So when the medical establishment has little or nothing to offer a dying patient, where can they find hope? Where can they place their bets? Alternative medicine of course. But if patients think the world of clinical research is overwhelming, whoa Nelly! Welcome to the jungle!
Vitamins, herbs, supplements, purifiers, detoxifiers, massage, acupuncture, acupressure, homeopathy, glyconutrients, faith healing, chiropractic, reflexology, magnets, chelation, colonics, biofeedback, hypnosis, aromatherapy, sex, drugs, rock and/or roll. The list goes on.
All of these, with possible exception to the last three, are often called unconventional, unorthodox, unproven, complementary, innovative, or integrative therapies. But do any of them really work? Some almost certainly do, for some people and some conditions. The real difficulty lies in finding reliable information and data to base a decision on. Strict though they are, at least clinical trials are governed by rules. Much of the alternative industry is unregulated, operating in the thickly forested fringes of the medical establishment.
Indeed, a quick search of the internet drops you into a rainforest of pseudoscience, mystical folklore and so much chicken-soup-for-the-soul-bullshit it makes me want to puke. Seriously, I’m so sick of it. Every year, we spend billions of dollars on supposed miracle cures, offered with little more than anecdotal evidence, and a disclaimer which boils down to “We make no promises about our promises to improve your health.”
While there are certainly scams to be found, I’m sure many such promises come from people who truly believe them. And belief is a powerful ally. Medical science recognizes this fact and must therefore validate treatments against placebo. We humans sure do love our placebos don’t we? I’ve got several of my own. I agree with comedian Steven Wright, who joked, “I’m addicted to placebos. I’d give them up, but it wouldn’t make any difference.”
But as with lawyers and politicians, to label all alternative therapies “bad” is over-simplifying and short-sighted. An unproven therapy is just that, unproven until its effectiveness is widely demonstrated. But so was every single medical breakthrough in history until it was tried. I have no doubt many of those listed above will one day lose their alternative status and be accepted into the medical establishment (i.e., insurance might actually help pay for them).
I’m not so sure if any of them will help treat ALS however. A few people have claimed to slow down or stop their progression, but I’ve never found a well-documented case. Show me two people that have followed the same regimen successfully and I’ll take notice. Some folks take more than 70 supplements a day, in a variety of amounts. They spend thousands of dollars a month. I’ve tried several approaches and I’m clearly still going downhill. But unless people start jumping out of their wheelchairs, who knows if we’ve made any difference? ALS is highly variable, and each of us is essentially a 1-patient clinical trial, so how can we make a true comparison?
The cold reality is, it would take too much time and money to grind all the alternatives through the blender of medical science. So until a treatment is approved, we patients are essentially forced to become our own doctors. I often think that alternative medicine is called that because people have no other alternatives. I tend to be a skeptic, as I think I’ve made clear. But hope, whether through effective therapy or placebo, is pretty strong medicine itself. I would never criticize or question someone’s need to try anything and everything. The only alternative to that is giving up.
My approach for now is: don’t brake the bank. I’m not plunking down big bucks on anything without convincing evidence it will really help. I’m focused as much on my quality of life as quantity. Until I’m desperate at least, I’d rather spend what’s left of my time and money enjoying life versus chasing lame horses around the forest. But I still need to do something. Post time is closing fast, and I need to place a few more bets before it's too late.