Category Archives: Medicine and Health

And the mammogram nonsense goes on …

Given my previous curmudgeonly rants about the general uselessness of mammograms I was pleased, nay, delighted when when the Canadian Task Force on Preventive Health Care issued new guidelines – ever-so-gently suggesting that perhaps this pop culture myth that ‘mammograms save lives”, especially that of younger women, is a crock. Naturally they phrased it in dry, epidemiologic language, but you’d thought the poor geezers had suggested women shouldn’t be allowed to vote.

The response, anecdotal, I’ll grant you but shrill, emotive and generally overwhelming was: Well! How dare you condemn women to death you dreadful guideline-writing scum you. Letters poured into newspapers and editorials pilloried the Task Force – the inevitable line was “having a mammogram saved my life”.

Politically incorrect and uwomanly of me it may be, but my first thought was, ‘Really?! How do you know? Given that a teensy mass that couldn’t even fill the head of a pin is now called a cancer and the person who’s had it a survivor?’

Perhaps less vocal people felt relieved that the Task Force had articulated what they had thought all along, that it may not be such a splendid thing to squish your breasts between two metal plates once a year even as you ended up dosed with radiation but I don’t know.

As far as I’m concerned the Task Force didn’t go far enough. They clearly stated that women who had the BRCA1 and 2 genes or had a family history continue to have regular mammograms, even as early as 40 and added that older women, those over 70, should also be screened. They politely did not say, trust us, if you have cancer you’ll know it. Ideally, a mammogram will find a fast-growing cancer early. By and large, it won’t. What it will find is what all those cancers that don’t want to be found, the bits and pieces of slightly abnormal tissue we all have – and which will be found if we go looking for trouble. Which is essentially what screening is.

Alas, screening is all too often confused with ‘cure’. Or ‘treatment’. Which screening simply cannot be. Screening is a way to make obvious something that was there that we didn’t know about, theoretically to ‘catch’ something dangerous early. As if.

But, hey, we’ve got the runs for the cure and all those pretty celebrities (and nonentities) going on the telly to lecture us on how we should all be focused on preventive care and take our radiation. Or have someone thrust a sharp object up our colon. Yes, sharp. The kind of thing that can slip and perforate the bowel and have you in the ICU faster than you can say colonoscopy.

But I wax incoherent.

So, once again, a brief lesson in how cancerous cells evolve. Cells divide over the course of their and our lives; with each division the odds of a ‘mistake’ increases. Which is why cancer is generally a disease of old age. The more those cells divide the greater the odds that something will go askew and result in what, if found, we will call cancer or pre-cancer or some damn fool thing. (Of course as we get older our cells divide more slowly which is why most older people die with cancer not of it.)

Then we attack what we’ve found with all the tools of the early 20th century: radiation, surgery and harsh drugs. True, a handful of cancers are actually treatable with some new meds, usually fairly rare cancers, and a few drugs can increase life span. We are better at targeting and focusing and not killing quite so many non-cancerous cells. But the reality remains that we’re still focused on zapping and poisoning and cutting out cancers, just as they were in close to a hundred years ago and, barring the smoking/lung cancer connection, no closer to understanding why some people get cancer and others don’t.

That’s the question we should be asking and flinging money at, not mammograms.

Of course why the guidelines come as a shock to anybody I do not know, since we’ve known, definitively, since the 90’s that mammography is a crude screening tool at best. Plus, for women under 50 the risk benefit ratio is beyond ridiculous. (What we really mean by that, of course, is women who have not yet gone through menopause not women under 50 but we do love our decimal groupings – maybe it’s that counting-on-ten-fingers thing, so much easier). In other words, the number of false positives, biopsies to confirm one does not have cancer and actual false diagnoses are phenomenally high. (That last one, by the bye, simply refers to the women who end up being told they have cancer when they do not and end up in that most dismal of all “treatment” regimens for no reason at all.)

We have also known for a long time that not all cancers want to be found; that in fact over-diagnosing and over-treatment are rife when public policy institutionalizes screening, whether it’s PSA testing or colonscopies or mammograms.

But the emotional anecdotes continue to mount as individuals tearfully ask why the rest of us (and that nasty Task Force) would condemn them to death. Ah, easy there sport. Nobody’s condemning you to anything. Yes, women do get breast cancer. We have all had a friend or relative die of the disease. (Yes, including me. I sat with her as she died.) But simply because something happens does not mean it’s an epidemic or a scourge.

Finally, health policy is not clinical practice. Policy, guidelines, are simply a way for institutions to recommend what appears to be best practice. This does not mean that individual women cannot have mammograms or that individual doctors cannot counsel individual patients to have them. It simply means that a blanket policy recommending all women over a certain age undergo a procedure that is neither benign nor risk free is not a good idea.

