[Editor’s note: Sorry this is a few hours late. I forgot to change the status from DRAFT to SCHEDULE in WordPress last night. D’oh!]
The single most persuasive strategies by which quacks sell their wares and believers in quackery persuade others to try the quackery they believe in is the personal anecdote. Indeed, I established very early on in the history of this blog a type of post that has become a staple that shows up several times a year. In these posts, I deconstruct “alternative cancer cure” testimonials, showing how the story as related doesn’t provide convincing evidence that the quackery being touted is actually responsible for how well the person who used it is doing and how the patient’s good fortune is usually due to previous conventional treatment and/or being a biological outlier. (There’s a reason why I frequently cite a 50-year-old paper showing that about 18% and 4% of women with completely untreated breast cancer are still alive at 5 and 10 years, respectively.) Don’t believe me? Click this link. It goes to one of the first posts I ever wrote, which has served as a template for similar posts for over 12 years.
Cancer quacks like Stanislaw Burzynski rely on these stories, so much so that there is an entire website devoted to showing how the vast majority of these patients were exploited and died anyway. The basic narrative is this. A person develops an incurable cancer. (In the case of Burzynski, it’s usually an incurable brain tumor.) That person (usually) pursues conventional therapy to the point where it can no longer offer anything other than palliation. It’s then at that point that the patient, now considered to be “terminal,” finds Burzynski (or another cancer quack) and decides to “take a chance.” If the patient does well (at least for a while), he or she becomes a believer and then proselytizes for the Holy Church of Burzynski, who then garners more
followers victims. Of course, patients who don’t do so well usually die quickly and are never heard from. Moreover, most (close to all, actually) of the “success stories” of these quacks also eventually die, but when they do it’s swept under the rug, often with their stories disappearing from the pro-Burzynski websites. It’s not just cancer quacks, either. Quacks of all stripes rely on these stories, which are particularly effective in the case of serious diseases whose courses naturally wax and wane and whose temporary improvements can be attributed to whatever alternative medicine was tried at the time.
These stories are very compelling, because we human beings are story telling apes with pattern-seeking brains. It matters not whether the pattern reflects true causality; our brains impose causality on stories. That’s how the idea that vaccines cause autism developed; enough children are vaccinated in relatively close proximity to their parents noticing the first symptoms of autism that by random chance alone there are lots of kids whose first symptoms appear to coincide with vaccines that parents confuse correlation with causation. It’s also true of a lot of narratives about quackery. It’s therefore not surprising that these sorts of stories are appealing to publications that normally should know better. For instance, STAT News painted a young man’s quest to undergo treatment by Stanislaw’s Burzynski’s antineoplastons as a battle against an uncaring FDA, even though the FDA was actually trying to protect patients (and, sadly, failing) against Burzynski’s cancer quackery. Earlier this week, the New York Times did the same thing, glorifying anecdotes of patients who used alternative medicine and appear to have gotten better as though they demonstrated efficacy, in an article by Jane Brody entitled Hitting a Medical Wall, and Turning to Unproven Treatments. It’s based on a book, The Other Side of Impossible: Ordinary People Who Faced Daunting Medical Challenges and Refused to Give Up, by Susannah Meadows. You can tell the framing of the tale from the title of the book, but in case you can’t, here’s a description:
You’re faced with a difficult health condition. You have exhausted medicine’s answers. What do you do? Susannah Meadows tells the real-life stories of seven families who persisted when traditional medicine alone wasn’t enough.
Their adventures take us to the outer frontiers of medical science and cutting-edge complementary therapies, as Meadows explores research into the mind’s potential to heal the body, the possible role food may play in reversing disease, the power of agency, perseverance, and hope—and more.
