Words    Words    Words

• 1 kit // Jan 19, 2008 at 4:38 am

  tl, dr

• 2 Priscilla // Jan 19, 2008 at 5:47 am

  I also think this article is full of shit.

  Getting a diagnosis did not make my pain worse, or make me obsess over my pain. It made me feel as though there was hope for me. It gave me a context in which to deal with my pain, whereas before I just felt unhappy and depressed about the pain. It helped me find treatments for my pain.

  Regardless of what the case is (even if it’s psychological) people in pain need help. Psychocomatic does not mean “unreal”. The article disregards the experiences of thousands of people who are in pain every day.

  Also, why is it that whenever an article sets out to discredit fibro, they start out by mentioning that most sufferers are middle-aged women? They imply that this fact alone is evidence of incredibility. How sexist.

  I got sick when I was 21. Far from middle-aged.

• 3 Kiki // Jan 19, 2008 at 7:54 am

  I strongly agree that pain is something no one should ever be required to “adapt” to. Furthermore, I’d worry about what health compromises people who claim to to have successfully adapted to pain may be subject to.

  Healing is not about adaptation, but about empowerment. “Making do” and accepting limitations has never healed anyone. Continuing to believe in and work to achieve being free of pain and suffering is the highest goal any of us can strive for, and why should we settle for less?

  May all living beings be free from misery and the causes of misery –Buddha

• 4 Naamah_Darling // Jan 19, 2008 at 8:45 am

  I’ve never understood people who insist on using the yardstick of their own pain to dismiss the pain other people feel, or the people who believe that all of us should be able to match the saintly endurance of the most long-suffering among us.

  Pain is pain. Period. The only useful way to weigh the importance of pain is against the suffering person’s own experience and endurance.

  I grew up with a woman who constantly busted my chops over pain — no matter WHAT I had just done to myself or what happened to me, she dismissed my pain (mental and physical) as inconsequential next to her own past and present suffering. If it’d been up to her, I would seldom have gotten help for the things that hurt me, because I should’ve had to “adapt,” just like she did.

  Yeah.

  And yes, to a certain extent, we all have to learn to live with a certain amount of suck. I, for instance, will always have a certain amount of emo-suck going on because I’m freaking bipolar, and there ain’t no cure for that, even if it’s being managed very well. But — and this is the kicker — nobody else gets to tell me how much of my suck is “real” and deserving of treatment.

  Period.

• 5 Shanlea // Jan 19, 2008 at 9:04 am

  I understand what Kit goes through because my step-mom has fibromyalgia too, it is debilitating. I had issues trying to get doctors to understand levels of pain when I was going through migraine issues too. Their “suck it up and deal with it it” when I couldn’t see at work, didn’t help get my bills paid and I almost lost my job, till I got to the right doctor.

  US medicine is insane anyway.

• 6 El // Jan 19, 2008 at 9:05 am

  It’s mostly women who get depressed, therefore it must not be real. The root word for hysteria is the word meaning womb, after all. Mostly women get thyroid problems, therefore they aren’t important. Women process things differently, therefore the way they process them is somehow faulty or they’re just being difficult. (Note: there’s a fairly new book out called The Female Brain, by Louann Brizendine, that blasts that idea. As do classics like Carol Gilligan’s In a Different Voice.)

  I look on the hostility toward fibromyalgia as the latest in a long line. As diseases like depression are demonstrated to be based on neurochemistry, as differences in thought processing are demonstrated to be based on differences in the structure of the brain, well, they’ve gotta have *something* to “prove” that women are just a bunch of whiners, why should men have to listen to them?

  The men who have these “women’s” diseases get a double-whammy–until the docs figure out the disease mechanism and everyone goes “Oops. Never mind.”

  /end rant

• 7 Tim // Jan 19, 2008 at 10:02 am

  As far as I know medical science has not assigned a defined unit of measure to pain (i.e. “watt” or “dyne” or “meter”) so I don’t see how anyone can sensibly discuss Person A having greater or less pain than Person B. I recall a long-ago sf story in which the word “agon” was used for such a measure. Without standardized units it’s all speculation as to how bad anybody hurts.

• 8 Talesya // Jan 19, 2008 at 11:09 am

  There isn’t really an objective measure of pain, so doctors will resort to asking the patient to describe the very worst pain she’s ever felt, then consider that a “10″ and rate the pain being currently felt. That helps them to learn how the patient feels and, as the numbers change, it’s possible to see how well treatments are working.

  PS If a field like email is required for posting, perhaps it could be so marked?

• 9 Gyesika // Jan 19, 2008 at 12:51 pm

  I also found it interesting that this article started with mentioning the demographic of middle aged women. Reminded me of diagnosing middle age women in the 1800s with “hysteria”.

  I think that pain management falls under the “pursuit of happiness” right. It’s very difficult to be happy when you’re suffering.

  I also find this interesting because it wasn’t that long ago that conversation was happening with mental illness. “Is it real? Do these people need to just get over it? Everyone gets sad sometimes.” What seems to be missing from those discussions is the scope of what the patient is experiencing. Yes, normal aches and pains are unpleasant but if you have chronic, pervasive, debilitating pain that’s very different than waking up with a sore back because you slept funny. Same thing with depression. Feeling sad? Normal. Feeling like you want to die and not being able to leave your room for days? Something that should be looked at.

• 10 kit // Jan 19, 2008 at 2:16 pm

  Priscilla @ 2: Thanks for stopping by, friend. Yes, this article is the product of a baboon’s bottom, to be sure. :D I’m sick of the sexist disregard for women’s issues as well. Sad to see the New York Times reinforcing it, but it’s sunk in very well — I saw a commenter on another discussion of this article who said that ‘middle aged women are overly cared for’ and so she was suspicious whenever they are the primary sufferers of an illness. I bet you’re not shocked to learn she is someone who was young and healthy?

  Kiki @ 3: Hi coauthor. :) That’s a great buddha quote.

  Naamah @ 4: Yes, we’re very much in agreement.

  Shannon @ 5: Yeah, massive screaming headaches are normal. Why are you such a complainer?

• 11 kit // Jan 19, 2008 at 2:22 pm

  El @ 6: Thanks for the book recommendations, they look interesting. Your comment reminds me of what Reesa said when I finished ranting about this article the first time, out loud to her: “Welcome to the world of women’s health!”

  Tim @ 7: I don’t think there really can be a standardized measure of pain, because of the wide variation in pain tolerance. As Talesya @ 8 suggests, I think the closest we’re likely to get with modern technology is to allow each patient to self-define their own scale.

  Talesya @ 8: I’ll see about adding that to the comment form. Thanks!

  Jess @ 9: Word. I really dislike the protestant work ethic and associated attitudes which, in this country, have created a ‘buck up little camper’ attitude when it comes to all kinds of things — pain, mental suffering, putting up with bullhorns at 4am … ;)

• 12 zizban // Jan 19, 2008 at 2:47 pm

  It’s the reverse of ADD, which is way over diagnosed.

• 13 salexa // Jan 19, 2008 at 3:28 pm

  Pain management is a basic human right that seems to be ignored way too frequently. I knew somebody years ago who lived in a tremendous amout of pain due to rheumatiod arthritis. She had to fight to get enough pain killers to have her attendant get her up in the morning, as the doctors did not want to get her “addicted”. Yeah, right. If you try to make it, they don’t believe you when you say how much pain you are in. If you can’t keep going, they think you are being overly dramatic. I really don’t know what the answer is to this dilema, but it occurs every day.

• 14 polijn // Jan 19, 2008 at 4:10 pm

  They do the same thing to lupus patients. “We can’t find a cause for your ‘pain’. You should not be in pain. You are a junkie.” Okay, they don’t really *say* the junkie part, but you know they mean it, because they give you a perscription for ibuprofren. Lupus patients are mostly middle-aged women as well, though I’ve met more men with it, including my fiance.