Furthermore, something the Task Force did not mention, probably because they did not know it, is that women prior to menopause go through a phrase of life called perimenopause. Perhaps you’ve heard of it. It’s the years leading up to the cessation of the menstrual cycle when some women have hot flushes and mood swings and can get depressed and irritable. Estrogen levels fluctuate during this time and estrogen, boys and girls, is a hormone that causes cells to proliferate. It does that in the uterus during the menstrual cycle and also in the breast. So, the risk of a false positive raises commensurately for perimenopausal women because higher estrogen = lumpy breasts. More often than not these will resolve, go away, with time as an elegant Scandinavian study demonstrated some years ago.

So tell me again why women in their 40’s would want to subject themselves to this? Oh yes, because they believe in the medical model and the linear nature of physiology. Worst, we have all been subjected to such a barrage of pink ribbons and nonsense about prevention that women honestly believe the dratted technology actually works.

For my part, a certain weariness sets in as I watched this play out, not to mention the inevitable expert huffily saying, look, it’s science and you can’t argue with that. Actually I can. But this is one time the best-guess statistics, hypothesis testing, and empirical data all back up the physiology and common sense.

But I guess a lot of women have decided that the Forces of Evil want to take their mammograms away. How does one explain the Forces of Evil have a lot more on their mind these days than women’s breasts?

Mental Health Misunderstood. Again.

According to yesterday’s Globe and Mail, a report from the Vancouver Police Department identifies the deinstitutionalization of the mentally ill as a major problem for police, who have become de facto mental health workers.

“We certainly have identified individuals that we wonder whether it would be healthier – both for themselves and the community – if they were in institutional care,” Vancouver Police Department Inspector Scott Thompson is quoted as saying at a press conference. “The difficulty,” he added, “is that [that] is a medical question. That’s not within the realm of policing.”

Ah, but there’s the rub. It’s not a medical question or medical issue or even a medical decision. It’s a political and economic and sociocultural one.

When the decision was made to – for all intents and purposes – shut down the single major institution this province had for the mentally ill, Riverview, it had nothing to do with the doctors and nurses and social workers; it was a decision made at the Ministry of Health and provincial and federal level. It had to do with the general tenor of the times, notions of autonomy and individual rights  – not to mention a way to save cold, hard cash.

Riverview, once upon a time

To some extent it was in reaction to the authoritarian, pseudo eugenics-type of position taken in earlier decades where the mentally ill were forcibly sterilized, forced to undergo horrible procedures (like frontal lobotomies – driven by the enthusiasm of a single nutty doctor incidentally) and unethical experiments on prisoners and others considered somehow lesser human than the rest of us.

Now the chickens have come home to roost. The downtown east side is a morass of misery and it is the police and the justice system who increasingly have to deal with people who are incapable of making rational choices for themselves. People who live next door to drug addicts and pushers and pimps.

Yes, it is a disgrace and yes, many of the people are sick and would do far better in the wooded confines of Riverview Hospital. But we’re closing Riverview (the scuttlebutt is that the land is worth a mint and that plays a major role as well)

Many years ago I wrote a document for and on Riverview; I spent a few days wandering the grounds and halls, talking to psych nurses and doctors and patients and all kinds of people. I watched as mentally ill individuals happily wandered through the garden and attended art therapy and crafts workshops. If they had a bad episode there were medical professionals on hand to help.

But.

As a society we decided a long time ago that we couldn’t afford it, that it wasn’t a viable alternative, that it wasn’t the way to do things.

Now the police are unhappy about how it’s all unfolded and most of us don’t like it much either. But it’s not a medical decision. Or even a personal one – talk to the families of schizophrenics or people who feel fine on meds and decide they don’t need them any more, become psychotic and head for the hills. Even if the hills are only in their mind.

Mental illness is complex and misunderstood – but it’s not medicine that’s let us down. It’s ourselves.

The clinical arts made clear

For years I have been whinging on about the overuse of medical technologies, in my writing, teaching, speaking (occasionally stooping so low as to corner a hapless victim at some dull cocktail party who’s made the mistake of innocently asking me what I do/am working on). And finally, the Archives of Internal Medicine has backed me up with a new, elegantly designed study from a group of physicians in Israel.

(Oh North America, why do you ignore the nuanced questions? Why is it that American and Canadian researchers confine themselves to reductionist questions like Pax2-dependent transcription activation and other such unpronounceable minutae, leaving the critique and analysis to the Israelis and Finns and Norwegians and Dutch and so on?)

Then again, it is not just researchers but us on this large continent, we who believe in high tech and guidelines, rules and benchmarks. We has seen the enemy and he is us, to coin a phrase. Our cultural template, our social world, our beliefs and values predispose us to believing in the power or science and technology; we love our smartphones so medical technologies – those lovely acronyms like MRI, CT and PET – must also be the royal road to answers. So we push push the doctor to send us for “tests” so we too can receive our god-given right to radiation.

What we inevitably forget (or just don’t know) is that what medical technologies measure are, at best, only pale imitations at best of the complexities of disease and illness.

When I remind students – seniors, undergraduates, their ages don’t matter – that “an MRI or CT scan can’t tell if that lump is benign; it’s a person, a human being who makes that determination” I can see that shock in their faces.  Because the seem to have forgotten that it is a fallible human being, prone to errors and fatigue and over- and lack of confidence who figures out the test, not the computer/technology.  And people can miss things, over- or under-report; people can exaggerate a problem because they’ve been sued or are in a hurry to get home and get to their child’s soccer game.  (Came as a shock to you too, didn’t it? You kind of thought technology trumped clinical judgement as well.)