Meadows chronicles her own story, and takes you into the lives of other remarkable people, exploring their heartbreaks and triumphs. One boy who has severe food allergies undergoes an unconventional therapy and is soon eating everything. An organic farmer in Washington State tries to solve the puzzle of her daughter’s epileptic seizures. A physician with MS creates her own combination of treatments and goes from a wheelchair to riding a bike again. A child diagnosed with ADHD refuses to take medication and instead improves his life, and the life of his family, after changing his diet. Other families take on rheumatoid arthritis and autistic behaviors.
So you know right away that Meadows approaches her topic as a true believer, having used “a combination of traditional and complementary medicine they beat the disease [juvenile idiopathic arthritis], and the odds.” There is not an ounce of skepticism detected, and unfortunately Brody shows minimal skepticism as well:
In her new book, “The Other Side of Impossible,” Susannah Meadows, a Brooklyn-based former senior writer for Newsweek, has compiled compelling stories about people who faced and ultimately surmounted daunting medical challenges. The book focuses on several families, including her own, who felt they had no choice but to wade into the world of unproven therapies.
The families’ ventures into a realm that some would call quackery were typically inspired by love, desperation and hope, and were fueled by irrepressible grit and determination to find solutions to debilitating health problems that defied the best that conventional medicine could offer.
“Into a realm that some would call quackery”? Um, no. Much of it is quackery, with little or now biological plausibility and, even more importantly, no good clinical trial evidence that it works. So Meadows explores several cases, and, not surprisingly, she found “at least three important influences on well-being that have yet to receive their just due in understanding what might cause or aggravate certain intractable medical disorders.” If you’ve been reading this blog (or, of course, my not-so-super-secret other blog or other medical skeptic blogs), I bet you can figure out what at least one or two of these influences are. I’ll give a hint: Think “autism biomed.” Here’s another hint: I’ll mention that, surprisingly, “heavy metal toxicity” (a favorite among the “autism biomed” crowd of quacks) was not one of them; at least it wasn’t mentioned in Brody’s article. So that leaves a couple of other common bits of quackery common in “autism biomed.” Can you guess?
OK, I’ll tell you:
One is a characteristic called “leaky gut,” essentially tiny holes in the intestinal walls that allow proteins to reach the bloodstream where they can trigger a vicious immune attack on healthy tissues.
Another is an imbalance of microbes in the gut and how communication between the brain and the gut can adversely affect behavior and emotional stability. A third is the still underappreciated interaction of mind and body, especially the effect that anxiety and fear can have on the body’s response to otherwise harmless substances.
Now, “leaky gut” might be something resembling real syndrome, but the quack version of leaky gut is quite unlike what doctors understand. Think of it as being like celiac disease—only more so. Celiac disease, unlike leaky gut, is a characterized disease. There’s no doubt, either, that it’s very debilitating to about 1% of the population and can be ameliorated by avoiding gluten in the diet. However, in the hands of popular culture and quacks, “gluten sensitivity” has become the cause of all manner of symptoms, vague or not-so-vague, and is at the root of all diseases, even though “gluten sensitivity” really doesn’t exist outside of celiac disease. Like “gluten sensitivity,” leaky gut has become a catch-all diagnosis that naturopaths and other quacks love to make to explain all manner of symptoms and justify all manner of quackery. Leaky gut is a particularly popular diagnosis these days among autism quacks. Indeed, you can go all the way back to Andrew Wakefield himself and his “autistic enterocolitis” to find an early version of leaky gut being invoked as a “cause” of autism. In any case, it’s worth invoking the Canadian Society of Gastrointestinal Research when it says:
The Myth: According to the proponents of leaky gut syndrome, bacteria and toxins enter the bloodstream through these defective tight junctions and wreak havoc throughout the body, causing bloating, gas, cramps, inflammatory bowel disease (IBD), as well as fatigue, food sensitivities, joint pain, moodiness, irritability, sleeplessness, autism, and skin problems like eczema and psoriasis.
Debunked: This is all speculation, as scientific studies do not validate any of these claims. It is extremely dangerous that a TV doctor personality and some otherwise trusted practitioners are diagnosing and treating this baseless ‘syndrome’.
