If we can believe a movie based on a true story, the doctors consulted by the family with an epileptic son in …First Do No Harm knew about the ketogenic diet but (a) didn’t tell the parents about it, (b) didn’t take it seriously, and (c) thought that irreversible brain surgery should be done before trying the diet, which was of course much safer. Moreover, these doctors had an authoritative book to back up these remarkably harmful and unfortunate attitudes. The doctors in …First, as far as I can tell, reflected (and still reflect) mainstream medical practice.
Certainly the doctors were evidence snobs — treating evidence not from a double-blind study as worthless. Why were they evidence snobs? I suppose the universal tendency toward snobbery (we love feeling superior) is one reason but that may be only part of the explanation. In the 1990s, Phillip Price, a researcher at Lawrence Berkeley Labs, and one of his colleagues were awarded a grant from the Environmental Protection Agency (EPA) to study home radon levels nationwide. They planned to look at the distribution of radon levels and make recommendations for better guidelines. After their proposal was approved, some higher-ups at EPA took a look at it and realized that the proposed research would almost surely imply that the current EPA radon guidelines could be improved. To prevent such criticism, the grant was canceled. Price was told by an EPA administrator that this was the reason for the cancellation.
This has nothing to do with evidence snobbery. But I’m afraid it may have a lot to do with how the doctors in … First Do No Harm viewed the ketogenic diet. If the ketogenic diet worked, it called into question their past, present, and future practices — namely, (a) prescribing powerful drugs with terrible side effects and (b) performing damaging and irreversible brain surgery of uncertain benefit. If something as benign as the ketogenic diet worked some of the time, you’d want to try it before doing anything else. This hadn’t happened: The diet hadn’t been tried first, it had been ignored. Rather than allow evidence of the diet’s value to be gathered, which would open them up to considerable criticism, the doctors did their best to keep the parents from trying it. Much like canceling the radon grant.
The entire history of how the ketogenic diet was discovered and then swept away is an amazing one, as is its return.
BTW, just for amusement, https://drdeborahserani.blogspot.com/2008/05/10-illusions-in-2-minutes.html
Seth: As one who has long been wary of a medical establishment that only respects the results of studies — and, even sadder, the results of studies that they believe have been conducted in the “right way,” by the “right researchers,” at the “right institutions” (or by the “right pharmaceutical companiesâ€), and written about in the “right journals” — I find your ideas wonderfully refreshing. (Of course, many of us know that a majority of these so-called “studies” that doctors trust so much are carried out by pharmaceutical companies with pre-ordained agendas, and that these studies therefore come to conclusions that will benefit the companies themselves. Scary.)
Concerning “First Do No Harmâ€: Although it was made in the 1990s, the action of this wonderful movie takes place in the 1970s. And you are very right that, at that time, most doctors believed that drug therapy and surgery were the only “proven” treatments for childhood epilepsy. Many still do.
But, their belief, even then, was misguided, and — I can only conclude — shaped by financial interests. For one thing, as the movie pointed out, the diet has been used very successfully for decades at John’s Hopkins, under the direction of John Freeman, MD, and registered dietician Millicent Kelly.
But, even more puzzling, since 1925, there has been a huge amount of published literature extolling the efficacy of the diet.
For instance, on April 4, 1925, one of the “rightest” of journals, the AMA’s own JAMA, published an article, “The Ketogenic Diet in Epilepsy,” in which M. G. Peterman, MD, reported on the results of a study at the Mayo Clinic, in which 37 children with “essential epilepsy,” between 2-1/4 and 14-1/2 years of age, were treated with the ketogenic diet. The results were stunning, with a majority of the children experiencing improvement. In fact, quoting from the article, nineteen, or just over 50% “have been free from attacks since the institution of this treatment.”
JAMA published the results of another study in 1927, the conclusion of which was that “twenty-nine of ninety-one patients suffering from idiopathic epilepsy have been freed from attacks by means of the ketogenic diet. Twenty others are definitely improved, so that 54 per cent have been definitely benefited by the dietary treatment.”
Similar studies were published in every decade thereafter. And to my knowledge, the results reported in all these studies are much better than those achieved by any anti-epileptic drug.
So, why did the doctors in “First Do No Harm” react the way they did? Frank Lefevre, MD and Naomi Aronson, PhD, in an article (“Ketogenic Diet for the Treatment of Refractory Epilepsy in Children: A Systematic Review of Efficacyâ€), published in 2000 in “Pediatrics,” the official journal of the American Academy of Pediatrics, offer a possible rationale: (See https://pediatrics.aappublications.org/cgi/content/full/105/4/e46)
Quoting from their article: “This diet was used as a treatment for epilepsy fairly commonly in the 1920s and 1930s. In the late 1930s and 1940s, as effective antiepileptic drugs, such as phenytoin and phenobarbital, were introduced into clinical practice, the ketogenic diet was largely replaced by drug therapy.”
I received my education about the ketogenic diet from Hollywood producer/director/writer, Jim Abrahams, the man who deserves a huge amount of credit for spreading the word about the diet. Jim is the man responsible for “First Do No Harm.” His own experience with the diet, which worked so well for his son Charlie (when nothing else, including surgery, would), has led him to labor tirelessly since the 1990s to promote the use of the diet. Through his Charlie Foundation, Jim has produced and disseminated informational videos, and regularly sponsors training seminars for professionals so they can become qualified to implement their own ketogenic diet programs. Thanks to Jim’s efforts, the ketogenic diet is now available in many hospitals in both the US and abroad. (Estimates range from 65 to 200 programs worldwide!)
You may read Jim’s and Charlie’s inspiring story at https://charliefoundation.org/, where you’ll find lots of other resources, as well.
In addition, I have written an article, “Four Lifesaving Medical Treatments: Not So ‘Anecdotal,”™ After All.” My article features the ketogenic diet — as well as three other equally impressive “anecdotal” treatments. It is posted on my website, at https://www.honestmedicine.com/2008/05/four-lifesaving.html
Thanks much for the work you are doing. Hopefully, together we can (finally!) get the word out there.
Julia Schopick
https://www.HonestMedicine.com
I can’t believe how silly this post is. “Evidence snobs?”
So basically what you’re saying is: If you want evidence that something works, you’re a snob.
Seriously?
Double blind studies are important because they remove human bias. Yes, you can argue that if something works without a double blind there is “evidence” for it, yes, you can say that in this particular case there was some very bad personal interference. But To say this somehow makes double blind studies a snobbery is pretty irresponsible, and frankly, stupid.
A good double blind study -will- tell you if a drug is “sometimes” effective. You should know that. What it will also tell you is how statistically relevant that outcome is.
I find all of this boogey-manning of the “medical establishment” to be a little weak. It’s basically a thinly veiled conspiracy theory.
Maybe you already know these things, Seth, but look at the people commenting in your threads. Many are basically clueless about the scientific method and a lot of them are conspiracy theory types who’s intellectual laziness should warn you that they are not the kinds of supporters you want.
If you spend a minute thinking about it, you can either attribute their comments to zaniness, or perhaps conclude that your posts on occasion aren’t diligent enough to clearly explain to these people what you are getting at.
“Evidence Snobbery.” Come on.
An evidence snob is not someone who “want[s] evidence that something works.” An evidence snob is someone who disregards evidence — evidence that doesn’t reach a sufficient level of quality.
As far as “bogey-manning” the medical establishment, the stuff in …First Do No Harm actually happened. It’s not speculation, as conspiracy theories are.
The diet is worthless because it has not been proven by a double-blind placebo-controlled study. So why not do the study? That would be a waste of time, since the diet is worthless. 8-b
The logic is irrefutable.