Tuesday, March 29, 2011

12 Watching Train Wrecks

Every so once in a while, while surfing the net looking for other information related to tickborne infections, I come across blog entries about chronic Lyme disease that not only doubt its existence - but are followed by a firehose of troll-magnet comments from which I, in all my gory stupidity, cannot tear my eyes away.

Referring to the above linked blog post written two years ago, I just had to follow the train wreck to its decisive end: thread closing.

At least it wasn't deleted or moved elsewhere.

Seeing it was a reminder of one of the reasons I don't want ad hominem attacks on comments here. Once people go down that path, at that point they're usually talking past each other and writing parallel monologues anyway - trying to see which side can out-shout the other one.

Nobody is listening to each other at that point. It's not a dialog anymore.

I have to give one of the posters in the above thread credit for trying to explain their point of view - Janis, whoever you are, you posted some interesting research there - thank you.

And I give the primary antagonist on our doom-bound journey - Lance - the award for overlooking others' statements and arguing against something that Janis is not arguing about. Go... Lance... or something. Maybe... just go.

I saw both sides of their argument. I did. It was originally easier to read and see both sides, though, and as the ad hominem attacks and snap responses increased, the more I felt my blood pressure rise.

Lance was saying he thought that all the people who claimed they had chronic Lyme disease couldn't possibly have it, but eventually came across in a condescending manner about his point. Janis kept pointing out that you can't tell whether or not someone does, in fact, have chronic Lyme disease or not  - because they can be seronegative and the tests are unreliable. Lance countered back that he wasn't talking about people who have late stage Lyme disease - but all the people who didn't, had no evidence of infection, and yet claimed they had chronic Lyme disease - when it could have been something else. It continued on from there, with pretty much the same material repackaged in so many ways... Mostly increasingly antagonistic ways.

I can't tell you how many times I have read similar blog posts like the above and predictably know what the outcome is going to be before I even get to the first comment. And I know there will be a long list of completely polarized opinions there, and yet I read it anyway.

Alongside this compulsive behavior,  I suppose it's a healthy sign that I am always on the lookout for what I call the voice of reason - if there is any to be found. Comment #206 by the elusive Dutchman seems to be about the closest thing to the voice of reason.

Around it, there is a lot of chaos... Not to say that people aren't right about their opinion and experience within that chaos - it's just that it isn't very constructive because it ends up a shouting match.

About the one good thing about this is that it typically drives traffic to your web site - whoever the blog owner is probably got a lot of hits that day - just like the Chicago Tribune got a lot of hits for their "dubious diagnosis" article back in December.

Okay - maybe two: some readers of that thread have now been exposed to research that they otherwise would not have seen.

How can these exchanges continue otherwise? How do they get so polarized to begin with?

It doesn't help when one party responds to the other's points by number with 1) Lie, 2) Lie, 3) Lie, 4) Lie and distortion, etc. without clearly pointing out what it was they thought was a lie and what evidence they had to back their assertions. And on a bigger note, one of the problems underlying many of the comments is the fact that the term "chronic Lyme disease" as it has been used by the IDSA in recent years has been almost completely useless - and trying to use it in this thread only adds to the chaos.

After I read something like this, I usually shake my head and think, "What an utter waste of time that was." And I surf on to whatever it was I was originally looking for.

However, I can't shake the fact that every time one of these train wrecks lights up my screen that the same kinds of questions come up:

Why can't everyone take a closer look at all the research from all angles?

Why do they almost always end up with some ad hominem attacks?

Why can't more people have a meta discussion to break the contentious thread into something more constructive - such as why does the IDSA have such a useless and mutable definition for "chronic Lyme disease"?

Why not drive a very wide arc around this argument, bypassing it by asking about how patenting proteins in an organism could lead to issues in research?

How about imagining how much basic research would be conducted today if the Bayh-Dole Act hadn't been passed in 1980?

How about the unintended effects of such an Act on patenting, ethics, drug prices, and the increase in applied science projects?

Sure, these questions seem to become increasingly removed from the issue of persistence. But the point is pretty much laid out for all to see in the elusive Dutchman's comment itself:
"All Janis has kept saying is there needs to be a better test and more research. it seems to me that a lot of these patients are pushing for the same thing, more research, more reliable testing, and better treatment."
And that's just it. If people from both sides of this argument could agree on this much - then the rest of the arguments would eventually fade away.

