Saturday, 10 March 2012

Losing the debate on social media

I lost a debate yesterday that I was very keen to win. It was at our UK MS Debating Society meeting; it was our 10th anniversary of holding this meeting so it would have been good to win. 

I was debating the motion that "Neurologists should engage with social networks to help prevent a further media farce as seen with CCSVI"; in this context social networks is referring to web-based social networking sites, for example Twitter, Facebook, Blogs, Wikipedia, Wikis, Websites, etc. My opponent was Dr Colin Mumford from Edinburgh. Rather than focus on CCSVI I used the HIV/AIDS denialism as my main theme to illustrate the complex social aspects of how these anti-science movements start, propogate and cause so much damage. In South Africa, HIV denialism has resulted in over 300 million unnecessary deaths and countless HIV infections that could have been avoided. This is orders of magnitude greater than the morbidity and mortality that CCSVI has caused.

A particularly interesting reference I came across when preparing the debate was a new book "The AIDS Conspiracy: Science Fights Back" by Nicoli Nattrass from the University of Cape Town. Nicoli makes the point that there are four types of AIDS denialist:

1.The ‘dissident scientist’ who lends credibility
2.The ‘cultropreneur’ who peddles quack therapies
3.The ‘living icon’ or ‘long-term survivor’
4.The ‘praise-singer’ or ‘journalist’ or ‘politician’ who sows doubt about HIV causing AIDS

In addition to this there is the wider HIV/AIDS community with their activists, community organiser, easy access to the media and their use of conspiracy theories to attack the scientists. In relation to HIV/AIDS the conspiracy theory was targeted at Western governments, who were accused of creating the HIV virus to wipe our blacks, homosexuals and drug addicts. 

If you are close to the CCSVI story you can appreciate the similarities, including the conspiracy theories. 

To lighten the message and overall feel of the debate, which was quite serious, I made a short animation to illustrate some of the issues neurologists have with CCSVI and the frustrations of MS'ers with the current situation. This animation went down very well even to amusement of Professor Jeremy Hobart, who is the international leader in patient-related MS outcome measures, and Dr Colin Mumford my competitor. They have both given me verbal permission to upload the video onto YouTube.


CoI: Nil

23 comments:

  1. This animation should have convinced everybody. What were the arguments against social media?

    A big difference between CCSVI and HIV/AIDS is that many people try CCSVI because proper neurology has nothing for them (as in PPMS) or nothing more (already tried everything).

    ReplyDelete
  2. I didn't 'try' CCSVI. I read the science behind the venous history of MS ranging from Carswell and Cruveilhier in the 1830s through to Tallantyre et al in 2008. The venous anatomy defines the typical form and orientation of MS lesions.

    Concrete post mortem observations confirm this - I do not understand why MS 'science' does not address facts which have been around for over 170 years.

    I chose NOT to take any immune altering MS drug because the work of 2009 Charcot Prize Winner, Professor Prineas described how oligodendrocyte apoptosis occurs in MS lesions PRIOR to any evidence of inflammation. So I could not find a rationale for altering my immune system.

    On balance the post mortem evidence and Professor Prineas won the day over vague claims of MS being an 'autoimmune' disease.

    The improvement in my own health following treatment for venous insufficiency has confirmed my rationale. The procedure is low risk. Venoplasty is already performed in UK hospitals as a 'day case' procedure.

    Regarding 'validation' it is a funny thought that Gruentzig introduced angioplasty in the 1970s and it was adopted into the mainstream almost immediately.

    Treatment for CCSVI is a procedure. IRs and surgeons will tell you procedures evolve. As about 30,000 of us have been treated for venous insufficiency the debate has moved on somewhat from discussions about Facebook. Though social media certainly makes it easier to find links to ALL the science behind MS.

    I think the portrayal of all us MS patients being simpering and desperate is a mistake.