Back to the Israeli study done by Liza Paley, MD along with physician colleagues Zornitzki, Cohen, Fredman, Kozak, and Schattner. They examined newly admitted patients to the emerg for 53 days, checking to see if the various tests and scans and so on ultimately aided in the final diagnosis. Sure enough, and wonderfully confirming my own cranky comments, they found that “more than 80% of newly admitted internal medicine patients could be correctly diagnosed on admission and that basic clinical skills remain a powerful tool”. In other words, with only a handful of old, cheap lab tests (which were found to be “crucial”) plus a detailed history and decent clinical skills, you could narrow down the diagnosis and figure out how to treat the patient.

In fact, up to 90 percent of correct diagnoses were the result of history, exam plus some basic blood work (hematology and chemistry, urinalysis, EEG chest x-ray – which, I would remind you, contains anywhere from a tenth to 1/400th of the radiation of a CT scan.

These are not the tests we associate with medical high tech though. These are old tech, based on boring old 20th century research. No genetic tests, no cool monitors or flashy gadgets.

“Our results do not mean that sophisticated studies need not be used after admission, but they do suggest that their choice should be guided by the clinical data on presentation,” wrote the authors  in the Archives.

Of course our complicity in all this, particularly in community medicine, was a not a part of this study; neither was our belief, our faith in the power of the technology; superhuman, infinitely superior to the biological brain and, of course, infallible. Stemming from our belief that disease somehow has an independent reality – that it is the “other”, evinced by our metaphors (“killing” the cancer, “fighting the disease) and attitudes – that is observable through “scientific” means, ergo technology.

In fact disease and illness are nothing of the sort. A manifestation of human frailty, highly individual and affected by everything about us and around us: who we are, who we were, our personal and family history; our lives and fears; our environment and social biases – all the many stresses and strains we’ve been exposed to, from what we ingested to what we’ve invested. Ultimately, what matters isn’t that label, that diagnosis, however much it might provide us with comfort, but the care we receive.

And that, boys and girls, is the art of medicine without which the science hasn’t got a chance.

Riotous Living

Coming at things a bit late – no surprise there, particularly in the summer when I teach and run around like a crazy person – so it’s taken me a bit of time to get to that Stanley Cup riot thing.

Fahrenheit 451?

Like a lot of people I watched it evolve with fascinated horror on CBC television; struck by the  destruction and sheer, wanton glee in those fires and general mayhem.  The restraint shown by the VPD also impressed me – and since I have been critical of heavy police presence in the past this did strike me as … civilized.  A camera crew caught one particular young man in mid rant as he poked and yelled at a couple of cops who calmly ignored him. Poke the bear with a sharp stick why don’t you, I thought. Later, quite a bit later actually, I saw him being arrested. Frankly, I’d not have displayed such forbearance with a drunk kid having a tantrum if I was holding a baton.

Restraint aside, one did have to wonder why nobody seemed to even consider that this was a a problem in the making, A Situation, what with the number of people downtown, the amount of alcohol consumed and the sheer intensity with which this city greeted that Stanley Cup final. Feelings ran so high that last week you could cut the air with a knife, even in stores just going about your business, as I was. And it didn’t occur to anyone that trapping a whole bunch of people in a five block radius might be a bad idea? Just asking.

Then the immediate analysis that of course it was really a vile bunch of outsiders, no doubt lurking in the wings waiting for their chance to wreak havoc. Like movie extras, just waiting for their five minutes of fame (and a chance to wear those balaclavas).

Ah yes, the outsider theory. Which, as anyone who’s ever read an Agatha Christie knows, is never the case. For in the immortal words of whatshisname, we have met the enemy, sir, and he is us.

But we are fond of that notion of the outsider and hate to give it up, be it in terms of disease or terrorism or anything else. We don’t like thinking that our friends, neighbours, colleagues and those nice people living around the corner have it in them to behave so badly. Most importantly, we don’t like to believe that we have it in ourselves.

Yet that’s why we have police and judges and juries and international courts. Individuals, once tossed into a group, lose all decorum and – for the most part – are reduced to their lowest common denominator. And that all too often is all that is loutish, cruel, and bloody inelegant..

As with disease we prefer to think of the problem as somehow external to us, not our own cells turning rogue, with cancer, or our own immune system becoming destructive as in rheumatoid arthritis or lupus. Far better to believe in the metaphorical infectious disease, the tuberculosis bacterium, the smallpox virus, the malaria parasite transmitted by mosquito. Even swine or bird flu. Identifiable and on the outside, attacking and therefore something we can attack, mobilize forces against, fight – be it through an analysis of its genome or killing it with chemotherapy.

