies, and known lymphomas. Would you repeat Alan's words to an MS, cancer, or heart attack patient? If Alan's words aren't mediagenic, I don't know what is.

    Bottom line, things will unfold as they do. There WILL be a balance of emotion, thoughtful reasoning, nerdy science, and good ol' smackdowns. This is not a monochromatic community, nor should it be. And taken as a whole, our voices simply tell it like it is.
     
  6. Robyn

    Robyn *****

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    Alan:

    •You’re entitled to your beliefs. Just try not to step off any balconies.
    •The comments so far are pretty much what I expected to hear: I’m an idiot, people are suffering, the science is already settled, and a CDC-based conspiracy is suppressing the truth.
    •Kim, regular TWiV listeners already know what my wife does for a living. You’re the only loser who had to waste three hours Google-stalking me to figure it out. Here’s to your future graduation from the eighth grade
    •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.

    The above sounds like a temper tantrum to me. I guess now he too can see how it feels to be judged? This must have been how MS patients felt knowing they were truly ill. Yet being told they have hysterical paralysis. At least the scientist's had a good reason back then. It was called lack of knowledge. There is no excuse for this behavior now. Hey fella's there are actually microbes in the world that cause disease. You just have to find them and not have a closed mind. Hey does anyone know where that H1N1 pandemic went? Well there's a new, actually old one in town that cripples it's victims for life. Better hurry and figure it out. It's already been running rampant and most likely in the blood supply for the last 25 years or so.
     
  7. kdeneris

    kdeneris

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    Thanks, Parvofighter. I totally agree with every one of your very readable points. (Thanks for the headings!) I see in your post that he really did read my comments, and I'm honestly thrilled to be addressed by name. I find it amusing he can't stop the sexist language from pouring out of him: the CFS Poster Child emerges, and she is a crazy, fat, middle-aged, balcony-jumping, google-stalking...seventh grade drop-out?)

    I'm glad it landed, Alan. I'll be posting soon.

    Going after Alan's wife: He brought her into studio. There was no reason whatsoever to keep discussing psychiatry while interviewing a retrovirologist studying XMRV and Prostate cancer. He was actively promoting his wife's interests. He also does not mention her specialty on his blog, where he outdid himself in making offensive remarks.

    Then I found out her specialty was psychosomatic medicine, or people who supposedly aren't sick but just think they are, In other words, she goes around trying to prove that people aren't sick, and you can't really prove a negative. This leads me to conclude that there has not been a single case of objectively verifiable psychosomatic illness in the history of the world. Thus, to the conclusion that all practitioners of "psychosomatic medicine" are quacks. Simple logic.

    This was the second, and quite possibly the last time, that I will listen to TWIV. XMRV is a serious issue, and I want to hear about it from someone who isn't a hack.
     
  8. HowToEscape?

    HowToEscape? Senior Member

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    Amen and thank you. Diplomacy does not mean venting whatever one feels whenever one feels it, and diplomacy is required.

    Internet snark exchanges are so '70s.
     
  9. Robyn

    Robyn *****

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    Yeah well I guess it's not above science blogs either.
     
  10. HowToEscape?

    HowToEscape? Senior Member

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    "you can't really prove a negative. This leads me to conclude that there has not been a single case of objectively verifiable psychosomatic illness in the history of the world. Thus, to the conclusion that all practitioners of "psychosomatic medicine" are quacks. Simple logic. "

    Simple, but not logic.
    Some practioners of x = quacks, thus all practioners of x = quacks ====> No.
    X relies on a diagnosis via exclusion, and one cannot prove a negative, thus x = quackery ===> Logical sounding phrase applied to non-logical object.

    -- Sounds nice, but is not logical. Psych som med does not equal "you just think you are sick". It can be abused into that in practice but this is not the meaning. Diagnoses are not logical proofs, they're based on physical observation. They don't need to be proved 100% correct, they need only be good enough to spur an intervention that allows the patient's body to return to normal functioning.
    This particular X is by its nature ripe for quackery, but that does not equate to all practitioners of x=quacks. By the same sort of almost logic, one could say that there is no actual disease in CFS, "because there is no accepted test" and "it is a diagnosis of exclusion". Check who has been using that type of argument.
     
  11. kdeneris

    kdeneris

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    I'm not advocating for diplomacy. Why should it be required? By whom is it required?