    ReplyDelete
  3. How long is a piece of string

    Twice the distance from the middle to the end

    ReplyDelete
  4. Surely this debate has been around long enough for 'the ruler' to have been calibrated by now, ie much longer than the 6 months referred to in the video? I realise that the 6 months may be an arbitrary figure and might be longer or shorter (much like a piece of string!)
    Surely you can understand why people who see the procedure for repairing venous insufficiency as relatively benign and a risk worth taking? I haven't personally gone down this road but can quite understand why other people have.

    ReplyDelete
  5. This debate had nothing to do with CCSVI, but rather the use of social media to combat bad science and the denialism of informed scientific opinion. If clinicians and scientists engaged in social media would the be able to help discredit the ‘dissident scientist’ and the 'cultropreneur’, explain the ‘living icon’ or ‘long-term survivor’ and neutralise the ‘praise-singer’ or ‘journalist’ or ‘politician’ who sows the doubt? I argued that if want to save lives and save money we should. My competitor argued to do this via the established media and reputable channels. My be he is correct!

    ReplyDelete
  6. Gav, it's probably poor cover that worries the loop, aka controlled & tiered arguments.

    UK liasing with Rensselaer or wherever aggrivating those displaying symptoms of depression?

    First do no harm?

    Nice penguins by the way.

    ReplyDelete
  7. Hi Prof Giovannoni


    just wanted to pass on a message from Ryan and all our family and say we will be in touch in the coming days with a package of resources for you and your team to help in the battle to end MS .


    thanks for all your hard woirk

    Alan

    ReplyDelete
  8. Dear Jeff
    A wise old scientist once said "Anecdotal data is no data" as right today as it was then.
    "I think you would do well to take your head from your buttocks and listen to the people who have had the procedure instead of wasting time tweeting about what rubbish it is."
    I suspect you're jealous at the amazing flexibility of Prof G who can perform such an unlikely manoeuvre as a result of a rigorous regime of ayurvedic yoga under the tutelage of his guru MouseDoctor.
    As the impressive list of supporters is completely in the open, his legion of followers can make up their own mind, as I'm sure you have. He has nothing to hide. Do you?

    ReplyDelete
  9. Jeff,

    Prof G's never said that Google Trends proved anything about the scientific validity of CCSVI. Given the social media aspect of CCSVI, he used Google Trends to determine the extent of this phenomenon and used the data collected as evidence that CCSVI AS A SOCIAL MEDIA PHENOMENON is on the decline. If Google Trends showed an increase in searches for homeopathy, does that prove homeopathy is a scientifically valid treatment? No, it only proves that more people are Googling for homeopathy information. It proves nothing about the validity of homeopathy as a medical treatment. Scientists have long had a method for verifying the validity of medical treatments.

    As to Alison's post, and since personal anecdotes are paramount to evidence in your crowd, I'll give you my story. Four years ago I became bedridden after my first attack knocked me out cold and left me completely paralyzed (which I realized upon waking up). I was sent to a rehab hospital in hopes that I would be able to recover some functionality but no one there could tell me if I'd be able to walk again. Long story short, I was able to walk out of the rehab hospital using a walker. Several months later, I was fully ambulatory. I haven't experienced another relapse since then and the results of my last MRI (which I had last week) show no new lesions and no activity. Is my experience evidence that CCSVI is a crock (after all, veins don't just magically unblock themselves)? If not, why not and what does that say about Alison's (or anyone else's) personal experiences? I imagine Prof G would respond to Alison's experience the same way he would to mine.

    As for conflicts of interests (CoIs), everyone has them. In fact, one could argue that we both have the biggest CoI of all. CoI's can become a real issue when they are not declared. This is why Andrew Wakefield is not only seen as a crappy researcher, but a fraudulent one as well. He did not disclose that he was working on creating a "safer" MMR vaccine and thereby stood to profit from the very MMR vaccine controversy he created.

    BTW, Zamboni himself created an ultrasound machine that supposedly can detect CCSVI and had it patented BEFORE he publicly announced his discovery. However, he did not disclose this CoI in at least three of his published papers: http://news.nationalpost.com/2011/04/02/zamboni-says-no-con%EF%AC%82ict-in-applying-for-ms-patents/

    It does nothing to further your cause when you resort to attacking skeptics (be they medical researchers or other MSers) with infantile remarks. Not only does it put others off, you wind up reinforcing the negative views about CCSVI activists that the "non-believers" have.

