Outsourced to the great Dr. Szwarc. If you'd like a more knowledgeable take on one of many, many alternative treatments out there that claim to cure unending lists of ailments, it wouldn't hurt to take a look at just this one article from Junk Food Science, which regularly examines questionable science reporting and conventional wisdom in its inimitable manner.
Alternative takedown: Flavonoid edition
by amanda on Tuesday, February 26, 2008 email this | Q
Labels: alternative takedown, fibromyalgia
In brief..... quite perfect
I could cure my pain by steeping myself in tea.
No doubt these sorts of alternative remedies offer comfort to those suffering, and this in particular is tamer than most (which is why I post it with a smile). Any remedy, however, that announces itself via press release, and makes grand, wide-reaching claims of importance while lean on supporting evidence, deserves a critical look.
by amanda on Monday, February 04, 2008 email this | Q
Labels: alternative takedown, chronic illness, fibromyalgia, silly
Alternative takedown: Magnet edition
I just started a 25-hour-a-week job at Ritz Camera and have been pretty busy, thus the absence, so I'll go ahead and let WebMD do the takedown for me.
by amanda on Tuesday, September 25, 2007 email this | Q
Labels: alternative takedown, chronic illness, disability, fibromyalgia
Alternative takedown: Myer's cocktail
The former post was a pretty long introduction, but now I'm going to get onto what I was originally intending to talk about: this story on a study on the efficacy of Myer's cocktail on fibromyalgia.
The first red flag comes in this paragraph:
Massey chose subjects who had fibromyalgia for at least 8 years and proved to be therapy resistant, having tried antidepressants, nonsteroidal anti-inflammatory drugs, and exercise without relief.
Oops! OK, those of you who aren't familiar with fibromyalgia probably don't see the mistake there. It comes in the form of the words "nonsteroidal anti-inflammatory drugs" invoked as though it is a legitimate treatment for fibromyalgia. It's not! Not because NSAIDs are a useless treatment in general (arthritis sufferers, you can put away your weapons now) but because fibromyalgia is not an inflammatory condition. The pain has nothing to do with inflammation of the muscles or joints (well, except insofar as it will amplify that pain if you have it for some other reason) but instead with a fuxxoring of the brain's regulation of pain signals. So it's sort of a meta-level condition, if you want to think of it that way. Now, fifteen or twenty years ago the conventional wisdom was that the disorder was an inflammatory, auto-immune, rheumatic condition (thus why the default specialist for a fibromyalgia sufferer is a rheumatologist, and why we sit in the lobby with arthritis, osteoporosis and gout sufferers) but that's been pretty much dismissed by now. Unfortunately, there are a lot of medical professionals who are fifteen or twenty years behind on the research, and so they continue to propagate this myth.
So of course NSAIDs didn't work on these patients. Because NSAIDs don't work on fibromyalgia. That's sort of a meaningless condition to require of your patients if you're looking for someone who hasn't responded to typical therapies.
The rest of that quote is problematic, too. Antidepressants also don't do a whole lot for fibromyalgia pain. It does help you regulate serotonin (sort of the bouncer for your brain, it helps block the "bad" signals, so when you have less of it, more "bad" signals get through) but because serotonin plays only a small role in the overall problem with fibromyalgia, it isn't really terribly effective. Now, a lot of fibro-ites will tell you that it makes them not care about their pain, but the pain's still there, and that's a pretty accurate way of putting it.
Also, while exercise is vital to managing fibromyalgia pain (the weaker you are, the more you will hurt; carefully managed physical activity can help strengthen your body and thus help improve your physical state) exercise alone is not going to do a whole lot, except make you sore. It's sort of like the studies that find a combination approach is best for depression or anxiety: medication alone just masks the problem, but it's often hard to really make progress with therapy or CBT if you don't have the chemical regulation straight. Much the same way, you aren't going to make a lot of progress exercising if you don't have some sort of pain relief helping you do it.
