Respectful Insolence

“Detoxification.”

Whenever I hear that term, I’m at least 90% certain that I’m dealing with seriously unscientific woo. The reason should be obvious to longtime readers of this blog or to anyone who has followed “alternative medicine” for a while, because “detoxification” is a mainstay of “alternative” treatments and quackery for such a wide variety of diseases and conditions. Of course, toxins are indeed a bad thing, and we close-minded reductionist “allopathic” physicians do indeed use detoxification when appropriate. What differentiates us from “alternative” medicine practitioners is that we have this extremely annoying tendency (annoying to alties, that is) to want to know exactly what toxins we are dealing with, to verify that they are present in concentrations that can cause problems or damage before instituting any sort of treatment for them, and then to tailor our therapies to remove the specific toxins causing symptoms and to verify that we are successful. Not so for the “detoxification” as practiced by so-called “complementary and alternative medicine” (CAM) practitioners. CAM “detoxification” most often does not specify which “toxins” are being “detoxified,” or when it does it is intentionally vague about them. Occasionally, they will get specific (mercury as a cause for autism), but the problem with specifying a “toxin” as a cause for a disease is that doing so allows for falsification; it also allows scientists who know something about the disease to assess the specific toxin as a cause for a disease for biological plausibility. Not surprisingly, rarely is the mechanism biologically plausible.

The concept of “detoxification” in alternative medicine also leads to a number of bizarre and sometimes dangerous treatments. For example, there is chelation therapy for all manner of conditions, such as atherosclerotic coronary artery disease and autism; there have been deaths, even the death of a child, from this nonsense. Then there is all manner of “detoxification” for cancer patients, which can include coffee enemas, combinations of enemas and various juices, or all manner of combinations of fasts and purges. Perhaps the ultimate “detoxification” regimen is the Gonzalez regimen for pancreatic cancer, which involves taking over 100 supplements and multiple enemas a day. Truly, “detoxification,” at least as practices in alt-med circles, is far more of a religious concept akin to self-purification of unspecified evils than anything else.

No doubt the person who has thought up what I’m about to write about would, were he to see this post, think that my introduction is horribly unfair, but I don’t think so. As you will see, the only difference between this form of “detoxification” and traditional alt-med forms of detoxification is high tech. The rationales are in essence the same. What am I talking about? A pediatrician in Pittsburgh named Dr. Scott Faber is planning on treating autism by placing children in an “Environmental Pediatric Room,” which is in reality planned to be a clean room, at a cost of $500,000 to construct and $1,000,000 a year in operating costs:

With childhood autism cases skyrocketing and no cure in sight, doctors at the Children’s Institute in Squirrel Hill are planning on a Hail Mary pass approach to the mysterious disorder — housing young patients for weeks at a time in a pollutant-free “clean room,” in an attempt to detoxify their bodies.

No cause for autism has been found, and debates rage as to whether the brain development disorder is purely genetic or caused in part by environmental factors, including air and food-borne chemicals.

With roots in autism treatment theories that until now have lived mostly on the Internet, the pediatric clean room plan would be the first of its kind in a mainstream American hospital environment.

The Children Institute’s Scott Faber, a pediatrician with several hundred autistic patients and a waiting list six months long, is one of the believers in toxic causes, and the institute is trying to back him with a multimillion dollar test of the novel theory.

Under the plans — developed with help from Duquesne University — autistic patients would live for more than six weeks in a 1,000-square-foot room kept mostly free of harmful chemicals and pollutants, using special air-filtering systems, ultraviolet lights and air locks on doorways.

Furniture, paints, toys and floor coverings would be designed to be toxin-free, and food, clothing and water organic and clean. Doctors would seek to rid patients’ bodies of chemicals and boost their immune systems through natural means such as nutritional supplements and dietary changes.

Basically, it would be pushing a “reset” button on the child’s body, with the hope of wiping autistic symptoms away.

“What we would like to do is have kids live in this wonderful environment where they are exposed to almost none of the Industrial Revolution. And we wonder, if the chemicals come out and the heavy metals come out, will the children start improving?” Dr. Faber said.