    ReplyDelete
  10. "show no new lesions and no activity"

    That's good news. But why do you think the immune system or the causative virus got silent after such a severe first attack? Are you experiencing some kind of deterioration that is not caught in MRI?

    "after all, veins don't just magically unblock themselves"

    Relevant venous malformations are mostly valvular. Abnormal valves create the necessary ground for transient phenomena. Furthermore, totally normal veins of the neck can get completely blocked by external pressure from neck muscles during simple head movements. Am i right in reasoning that you get dizzy or out of balance when you turn your head far up and back?

    ReplyDelete
  11. MSers (or whatever you call us) are using social media. If neuros don't engage with us there, there'll be a vacuum where their points of view might have been. Traditional media is often reduced to sound bites and doesn't lend itself to conversation. Many people don't look to mainstream media for their MS info. Unlike in Canada, CCSVI hasn't gotten much mainstream media coverage in the U.S. so the discussion is occurring on other channels.

    It seems to me that there is a strong desire among many people with MS to interact with knowledgeable and compassionate neuros. Patient forums are wonderful for moral support and practical advice, but on technical matters the information given varies greatly in quality. Of course, on many points of interest there is only opinion and conjecture and neuros don't all agree, but nevertheless the insights of a good neuro would be an invaluable contribution. I get 15 minutes with my neuro every six months so you can imagine how many questions I get answered.

    What would a skillful response to CCSVI using social media look like? It's probably pointless to go to a hardcore CCSVI site or engage with CCSVI proponents who aren't interested in dialogue and won't listen to anything that doesn't agree with their existing views. There are also people who have already decided that CCSVI is bunk. However, I suspect there are a huge number of patients in the middle, neither convinced nor outright dismissive, who are waiting to see where this goes. They are the ones who need to hear the neuro perspective to balance out the relentless shouting of the CCSVI lobby.

    I see this as the benefit of your responding to VV's comments. It's unlikely that he'll change your minds or that you'll change his. But many other people, with less committed opinions, are also reading your responses.

    Not every neuro should be communicating via social media. (Frankly, not every neuro should be allowed to interact with patients.) Social media do have significant disadvantages for neuros. Social media are economically unremunerative and likely to be psychologically stressful. Interacting with patients in this way does require a thick skin. Even leaving CCSVI out of the equation, there are plenty of examples on this blog of people misdirecting their frustrations at Prof G and MouseDoctor.

    There are going to be communication hiccups, also seen on this blog, but honest and respectful communication in good faith can go a long way to improving understanding on both sides. I imagine that Prof G has learned some things from these conversations that will inform his future interactions with patients.

    There are definitely wrong ways to communicate.

    Early on in the CCSVI wars, there was a neuro who was quoted in the mainstream media as saying that "if I can do anything to protect MS patients from the potentially devastating effects of false hopes or the risks of invasive and unproven treatment, I am happy to do so." Regardless of the truth value of this statement (and it's surely true that more than one person with MS spent money they didn't have on a CCSVI procedure that didn't work without fully investigating what they were getting themselves into), the comment comes across as condescending and is likely to rankle the MSers who are (or consider themselves) more informed. The subtext seems to be "I, the all-knowing neurologist, am going to save you stupid, foolish patients from yourselves."...

    ReplyDelete
  12. It's important to try to anticipate how your comments will appear to MSers. For a while on a site I visit, they had a feature where a neuro took questions. This didn't work out for various reasons and one was that he occasionally had a tin ear. The example that struck me was a woman who wrote in about her relatively minor symptoms and concerns about MS. The neuro responded with a clever remark thanking the woman for teaching us all the hazards of googling your symptoms. That may be true, but how did that answer help the woman asking the question? This response also isn't likely to play well with an audience of people who have either themselves been perfunctorily dismissed by neuros and/or told not to look anything up about their medical problems on the Internet or who know someone who, despite real problems, has been thus dismissed.