• 15 Jason // Jan 19, 2008 at 4:49 pm

  I don’t know if I can get on board with the “fundamental human right” part of what you’re saying, but it would be a piss-poor doctor who would trust vague case-studies of a newly-identified condition over the testimony of a patient claiming intense chronic pain.

  Maybe they need to apply a Jedi mind trick instead of the usual brush-off:

  “You are not feeling real pain. You are a wuss. Quit your bitching. Pay on your way out for my brilliant medical treatment.”

  Then they’ll still be crappy doctors, though.

• 16 kit // Jan 19, 2008 at 6:15 pm

  zizban @ 12: ADD is a complex issue possibly best held for another time. I had ADD as a kid, was prescribed ritalin for it, and I genuinely think it was good for me — I was a hyperactive, out of control little kid and it helped me be somewhat less hyperactive, somewhat more able to control myself (when I chose too). But I also totally agree the epidemic of diagnosing this illness is suspicious to me; it seems a lot like medicating kids placid when we can’t make them actually engaged in what we’re teaching.

  salexa@13: The answer to this dilemma is for doctors to have more respect for their patients and their complaints.

  polijin@14: It’s especially infuriating since there is scientific evidence that chronic pain patients are much less likely to abuse their painkillers than the average person is.

• 17 kit // Jan 19, 2008 at 6:17 pm

  Jason @ 15: Care to explain why you don’t think pain management should be a fundamental human right? Like Jess said, it seems to fall under ‘pursuit of happiness’ ( a much ignored right as it is). I think everyone has a right to be comfortable and not in agony, but maybe you have something else in mind?

• 18 SpeakerToManagers // Jan 19, 2008 at 6:19 pm

  For the last 30 years or so I’ve been dealing with this sort of attitude on the part of doctors; my partner has serious allergies that can cause asthma, chronic migraines, a major GI tract problem resulting from a herniated esophagus, and now, CFS. We tend to go with each other to the doctor, and try to help each other research our health problems online, so I’ve followed pretty closely what the doctors have been saying.

  As each problem arose, the doctors’ first reaction was, “That’s not a medical problem” because they couldn’t come up with an immediate diagnosis, then it was, “We have a procedure that will help this,” and when the procedure or medication didn’t work, or caused other problems, it was “Well, we can’t help you, so it must be your fault, go away.”

  I’ve seen several different reasons for doctors to act like this:

  They’re embarrassed when they don’t have an answer, and become resentful of the person who embarrassed them.

  Many of the less-understood disorders like across the boundaries of more than one medical specialty; many doctors don’t deal well with that.

  Doctors are not usually trained to see their patients as whole organisms, but as the organs or disorders particular to their specialty. Seeing what needs to be doen in terms of a patient’s home environment, lifestyle, or working conditions is alien to them.

• 19 Doctor Science // Jan 19, 2008 at 7:42 pm

  Speaking as a science writer and historian of medicine, the article is full of crap. Yes, it is always problematic when medication drives diagnosis. But it is practically dereliction of health-writer-duty to talk about the problems with fibromyalgia without even mentioning the pervasive problems modern American medicine has with chronic pain: acknowledging, diagnosising, and treating it.

  Not to mention that one consequence of finding a drug that treats a mysterious condition is that you have a better chance of finding out what’s actually going on. Though I will also bet good money that “fibromyalgia” is a “lumping” diagnosis, including several very different conditions under a single name.

• 20 Jason // Jan 19, 2008 at 7:58 pm

  Kit-
  I wouldn’t go so far as to say I don’t think it is a fundamental right–just that I’d need to be convinced in order to assent to the proposition. I’ve considered this in a few different directions, but here’s one (I can’t do these things in sound-bites, so this will take some patience. Please forgive the formal tone–it’s how I work this stuff out):

  The pursuit of happiness has been cited here as a fundamental human right, and it’s certainly one of the big three in the Declaration of Independence (I’ll bracket for a moment the possibility that the signers weren’t claiming that this was objectively a fundamental right–just that it would be axiomatic to their declaration). This “freedom from pain” right is reasonably derived from the explicit “pursuit of happiness” right.

  More fundamental than a derived right would be the “right to life,” which is not only explicitly stated, but occurs first in the list, implying priority. It’s easy to make a case that we have a right to not have our lives cut short by another’s direct action or negligence, and in the same way it’s clear that if someone causes us unnecessary pain they have violated a similar right.

  What isn’t as clear is that others are obligated to provide me with the means to extend my life, even if their required sacrifice is less significant. For instance, if I have leukemia and need a marrow transplant inside of a week or I’ll die, and you are found (by some strange medical procedure) to be the only possible donor, I’m not sure I have a right to your marrow. You can’t be compelled to donate, even in order to maintain my life, to which I have a right. Similarly, it seems to me, the relief of pain isn’t something that a person can be compelled to provide for someone else. In both of these cases we might judge the refusing donor a terrible human being, but it would be difficult to argue that they’d violated anyone’s rights.

  Of course, this just addresses the bare claim of a right to pain relief. The issue is more complicated, I know, and the involvement of medical professionals and third-party payment and any of a number of other factors tangle the issue.

  Suffice it to say I’m in agreement with Peter Singer: there’s no real difference between killing someone and allowing him to die when I could have easily intervened (Similarly, almost no difference between causing unnecessary pain and refusing to relieve it when I have the means at my disposal). But that doesn’t establish a right, as far as I can see.

  I apologize for my long-windedness.

• 21 SpeakerToManagers // Jan 19, 2008 at 8:04 pm

  salexa,

  Here in Oregon we may have found a way to make doctors pay attention to the problem of pain. A lot of them are upset that their patients who have painful and terminal diseases have a way out of their pain: legal suicide. So now there’s even an organization of medical professionals in Oregon dedicated to the promotion of pain relief, explicitly as an alternative to euthanasia. Amazing, you just have to threaten to kill yourself to get pain meds.

• 22 kit // Jan 19, 2008 at 9:13 pm

  Jason@20: No need to apologize for long-windedness. We’re pretty windy people ourselves around here… I guess it comes down to ‘what makes a right’ which is a pretty complicated one. I’ll have to digest what you said and get back to you.

  Speaker@21: It’s sign of how bad things are that it takes euthanasia to make many doctors take pain seriously.

• 23 kit // Jan 19, 2008 at 9:49 pm

  Doc’ Science @ 19: Exactly my point — you touch it with a needle. Fibromyalgia is almost certainly a ‘lumping’ diagnosis, given that it is a diagnosis of exclusion and seems to encompass so many diverse sets of symptoms and comorbid conditions. But to imply that this is the fault of the patients, rather than a lack in medical knowledge is totally unacceptable.

• 24 skzb // Jan 19, 2008 at 10:56 pm

  Interesting post, Jason. Lots of meat there.

  One thing that comes across is the question of responsibility. It’s this whole, “does society owe me a living, or freedom from pain?” or “should people be responsible for themselves?” thing.

  Libertarians and others love to pose it that way: “Why should I have to support you? Why shouldn’t you take responsibility for paying for your own medical care, or earning enough for a decent living standard &c &c.” (Not that I’m accusing you of being in this camp; just that the points you bring up call it to mind.)

  In reality, it isn’t that simple. The mythical entrepreneur whom the libertarian holds up as his model was provided education, infrastructure, and resources of knowledge and technique by a complex social system–millions of people working together. The questions are: to what degree does being part of that complex social system obligate one to contribute to it; and to what degree does contributing to it oblige society to take care of those who have created it?