Underlying the above comment, though, one has to look at what the pitfalls are and have been to getting better tests and research so far - and what can be done to change that situation. Because that is the underlying roadblock here, really, and nothing is going to change without it being addressed.

12 comments:

  1. C.O asked naively or perhaps rhetorically:

    ****Why can't everyone take a closer look at all the research from all angles?****

    Um, because they're just 'people'?

    Lately it might be because newer generations are so used to 'sound bites' from TV. And now the latest generation is reading FaceBook as their main source of information?

    ****Why not drive a very wide arc around this argument, bypassing it by asking about how patenting proteins in an organism could lead to issues in research?***

    That would mean that most people even know what a 'protein' is (except in a steak) or that they realize or care about 'issues in research'.

    ****How about imagining how much basic research would be conducted today if the Bayh-Dole Act hadn't been passed in 1980?*****

    Um, that's if they know or care about Bayh-Dole and don't think that Bayh was a mis-spelled 'bay' and that Dole was a brand of pineapple. (Yeah, that was snark)

    I have to applaud C.O. for the efforts made here. Really.

    ReplyDelete
  2. Hey cave76, you've been posting a lot of comments here lately - thanks for the interesting conversations.

    For anyone else reading: Feel free to jump in, anytime...

    Okay, some responses to your comments:

    You said,

    "Lately it might be because newer generations are so used to 'sound bites' from TV. And now the latest generation is reading FaceBook as their main source of information?"

    I don't know - I can see how some of that might be going on. But it also all depends on who you are and how you use Facebook? There are some geeky science people on there who have long involved discussions on Facebook and not sound bites - even if the original status was a sound bite.

    There are a lot of young people who are interested in more than a sound bite and want to be more involved in learning about politics and the environment and so on. Some are more involved with online privacy and government control, and perhaps are more likely to want to change Facebook's TOS to protect their privacy and read Wikileaks to call the government on the floor than deal with medical research.

    The Lyme disease patient community is its own bubble sometimes, though, and I think that bubble needs to expand a little... It's easy to get a narrow focus on issues when one barely has the strength and energy to get out of bed, let alone think about the Bayh-Dole Act. One has to know why the Bayh-Dole Act is important to them as a Lyme patient and how it has affected the very thing that is making life hard: their health.

    Once treatment gets people to the point where the brain fog lifts a bit, I think expanding the bubble is important. I didn't know as much about the Bayh-Dole Act when I first watched 'Under Our Skin' as I do now, after reading more about it. I didn't think it was important - just focusing on getting well was... And focusing on getting well *is* still important, but now that the fog has cleared a bit, I can see putting some of my energy into learning more about why the state of Lyme research is what it is needs more of my limited attention.

    (more)

    ReplyDelete
  3. (For cave 76 - more - continued)

    You said,

    "That would mean that most people even know what a 'protein' is (except in a steak) or that they realize or care about 'issues in research'."

    Ah, that's not hard to explain - some education and people will know what a protein is, even beyond the definition of 'a protein = chains and chains of amino acids'. I don't even know how important it is for people to know *every last detail* - it definitely is important to get the bigger picture, though, and know that if one can patent Borrelia proteins - antigens and so on - that it can limit and slow basic research down and channel it into vaccine and test development.

    Even what on the surface appears like 'basic research' at first really isn't - and is geared towards applied science and profit. Therein lies the rub.

    Once you make that connection and see who is monopolizing and patenting organisms... well, then it becomes clearer that to change things would mean passing legislation that overturns Bayh-Dole or at least significantly rewrites it.

    Making that a goal as well as protecting doctors who treat longer term would be a change in the right direction, in my opinion.

    This is only one part of the bigger picture, though. One has to get critical mass behind a few specific goals in order to make any progress and change what's been the status quo for years... and years... and...

    You said,

    "Um, that's if they know or care about Bayh-Dole and don't think that Bayh was a mis-spelled 'bay' and that Dole was a brand of pineapple. (Yeah, that was snark)"

    Nice snark. I give you a 7 for originality and a 5 for style.

    Applaud my efforts? I don't see it as applaudable. I was ranting about other people's ranting. I didn't accomplish anything other than to point out I keep seeing the same kind of thing over and over. The irony of my post is that it didn't accomplish much either, see?