    Like many MSers, I don't have a scientific or medical background. I can look at studies and make some assessments about the logic of the argument presented, but I can't say if they're biologically plausible. For many of us looking from the outside in, the CCSVI debate boils down to he-said, she-said and the neurological community's quick and absolute dismissal can come across as closed-minded.

    There is an interesting thread primarily about MSers' reactions to their neurologists' responses to CCSVI on about.com. I thought this response was an example of the kind of response patients hope for:

    "As a Program Coordinator for a major MS Center this subject comes up quite a bit. Our Director is both a Vascular Neurologist and MS Specialist. He is very open minded and not condescending about the procedure, and would like to see more research data and efficacy associated with the procedure. We have had patient’s who have the procedure done, and so far I have heard some positive results. There have not been miraculous cures or dramatic symptomatic changes in cases I know of. Our fear is the MS patient who is taken advantage of, promised unrealistic results, and possibly charged a huge sum of money if insurance does not cover the procedure. We would LOVE for the procedure to work for our patients. And we will wait to see how the results from clinical trials goes before formulating an opinion on this. There is no sense in degrading a patient who is hopeful for cure. Those who feel that their neurologist is degrading should find a kind, compassionate physician, who will consider all options."

    http://ms.about.com/b/2011/03/22/neurologists-responses-to-ccsvi.htm



    I don't think it's helpful to paint CCSVI advocates or doctors who are performing CCSVI procedures as evil. It may turn out that they are misguided, but I think most of them believe in what they are doing and are not intentionally trying to fleece MSers. It does seem like interventional radiology has a very different culture from neurology. For one thing, there doesn't seem to be a strong tradition of rigorous clinical trials in interventional radiology as there has been in MS research. "The lack of randomized, controlled trials (RCT) for interventional radiology (IR) is one of the major problems of IR, which has been discussed for many years" (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3058757/)...

    ReplyDelete
  13. I hope this won't get me kicked of this blog, but I have had a CCSVI procedure. From my perspective, my neuros at the time did not react to this very skillfully, although to be fair it was clearly a hot button issue for them, too. I wish they had kept their anger and their snarky comments to themselves and behaved with more compassion and professionalism. I felt like they took their anger out on me inappropriately and in the end I was left with the feeling that they were not on my side.

    Clearly they thought I was an idiot for doing this. They are entitled to that opinion. They may even be right. However, life isn't fair and it seems to me that doctors have an obligation to take the high road in situations like this. In the real world, physicians have to have a plan for dealing with idiot patients because they're surely going to encounter them.

    In my mind, I contrast my experiences with those described by a former pediatrician with MS who I met on an MS site. She is a very strong advocate of vaccination, having seen unvaccinated children die of what should have been preventable illnesses. When discussions about this come up, she is a passionate, knowledgeable and effective advocate for her views. Her impact is bolstered by the fact that she expresses herself from a place of caring and concern and had earned the respect of the community (all things that neuros using social media should emulate but not the point I want to make here).

    She sometimes had parents in her practice who refused to vaccinate their children. Morally, she felt like she could not condone that so she could not continue to be the children's doctor. However, she told the parents this with compassion and regret and helped them find a new pediatrician.

    Melanie Thernstrom in her book The Pain Chronicles talks about interactions between doctors and patients. She sat in on appointments with well-known pain specialists and their patients. She clearly liked and respected the doctors and thought they were knowledgeable and committed to helping their patients. However, when she talked to the patients after the appointments, she found that there was a real disconnect between the patients' and the doctors' perception of what had happened. She always asked the patient what the diagnosis was and if they thought the doctor wanted to them to get well. She found that

    "The patient did not understand the diagnosis. The patient did not believe the diagnosis. The patient was not certain that the doctor cared whether she or he got better--and on that lack of certainty, everything somehow foundered" (p. 210-211).