  Working together, we (humanity) have created vast amounts of medical technique, built hospitals, built universities where doctors and scientists could train, built cars and trains and airplanes to get them where they needed to be, raised food to feed them, and so on. All of this was done socially–cooperatively, using various economic arrangements at various times and under various conditions.

  To simply dismiss the case of the individual with, “you should take responsibility for yourself” (again, I’m not saying that is what you’re doing) is to ignore the entire nature of human social relations for the past 10,000+ years.

  Should freedom from pain be a right? I believe it should be, to exactly the extent that medicine is able to make it so. It should depend, in other words, on the state of science society has developed, not on the place of a given individual within that society.

• 25 GWW // Jan 20, 2008 at 12:36 am

  I would think that the desire for freedom from pain would fall under the category of “pursuit of happiness” as mentioned in the Declaration of Independence.

  Pain and happiness aren’t really able to coexist.

  Always surprises me when medicine doesn’t know what something is. I mean… we can map the human genome, shoot people into space and split the atom… but we can’t figure out why someone has chronic pain.

  I guess the real question is what does the pill do they are going to distribute and will it work…? Because how can you make a pill for something without knowing what the cause is? That doesn’t make sense to me.

  I mean… they made the pill. They should know what it does. And if whatever it does stops the pain then medicine should be able pinpoint the cause of the pain in the first place.

  Perhaps that’s just me being an innocent flower or something.

• 26 Siun // Jan 20, 2008 at 2:05 am

  Before commenting - what a treat to see this blog - thanks to all three of you!

  El - lovely to see Gilligan’s work cited. Her Woman and Nature has helped me view the world for a long time - and since I haven’t read In a Different Voice, now I will.

• 27 kit // Jan 20, 2008 at 4:28 am

  Steve@24 & Jason@20: On reflection I stand by my assertion that pain management is a basic human right. In our current private medical system, with its unhealthy attitudes towards pain, this is certainly not the case. But if we’re talking an ideal world, I think that just like people (should, at least) have a right to basic shelter, clothes, and sustenance I think we owe our fellow citizens what help we can provide for their pain. After all it’s that much harder to enjoy happiness, as GWW rightly points out, when you’re in pain.

  As an aside, I’ve met very few, if any people with chronic illnesses who oppose the idea of socialized medicine. Make of that what you will.

  GWW@25: The more medically knowledgeable correspondents can correct me, but my understanding is that there are many drugs for which we can say we know they work but not exactly why. Especially when it comes to the brain there is much that is mysterious.

  Siun@26: Thanks for stopping by. The recommendations carry even more weight now, definitely going on the reading list. Aren’t you supposed to be in bed though? :)

• 28 Shanlea // Jan 20, 2008 at 6:24 am

  Kit@10 - *raspberries*

  Kit@16 - oh yes, don’t get me started on ADD or ADHD, not easy since my son has it, and its still up in the air on whether or not the doctors have actually treated it right.

• 29 Ker_Thwap // Jan 20, 2008 at 7:41 am

  I have a dear friend diagnosed with Fybro. She’s more along the classic overweight, fast food eater, alcoholic, and depressed variety, but it seems clear that something is going on.

  I have remarkably little trust in the ability of scientists and doctors to medicate every human body breakdown. I just don’t think that they’re as capable as they’d have us believe.

  Just because I’m an advice giver (how annoying) I can only suggest that anyone who isn’t well with multiple symptoms, first start off by curing that which is curable on your own while you involve doctors.

  I’m more or less recovered from depression, and have lost a lot of weight. In general I feel a lot better. When I had doctors involved, they tended to medicate me to the point where I was depressed and making poor decisions, but was content with that, not a good combination.

  As for the fundamental human right part. To me pain management fails my “rights” test. We have the right to pursue happiness. Whenever we rely on someone other than ourselves, friends, or family and ask society at large to entitle us to a “right” it fails the pursuit test.

  Just to show I’m not a complete idiot. Let’s use public roads as an analogy. Roads fail my “rights” test, but that doesn’t mean they aren’t a darned good idea and for the public good. We just don’t have a fundamental human right to them.

  Pain relief is much the same, we have the fundamental right to pursue as many different doctors as you wish until we find one that can somewhat help us. We have the right to fund, or campaign for funding of your medical condition, to raise public awareness. We don’t have the right to self prescribe pain medication.

  I’m not telling you who to be annoyed against, but anger against doctors may be misplaced. Doctors have historically created addicts, from the opiate laced medicine show potions to the valium hazed housewives of more recent times. Medicine as a first treatment choice for pain often leads to a vicious cycle that ignores the underlying condition.

• 30 Ker_Thwap // Jan 20, 2008 at 7:53 am

  Oh, and for what it’s worth. I saw about six psychiatrists who tried various medications, discussions about my childhood, etc. who essentially helped me sink deeper into depression.

  I’m sure one size doesn’t fit all, since we all have different underlying causes. However, I’d like to share with you the method that worked for me.

  Get yourself on a schedule. At first, it’s near impossible. Start off by setting an alarm clock to wake up at the same time. Give yourself a little mental “yay for me” the first day even if you go back to sleep, you did manage to set the clock at least.

  Eat healthy food, give yourself a pat on the back if you bought salad fixings, even if they rot in the vegetable drawer at first.

  I like to blame MSG for messing up my brain chemistry. It’s probably not true, but being a middle aged white male moderate/conservative I needed something to blame. MSG was handy. Yes, I also blame poor habits I developed that reprogrammed my brain, but it was easier to blame MSG at first.

• 31 Jason // Jan 20, 2008 at 8:04 am

  SKZB@24: Your post is essentially a more concise and effective version of my usual argument against the libertarian delusion. And I don’t disagree with you on the substance of what you’re saying. My reluctance to concede Kit’s original point may be more linguistic and epistemic than it is ethical.

  Your last paragraph holds the crux of my issue. You say that freedom from pain should be a right, and I both agree and disagree. I agree to the extent that whatever medicine has produced should be available to all who need it, and for exactly the reasons you cite above. But my understanding of “rights” stands on the other side of the is-ought problem from the way you’ve expressed it. A right, to me, is an absolute, objective–not something that’s subject to “should.” Especially when coupled with the word “fundamental.”

  But I suppose that’s neither here nor there. Like I said, I agree with you on the substance of what you’re saying. If there’s any point to society at all, it’s to promote the common good in whatever form it’s required and available.

  Kit@27: While we agree about 97% of this issue, I’m going to have to ruminate on the remainder. Thanks for posting this–it gives my brain something to chew on. (How’s that for a creepy metaphor?)

• 32 Grey Walker // Jan 20, 2008 at 10:01 am

  I read somewhere recently (am I allowed to be that vague here?) that studies of pain management after surgeries or treatments are reaching startling conclusions. /sarcasm

  What they’re finding is that keeping onesself pain free actually helps the healing process. When the body feels pain, it slows down, clenches up, and produces adrenaline. All of these things interfere with the body’s ability to flush toxins, build immunities, and move in ways that ease and restore muscles and other body tissue.

  They’ve been experimenting with providing more pain medication to hospital patients, rather than less, and they’re seeing that it speeds recovery.

  I’d be very surprised if the same findings didn’t apply to chronic pain sufferers.

• 33 skzb // Jan 20, 2008 at 11:26 am

  Okay, Jason. I see where you’re coming from. Sounds like we’re in close enough agreement that we ought to have a lot of fun kicking holes in each others’ arguments. :-)

  I deny the existence of any “rights” whatsoever (including life and liberty) abstracted from a given society in a given period. Morals emerge from social interactions; there isn’t a set of “absolute morals” hiding out in the cosmos waiting for a clever astro-epistomologist to find it.

  In today’s society, I certainly think freedom from pain, to whatever degree the sum total of human culture and technique can make this happen, ought to be a right of every human being. So should health in the most general sense be a right, to the extent it is possible (this is my scowl in the direction of laws that prevent people from getting drugs that will actually help their condition).