    I'm going to have to double my efforts to explain more about how Bayh-Dole affects research. And not only that, explain why all this online ranting is something that the IDSA guidelines panel is only too happy to sit back, watch, and be entertained by... It's a case of watching the ranks divide and letting them disempower themselves. That could be a post in and of itself.

    ReplyDelete
  4. *****But it also all depends on who you are and how you use Facebook? There are some geeky science people on there who have long involved discussions on Facebook and not sound bites *****

    Yes, you're right about 'who you are and how you use FaceBook'. I didn't say ( but I meant) that it was 'research' about Lyme and TBI's. I just assumed that Lyme was the topic. My bad.

    I have read topics on FB that, while not 'geeky' are important in other venues; Protect the National Weather Service is one.

    But I'd like to know if there's any place on FB ---besides a few voices trying to counter the flood of SBI (Sound Bite Information)--- that do 'talk science' about Lyme.

    ReplyDelete
  5. I think that your idea of presenting exactly what Bayh-Dole was 'all about' is an excellent idea and deserves it's own thread. As with a lot of 'ideas' it might have seemed like a good one but it also had it's 'downside' as far as research goes.(speaking Lyme here)

    Hint: See how it adversely affected the power of the FDA to monitor supplements. That's one 'hook'. Then see how many members of FAIM were in the supplement business.

    ReplyDelete
  6. cave76,

    Quick responses for now:

    You're right, this blog is mostly about Lyme and tickborne infections in general - but I responded to your initial statement about 'the newer generations and soundbites on TV' because it *did* come across as being general and a generalization about younger people. If you had stated it in relation to the '300 channels of Lyme disease' on FB I'd posted about on the blog some time ago, I would have responded differently.

    I am trying to find more good science related groups on FB to recommend to readers here. Joanne from the UK apparently thought there were good science groups for Lyme there and mentioned it in a passing comment here - but I have yet to get a reply back when I asked her to specify what they were.

    Yes, Bayh-Dole is important. I don't think it only affects Lyme. In terms of getting allies to amend that act, I think that's something to keep in mind...

    I'll look at what you have to say about the FDA and supplements and FAIM - but isn't that small fish compared to the patent owners? Perhaps you know more in 'hard numbers' than I do - that whole 'follow the money' part... I just know that these university researchers can get $1000 a day for doing consulting for Big Pharma... can FAIM really keep up with that?

    Not to say that either is great - it's just me wanting to know who has
    the most to lose if the status quo were to change.

    ReplyDelete
  7. To add to the above:

    These university researchers can earn not only at least $1000 a day in consulting fees - they also get royalties from patents and ongoing funding from Big Pharma.

    ReplyDelete
  8. ****but I responded to your initial statement about 'the newer generations and soundbites on TV' because it *did* come across as being general and a generalization about younger people. If you had stated it in relation to the '300 channels of Lyme disease' on FB I'd posted about on the blog some time ago, I would have responded differently.****

    My bad, Sheldon. (grin)

    ReplyDelete
  9. cave76,

    Just for that, I'm posting some of my favorite Big Bang Theory quotes...

    Raj: I don't like bugs, okay? They freak me out.
    Sheldon: Interesting. You're afraid of insects and women. Ladybugs must render you catatonic.

    (I really wish they'd come up with a tick joke...)

    ---

    Zack: Is that the laser? It's bitchin'.
    Sheldon: Yes. In 1917, when Albert Einstein established the theoretic foundation for the laser in his paper "Zur Quantentheorie de Strahlung, his fondest hope was that the resultant device be bitchin'.

    ---

    Penny: Whatcha doin'?
    Sheldon: I'm attempting to view my work as a fleeting peripheral image so as to engage the superior coliculus of my brain.
    Penny: Interesting. I usually just have coffee. Have you been up all night?
    Sheldon: Is it morning?
    Penny: Yes....
    Sheldon: Then I've been up all night.

    (If I am Sheldon or ever was Sheldon... well, this one is about me. Except I would be up all night *and* have coffee. I make a horrible Lyme patient according to Doctor Joe. I just can't kick my caffeine habit. Lately, it's one of the few things keeping me going.)

    ---

    Sheldon: A neutron walks into a bar and asks how much for a drink. The bartender replies "for you, no charge".

    ---

    It goes on... I could be posting quotes from that show all day.