    She often felt that potential treatments failed due to lack of patient buy-in. She asks what the doctor could have done differently in one particular situation where a patient rejected the proffered treatment. He had a treatment that only might work and he was honest about that. Did he need to use all his powers of personality, charm, empathy, expertise, and authority to persuade her that the treatment, although imperfect, was her only hope? She contrasted that doctor's approach with the appeal of practitioners of alternative medicine who seemed to offer little in the way of sound treatment, but always seemed to have some kind of personal power to evoke belief and their patients actually followed their suggestions (p. 213). This sounds a little like some of Prof G's frustrations. It is unclear to me how to resolve this tension...

    ReplyDelete
  14. It seems to me that it's not helpful for neuros to gloat when CCSVI research doesn't pan out or if it does turn out not to be supported by clinical trials. It's a disappointment for MSers when any potential treatment fails. MS may not be so simple as venous insufficiency, but we all hope that it might be.

    Nor does it help to stoop to name calling. Unfortunately, some in the CCSVI community do choose to resort to personal attacks and harassment, as is demonstrated by the recently-posted letter, but I don't think this sort of behavior helps either side in the big picture.

    It seems to me that it could be helpful for neuros to make their points of frustration clear in a non-provocative way. It's legitimate to express skepticism and recommend that patients wait for the results of clinical trials. It's also reasonable to convey unhappiness with the amount of attention and money being devoted to CCSVI when the neuro community clearly feels that other possibilities have more potential.

    I find this description of how Carl Sagan dealt with those who choose to ignore scientific evidence something to aspire to, although he sets a higher bar than I can meet:

    "And six months later a letter came from the 'creation scientist' expert who had also testified that day, saying that he had given up his daytime job and realized the error of what he was doing. It was only because Carl was so patient and so willing to hear the other person out. He did it with such kindness and then, very gently but without compromising, laid out all of the things that were wrong with what this guy thought was true. That is a lesson that I wish that all of us in our effort to promote skepticism could learn, because I know that very often the anger I feel when confronting this kind of thinking makes me want to start cutting off the other person. But to do so is to abandon all hope of changing minds." (http://blogs.discovermagazine.com/cosmicvariance/2012/03/19/sagan-and-druyan-shared-time-in-the-cosmos/)

    It is unfortunate that some in the CCSVI lobby choose to spend time insulting and harassing neuros. I imagine it is very unpleasant to be on the receiving end of that negative energy, especially for neuros and researchers who have wholeheartedly devoted their professional lives to helping people with MS. It is unclear to me what the proponents of CCSVI think they will gain with this approach.

    I hope that we will soon see clear results from well-designed trials and then we will know whether or not to continue investing in CCSVI. MSers are desperate for new ideas and approaches. We need game-changers, not just me-too almost identical copycat drugs. We are frustrated with the slow pace of progress and CCSVI shows what can happen when that pent-up frustration and energy are unleashed. However, it's detrimental to us all if there is a rift between the neuro and the MSer community or within the MSer community. We need trust and unity behind the goal of ending MS rather than dissipating our powers on conflict and name-calling. So that's my long-winded and jumbled commentary on why I think Prof. G. should have won the debate and how I would approach social media if I were a neuro.

    ReplyDelete
  15. [There were some other parts to my comment which don't seem to have gone through so I'm trying again]

    MSers (or whatever you call us) are using social media. If neuros don't engage with us there, there'll be a vacuum where their points of view might have been. Traditional media is often reduced to sound bites and doesn't lend itself to conversation. Many people don't look to mainstream media for their MS info. Unlike in Canada, CCSVI hasn't gotten much mainstream media coverage in the U.S. so the discussion is occurring on other channels.

    It seems to me that there is a strong desire among many people with MS to interact with knowledgeable and compassionate neuros. Patient forums are wonderful for moral support and practical advice, but on technical matters the information given varies greatly in quality. Of course, on many points of interest there is only opinion and conjecture and neuros don't all agree, but nevertheless the insights of a good neuro would be an invaluable contribution. I get 15 minutes with my neuro every six months so you can imagine how many questions I get answered.