• 34 Siun // Jan 20, 2008 at 12:26 pm

  Kit@27 … sleep is overrated, at least when you have a deadline to write to (or so I’m trying to tell myself)

  But no sleep also caused me to mistake Gilligan for Griffin … so a correction: Gilligan’s In a Different Voice is great and valued and should be on your list. But also I’d suggest - and then some - Susan Griffin’s Women and Nature which is the book I was thinking of … hard to describe, more a book to experience than study … there’s an excerpt at that link which gives a bit of the feeling as well as a good note from Griffin. It’s shaped my thinking in important ways since first read way back then. (I’ll see if I can find my copy and send it along)

  Interesting stuff on rights. In so many ways our society loves to make “moral” judgements about other’s suffering … rather than providing support for all to live better. The desperation to have “an edge” on the rest of the human race seems to trump our need for collaboration - whether it’s pain management or so many other areas of life.

• 35 Seth // Jan 20, 2008 at 12:27 pm

  Steve, do you really think that the entire human race is required to do everything they possibly can to ameliorate one person’s pain, if that’s what it takes?

  Am I evil for not having gone into medicine where I might have been able to discover some pain-reducing or -eliminating techniques that aren’t currently known?

  I agree that laws preventing people (and doctors) from doing the right thing are themselves evil. But I will not agree that your pain gives you the right to enslave a medical practitioner.

• 36 skzb // Jan 20, 2008 at 12:39 pm

  I’m a little startled that you don’t see a difference between society as a whole–the complex interactions of division of labor, government, industries, facilities, infrastructure–and each individual.

  Do you actually believe that one cannot lay claim to services from a society that one cannot lay claim to from each given individual? That there is a 1:1 corrospondence between, “I am owed this as a human being who is a part of a given society” and, “I am owed this by anyone I happen to meet on the street?”

  Do you deny that the fire department should come to your house if there is a fire there? Do you believe that this obligates Jeff Inglewood of Shrewsbury, England, to drop what he is doing and fly across the Atlantic to fight your fire?

• 37 Jason // Jan 20, 2008 at 2:38 pm

  Steve-
  Actually, it looks like we’re in close enough agreement we’ll have nothing but semantic squabbles to keep this banter going (Not that that’s ever slowed me down–or you, I’m guessing). Your expansion on your position matches my thoughts perfectly. Maybe we need a separate term for rights derived from social interaction, just to keep them from being confused with natural or absolute rights. (I’m working on a book that does something similar with belief).

  Funny you’d say “astro-epistemologist.” I’m an epistemologist, and my wife’s an astrophysicist.

  And if Jeff Inglewood of Shrewsbury, England knows what’s good for him, he’ll be keeping an eye on my house. Heh.

• 38 Seth // Jan 20, 2008 at 2:51 pm

  How do you get services from society without getting them from any individual? You’ve stated that a person should have the right to “freedom from pain, to whatever degree the sum total of human culture and technique can make this happen” which implies that, for instance, if there’s one doctor who is much better at it than anyone else, you’re automatically entitled to his work.

  The distinction I see is between what it is good for people to do, and the right of people to have done. If I’m walking past someone who is hungry, it’s good for me to give him food. He does not have a right to half my lunch.

• 39 Brandon // Jan 20, 2008 at 4:26 pm

  I believe this is along the same sort of thing my sister was diagnosed with. She just turned 21 and is in constant pain from some rare thing, pain enough that she is constantly doubled over, weeping, or throwing up. Also she does not have insurance and recently lost her job. They claim that surgery would help if done every year to the tune of something like 10,000$

  It makes me sick that many people who need health care can’t get it. My sister has been through a lot (rape, suicide attempts, parent abandonment and more) and she deserves a break in life. And the other people suffering do as well.

• 40 skzb // Jan 20, 2008 at 5:44 pm

  With all due respect, Seth, it looks from here as if you dodged the question. Do you have the right to have the fire department come to your house? If so, does this require some specific individual to do so?

  The issue of a single, specific doctor is a red herring, as I’ve been discussing the sum total of knowledge and technique acquired by a society, not the skill of a particular individual within that society.

• 41 Doctor Science // Jan 20, 2008 at 7:30 pm

  First: no discussion of chronic illness, especially pain, can do without the spoon theory (pdf).

  Next, GWW @25: on the contrary, it is usual for a drug to be found effective before doctors/scientists really know what it does. Classic examples include lithium for mania, LSD, and the Vinca alkaloids, important in cancer chemotherapy.

  Nowadays all the drug companies are very keen on “rational drug discovery”, but that’s more of a hopeful guideline than actual practice.

• 42 GWW // Jan 20, 2008 at 7:51 pm

  Hm. How very odd. I had no idea that was the case.

  It just seems so very backwards to me, something like being asked which came first the chicken or the egg? And being told that it was infact oyako donburi.

  Oh well. I guess it’s why I’m not a medico. I’m not very good at thinking about the answer before the question is posed.

• 43 skzb // Jan 20, 2008 at 8:17 pm

  One of the few companies I’ve always admired is 3M. They have an attitude that there are no failed experiments–if the thing you’ve just invented doesn’t do THIS, well, put it on the shelf; maybe someday we’ll have a need for something that does THAT.

  It could be (I’m no expert either) that some medical research is similar: “Oh, hey, this has THIS effect. I wonder if that would be useful for something.”

• 44 GWW // Jan 20, 2008 at 9:03 pm

  That’s an interesting way of thinking about it. I guess you’re right in that if they know they’ve made something that stops pain, that it would be sensible to try it on people with different forms of pain.

  Just don’t like the idea of people sitting around in labs making cures of things that they aren’t intending to.

  I like to think we’re less clumsy as a race when it comes to medicine. I don’t like to think of it as if first you don’t succeed use it for something else.

  But I guess if the end result is people having pain relief or a cure for some disease or condition… we’re doing the right thing?

  Part of me thinks the ends justifies the means, and part thinks that that is just wrong on some base level.

• 45 Doctor Science // Jan 20, 2008 at 10:12 pm

  It could be (I’m no expert either) that some medical research is similar

  O my heavens, yes. In fact, we call it “serendipity” and pretend that we meant to do that all along.

  For instance, the Vinca alkaloids I mentioned above. The Madagascar periwinkle is a tropical plant, widely grown in gardens for the past couple hundred years.

  It’s also been widely used in folk medicine, and was first scientifically studied as a remedy for diabetes, one of its traditional uses. The scientists working with it couldn’t find any effect on diabetes, but noticed that it reduced the white blood cell count in their study animals.

  “Hey,” they said, “if it reduces white blood cells, maybe it could help with leukemia!” About a zillion tests later, they had a collection of substances — the Vinca alkaloids — that were some of the first effective cancer chemotherapies.

  The Vinca alkaloids had been used in chemotherapy for a while before the chemical they bind to, tubulin, was even discovered, and it was years more before scientists knew that that’s what they were doing.

  Yes, GWW, medicine is *incredibly* empirical — I don’t know if there’s any other science that is more focused on “find me something that works, find out *why* it works later.” I’m so used to this fact that I really appreciate being reminded how chary doctors are about conveying it to the general public.

  I’ll hop down from the soapbox with a book recommendation: The Spirit Catches You and You Fall Down, by Anne Fadiman. A wonderful, heartbreaking story of culture clash and medicine.

• 46 GWW // Jan 20, 2008 at 10:33 pm

  “Yes, GWW, medicine is *incredibly* empirical — I don’t know if there’s any other science that is more focused on “find me something that works, find out *why* it works later.””

  I find it so hard to consider that scientific… I’m not sure why.

  You seem to speak from experience. Do you think it’s a good thing? Or something that is just necessary?