Comforting thought that – that we can somehow protect ourselves if we just put our minds to it. The problem is that it’s not the way even a microbial disease behaves, given that a virus or bacterium or parasite is always, in epidemiological terms, necessary but not sufficient. The immuno-competence of the host, his or her life, diet, life circumstances and a host of other factors go into determining whether or not we get ill.

Think on that the next time you try to “fight off “ a cold or hear someone say they won’t let the cancer win. There are no winners or losers in physiology, any more than there were any winners in that Vancouver riot. We all pay for the broken windows and stolen property and we all have to deal with the moral, aesthetic and social consequences.

Maybe if we recognized that to begin with we’d be better equipped to face it in the first place. And wouldn’t have to run around setting fires and losing our heads.

Physiology 2.0

An older woman of my acquaintance misplaced her watch recently. Not a big deal, you’d think. She found it a few days later with the help of a friend – unbeknownst to her it had slipped off the television and into a drawer. What got my attention was her extreme secretiveness, so convinced was she that people would suspect she had Alzheimer’s or dementia or what-have-you (because of her age).

Somewhat in the same vein I am often asked – in strictest, pain-of-death confidence – about a pain here, a twinge there; a slow-to-heal cut or some bleeding that my interlocutor is convinced is something dire, cancer probably. Almost always with some judicious questions I can reassure the person; the pain is probably a pulled muscle (if it doesn’t improve over time then perhaps further investigation might be called for), the blood loss benign (and common), the cut merely infected and in need of antibacterial care. The relief is inevitably palpable. Terror had literally been keeping the person up nights.

I don’t blame them. Everything they hear about health, and there is a lot of it around, is about something horrible. In truth, we are all so inundated health “news” these days, so saturated with medical “updates” – in every medium possible – that it’s virtually impossible not to become a hypochondriac at one point or another. Especially since medical problems are presented not in terms of real physiology which is messy, unpredictable and slow (but often very resilient) but in entertainment terms: Monster tries to eat New York, hero rises to vanquish monster, stuff happens, the end.

The heroic angle is ever present. We will discover the gene that “causes” cancer (Really? How’s that working out?), tweak it and presto! Problem solved. Well, not right this instant of course. Oh, and did we mention there are these fibres in those bags you now use to carry groceries that can cause beri beri? Oopsy woopsy.

That’s not how physiology works.

From the immune system to neurons, our physical selves advance, retreat, retrench; go forward one step and back two (even with something ostensibly simple like a flu virus). Age on the one hand creates fragilities, on the other speaks to great endurance (hey, there are a lot of chances to die before you hit 75). Physiology is complex, dynamic and infinitely changeable, even in the same person, from one moment to the next.

The root of this reductionist thinking came after the second world war when money and attention, not to mention serious institutional support, went towards medical research, the National Institutes of Health, Health Canada and the like. And our focus, as the late Yale epidemiologist and physician Alvan Feinstein wrote, turned away from the person (patient) and towards disease. Plus, we started flinging large sums of money at medical research which, in turn, began singing its own praises, which is hard to do unless you create a bogeyman you are battling.

So, nobody mentions that we live longer, healthier lives (in the developed world) than any generation ever. That over half of all people over 65 are alive today and doing very well thank you very much. What we do hear is that there are umpteen dreadful diseases out there, skulking, lurking.

So we freak out over minor aches and pains and mumble “Oscar material” when some fellow played by James Franco heads into some canyon and gets stuck. Look, I’m glad the fellow saved himself and yes it must have been dreadful but the real story is not dramatic but in the day-to-day lives of all those amputees who have to cope with getting on with their lives. The real story isn’t in the escape but life after that idiotic daredevil stunt. Except life with a disability is painfully difficult, often humiliating and can make even a grown man cry from frustration. Boring. Not at all Oscar material.

Is it any wonder real life, only too often – when it hits, as it always does – comes not only as a rude shock but as a personal affront?

Take another curmudgeonly peeve of mine. Violence. Movies, television shows, games – the level of gore has steadily increased even as our ability to emphasize or react in any appropriate form has gone down. Sure, I enjoy watching the evil genius get his or (more rarely) her comeuppance; I like a watching a building blow up and cops shooting at bad guys. What I do not enjoy is the inevitable desensitization these increasing levels of violence have on our collective psyches. (Or the noise: I seem to be the only person in the western world with intact hearing.)

It seems that we have all become so immune to the ugly impact violence has that even an essentially comic-book hero like James Bond is portrayed not as the suave Sean Connery straightening his cuff links after a dustup but is rife with fake blood and cringe-worthy torture scenes that make one feel vaguely ill.

Then. Then. (Here we have to pause for me to give a heavy sigh.) Then, the victim of aforesaid torture or flying bullet gets up and carries on. If he’s the hero, that is. Later, we hear that he was lucky, the bullet “grazed” the skin, it was just a flesh wound.

Pardon me?! What flesh would this be? Um, human? Frankly, I have yet to meet a real human being who was able to recover from even a kitchen accident in a day. (Hey, you try it. Make a deep slice in your finger as you’re chopping carrots or a slice of bread and you tell me how long it takes to heal. More often than not you’ll take the bandage off way too soon, the cut gets infected and starts to throb and the whole process starts all over again.[1]) The consequences of violence are so rarely seen as to be invisible.