So basically, of course these patients didn't respond to these treatments. Because these treatments don't really do much for fibromyalgia pain in general. If you were going to conduct more of an intellectually honest trial, you'd look for patients who didn't respond to the treatments that actually work. Duloxetine and pregabalin are the two biggies, but I can excuse a lack of knowledge about them since they're really new. But gabapentin has been around for a long ass time so you (a medical professional professing some sort of special knowledge in the area) have no excuse for not knowing about it. Same with stuff like cyclobenzaprine or even hydrocodone (which is a tricky treatment to manage given the probability of developing dependence, but it works). There is no way they can excuse ignoring these treatments and concentrating on the ones that have been proven not to work.
Moving on:
Seven subjects were given the modified Myers' formula of intravenous nutrient therapy once each week for a total of 8 weeks. The subjects were monitored weekly by measures of pain, fatigue, and activities of daily living. All seven subjects reported improvement in all three measures.
Within two days of receiving the modified Myer’s cocktail, the subjects all reported increased energy, with no side effects. There was an overall 60% reduction of pain and an 80% reduction of fatigue, though the reduction was not lasting.
Problem here. One: There were only seven subjects. That can be looked past, as there has been pretty important research with similarly small sample sizes that have been vindicated in the end. But then we get on to two: there is no control group. I'm speaking as a layperson here, but really, as far as I'm concerned, if your clinical study isn't double-blind, it's worthless. Why? We get right back to that placebo effect again.
And doesn't it look like that's exactly what's happening here? Within two days the patients reported incredible improvement. By the time the study was over, they were back to normal. That's how it goes with these treatments. You take them for awhile, you really want them to work because hey, you would like to be able to get on with your life, and at first you're thinking, hey! maybe this is working! as you identify this and that little "improvement" during your daily life—ups on the pain and fatigue roller coaster that really may just have been what you normally experience day-to-day anyway, but weren't really paying attention to before—or maybe just your improved disposition due to your investment in the new treatment is affecting your pain levels overall; mood certainly influences one's physical state (although please, let's not take that to the BS level of "then it must all be in your head!" science is not with you on that count, my friend). But then as time goes on, you stop looking for improvements and concentrating on whether or not the treatment is working and get on with your daily life, and you start to notice that you can't find any real difference. And then you get tired of taking the pill every morning (or whatever the treatment is) and stop, and forget about it. Chances are, you've been through dozens of these treatments before, and they didn't work either. And you become more fatigued with them over time. But you don't really care enough to report back and tell the makers, or the readers of the reviews, that it didn't work. And so it goes.
As I've said, this doesn't apply across the entire alternative spectrum. Some treatments have been shown to work (acupuncture, for example, has been shown to be effective in some trials, although the results there are equivocal because there have also been studies that show it not to be effective over a "sham" [control] treatment). But so many are never held up to the light for a closer look, and they need to be—for the good of those living with the condition, who want to see real, effective treatments found, to reduce our suffering.
by amanda on Saturday, August 04, 2007 email this | Q
Labels: alternative takedown, chronic illness, fibromyalgia, scams
Alternative therapies for fibromyalgia: a takedown
The thing about fibromyalgia is that not all that long ago, it was a synonym for "hypochondria"—and that holds true in the minds of many today. In the '90s it was known as the "wastebasket diagnosis," because anyone who had pain that couldn't be explained by existing medical conditions got that diagnosis dumped off on them and sent off for some other doctor to deal with, whiny old women that they were. (There is an established diagnostic criteria for fibromyalgia, but not all doctors are trained in how to apply it correctly, and that doesn't even really matter when they don't take the diagnosis seriously anyway.)