Yep, this is the same old woo dressed up in spiffy new high tech clothing. It sounds like typical “detoxification” diets and supplements with the addition of this special room. As with all detoxification woo, the exact “toxins” being “eliminated” are never specified. Dr. Faber, it is known, is a booster of the concept that “heavy metal buildup” is a major contributor to autism and a purveyor of some fairly typical (and dubious) “biomedical” interventions for autism. For example, here he is being interviewed in response to Dr. Raymond Palmer’s awful (from a scientific standpoint) paper linking autism to proximity to coal-burning powerplants in Texas:

Dr. Scott Faber, a neurodevelopmental pediatrician at Pittsburgh’s Children’s Institute, said most autism cases appear to be caused by some type of environmental impact while babies are still in the womb.

“These kids have a genetic predisposition to not handling an environmental exposure,” Faber said. “That exposure can be one of the chemicals in the environment. It can be heavy metals that are released into the air.”

And here Dr. Faber is again:

Dr. Scott Faber, a specialist in neurodevelopmental disabilities and behavioral pediatrics at the Children’s Institute in Pittsburgh, said there is emerging evidence that heavy metal build-up in the body can cause the neurological impairment seen in autism.

Faber and Hewitson, the researcher with Magee’s Pittsburgh Development Center, each said there may be a connection between mercury exposure in the womb and autism.

I’ll give Dr. Faber credit in that he at least rejects the hypothesis that mercury in vaccines is a cause for the “autism epidemic,” but he nonetheless still seems to be a true believer in blaming mercury and other unspecified “heavy metals” for autism. Of course, even if mercury were a major contributor to autism, he is short on rationale as to why placing autistic children in a clean room would do anything to help them. First off, he seems to think that mercury exposure in the womb is important. If that were indeed the case, then wouldn’t putting children in a clean room be a little late? Wouldn’t he have to lock future mommies up in his clean room for nine months, just to be sure?

This whole concept of using “clean rooms” for treating autism is not Dr. Faber’s idea, however. It’s apparently based on ideas promulgated by a nutritionist named Karen Slimak, who appears to be heavily into dietary and detoxification woo for treating autism combined with extreme environmental control. Like many purveyors of dubious remedies, she has not published a single report in a peer-reviewed biomedical journal describing her use of clean rooms to treat autistic children (or even about her treatment or about any aspect of autism), opting instead for bypassing peer review and going straight to the Internet. Also typical for such “studies,” there is no blinding, no randomization, no real control group, and only vaguely described methodology, which makes its rsults virtually uninterpretable. Indeed, her “study” is mighty thin gruel to spend several million dollars on. Even Dr. Faber seems to realize that:

Dr. Faber noted that Ms. Slimak’s clean room work — like much of the research on toxicity in autism — “hasn’t been written for the main [scientific] literature” but instead has been written mostly for the Internet. The Children’s Institute plan would be taking what is arguably a fringe movement into the mainstream: It would be the first autism treatment of this kind staged in an American hospital setting. It will be matched with scientific analysis, sensors and video cameras to study the real impacts of detoxification. The data and findings will be shared openly, he said.

How lovely. Of course, a more reasonable and scientific manner to test Slimak’s methodology would be to collaborate with her and demand scientific rigor: you know, little things like randomization, double-blinding (admittedly difficult with a clean room, but not impossible), and the use of real control groups in the clinical trial. Of course, if Slimak hasn’t published her work in the peer-reviewed literature, I doubt she’d be too interested in that. Come to think of it, I couldn’t find a single scientific paper in the peer-reviewed biomedical literature about autism by Dr. Faber either.

Leaving the issue of how weak Ms. Slimak’s work is, though, Dr. Faber sounds as though he plans on doing clinical research with this clean room. It’s thus only reaosnable to wonder whether he will use methodology that would have a hope of actually answering the question of whether or not the clean room is having an effect. The methodology he describes certainly doesn’t sound as though it will be anywhere rigorous enough. Once again, I hear nothing about blinding, nothing about a control group, nothing about randomization or case matching. Moreover, if he only plans on putting one child in the room at a time, it would take him a hell of a long time to accumulate any meaningful data even if he had devised a scientifically rigorous methodology to test the hypothesis that “detoxification” using a clean room and special diet does anything at all for autistic symptoms. (He doesn’t.) Indeed, his methodology seems custom-made to produce the same old false positives that so many “biomedical” intervention studies are prone to produce.

There are also many logistical challenges that make me wonder. Clean rooms are very difficult to maintain. There’s a reason that workers in real clean rooms wear synthetic full-body suits; the human body sheds dead cells, hair, and all manner of particulates. Similarly, any “natural” fibers or toys would be difficult to fabricate in such a way that they, too, don’t throw off all sorts of particulates. The end result will likely be a hellacious time trying to keep the air filters from constantly clogging, particularly if the parents are staying and staff is coming in and out. All in all, it sounds like a very long run for a very short slide.