• 47 Doctor Science // Jan 21, 2008 at 12:09 am

  I find it so hard to consider that scientific…

  LOL! Some people have been known to say medicine is an “art” instead; others use the term “voodoo”.

  My experience is as a science & medical writer & historian. I think it’s *necessary*, because medicine is (a) intrinsically very difficult, but (b) can’t afford to wait for results.

  Generally speaking, the “hard” sciences are the ones that are easy, the “soft” sciences are the ones that are difficult — and medicine is positively squishy.

  Physics is intrinsically easy because it works (by definition) with the minimum number of different kinds of things: these days we’re down to a few quarks, a few leptons, a few fundamental forces. Physics seems “hard” because it’s easier to get reliable results when you limit yourself so strictly, and because you can build longer trains of thought by making each thought very precise.

  With medicine, though, you’re working with at least at least 22,000 kinds of basic units, some of which can be modified to produce millions of useful variants

  So if the intrinsic difficulty of physics (using say 20 elements) is 20!= 2.433 × 10^18, the intrinsic difficulty of medicine (with say 20,000 elements) is at least 20,000! = in the range of 10^77000. Since we don’t want to wait until the heat death of the universe to shuffle all the combinations, we have to use the “empiricism first & devil take the details!” methodology. Often, it’s while trying to figure out what we’ve done that we can see what should be done instead.

  Doctors are a lot like medieval master-builders working on a cathedral: putting up a massive complex structure without being able to analyze too much beforehand, just trust to past experience, knowledge, and keen observation to adjust as you go. Yeah, a good many cathedrals fell down — but just think of the one that stayed up, with no architect’s plans or engineering feasibility studies to show that the builder knew what he was doing. He knew what worked, even if he didn’t know why:

  http://en.wikipedia.org/wiki/Notre_Dame_de_Paris
  and
  http://en.wikipedia.org/wiki/Cologne_Cathedral

• 48 SpeakerToManagers // Jan 21, 2008 at 12:09 am

  GWW,

  Part of the difficulty in knowing what you’re doing in medicine is that human beings are whole organisms, not just collections of organs. A needed effect might occur because of a direct effect, or a very, very indirect effect. And many of the functions we want to influence are parts of very complex multi-pathway feedback systems, where it’s not at all clear what the effect of any given action will be.

• 49 GWW // Jan 21, 2008 at 12:41 am

  I wonder if it’s what is directly at stake with medicine vs many other sciences that allows it to function that way.

  As in what’s at stake usually are lives. Lives may be at stake on a broader level for other sciences, but on a micro level I guess medicine seems more direct when it comes to live and death.

  Does that add a need to push the bounds of what would normally be considered a science, into what Doctor Science above called art? Perhaps it’s in our nature as man to want to save ourselves and others and that need overrides any real scientific precept.

  I find this line of thought interesting. I can’t think of many other pursuits that allow that level of freedom.

  Part of me still finds the idea somewhat… scary I guess. In the same way I find the freedom that we’ve allowed the US government in regards to anti-terrorism laws.

• 50 skzb // Jan 21, 2008 at 1:35 am

  I’m trying to think of a science in which discoveries have not been made by serendipity, and I’m drawing a blank. Aren’t there thousands of stories from all disciplines of, “X was discovered while trying to find a way to do Y?”

• 51 Seth // Jan 21, 2008 at 1:53 am

  Under current US Law, there’s no right to have the Fire Department (or police, according to the Supreme Court) come merely because they’re called and needed. They _should_ come, because that’s their job (or at least what they volunteered to do, depending on location). That doesn’t require any particular person; a professional fireman can still take a vacation.

  But I don’t believe that I’m entitled to have “the absolute best fire protection/amelioration to whatever degree the sum total of human culture and technique can make this happen”. Because I pay for fire protection (insurance, plus either taxes or payments to a private company), I’m entitled to receive the benefits I pay for.

  Science consists of finding falsifiable explanations that aren’t falsified. First, something is observed. Then, there’s a potential explanation (hypothesis). Then somebody suggests an experiment which might prove the hypothesis false. The experiment is done. Typically, the hypothesis fails, and a new hypothesis is thought up. Eventually, some hypothesis passes a whole bunch of attempts to falsify it, and people start believing it.

  The process, attempting to falsify hypotheses (especially when the attempts fail) is science. Where the hypotheses (and original observations) come from is irrelevant.

• 52 GWW // Jan 21, 2008 at 2:08 am

  “The process, attempting to falsify hypotheses (especially when the attempts fail) is science. Where the hypotheses (and original observations) come from is irrelevant.”

  That’s my problem I guess. They aren’t making the hypotheses first, they are making the answer first and then going back and finding different ways to apply the solution until they find the right hypotheses.

  That strikes me as so very backwards and against the scientific method.

  I understand that serendipity happens sometimes. That doesn’t bother me. If the 3M guy was trying to make glue solution 3042 but forgot to add chemical 132A and so just happened to make something totally new… I can get that. I understand it. He happened to have the new glue on hand and decided to put it to use. But he wasn’t trying to make a new product. He made a mistake.

  That’s not what medicine is doing though. They are making answers to questions that aren’t even there yet or are applying those answers to every question they can trying to see if it fits.

  That really doesn’t seem like serendipity to me. It seems more like planned scientific reversal.

  I may be too rigid in thinking for medical science. Some part of me just keeps saying “but, but, but…”.

  Sorry for the thread hijack Kit. I sorta kicked it into a different tangent.

• 53 SpeakerToManagers // Jan 21, 2008 at 2:17 am

  GWW

  Maybe you shouldn’t be thinking of drug development as science; it’s really much more like engineering. In fact very little of medicine is science; most of the research that benefits medicine is done under the aegis of biology or one of its subfields.

• 54 kit // Jan 21, 2008 at 2:20 am

  GWW: No need to apologize. It’s been a fascinating tangent.

  Seth’s comment reminds of what my mother told me about Treasure Beach in Jamaica. This small (though tourist-popular) town has only 2 cops which the townspeople hire and fire directly (via a vote, if I recall correctly). So if the cops don’t do their jobs in the way the townspeople want them too, out they go. It sounded pretty appealing.

• 55 Seth // Jan 21, 2008 at 11:03 am

  GWW, what do you mean by “coming up with answers first”? They try stuff (at random, or guided by experience or theory), and see what happens. That’s the observation (first) phase. It all iterates from there.

  “Going back and trying” until they find the “right” hypothesis (that is, one they can’t falsify) is what science does.

• 56 Doctor Science // Jan 21, 2008 at 3:56 pm

  skzb @50: You’re right, every scientific discipline has serendipity stories. I wonder if serendipity is one of the signs that “science is happening here”, one of the things that distinguishes science (& engineering) from other ontological methods.

  As I think about it, it seems to me that serendipity comes from the way scientists focus on the metaphoric trees instead of the forest — not just the trees, but the specific bark of this specific tree, and I never noticed those moths before, did you?

  Science is anti-holistic, in that little discrepancies *do* matter. The evidence for light’s diffraction is much less obvious than reflection, and from a well-balanced Ancient Greek POV it’s kind of crazy & obsessive to make explaining diffraction (light is a wave) as important as explaining reflection (light is a particle).

  It’s a real problem in medicine, because human beings in pain need to be treated holistically, but the best treatments often come out of studying their problems in a reductionistic way.

• 57 Fitz // Jan 22, 2008 at 12:05 am

  “When people are in pain, they deserve treatment for that pain”

  What exactly are you basing this on?
  Are you saying that the people responsible for the treatment should treat no matter what?
  Are you saying that the (insert capitalist slam here) drug companies should develop pain relievers for free? All the people that work on developing pain relief should just do it because people in pain deserve freedom from that pain?