No doubt this is why we get those news items of seven-year-olds firing on one of their pals in jest without realizing that real guns do real damage.

Physiology is hard. Healing takes time. Bodies are fragile yet amazingly resilient. It all depends on the person, the situation, the amount and place of the damage. Even a broken ankle can lead to a lifetime of causalgia (you don’t want to know – major, lifelong pain) and someone can fall off a cliff and survive with minimal injuries. It’s not possible to predict and it’s probably better not to try that last one. Politically, such attitudes end up reflected in the acceptance for President Bush’s redefining torture in defiance of the Geneva Conventions and in our nonchalance around so much global suffering – even as it convinces us that we’re dying from some dreadful disease – when all we’ve got is a hemorrhoid.


[1] (First Aid note: when you’ve cut your finger or hand and the skin has healed over but it’s red, swollen and painful, what’s happened is that bacteria are trapped and your immune system is responding, but slowly. To help the macrophages along, you need to clean out the bacteria physically by making a tiny incision and letting the blood and pus ooze out. Sounds horrible but there’s physiology for you. Then soak in hot water with a drop of disinfectant, e.g. Dettol, or just water in a pinch.  Cover with antibacterial cream and bandaid.)

MS “liberation” therapy – not in Canada (eh)

The story so far:  An unpredictable disease in both course and symptoms, multiple sclerosis (MS) is a terrible diagnosis (and is more common in Canada than anywhere else – perhaps because we’re so far north and lack sun and Vitamin D half the year).  Some people can live for decades with only minor symptoms; others deteriorate with alarming speed. And nobody really knows why; our best hypothesis is that MS is an inflammatory autoimmune disease, one where the immune system turns on itself and destroys the myelin “sheaths” surrounding the various nerves in the body.

Although it was identified in the mid 19th century by the French physician and thinker Charcot, MS is a recent disease, probably because it is devilishly difficult to identify – essentially the diagnosis is made by ruling out everything else.  An MRI, that shows up the lesions that the myelin loss causes, is the ostensible gold standard of MS diagnosis but even that’s tricky because several other conditions cause similar lesions, e.g., Lyme Disease.

Unusually, for an autoimmune disease (which rarely get the same kind of air play as cancer and heart disease even though they’re terribly common), MS has been much in the news lately.

Apparently, a certain Dr. Zamboni, an Italian physician whose wife had MS, has hypothesized that a lack of blood flow to the brain could cause many MS symptoms (known by the unwieldy moniker ‘chronic cerebro-spinal venous insufficiency’ or CCSVI) and that clearing aforesaid blood via angioplasty (a common procedure in cardiac disease) could relieve many of the onerous symptoms. MS could even be said to be “cured” according to some proponents.

Well! The experts and researchers are miffed. This so-called “liberation” procedure has been roundly criticized and a panel of Canadian experts has refused to countenance a clinical trial, insisting something so untried is probably untrue.

Maybe it is. But a great many MS patients have not paid attention to the experts and are flying to various places like Costa Rica to have the procedure done, paying out-of-pocket because they so desperately want to feel better.

What I find fascinating is that the argument seems fixated on the notion of “cause”.If MS is caused by the destruction of the myelin, or so the narrative runs, then this venous insufficiency notion is incidental and getting rid of it, useless.

But what if these blocked veins are simply a side effect, as it were, of the inflammatory condition (if indeed that is what it is) we call MS? What if clearing such blockages relieves symptoms for patients for six months or a year or longer? Why shouldn’t it be offered as an option, at least for those MS patients whose veins are blocked?

We give dying cancer patients ridiculously expensive medications in the hope that they will live a few months more. We transplant multiple organs into small children knowing full well that the vast majority of them will not live very long. We provide heroic measures for people whose life expectancy is pretty damn short. So why can’t we at least consider providing a procedure for those MS patients who might benefit – closer to home and without bankrupting them, which was, after all, how Medicare was originally envisioned: a program to prevent Canadians from losing their all in the case of catastrophic illness.

It’s true that for now there’s only anecdotal evidence to support this procedure. But, umpteen clinical trials have shown the connection between high cholesterol and dying of heart disease is tenuous at best if not invisible, but we still insist people lower their lipids. Doubly so if they’ve already had a heart attack. There is little evidence that in people over 60 most cardiac surgeries have any benefit (pharmacotherapy works just as well), but we do them anyway.

But no, now with this treatment we’re gone all cautious and conservative and gosh-we-couldn’t. Venous insufficiency isn’t the cause of MS, trumpeted the expert panel, so the bottom line is that we shouldn’t do it. Heck, we shouldn’t even undertake a test of it.

So why get so fixated on cause – when the myelin hypothesis is still only that, a hypothesis. One that most people agree on, true, but simply because a lot of people think something is true doesn’t make it so.