    What would a skillful response to CCSVI using social media look like? It's probably pointless to go to a hardcore CCSVI site or engage with CCSVI proponents who aren't interested in dialogue and won't listen to anything that doesn't agree with their existing views. There are also people who have already decided that CCSVI is bunk. However, I suspect there are a huge number of patients in the middle, neither convinced nor outright dismissive, who are waiting to see where this goes. They are the ones who need to hear the neuro perspective to balance out the relentless shouting of the CCSVI lobby.

    I see this as the benefit of your responding to VV's comments. It's unlikely that he'll change your minds or that you'll change his. But many other people, with less committed opinions, are also reading your responses.

    Not every neuro should be communicating via social media. (Frankly, not every neuro should be allowed to interact with patients.) Social media do have significant disadvantages for neuros. Social media are economically unremunerative and likely to be psychologically stressful. Interacting with patients in this way does require a thick skin. Even leaving CCSVI out of the equation, there are plenty of examples on this blog of people misdirecting their frustrations at Prof G and MouseDoctor.

    There are going to be communication hiccups, also seen on this blog, but honest and respectful communication in good faith can go a long way to improving understanding on both sides. I imagine that Prof G has learned some things from these conversations that will inform his future interactions with patients.

    There are definitely wrong ways to communicate.

    Early on in the CCSVI wars, there was a neuro who was quoted in the mainstream media as saying that "if I can do anything to protect MS patients from the potentially devastating effects of false hopes or the risks of invasive and unproven treatment, I am happy to do so." Regardless of the truth value of this statement (and it's surely true that more than one person with MS spent money they didn't have on a CCSVI procedure that didn't work without fully investigating what they were getting themselves into), the comment comes across as condescending and is likely to rankle the MSers who are (or consider themselves) more informed. The subtext seems to be "I, the all-knowing neurologist, am going to save you stupid, foolish patients from yourselves."...

    ReplyDelete
  16. It's important to try to anticipate how your comments will appear to MSers. For a while on a site I visit, they had a feature where a neuro took questions. This didn't work out for various reasons and one was that he occasionally had a tin ear. The example that struck me was a woman who wrote in about her relatively minor symptoms and concerns about MS. The neuro responded with a clever remark thanking the woman for teaching us all the hazards of googling your symptoms. That may be true, but how did that answer help the woman asking the question? This response also isn't likely to play well with an audience of people who have either themselves been perfunctorily dismissed by neuros and/or told not to look anything up about their medical problems on the Internet or who know someone who, despite real problems, has been thus dismissed.

    Like many MSers, I don't have a scientific or medical background. I can look at studies and make some assessments about the logic of the argument presented, but I can't say if they're biologically plausible. For many of us looking from the outside in, the CCSVI debate boils down to he-said, she-said and the neurological community's quick and absolute dismissal can come across as closed-minded.

    There is an interesting thread primarily about MSers' reactions to their neurologists' responses to CCSVI on about.com. I thought this response was an example of the kind of response patients hope for:

    "As a Program Coordinator for a major MS Center this subject comes up quite a bit. Our Director is both a Vascular Neurologist and MS Specialist. He is very open minded and not condescending about the procedure, and would like to see more research data and efficacy associated with the procedure. We have had patient’s who have the procedure done, and so far I have heard some positive results. There have not been miraculous cures or dramatic symptomatic changes in cases I know of. Our fear is the MS patient who is taken advantage of, promised unrealistic results, and possibly charged a huge sum of money if insurance does not cover the procedure. We would LOVE for the procedure to work for our patients. And we will wait to see how the results from clinical trials goes before formulating an opinion on this. There is no sense in degrading a patient who is hopeful for cure. Those who feel that their neurologist is degrading should find a kind, compassionate physician, who will consider all options."

    http://ms.about.com/b/2011/03/22/neurologists-responses-to-ccsvi.htm



    I don't think it's helpful to paint CCSVI advocates or doctors who are performing CCSVI procedures as evil. It may turn out that they are misguided, but I think most of them believe in what they are doing and are not intentionally trying to fleece MSers. It does seem like interventional radiology has a very different culture from neurology. For one thing, there doesn't seem to be a strong tradition of rigorous clinical trials in interventional radiology as there has been in MS research. "The lack of randomized, controlled trials (RCT) for interventional radiology (IR) is one of the major problems of IR, which has been discussed for many years" (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3058757/)...