  As far as I am concerned, this is a fundamental human right.
  Then you are very confused on human rights. You see everything you are asking for here requires many, many , many people giving their time, energy, talents, and abilities. This is not a human right. You are placing one persons rights above all others. How very strange.

  I’ll let you in on a little secret. You do not deserve anything. You earn it.

• 58 skzb // Jan 22, 2008 at 12:12 am

  Fitz: I like pudding.

• 59 GWW // Jan 22, 2008 at 12:20 am

  But do you deserve pudding…?

• 60 kit // Jan 22, 2008 at 1:47 am

  Since I don’t have any pudding, I believe I have a fundamental right to Fitz’s pudding.

• 61 Shanlea // Jan 22, 2008 at 2:00 am

  Kit@60 - chocolate pudding?? *perks up*

• 62 schmwarf // Jan 22, 2008 at 3:13 am

  fitz@57 - didn’t you say in a previous post in Steve’s LJ that you support universal health care? If so doesn’t the comment “You do not deserve anything. You earn it.” contradict this?

  If not, how not?

• 63 Jason // Jan 22, 2008 at 6:55 am

  Not only do you deserve Fitz’s pudding, you deserve Universal Pudding–funded, managed, and delivered by the government.

• 64 kit // Jan 22, 2008 at 7:41 am

  What I really want is for all the people to agree to share all their pudding together, so that the pudding hoarders will be forced to give some pudding to those who have none.

  Then we can deal with the Jello situation. It’s looking pretty dire.

• 65 SpeakerToManagers // Jan 22, 2008 at 8:48 am

  From each according to his pudding to each according to his desserts.

• 66 Seth // Jan 22, 2008 at 8:51 am

  Fits, I see no problem with saying what people deserve. The fact that you deserve something does not obligate me (or anyone else) to provide it. Anyone who insists otherwise will have Kipling quoted at them.

• 67 SpeakerToManagers // Jan 22, 2008 at 8:52 am

  The notion of a basic right is not about what must be given to someone, but about what cannot ethically be taken away. I have a basic human right to life, meaning you don’t have the right to kill me. The right to pain relief doesn’t mean free Ibuprofen, it means that a doctor prescribing pain relief does not have the right to prescribe a low dosage which will not relieve the pain because of other than medical considerations. It is a fact that many doctors do exactly that, as brought out so neatly by the debate about assisted suicide.

• 68 skzb // Jan 22, 2008 at 11:26 am

  SpeakerToManagers: Well said.

• 69 Jon // Jan 22, 2008 at 11:38 am

  http://www.amazon.com/gp/product/B000FI73MA/ref=amb_link_6224392_2?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-1&pf_rd_r=1JWCRMAT4JET6A1PW877&pf_rd_t=101&pf_rd_p=358859501&pf_rd_i=507846

  What do you think of this device, as authors? Does it herald a new age where authors become even more impoverished? :P

  Aware that this is a thread-jack, perhaps you’d prefer to make an entry about your reaction to this rather cool, if menacing, device…

• 70 Seth // Jan 22, 2008 at 11:50 am

  SpeakerToManagers: I wouldn’t say that the doctor doesn’t have a right to prescribe a low dosage, but rather that he does have the right to prescribe the correct (in his opinion) dosage.

• 71 skzb // Jan 22, 2008 at 11:58 am

  No idea, Jon. I couldn’t begin to guess what effect, if any, that will have.

• 72 SpeakerToManagers // Jan 22, 2008 at 1:19 pm

  Jon,

  Charlie Stross had some things to say about the Kindle a few weeks ago. Aside from the fact that he didn’t like it personally, he was not very optimistic that it would be any kind of success in the marketplace.

• 73 Jason // Jan 22, 2008 at 2:19 pm

  Here are some thoughtful (and kind of funny) comments on the Kindle by an editor’s assistant about a month ago.

  Click this one.

• 74 Fitz // Jan 22, 2008 at 11:04 pm

  I have simply decided to gather all of the pudding and keep it locked up. Then I will sell it at enormous profits to the starving masses as I abuse my capitalistic powers.
  Next I will make a move to monopolize the Jello market.

  schmwarf: Saying you deserve something is different than believing that I/we should provide something.

• 75 Ker_Thwap // Jan 23, 2008 at 7:49 am

  Speaker to Managers @ 67:

  Do you suppose Heath Ledger’s family is wishing he’d been prescribed a lower dosage of sleep medication right about now? (Let me add the caveat that the autopsy hasn’t even been performed yet, and I’m assuming he died of too much medication.)

  Every medicine has a side effect. Doctors must balance the potential good of the medicine with the potential bad. They aren’t just prescribing lower doses to make a social statement. Many medicines must be dispensed in smaller amounts and for shorter time periods as a safety issue.

• 76 SpeakerToManagers // Jan 23, 2008 at 8:43 am

  Ker_thwap @ 75

  I didn’t say otherwise. I specifically said that the right to pain relief superceded the doctor’s right to make decisions about medication for other than medical reasons. I also pointed out one situation (the assisted suicide debate in Oregon) where doctors had publicly admitted that pain medication was being systematically underprescribed for reasons other than medical.

  I must say I find the use of the example of Heath Ledger rather offensive under the circumstances. Even if you had strong evidence that his death was drug related, you have no reason to believe any drug involved was prescribed, nor any reason to believe the circumstances involve any of the issues we’re discussing here. This is at best in poor taste and disingenuous and could be construed as intellectually dishonest. I’d also call it offensive to Ledger and his family and friends to use his death as an example (and as I said, a poor one) in such a sensational way.

• 77 Ker_Thwap // Jan 23, 2008 at 9:17 am

  I’m guessing you like to win arguments if you need to resort to ad hominem attacks against my taste, truthfulness and intellectual honesty. Be that as it may…

  With all due respect to the family of the deceased, I felt it was illustrative of my previous point that doctors and the medical community aren’t as good at what they do as the general public seems to believe.

  I do suspect however that the average doctor is somewhat aware of this limitation and will do what they have been trained to do to the best of their ability for the good of the patient and will prescribe accordingly.

  I’m hesitant to accept the Oregon study as indicative of a world wide trend, as the doctors speaking out are potentially speaking out for a political reason, namely to support or denounce the euthanasia issue.

  I still contend that the right to pain relief, or the right to a good nights sleep in Ledger’s case is a tenuous concept at best. I believe by discussing the Ledger case and his misuse of medication it’s at least educational to the public of the dangers of just taking “two” pills when one is prescribed.

  I’ll balance that educational aspect against the infinitesimal risk of offending the Ledger family by an anonymous poster in a blog discussion.

  I’m reminded what my father taught me as a child when I was learning the rules of boat navigation. “Demanding your right of way is a sure way to get in trouble.”

• 78 SpeakerToManagers // Jan 23, 2008 at 9:57 am

  I’m guessing you like to win arguments if you need to resort to ad hominem attacks against my taste, truthfulness and intellectual honesty. Be that as it may…

  Read my post again. I said I was offended. That was a statement about the way I took your post, and indirectly, what I think of what you said, not an ad hominem attack. There is a considerable difference. I also said I inferred some things about the honesty and taste of what you said, and specifically about the act of saying such things under the circumstances. If you think saying hese things isn’t inappropriate, and that my inferences aren’t reasonable, please explain.

  With all due respect to the family of the deceased, I felt it was illustrative of my previous point that doctors and the medical community aren’t as good at what they do as the general public seems to believe.

  I don’t see how you can say this when you have absolutely no evidence that Ledger’s death has anything to do with prescription medication or pain relief. If you have more information on the subject, please say so, but you seemed to be saying that you had no such information but were going to say it anyway. Am I misstating the situation?

  ’ll balance that educational aspect against the infinitesimal risk of offending the Ledger family by an anonymous poster in a blog discussion.