Many patients insist the procedure has helped. So, are they all nuts? Deluded? Is it placebo? (Bearing in mind that ‘placebo’ means ‘to please’.) The placebo effect is, after all, a wondrous thing and people who have just spent a whole bunch of money flying to Costa Rica for surgery are predisposed to believing they haven’t wasted their time and money. Maybe they just needed a few weeks of rest in a nice hospital in an even nicer tropical paradise.

But the only way to know with a modicum of accuracy is to do a clinical trial: find about 100 MS patients who do have this blocked vein thing, give half of them the real surgery, the other half a sham surgery and see what happens.

In the interim, why not offer it as an option for symptom relief. That’s all most drugs are.

What’s the point of turning it into a battle of wills, an argument about who’s right about the cause of MS? Dr. Zamboni, as nearly as I can make out, is not claiming that his treatment is magic or truth, merely that it seems to help some people.

More later on classification systems and their essential role in medicine in a later post – for now, perhaps medicine and the medical establishment needs to remember that its role is not just about cure but care. Which is what MS MS patients need right now.

Medical myths, cholesterol and more

“If only I’d known … ”  I’ve heard it a lot, that phrase, when people talk to me about their various medical misadventures. ” If only” someone had realized the potential consequences of that surgery or those drugs or that ostensibly innocuous test – before they’d done it. Maybe they’d have asked for a second opinion or talked to a few people who had done the same thing. Waited. Not assumed that it was safe and easy, like the brochures promise. Except of course most of us don’t know – so we go ahead. It’s only later that we realize that everything carries a risk; all drugs have side effects; all medical interventions are ambiguous.

The popular narrative is self-assured, authoritative and leads us to believe that medicine Knows. Knows why we get sick, how we get sick. The problem is, most of the time it does not. Particularly when it comes to prevention.

Acute illness – well, as a rule it does OK but the model is different. Let’s face it, if you’ve just fallen off a ladder and heard an ugly “crunch”; you have a temperature of 42C and a stiff neck and are delirious; if you are doubled over in agony with abdominal pain – the risk of what could happen without medical intervention is probably far worse than the alternative. So you rightfully race to the ER and get help – do whatever it takes.  Hey, I’m with you; when  I’m deathly ill I’m not stopping to look at statistics or evidence or googling “abdominal pain”, I want Dr. House.

The problem is when we extend this model to prevention. That’s when we’re walking along, singing a merry song – having a good day thank you very much – when our glance idly falls on some seemingly innocuous headline or pamphlet or poster warning that You Are At Risk. A ticking bomb, in fact, unless you do something immediately. You need that blood pressure checked, those glucose levels looked (diabetes on the rise you know), your cholesterol measured. You need to head over to that mammography clinic post haste. Or if you’re a guy, you need to have that PSA looked at. Or a bone density test. In other words, you need to engage in “pro-active” health care. Most people naively believe that this is good advice – and that’s when they can get into trouble (and many realize medicine is nowhere near as blindingly accurate in this as most of us think).

On television, on web sites, on the radio – whatever it is, whether it’s drama or news, it’s all presented with authority. Implication: we know what causes heart disease, we know how breast tumours evolve into cancer, we know how normal physiology morphs into pathology.

The trouble is we don’t.

And unlike those doctors on House or Mercy or whatever the medical show du jour happens to be, the outcome in real life is rarely neat and often not pretty. Contrary to what the news items tell us, it’s not all overwhelmingly positive and very little is “miraculous” or a true “breakthrough”.

Here’s where the risk/benefit thing kicks in. If you’re in pain, sick and feeling like hell, you don’t care what the risks are. It has to be better than whatever’s going on right now. Plus, that high temperature and stiff neck could be meningitis – which could kill you in less than 48 hours if you don’t get antibiotics. That crunch in your spine could mean paralysis. That abdominal pain could be appendicitis. Whatever the down side of the surgery, the side effects of the drugs, well, they probably aren’t worse than death.

But when we merrily head over to the clinic to have our blood checked for lipids, we are assuming that those panels of experts who’ve decided that anything above or below X is bad and wrong and abnormal know what they’re talking about. We assume that “they” know what ideal blood pressure is for a person of our age and weight and size; a person who eats the way we do and has the family we have; is, in other words, us. When we docilely head over to have mammograms and PSA testing as we’re bid, well, that’s where it gets tricky.

Take cholesterol. True, in a fairly smallish subset of people, hyperlipidemia or the tendency to create more cholesterol than the body needs, will create problems. Often, these are the folks who have had one or more close relatives drop dead of a massive coronary at a young age, say 50. Interestingly, often there is a geographical connection – people from northern countries such as Scotland seem to have this tendency.

What evidence there is (and virtually all of it comes from drug companies) does tell us that after a person has had a heart attack, lowering cholesterol with medication does seem to reduce their risk of a second one. But in people who’ve never had a heart attack, what is called  primary prevention? Not so much.

Not that you’d know it from the television ads for statins and other cholesterol lowering meds on TV that here in Canada we get from across the border. (Direct-to-consumer ads are only allowed in the U.S. and New Zealand – all other countries ban them.) They make it sound as though it’s a moral imperative to take drugs if your numbers aren’t right. In fact, cholesterol is needed for normal physiologic functioning. It protects against infection and not having enough, as Finnish researcher Ravnov has shown, can be dangerous.