    There was no functional internet in the 1970s that permitted anything but the exchange of books in University libraries, and some information in the military. Not much room for snark, etc., which should at least suggest to us that the internet might offer some really new and different opportunities for political action. Not all political action is or should be of a diplomatic nature.
     
  12. Robyn

    Robyn *****

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    All diseases at one point had no accepted test in the beginning. That's what is called research. That's exactly what happened with MS, Parkinson's, and epilepsy just to name a few. There was no test in the beginning so what did they do? Blame it as being a mental condition and lock people up? Until it's finally figured out. Now I wonder just how many people suffered at the hands of other unknowing and uncaring human beings. If it were their mother, sister, child, father, or brother who were to become stricken I'm sure they would see this differently. At least there are some doctors and scientists out there that do? Because they've seen what this disease is doing. They've seen their patients ill and never recover. For years, and after trying everything imaginable. Nothing worked because they hadn't found the answer. If they had wouldn't at least some of us have recovered? I would think so. Rather than passing judgement on a group of very ill humans some should actually look into it. For it could be their family that is next.
     
  13. kdeneris

    kdeneris

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    I applied a valid logical argument to the problem of quackery and psychosomatic medicine. If All psychosomatic medicine practitioners are quacks, and Dr. X is a psychosomatic practitioner, then the conclusion is valid: Dr. X must be a quack. Just as I can't prove the following negative, "CFS patients are not crazy and delusional," Dr. X cannot prove that "CFS patients do not suffer from biomedical illness." I am parodying the "simple" logic of those who think we suffer from a 21st century version of hysteria,

    It's not "almost" logic. There's nothing wrong with my syllogism, but I agree that it's ridiculous to apply deductive thinking to a problem that requires inductive thinking, and additional evidence to reach any reasonable conclusion. I was making fun of the psychosomatic medicine practitioners, who can't find any evidence of illness, and for whom CFS is (wrongly) a diagnosis of exclusion of any actual disease.

    You are free to disagree with my premise, that all psychosomatic medicine practitioners are quacks, but the structure of my argument is completely valid.

    There really isn't any objective evidence for the existence of psychosomatic illness. You are correct to say that a lack of a biomarker is a problem for CFS patients, too, but I don't expect that situation to continue. We need a biomarker, something measurable. I am fairly sure there will never be a biomarker for psychosomatic illness -- because it doesn't exist except as a label to describe otherwise unexplained symptoms. It doesn't exist in the way that diabetes or high blood pressure exist. Psychosomatic illness is by definition a diagnosis of exclusion. Specializing in psychosomatic medicine is like saying you specialize in medical failure, or you want to study the limits of medical curiosity. I am extremely skeptical that sick people benefit from being labeled as psychosomatically ill, especially since the label often results in the refusal of further medical care. So while I agree that diagnoses are not established through logical proofs (except in quack world) I disagree that psychosomatic medicine practitioners are actually making anyone any better by labeling them. They are like the people --phremenologists?-- who used feel the bumps on your head, and measure the space between your eyes to determine whether or not you are a social deviant. Or the people who used to drill holes in patients' skulls -- trephination, it's called -- to let out the evil spirits. I don't doubt some of those people felt better afterward, but it's still hard to argue any actual benefit to them.
     
  14. V99

    V99 *****

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    There a quiet a few doctors who say we already have biomarkers. When used in combination we can already subgroup patients, and more importantly treat them. So why are Givernments not using them.
     
  15. maryb

    maryb iherb code TAK122

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  16. Levi

    Levi Senior Member

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    Look on the bright side . . .

    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.
     
  17. urbantravels

    urbantravels disjecta membra

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    Excellent plan! It should only take a couple of decades to fulfil.
     
  18. Snow Leopard

    Snow Leopard Senior Member

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    Well said.

    We should not attack personally, those who disagree with us. We usually have some common ground too - most people agree there is a lack of research. So the point we need to keep on repeating is the fact that CFS causes major damage to western economies (see Jason et al.), but yet governments spend almost no money on research. The message is that CFS research will have more significant economic benefits than many other diseases.
     
  19. Robyn

    Robyn *****

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    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  20. Navid

    Navid Senior Member

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    hurrah!!! hurrah!!! hurrah!!!
    i agree whole-heartedly!!!!
     

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