    ReplyDelete
  17. The outcomes of angioplasty or stenting also look a lot more clear cut than the outcomes of MS trials. It's really tempting to look at the blocked flow and think that unblocking it is the fix (http://www.healthbeatblog.com/2011/05/time-to-stop-resolutely-ignoring-medical-evidence.html). However, sometimes life is not so simple. When a controlled trial was done comparing stents and angioplasty versus optimal medical therapy (modest lifestyle changes plus anti-platelet, blood pressure-lowering, and cholesterol-lowering medications), they found that for people with stable heart disease, the medicine and lifestyle approach worked as well as or better than the more aggressive, technological interventions (http://www.nejm.org/doi/full/10.1056/NEJMoa070829 seems to be the most famous example of this)

    Current thinking seems to be more along the lines of…

    "Heart attacks are not caused by a stable plaque that gradually grows to block an artery. Instead, they are caused by a plaque that partially ruptures, thus causing the sudden formation of a blood clot inside the artery, which then suddenly blocks the artery. Rupturing and clotting is probably just as likely to happen in a plaque that is blocking only 10 percent of the artery as in one that is blocking 80 percent… Preventing the acute rupture of plaques, and thus preventing heart attacks, is looking more and more like a medical problem instead of a 'plumbing problem' -- and a problem best treated with drugs and lifestyle changes."
    --http://heartdisease.about.com/od/angioplastystents/a/courage.htm

    So even if there is a venous problem in MS, perhaps the solution is not so simple as unclogging the pipes.

    However, what appears to be a quick, easy, common-sense fix is still very tempting and more widely used than the data would seem to justify (http://harvardpartnersinternational.staywellsolutionsonline.com/HealthNewsLetters/69,H0911a http://www.kevinmd.com/blog/2011/08/decision-aids-angioplasty-stents.html)

    Wheelchair Kamikaze has pointed out on his blog on more than one occasion that we don't know what a normal CNS venous system looks like. "Moreover, unlike the anatomy of arteries associated with the CNS, which is well-known and displays uniformity from patient to patient, the CNS venous system is much less understood. Venous anatomy can differ markedly from patient to patient, making it difficult to define exactly what 'normal' looks like" (http://www.wheelchairkamikaze.com/2010/02/buffalo-ccsvi-study-results-revealed.html)

    He has been following CCSVI developments closely and periodically does thoughtful and open-minded updates. The latest one is at http://www.wheelchairkamikaze.com/2012/02/ccsvi-three-years-on-some-thoughts-and.html

    I have also been influenced by Jonah Lehrer's writing on what he calls the "mysterious decline effect" (http://www.newyorker.com/reporting/2010/12/13/101213fa_fact_lehrer and http://www.wired.com/wiredscience/2010/12/the-mysterious-decline-effect/) where he discusses problems with data reproducibility in science that can't really be chalked up to anybody's fault. He discusses things like regression to the mean, selective reporting/shoehorning, publication bias for positive results, and randomness.

    Lehrer also talks about the way "scientific observations can be shaped by our expectations and desires." It's certainly easy to get this impression reading many of the studies on MRV and Doppler assessment of CCSVI; it often appears that the researchers got whatever conclusions they were looking for...

    ReplyDelete
  18. I hope this won't get me kicked of this blog, but I have had a CCSVI procedure. From my perspective, my neuros at the time did not react to this very skillfully, although to be fair it was clearly a hot button issue for them, too. I wish they had kept their anger and their snarky comments to themselves and behaved with more compassion and professionalism. I felt like they took their anger out on me inappropriately and in the end I was left with the feeling that they were not on my side.

