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Value of Self-Experimentation With Chronic Conditions

Posted Feb 09 2013 12:00am

A reader with an autistic son sent me a link to a story in the New York Times Magazine  by Susannah Meadows about a boy with arthritis who was cured by dietary changes, including omega-3 and probiotics. Conventional doctors and the boy’s father had resisted trying the dietary solution; Meadows is the boy’s mother.  An expert in the boy’s problem, Dr. Lisa Imundo, director of pediatric rheumatology at New York-Presbyterian/Columbia University Medical Center, told Meadows that “she [Imundo] had treated thousands of kids with arthritis . . .  and diet changes did not work.” It took only six weeks of the dietary change to discover it did work. Eventually the boy’s arthritis was completely gone. It may have been caused by antibiotics he’d been given for pneumonia. The antibiotics may have killed his gut flora making his intestines too permeable.

Had Meadows accepted what mainstream doctors told her, her son would have taken medicine for the rest of his life medicine that wasn’t working well. Dr. Imundo wanted to double the dose.

The reader with an autistic son explained how it related to this blog:

It particularly supports the value of self-experimentation in these chronic conditions, especially when there is heterogeneity. The heterogeneity of autism was obvious to me from early on, although I’ve come to realize it’s not obvious to everyone else. Autisms of known genetic causes have different tracks (Fragile X is the best-studied). Broad studies of autism start with a huge disadvantage: they are studying different disorders of similar presentation, and what helps in one case may harm in another. After the steady drip drip of your talking about n=1 experiments, it dawned on me that this applied to our situation. You didn’t need to do a massive, double-blind, placebo-controlled study of acne medication any more than I needed to enroll a thousand families in a study of diet and autism. I could start with dinner.

The reader found dietary n=1 experimentation with her son to be very helpful.

Update. After I wrote this, Michelle Francl, a chemist who writes for for Slate’s Medical Examiner column, complained about the “alternative medicine” in Meadow’s piece . Francl fails to mention that dietary changes completely cured the problem, thus avoiding the need for dangerous drugs that weren’t working. Francl says that Meadows has “an irrational fear of chemicals”.

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