  Do you not believe that if you were in a room with a member of the Ledger family that you statement would be offensive? Why would you say something offensive just because there was less chance of being heard? And what education is there in a statement that you yourself say is not supported by facts?

  I believe your post crossed a line of politeness. You may not believe that, but I certainly have the right, and I believe, the obligation to point that out. I frankly don’t care that much about the discussion itself, but I do feel that using Ledger as an example was inappropriate.

• 79 Seth // Jan 23, 2008 at 9:59 am

  SpeakerToManagers, so if a doctor wants to enjoy a nice romantic evening of dinner and a theater, but you show up in the middle and want her to prescribe pain relievers, your “right to pain relief” overrides her right to enjoy her own time (which is a non-medical reason)?

  That’s why I wrote that it’s the doctor’s right to prescribe as the doctor sees fit; the patient doesn’t have any right to force a doctor to do as the patient wishes.

• 80 Ker_Thwap // Jan 23, 2008 at 10:57 am

  Speaker to Managers @78:

  I apologize if I somehow offended you. The man was found dead amid a pile of prescription sleeping pills, the Australian version of what we know as Ambien. One of his last quotes was earlier in the week where he lamented to others about having taken two pills and only slept an hour. Numerous articles exist discussing his death, and suggest that the particular medication had some 500 complaints about very strange behavior while under the influence of such medication. I don’t think I’m out in left field for theorizing that one = possibly bad then two = more possibly bad.

  Would I propose this theory to a family member? Yes. I didn’t come out and state he was a selfish prick that killed himself despite having a two year old daughter. I suggested that his fate is potentially illustrative of the dangers of self medication and ignoring the potential side effects. I even added a caveat.

  I’m always a bit nervous when people claim to be offended when I intended no offense. It’s a common ploy to dictate what topics I can and can’t discuss. I’m not accusing you of such behavior, but that’s one of the rights that I care a lot about.

  However, I’ll admit that when writing my first question to you I glossed over the idea that your comments were specific to the “Oregon Suicide Debate.” I didn’t exactly pick up on that, if that’s what you were stating. That wasn’t entirely fair of me for assuming you were taking that specific argument and applying it to the general.

  It’s important to know that I’m a “statistics nut.” I’m always looking for the underlying reasons for why certain statistics exist. I want to know more about the sample population.

  Do doctors deny medication based on race, age, political beliefs, gender, hair color, profession, etc? Do they have reason to? Maybe the doctor just had six prior patients that were white skinned bleached blond male parking attendants who all ran into addiction troubles, it could just be your bad luck that you were the seventh that walked into his office. Does this mean the doctors are prejudiced, or is it indicative of common sense when they under-prescribe to you.

  Specific to pain medication for Fybro, doctors must use common sense in prescribing medication because the typical patient statistically speaking already has addiction concerns, many long term medications impact liver health, nausea, drowsiness, vomiting, become tolerant to the medication, etc.

  The euthanasia debate on pain medication isn’t necessarily indicative of the general debate because if the patient is dying, it’s far more important that the person be comfortable than worry about long term liver damage.

  Sorry if this is a bit disjointed, I have a tough time composing thoughts in a tiny box.

• 81 Shannon // Jan 23, 2008 at 11:00 am

  Well, the drug is a painkiller, there’s lots of things that can be used for. It doesn’t matter whether or not theres a specific condition called fibromyalgia, the market exists and all the people have pain symptoms.

• 82 Seth // Jan 23, 2008 at 11:24 am

  Fitz @ 74: When you’ve gathered up all the pudding and the price starts to rise, I’ll make more (and yours will be stale).

• 83 SpeakerToManagers // Jan 23, 2008 at 1:49 pm

  Ker_thwap @ 80

  I apologize in turn for overreacting. Your post reminded me of some things that were said on the day of the shootings at Virginia Tech; certainly not your fault. But that day made me somewhat sensitive to seeing someone’s fate being used as part of a political argument.

  Anyway, as I said above, I’m dropping out of this discussion; there’s too much logic-chopping and strawman-burning going on for my taste.

• 84 { aut0poietic } // Jan 23, 2008 at 4:19 pm

  Been lurking and thought I’d chime in (even if late in the conversation).

  Not sure anyone’s interested, but here’s the link to the study of Lyrica (pregabalin) for fibromyalgia:

  http://www3.interscience.wiley.com/cgi-bin/fulltext/110438360/HTMLSTART?CRETRY=1&SRETRY=0

  In general, it’s pretty clear the author of the NYT piece had an axe to grind, and spent more time portraying fibromyalgia as a non-condition than actually covering the science of the drug itself. It even looks like he may have gotten some of the facts of the article wrong (looking at long term effectiveness of drug and long term effects).

  Shannon @81 (but mostly just in general)

  This is not, in the strictest sense, a painkiller.

  In a very broad generalization: It basically “mutes” the several functions of the central nervous system.

  Specifically, it reduces release of glutamate, noradrenaline, and substance P as well as other neurochemicals.

  Substance P is probably the target for fibromyalgia, as it’s involved in transmitting pain signals to the central nervous system. All three of these are involved in regulating mood (depression).

  Reducing glutamate has been shown to reduce seizures–the original use for this drug (okay, the reverse really). But it’s also tied to our ability to learn and access memories (synaptic plasticity).

  All three of these neurochemicals are involved in so many processes in the brain that the long term effects are unknown but could include things like inability to “learn”/memory loss, heart problems (initiated by swelling and weight gain along with reduced noradrenaline), along with the usual SSRI side effects — and that’s just the 3 *known* neurochemicals (or at least the ones listed I could look up).

  From one (admittedly paranoid) layman: This is one of those drugs that scare the living daylights outa me.

  Okay, now I feel all sciencey!

• 85 { aut0poietic } // Jan 23, 2008 at 6:06 pm

  Ugh, That’s what I get for posting a novel and then editing it down while walking out the door. It barely makes sense. Anyway…

  I’m no Dr. The long term effects are just speculation based on what I read. I’m sure someone with a med background can correct any of my paranoid ramblings.

• 86 Ker_Thwap // Jan 23, 2008 at 7:08 pm

  Don’t let logic chopping and straw-men dissuade you from participating. Otherwise all you have left are the people that logic chop and use straw men and who really wants to read what they have to say?

• 87 Shanlea // Jan 23, 2008 at 7:10 pm

  Seth@79 - I agree, but I do think that the patient does have a right to timely treatment, especially when current treatments are not working, and a specialist is obviously needed.

  Example. I was having migraine symptoms back in August. The worst headaches in my life, regular doctor said it was stress and gave me narctics. Guess what, I was back, because the headaches broke through the narcotics. He did get a referal in to the neurologist for NOVEMBER, then went on Military Leave in September.

  That still left me in lots of pain, and no one to help me, no blood test, no scans, nothing. My doctor’s substitute made me feel stupid, saying it was stress, that I need to lose weight and just “deal with it” and oh look, here, here’s a different narcotic.

  When I finally saw the neurologist, he thought I was just a junky at first. Come to find out later I had too much cerebral spinal fluid putting pressure on my brain. Fun, huh?

  I still take too many pills for different things. (That condition, hypertension, asthma, etc) and there have been days that I get so mad, that I’m 34 years young, and I’m chained to all this pharmicopia, it feel hopeless sometimes.

  However, I won’t be chained forever, there are ways to make changes, and be less depenend on the medical world except for emergencies, or for the most chronic illnesses.

  Lots more fun out there for me *winks*

• 88 kit // Jan 23, 2008 at 8:06 pm

  Ker_Thwap: Maybe the doctor just had six prior patients that were white skinned bleached blond male parking attendants who all ran into addiction troubles, it could just be your bad luck that you were the seventh that walked into his office. Does this mean the doctors are prejudiced, or is it indicative of common sense when they under-prescribe to you.