    ReplyDelete
  10. ***"A moving target"
    Bath salts are sold under dozens of names, including Ivory Wave, Hurricane Charlie, Ocean Snow, Red Dove and Vanilla Sky. They are labeled "not for human consumption" to get around federal drug laws and may be marketed as a variety of products, including bath crystals, plant food, incense and insect repellant, Ryan said.****

    http://www.ama-assn.org/amednews/2011/04/11/hll20411.htm

    ***Physicians nationwide are facing a new form of synthetic drug that is driving users to emergency departments and drug addiction programs with violent, psychotic behavior and a range of other symptoms.

    The powerful stimulants, known as "bath salts," are sold legally in much of the United States and typically include a variety of chemical compounds, including derivatives of cathinone, piperidine, pyrovalerone and tryptamine, said emergency physician Zane Horowitz, MD, medical director of the Oregon Poison Center.****

    ****Despite action by some states, bath salts are readily available over the Internet and in convenience stores, smoke shops and other retail businesses in states where they remain legal, said Diane M. Machen, a criminalist with the Washoe County Sheriff's Office in Nevada.****

    Proving yet again, in my eyes, why almost any organization (esp. on the Internet) that has the words 'health' and 'freedom' in their url or in their mission statement should be view with great suspicion.

    Yes, FREEDOM to kill yourself (or to let teens kill/injure themselves) with Freedom For All.

    ReplyDelete
  11. Hi cave76,

    Thanks for the comment - wondering if you intended to post this specific comment on this thread or a more recent one, given context? Just checking.

    I've heard about the drug, "bath salts", and this is just one example of many of how the law can be worked around in order to continue selling a product that causes harm to others.

    One question I have about this is how much of the responsibility of what happens with such products is that of the manufacturer - versus that of the consumer? Glue and paint can be huffed. People have consumed methanol and mouth wash - the former with devastating consequences. There are drugs that underground chemists make all the time, that are just chemically different enough that they are one step ahead of the government's books which define which drugs are illegal. And then there are supermarkets which sell salt and Vitamin C tablets...

    I think that if the web sites selling these salts are making unreasonable claims about their product, then someone needs to alert the public about it. The FDA gives companies warnings or shuts them down, depending on the nature of the web site and the products being sold.

    But then what? What if individuals decide to try them anyway, even after the claims have been removed by the FDA - and word spreads by word of mouth about these products? It happens.

    I guess my question is, at what point does one party absolve themselves of responsibility and the other party takes it on? Because anyone could use any product in a way that was not originally intended. One would hope that such off-label usage would be benign. Harmless. But it often isn't.

    At some point, does it cease to be the responsibility of the company and become the responsibility of the individual to decide what goes into their body, risks and all? When is that point?

    If we provide teens with all the information they need to know about why "bath salts" are bad to consume, have people who almost died by taking "bath salts" come to their schools to talk to them about it, and shut down as many companies as possible so that it's harder to get "bath salts" - yet "bath salts" are still being made by someone and distributed underground - who is responsible when after all that education and closings, teens *still* decide to take bath salts?

    ReplyDelete
  12. I have almost stopped surfing, reading, or responding to blog posts because of the "train wreck" nature of almost all of them. At first, I thought...wow, this is great, people are having discussions about important issues; this should lead to positive changes. But eventually I realized the posts were not discussions by rational people hoping to resolve any issue, rather the blog posts are: mostly biased opinions posted by people who are argumentative by nature and really have nothing of value to add; or intelligent people who really go out of their way to show us how smart they are, yet have nothing of real value to add; and let's not forget those distracting bloggers whose sole purpose seems to be to sabotage the discussion to conceal any real value added by the well intended blogger.

    Although this all sounds off track on a Lyme blog, it is my belief it is exactly the kind of problem that is hindering progress for solutions to correct diagnosis and treatment of Lyme's Disease.

    The Baye-Dole Supreme Court ruling is a related example of how ignoring the true source of a problem allows the problem to grow out of control. Everyone is so busy arguing about how to fix this or that aspect of the problem that they fail to realize few if anyone is pointing to the source of the problem. So it is with Lyme's. Few if any are investigating the true source of the delays to correct diagnosis and treatment of Lyme's.

    I predict, if and when we get relief will depend on if and when those in power can profit more from a solution than a conflict. It was more profitable for the Chicago Tribune to print an inflammatory article instead of an objective article, so they did, and I would be willing to bet they will not hesitate to print an objective article if it becomes more profitable than an inflammatory one. Such is life ruled by love of money.

    ReplyDelete

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