Given that the medical establishment hasn't treated us terribly well over the years and the existing pharmaceutical treatments didn't really work, a lot of fibromyalgics turned to alternative therapies. The thing about the alternative world is that it's very warm and welcoming, as compared to the cold and uncaring medical establishment that really just gave you the diagnosis so you'd quit bitching at them already. So it's more appealing to begin with. A lot of doctors, other medical professionals, amateurs and opportunists saw a market waiting to be exploited, and exploit it they did. Said opportunists often operate clinics where the patients are "treated as a whole," and that's actually a pretty accurate description. The patients are treated with respect. There is a distinct sense that your complaints are being taken seriously—your words are believed the minute they slip off your tongue; you aren't approached critically and questioningly like in the typical doctor's office. You aren't being treated like a guinea pig, but more like a child who's just skinned his knee—they give you empathy, which is something you don't encounter in a typical medical environment.
And so the patient looks around and decides: This place rocks. And now they are invested in the treatment they're going to be offered. They want it to work. And I'm sure those of us familiar with the placebo effect can deduce the rest of the story here.
I want to throw in a disclaimer now, because I know I'm treating these things—hell, "skeptically" would be too kind—and I know that not all alternative treatments are bunk. What I'm addressing isn't the "alternative" world in general, but instead the "alternative" world that consists of opportunists and scam artists. Actually, no, that's too cynical. A lot of these people really believe in their treatment approach. They really believe they're making a difference in the lives of those suffering. And in a fashion, they are. But when held up to the light for inspection, these treatments usually fall apart.
A classic example is Dr. Paul St. Armand, inventor of the guaifenesin protocol (basically, cough syrup). I can't find the webpage now (argh!) but he used to have a personal, geocities-esque page where he claimed that the guai protocol would not just cure your fibromyalgia: it would reverse it. And he meant that in the most literal sense of the word. You would feel worse before you felt better, he said, and that's because staying on the guai protocol is like watching your disease on tape, on rewind. You'd go through the same ups and downs, the same flares and remissions, that you've already gone through in your lifetime. BUT SPED UP!
Yes, he seriously claimed this (he used the "tape on rewind" metaphor specifically). No, I am not making this up or summarizing. He quite explicitly explained this very concept on his personal webpage.
Dr. St. Armand's protocol has been held up to scientific scrutiny in the past, and guess what? It didn't check out. The study found no statistical significance over the control (placebo) treatment. Oops. A year or so after this disappointment, Dr. St. Armand came back with a rationalization for his failure. See, they didn't control the diet of the patients while they were participating in the trial. Apparently the presence of salicyclates in the body can fuxxor with the ability of guai to, you know, work. Salicyclates that are present in pretty much everything, from your toothpaste to the grass outside your front door (and this doesn't include every food you have to give up, like a diet on steroids). You have to completely eliminate salicyclates from your body before guai will work. That's an incredible task, as I'm sure you can imagine.
I actually give him a little slack on this, because it could be a fair explanation for the study's failure. But then I'm also inclined to laugh it off because of Dr. St. Armand's theory on why guai works. See, according to him, fibromyalgia is phosphate buildup in the muscles. Apparently you can feel these buildups on palpation. Now, this is pretty clearly bullshit if you have kept up with the fibromyalgia research at all. The leading explanation for fibromyalgia is "central sensitization" (recommended read! a good overview of the syndrome in general), dysregulation in the central nervous system, basically a whole bunch of factors (higher levels of substance P, less blood flow to the thalamus region of the brain, lower levels of serotonin) that come together and result in amplification of pain signals in the brain. You can see these two theories don't really match up. And if I read the second paragraph under "Role of Peripheral Tissues" in this review of the inner workings of fibromyalgia (the whole thing is a hell of a read, but worth it for those so inclined) correctly, his claim turns out to be bunk.
Thing is, Dr. St. Armand is incredibly popular. I'd almost call his followers a cult, but I don't really know if I'd go that far.
Anyway, that's just one good example of how things go. You'll find a lot of nutritional supplements and the like claiming to be able to "cure" fibromyalgia, but of course, anything that claims to be able to "cure" a condition is most likely a scam.
This post was a pretty long introduction to an issue that's been a focus of mine for a long time, and may become a regular series here. If you're ready for a takedown of a specific treatment, read on....
by amanda on Saturday, August 04, 2007 email this | Q
Labels: alternative takedown, chronic illness, fibromyalgia, scams