  Yes I would say it is prejudiced of the doctor if I was underprescribed for my pain because the last 6 patients he saw had issues with addiction. I expect to be treated as an individual by my doctor, with individual attention to my needs. If not, I think the doctor is derelict in his duty.

  Specific to pain medication for Fybro, doctors must use common sense in prescribing medication because the typical patient statistically speaking already has addiction concerns,

  You mentioned this earlier by saying an alcoholic was a ‘typical’ fibromyalgia patient and now by saying ‘the typical patient statistically speaking already has addiction concerns’, but I am wondering if you can back this up beyond your own experience with your friend with fibromyalgia?

  From my own experience, I have yet to meet an alcoholic with fibro. In fact, there is some reason to believe that alcohol may exacerbate fibro pain, and so most people I know with the condition either limit their intake or do not drink at all.

  As far as addiction to pain medication goes, there is a lot of evidence that people with chronic pain conditions are less likely to develop addictions than those who do not. For example, this government webpage quotes the National Institute on Drug Abuse as saying, “Studies indicate that most patients who receive opioids for pain, even those undergoing long-term therapy, do not become addicted to these drugs.”(3) One NIDA-sponsored study found that “only four out of more than 12,000 patients who were given opioids for acute pain actually became addicted to the drugs.

  Since you are a self-described statistics fan, maybe you can produce some statistics for me which contradict this fact?

  On the other hand, if you are saying doctors are statistically likely to be worried about addiction, whether or not there is a need for that worry, I would completely agree with you. The drugwar has become such a pervasive issue in this country that many doctors are afraid to prescribe needed medicines as a result.

• 89 Ker_Thwap // Jan 23, 2008 at 9:28 pm

  From WebMD.com specific to depression.

  Common triggers of depression include:

  * Family history of depression.
  * Grief over the loss of a loved one through death, divorce, or separation.
  * Interpersonal disputes.
  * Physical, sexual, or emotional abuse.
  * Major life events such as moving, graduating or retiring, etc.
  * Serious illness. Major, chronic, and terminal illnesses often contribute to depression. These include cancer, heart disease, stroke, HIV, Parkinson’s disease, and others.
  * Substance abuse. Many people with substance abuse problems also have major depression.
  * Being socially isolated or excluded from family, friends, or other social groups.

  While it’s not specific to Fybro, it is specific to depression sufferers. It’s entirely possible I’m overestimating it’s effect based on my friend.

  My googling skills returned mixed results on the percentages based on various studies. This pretty much sums it up.

  According to a 2006 research report in the Pain Physician Journal (Volume 9: pp 215-226) over 11 Million Americans used prescription opiates non-medically. The research also showed that in their study nine percent of their pain management patients were abusing their medication and other studies they reviewed showed as high as forty-one percent were abusing their medication. In addition to drug abuse problems the report also stated that sixteen percent of their patients were using illicit (street) drugs and other studies showed as high as thirty-four percent. Perhaps the most disturbing information in this report stated that over ninety percent of pain management patients in the United States were prescribed opiates.

  All in all, I believe a doctor would be derelict in not at least addressing addiction/dependency concerns.

  I will admit that, whichever study you choose, the long term pain management patients have a much lower addiction rate than I expected.

  I still tend not to take studies at face value, I want to know how the controls were set, information about what kinds of pain were managed, etc. I also found the following paragraph about dependency vs. addiction to be enlightening. It’s rather likely I had my definitions wrong and confused dependency for addiction.

  Having worked for the government, I know first hand the horrible statistical practices utilized by certain employees with an agenda. Hopefully NIDA has hired actual statisticians to run their studies.

• 90 Seth // Jan 23, 2008 at 9:29 pm

  Shanlea @ 87, if a doctor is incompetent (or just acts that way), I consider that a form of fraud.

• 91 kit // Jan 23, 2008 at 10:22 pm

  Ker_thwap: I appreciate you citing a source here. It’s true, studies on this topic (and all drug related topics) are often very loaded because of the political agendas on all sides.

  And of course, then we have to define addiction — probably a debate for another time.

  that sixteen percent of their patients were using illicit (street) drugs and other studies showed as high as thirty-four percent.

  Which I would suspect is likely because one of the more effective natural painkillers is illegal to use in this country, even for medical reasons. It took us 90 or so comments for us to reach the drug war debate; on reflection I’m surprised it took so many.

• 92 Michael Grosberg // Jan 29, 2008 at 2:55 am

  I may have missed some post and this has been discussed already, but - what does a right to be free from pain even mean? Rights are legal terms. How can laws stop nerves from firing in your body? You can have, perhaps, a right to pain relievers. This would mean being able to buy *any* pain relief drug over the counter, no prescription needed.

  However, as we all know, drugs tend to have side effects, and I’m sure Lyrica has some, too - the NYT article mentioned some of them.
  Is taking the decision of prescribing drugs out of the hands of doctors and into the hands of patients a good idea? I certainly don’t think so. I mean, If lyrica’s in the list, why not morpine? Vicodin? why should Dr. Gregory house, who is in constant pain, not be able to purchase all the Vicodin he can?

  Pain is an awful thing, but if the side effects cause harm to the patient - and doctors may be more aware of their severity than patients - you can’t blame doctors that would rather see their patients live with constant pain than suffer from those side effects.

  In short, until we get a drug that has little or no side effects and is not addictive, the whole idea of a fundamental right to be free from pain is crock.

• 93 skzb // Jan 29, 2008 at 3:18 am

  The right to be free from pain means that if a given society has the technology to relieve pain that technology ought not to be withheld from any member of that society. This is specifically not addressing purely medical concerns.

• 94 kit // Jan 29, 2008 at 3:21 am

  Additionally, I was neither arguing we should be utterly free from the sensation of pain nor trying to set out a legal standard for a “right” which would hold up in court. A bill of rights for a society is crafted using extensive research, hours of debate and many drafts, very different from the average blog post.

• 95 Seth // Jan 29, 2008 at 6:18 am

  Michael #92, I think that patients should be able to decide for themselves what drugs to use. Sensible people will consult with experts (doctors) in order to determine what’s best. Stupid people will harm themselves. There are no laws that can prevent the latter, at most they can affect the methods used.

  There can’t be a “right to be free from pain” because in some cases that isn’t even possible. Rather, a right that “people refrain from preventing X from doing what he can to ameliorate his pain, and people refrain from preventing Y from helping X do so” should exist.

• 96 Ker_Thwap // Jan 29, 2008 at 11:31 am

  Well, here’s one danger of self medicating. Luckily, I … never inhaled. We’ll go with that.

  http://news.yahoo.com/s/nm/20080129/hl_nm/cancer_cannabis_dc

• 97 kit // Jan 30, 2008 at 12:48 am

  cannabis could be expected to harm the airways more than tobacco as its smoke

  Pretty vague and noncommittal language.

  In the near future we may see an ‘epidemic’ of lung cancers connected with this new carcinogen

  New carcinogen? People have been getting high since the turn of the century. Where’s our epidemic?

  Contrast with this study for example: Cannabis exerts protective effect against cancer

  The issue of cannabis is an extremely polarized one, and as a self-described statistics fan I am sure you are aware of the effect politics have on scientific studies.

  Further I don’t know what this would possibly have to do with self-medicating — aren’t there medications prescribed by doctors which increase ones risk of cancer or death through other means?

• 98 Seth // Jan 30, 2008 at 10:18 am

  Lots of things are harmful, might be harmful, might be expected to be harmful, . . .

  The issue is who gets to decide whether the benefit outweighs the harm: the individual concerned or some third party. The former case is freedom, the latter is tyranny.

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