(For more see his site: http://www.ravnskov.nu/cholesterol.htm and also the Cholesterol Skeptics site: http://www.thincs.org/ which includes hundreds of names of physicians, researchers and other bit ‘names’.  Also see “Should we lower cholesterol as much as possible?” in the BMJ (3 June 2006; Vol 332, pp 1330-32)

What they don’t tell you is how many of those expert panels the makers of these drugs have funded. Or that the whole idea behind cholesterol as a risk factor came from the Framingham study, a longitudinal study begun in the late 1940’s in Framingham (Massechusetts), in a report where a researcher hesitantly noted that it seemed as though cholesterol might be a factor in heart disease. (That was what the Framingham study initially was looking at, cardiac disease and why its incidence seemed to be on the rise at that time. And, they wanted to test out some cool new technologies that were being developed like the electrocardiogram.)

Science deals in probabilities, in maybe’s; it is a dynamic process. Individuals are not statistics and what works for one may very well not work another. Plus, medicine is just as prone to fads and fashions as anything else. Unfortunately, too often in the culture we have it descends into dogma.

And that isn’t healthy.

Entropy and economics

Entropy. It means disorder, more or less, and refers to the tendency that all things in the universe have  to gradually lose coherence. To fall apart.

The term comes from thermodynamics – heat and work – and explains, with blinding simplicity, howeven the most efficient of closed systems will lose energy and become less efficient with time. So be it a steam engine (which Nicolas Carnot, one of the early 19th century thinkers in thermodynamics, used) or a plane, bird or Superman, its inevitable fate (at least if it’s not a fictional superhero) is to fall apart. Or, in the immortal words of my adored Flanders and Swann: “Heat is work and work’s a curse; and all the heat in the universe is gonna coooool down. That’s entropy, man.”

That’s why airplanes are painstakingly taken apart and greased, fixed and rejiggered so they don’t fall apart when we’re flying on that cheap flight to Tahiti; it’s the reason  cars and refrigerators and everything else eventually end up in landfills. And it’s why pristine comics or teddy bears or whatnot are worth a fortune: there’s not a lot of them about.

But we’ve forgotten about entropy; the term is barely used. I remember it from a 70’s era Isaac Asimov short story which gives you an idea of long ago it even touched popular culture. No, we like to think of ourselves as having imposed a lasting order – not least because of our clever algorithms and chic equations.

Take this economic crisis we’ve created. At its epicentre was the belief that markets are knowable, rational, explain-able. Of course even a  child who’s tried to trade a baseball card knows this makes no sodding sense, but greed and hubris and a lot of money all came together at once and people really came to believe that this time it was different.  What went up wasn’t going to come down.

After all, there were these equations ….

Turns out some really clever people came up with some algorithms that seemed to work for a time. So, like all greedy eejits they believed their own press clippings (not to mention the fat bonuses) and soon all of Wall Street and much of London and Zurich and the rest followed suit, rolling the dice convinced that it wasn’t luck but science. Hey, everybody loves it when things that seemed unpredictable and unknowable can be reduced down to a quantitative model – probably because so few of us actually understand any of the math. So the “quants” (for “quantitative”) directed the finance industry towards the Kool Aid. Now of course, there’s analysis and backtracking and people who knew it was going to happen (see http://tgam.ca/LIF via @globeandmail for a review of a book on the subject) but really what happened is that people wanted to believe  they understood how it all worked.

Why else would otherwise quite clever people set aside all rationality to invest in acronyms they didn’t understand? And it is a comforting notion, that markets are über-rational and what had always seemed random could be reduced down to a handful of equations. So, staggering sums of money ended up in chopped up pieces of debt,  mortgages, and then it all came tumbling down. (Of course at every step of the way a hefty commission was being pocketed so it was to many people’s advantage not to rock the boat, whatever their private beliefs in the rationality of markets.)

What these “too big to fail” banks and funds forgot was that expressing anything in quantitative terms requires thought, not computers; you have to understand,  in depth, what that equation fundamentally means. And all its ramifications. One of the most seemingly simple equations – E = mc2 – occupied Einstein his entire life. D’you think he was just slow? Or that with computers he’d have managed it in a weekend?

The universe just doesn’t give a damn. Civilization, progress, is just our feeble attempt to thwart entropy.

“My name is Ozymandias, King of Kings …. Look on my works ye mighty and despair .. “

But here we all are, in spite of it all still bright-eyed and bushy tailed, convinced we’re so much cleverer that all those silly oafs who came before (including Boyle and Carnot and Nernst and all those other clever johnnies who actually managed to came up with thermodynamics). After all, we have Google Earth and iPads and we’re good at expressing ideas numerically. Unfortunately, no matter how much we like things to be neat and fit into those cool spread sheet boxes; no matter how much we’d like to think our rules, our ideas, are those of the universe, real rules are few and far between and almost never apply across the board to all situations.