So what’s the problem, you ask? After all, assuming the dietary manipulations aren’t too extreme, this intervention should be harmless. At least that’s what Elliot Frank, the chairman of Pittsburgh’s Advisory Board on Autism and Related Disorders, argues:

Even if it does not work, patients will be in a safe and professional environment, benefiting from passive treatments such as nutrition and clean air.

Among parents of children with autism, Mr. Frank said, “some will say, ‘Come on, who are you kidding?’ But a significant portion of parents will feel good about this and watch this with incredible interest. Others will watch and say, ‘Hmm, let’s see what happens.’ “

Indeed, “empowerment” seems to be what it’s all about, more than anything else:

“We know that the data for this is just emerging, but we feel it’s a very safe intervention, and it’s empowering for families and very reasonable,” he said.

So, you may ask, what is wrong with all this? I see several things. Again, assuming the dietary manipulations aren’t too far out there, this clean room treatment probably isn’t unsafe. However, it is research, which brings up a number of ethical problems. First, I assume that the parents will be paying for this intervention, given that insurance companies are highly unlikely to. One of the cardinal principles of research is that patients should not be required to pay for experimental therapies, which is what this most definitely is: an experimental therapy without a good scientific rationale or good preclinical or clinical evidence to support its use, but an experimental therapy nonetheless. I highly doubt that the Children’s Institute is going to offer this for free. Indeed, I wonder whether the hospital will make a profit on this treatment. If so, that would make it even more ethically dubious. Second is informed consent. Does Dr. Farber tell parents just how weak the supporting evidence for this therapy is? Somehow I doubt it. Then there’s the issue of research design, which appears to be totally inadequate to evaluate whether or not Dr. Farber’s hypothesis is actually true or whether this therapy is anything more than yet another expensive and elaborate placebo. Taken as a whole, this whole project just reeks of pseudoscience and questionable medical ethics.

But perhaps the worst aspect of this “treatment” is the wasted money and lost opportunity. At least $3.5 million will apparently be dedicated to this project. Surely a lot more could have been done with that money to help autistic children who are patients at Dr. Faber’s hospital. As the project appears to be formulated right now, to me it looks like nothing more than throwing money away on an expensive, “science-y”-sounding project with an at best highly questionable hypothesis behind it with almost zero possibility of producing scientifically useful results for numbers of patients in the single digits each year. In other words, unless I’m missing something, it strikes me as nothing more than a huge boondoggle designed to lure parents of autistic children to an expensive, cumbersome, and almost certainly useless therapy. I thought I had seen it all when it comes to bad clinical science and bizarre treatments for autism, but Dr. Faber has shown me that I was clearly wrong about this. He’s also made me wonder just what sort of strangeness I will encounter next.

I’m not sure I look forward to that answer.

Comments

  1. #1 Oldfart
    May 12, 2008

    The next strangeness you will encounter, at least as far as this episode goes, will be that every single child admitted into the “clean” room will come out anecdotedly “cured” in some undefined way. This will go on for months, if not years, so as to suck as much money out of the hospital and its donors as possible.

  2. #2 Woobegone
    May 12, 2008

    “What is wrong with all this? I see several things. Again, assuming the dietary manipulations aren’t too far out there, this clean room treatment probably isn’t unsafe.”

    It’s unlikely to be physically dangerous, but bearing in mind that these are autistic kids, I wouldn’t imagine that they’re going to be very happy about the experience – some of them might find it quite traumatic. I think even the most “normal” child would be understandably a bit upset at being moved out of their home, away from their friends and toys, to be fed strange foods and surrounded by strangers in a completely novel environment all day. How an autistic kid would react to that I don’t know, but I can see some of them absolutely hating it.

  3. #3 sophia8
    May 12, 2008

    “What we would like to do is have kids live in this wonderful environment where they are exposed to almost none of the Industrial Revolution.”So ultraviolet lighting, air filters water filters, airlocks etc aren’t “industrial”?
    This is a near-perfect example of the “butterbox principle”. If you told the parents who are going to shell out for this that they could instead take their kid for a few weeks’ ‘detox’ in some really remote mountain cabin without electricity or running water, they’d think you were crazy.