    Clearly they thought I was an idiot for doing this. They are entitled to that opinion. They may even be right. However, life isn't fair and it seems to me that doctors have an obligation to take the high road in situations like this. In the real world, physicians have to have a plan for dealing with idiot patients because they're surely going to encounter them.

    In my mind, I contrast my experiences with those described by a former pediatrician with MS who I met on an MS site. She is a very strong advocate of vaccination, having seen unvaccinated children die of what should have been preventable illnesses. When discussions about this come up, she is a passionate, knowledgeable and effective advocate for her views. Her impact is bolstered by the fact that she expresses herself from a place of caring and concern and had earned the respect of the community (all things that neuros using social media should emulate but not the point I want to make here).

    She sometimes had parents in her practice who refused to vaccinate their children. Morally, she felt like she could not condone that so she could not continue to be the children's doctor. However, she told the parents this with compassion and regret and helped them find a new pediatrician.

    Melanie Thernstrom in her book The Pain Chronicles talks about interactions between doctors and patients. She sat in on appointments with well-known pain specialists and their patients. She clearly liked and respected the doctors and thought they were knowledgeable and committed to helping their patients. However, when she talked to the patients after the appointments, she found that there was a real disconnect between the patients' and the doctors' perception of what had happened. She always asked the patient what the diagnosis was and if they thought the doctor wanted to them to get well. She found that

    "The patient did not understand the diagnosis. The patient did not believe the diagnosis. The patient was not certain that the doctor cared whether she or he got better--and on that lack of certainty, everything somehow foundered" (p. 210-211).

    She often felt that potential treatments failed due to lack of patient buy-in. She asks what the doctor could have done differently in one particular situation where a patient rejected the proffered treatment. He had a treatment that only might work and he was honest about that. Did he need to use all his powers of personality, charm, empathy, expertise, and authority to persuade her that the treatment, although imperfect, was her only hope? She contrasted that doctor's approach with the appeal of practitioners of alternative medicine who seemed to offer little in the way of sound treatment, but always seemed to have some kind of personal power to evoke belief and their patients actually followed their suggestions (p. 213). This sounds a little like some of Prof G's frustrations. It is unclear to me how to resolve this tension...

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  19. Dear Unknown
    most of your posts ended up in the spam bin, nothing to do with us.

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  20. I hope this won't get me kicked of this blog, but I have had a CCSVI procedure.

    Of course this won't get you kicked off the blog. We respect your decision, whether we agree on don't agree with you path of treatment

    My current view is based on my take of the evidence and that changes as evidence changes.

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  21. @MouseDoc

    Thanks for the helpful replies.

    Didn't think you were censoring and forgot about the spam filter. Just thought I'd messed up the commenting process or the openID thing (which I obviously didn't get completely right as I hadn't picked Unknown as a screen name)

    Now I have too many posts and all out of order. It was supposed to be

    1. MSers (or whatever you call us)
    2, It's important to try to anticipate
    3. The outcomes of angioplasty or stenting
    4. I hope this won't get me kicked of this blog
    5. It seems to me that it's not helpful for neuros

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  22. VV,

    "But why do you think the immune system or the causative virus got silent after such a severe first attack?"

    The body's immune system is never silent. B and T cells are contiuously being generated and dissipated throughout the body busily identifying and neutralizing antigens they encounter. That said, in the years after my first attack, I have gotten sick with whatever microbes my immune system had not previously encountered. So, I wouldn't say my immune system has been silent.

    If there is a causitive virus involved, virus latency may explain its silence.

    "Are you experiencing some kind of deterioration that is not caught in MRI?"

    I know that what's detected on the MRI doesn't always correlate with symptoms being experienced (if any). That said, no I haven't been experiencing any deterioration. In fact, my 2-minute walk time was better than the last one.

    Am i right in reasoning that you get dizzy or out of balance when you turn your head far up and back?

    You may be experiencing dizziness and imbalance. I don't.

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