But we don’t believe that, so we don’t agonize about the moral dimensions of our economic theories as Adam Smith did or stop to wonder if our exuberance might be irrational. No, we actually think that what we’ve come up with – our rules and theorems and guidelines and ideas and metaphors; the narratives we’ve constructed to explain how markets work (efficiently), or how physiology might function (neatly, mechanistically) or biology operates (hierarchically) – are real.

As the geneticist Richard Lewontin writes in The Doctrine of DNA: Biology as Ideology (HarperPerennial, 1992) writes, we’ve succumbed to the delusion that our metaphors and narratives exist. So often have we heard our genes described as the “blueprint” of life that we have come to believe biology is destiny. So often have we heard mechanistic metaphors used to describe our organs that we believe replacing a defective heart is akin to changing the engine on an aging Camaro. So ubiquitous is our reverence for our own cleverness that we forget previous generations thought they had it right too.

Memories are short these days and we forgot. Forgot that whether it’s finance or physiology, real life is messy.  Not quantifiable.

Spanish Flu – not

If I hear one more smug, well-dressed public health expert threaten us with the Next Great Pandemic, be it swine flu, avian flu or H1N1, with its inevitable comparison to the 1918 Spanish flu that “killed millions and millions”, the top of my head will blow off.

Presented in the metaphor of war, the virus is no longer a miniscule chunk of protein that requires a living, breathing body to reproduce but a rampaging army, mowing down everything in its path. Conveniently forgotten is that just as important as the “strength” of the virus is the health and immuno-competence of the host. Which brings me to the Spanish flu.

First off, it wasn’t “Spanish” – viruses not being good with national borders (plus most of them don’t have passports). The flu began somewhere in Europe at the end of a long and bloody war which you might recall: World War I.

The Allies, however (us, I mean, aka the Good Guys fighting the “Hun” and keeping the world safe for capitalism and democracy and whatnot) heavily censored news of the flu, thinking it would cause panic and pandemonium. (As if the war hadn’t already done that.)  So news of the flu trickled in from Spain, neutral during the war, which did not censor its news. Hence, people assumed the flu came from Spain.

Generally speaking, 1918 was not a good year, coming as it did after four years marked by new weapons and a war machine the likes of which the world had not seen before  – which is why WWI was also known as “the war to end all wars”. Millions of of young men died: cannon fodder for tactics devised by generals schooled in the gentlemanly art of 19th century war in what became known as the start of the 20th century in all its technological splendour.

Faded sepia photographs are all we have left of the many who died; dressed in those ugly boiled wool uniforms that make you itch just looking at them. Boys, really, living and dying in muddy trenches: damp, mouldy underground passages where micro-organisms proliferated as did gangrene and fungus and rot. And if anyone objected they were shot as a traitor.

I don’t tend to get sentimental about war but I confess that I wept when I saw the monument at Vimy. (“Every day they die among us,” said Auden, “those who were doing us some good.”) An entire generation lost to trench warfare.

That was the context for the Spanish flu: war, rationing, weakened immune systems, shell shock, malnutrition; the constant noise of cannons, stress, and injuries too horrible to contemplate; amputees in the hundreds of thousands. As ugly a situation as it gets. And no social programs, remember – those came much later, after the next great war. Everyone suffered, not just the military.

Medicine had little to offer: no antibiotics, no ventilators, no ICU’s, no potentially life-saving surgeries. Had there been, fewer people might have died (since it is the immune reaction that kills, not the virus), though we have no way of knowing – any more than we know how many people actually died of the “Spanish” flu.

(I suspect a fair amount of  hyperbole has crept into the numbers – particularly given the sheer number of agencies, drug companies and individuals that currently stand to gain in power and prestige from the scare tactics, not to mention funding and/or profit.)

Certainly in 1918 there was no way of testing for the virus, and even today, when we can (if we do), easily half the people diagnosed with the flu turn out not to have it. Experts call it “flu like” illness because they have no idea what it is. People just get sick when the weather gets cold, some worse than others.

So you’ll forgive me if I don’t get into a lather every time this pandemic business comes up with its inevitable reference  to 1918. Today, conditions for the majority of us in the developed world are so different as to make such comparisons  meaningless. Epidemiology shows us that the risk of getting any disease is higher if one is poor, malnourished, stressed, immune compromised; if one does not have ready access to clean water and air, nutritious food and decent  living conditions, jobs and hope. This means some Aboriginal reserves  in Canada and various pockets of poverty  throughout the United States, Europe and Japan, as well as most of the developing world.

Not the rest of us for whom hardship means our internet is down.

It wasn’t really a vaccine and a multi-million dollar PR campaign we needed last fall. Particularly since the massive expense will no doubt mean future cuts in less glamorous public health programs like suicide prevention for at- risk youth and the like. What we really needed were clear-eyed, long-term initiatives to fundamentally ameliorate the conditions of those communities on our own doorstep where people live impoverished, hopeless lives, in circumstances somewhat more similar to those of 1918.

There’s a public health program I would support. But, I doubt anybody would be interested. It wouldn’t make good TV.