  4. #4 What's The Fuss
    May 12, 2008

    Ahem … “benefiting from passive treatments such as nutrition and clean air”.

    Who would think of food and oxygen as ‘passive treatments’? I always thought of them as vital necessities.

  5. #5 notmercury
    May 12, 2008

    Maybe Intel will sponsor this program and get the kiddies to work on chip manufacturing at the same time. Lord knows there are plenty of ASD types working in clean rooms at chip fab facilities already. Hey, maybe that’s why they took the jobs in the first place. Going to work makes them feel less autistic everyday.

  6. #6 MMOToole
    May 12, 2008

    Now it’s “detoxification therapy”. Are they going to torture these poor kids with the coffee enemas or “cleansing” enemas and the like, too? Just what an autistic kid needs, more incomprehensible things done to him/her, more disruption of routines.

    Just when one quackery loses its charm, another starts. Five years ago, it was “whole-body CAT scans to ‘diagnose’ abnormalities early” and “chronic Lyme disease”. Five years before that, I think it was “chronic Epstein-Barr virus”. Five years before that, we were still in the throes of “yeast allergy”, diagnosed by skin testing for Candida, as the cause of every ache and pain and syndrome we had no cause or cure for (FYI: everybody not with a serious immune system dysfunction has a positive skin-test reaction to Candida; it’s ubiquitous). And on back.

    I know a lot of this is grasping at straws by people who are truly suffering and feel the medical profession has let them down. But I also wonder if part of it isn’t just that we’ve gotten too damned successful at curing folks, so that when there’s something we don’t understand and can’t cure, the quacks can get a foot in the door. At least in the 19th C there was good reason; almost the only useful meds we had back then were opium, quinine, maybe digitalis, and mercury salts (for syphilis)!

  7. #7 Midwestern Progressive
    May 12, 2008

    If “CAM” = “complementary and alternative medicine” then I think it is perfectly reasonable to state that “so-called complementary and alternative medicine” = “SCAM.”

  8. #8 Margaret Romao Toigo
    May 12, 2008

    Never minding the obvious silliness of putting children into a “clean room” to “detoxify” them, a 1000 square foot room is an awfully small place to be imprisoned for 6 weeks.

    Our house is almost three times that size, and it’s still not big enough for my autistic kids (or my neurotypical kids, either), who climb the walls if they cannot go outside to play at least once a day.

  9. #9 DavidCT
    May 12, 2008

    If you don’t want toxic kids turning autistic, you have no real choice but to put all mothers in these isolation chambers for nine months. You make sure you feed them all organic foods with higher levels of all natural e. coli and molds. That might be a little harder sell than a prolonged separation from the daily struggle of raising a disabled child. The kids might not be toxic, but will they be able to survive being raised by a bumper crop of really strange moms.

    What these genius’s are proposing is taking disabled children who already have communication problems, and then isolating them from normal human contact. If the kids don’t go completely bonkers, I am sure they will somehow be labled improved. It really amounts to cruelty – hospital sanctioned. Do you really have to look very far to see that woo is not harmless?

  10. #10 Jefrir
    May 12, 2008

    I have a better suggestion – build the room, but instead of the filter rubbish, put in toys, games and sofas. Invite in autistic kids and their parents. The kids get some fun, the parents get an opportunity to talk to each other about problems and coping strategies. It won’t cure anything, but it will be much cheaper and probably at least as effective as some “clean room”.
    Any child locked in such an environment would surely go potty pretty quickly.

  11. #11 DLC
    May 12, 2008

    Toxic Children ?
    I know children tend to cause high blood pressure, increased heart rate, anxiety, anger and exhaustion, but those are merely the natural reaction to having them.
    (/humor)
    Oddly, it was a crank medico who gave me the idea to go into medical research. An idea which faded after I realized that doing so would require me to cut up dead people.
    That, and realizing that his theory of mega dosing with vitamin c was, to put it nicely, bunk.

  12. #12 AimeeK
    May 13, 2008

    *sighs in relief*

    I feel as though I’ve come home to an island of sanity. This is my first time reading this blog, and already I loves you guys.

  13. #13 sophia8
    May 13, 2008

    Like all SCAM, it’s the modern version of witchcraft medicine – you pay the witchdoctor the equivalent of six chickens and two goats and the witchdoctor rattles his technology and mumbles his sciencey nonsense over your kid. It’s gotta work, hasn’t it??

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