The same document points out how the treatments proposed for “leaky gut syndrome” range from bogus to dangerous and how the wrong diagnostic tests are frequently used.
Not surprisingly, autism quacks are also fond of invoking the “intestinal microbiome,” as it often goes together with “leaky gut” in pseudoscientific circles. Indeed, claiming changes in the intestinal microbiome is now a favorite quack diagnosis and treatments to restore the biome are a favorite among naturopaths. The microbiome is closer to gluten sensitivity in that there is an evolving body of evidence that the microbiome has a significant effect on health and disease. It’s not implausible that changes in the microbiome can contribute to disease. However, like epigenetics, the intestinal microbiome is a concept that’s been co-opted by quacks of many stripes to explain…well, everything. For yucks, I searched the antivaccine crank quack website Age of Autism for “microbiome” and came up with hundreds of hits. Basically, the microbiome is an important topic for which further research is more than justified, but the vast majority of claims made by those claiming to treat disease by treating the microbiome are without a grounding in evidence, particularly when changes in the microbiome are made for autism, heart disease, autoimmune diseases, diabetes, and pretty much every chronic disease under the sun. None of that stops quacks like Sayer Ji from saying things like, “99% of what it means to be human is microbiome-based.”
Basically, the microbiome and “leaky gut” are the new “quantum,” in terms of co-optation of the terms by quacks. I wonder if Deepak Chopra has discovered them yet. Oh, crap. He has. He’s even said that “we are a few human cells hanging on to a bacterial colony, we are the awakening of bacterial consciousness” and that the microbiome “doesn’t like anything that’s refined, manufactured, processed, GMO’d, because again GMO interferes with its ecology. It is the life of the earth. And when it gets inflamed, it sends out metabolites that cause disruption of the activity, both of the epigenome and of the gene directly.”
So this is what we’re dealing with here. We’re also dealing with stories like this:
That patient was Dr. Terry Wahls, who overcame a progressive form of multiple sclerosis for which medicine had little to offer.
Once confined to a reclining wheelchair despite trying a range of conventional treatments, Dr. Wahls researched, then adopted, a diet that eliminated grains, dairy and sugar but included 12 cups a day of berries and vegetables supplemented with grass-fed beef, organ meats and oily fish. She combined this with neuromuscular electrical stimulation and exercise.
Within a year, Dr. Wahls had ditched her motorized assists and started riding a bicycle. Eight years later, she shows no signs of her disease. Last summer, the National Multiple Sclerosis Society, which has been tracking research into diet and inflammation, committed more than $1 million to study the effect of her diet on M.S.-related fatigue.
Steve Novella analyzed Dr. Wahls’ anecdote three years ago. Let’s just say that it’s not as convincing as presented here. Novella also points out:
If you could really cure MS with diet alone, it would be easy to demonstrate this in a clinical trial. Drake and Wahls know this, so they have to also endorse (even if just implied) crazy conspiracy theories about Big Pharma, the medical system, and greedy or just pathologically incurious doctors.
Now, let’s get back to Meadows and her son Shepherd, who developed idiopathic juvenile arthritis. According to Brody:
She and her husband were told he was unlikely to outgrow it. Facing a choice of doing nothing or treating him with a potent drug that “made him feel bad and did little for his arthritis,” she learned about a child with the same condition who was helped by avoiding gluten and dairy products and taking fish oil, probiotics and a Chinese herb.
“With nothing to lose — if it helped one child, maybe it will help ours,” Ms. Meadows said. “In terms of hope, an example of one is very important.” And as she reported four years ago in an article in The New York Times Magazine, Shepherd got better.
Eventually, with the help of a self-styled healer named Amy Thieringer, who emphasizes the need to calm fear and anxiety when trying to counter food sensitivities, Shepherd was gradually reintroduced to gluten and dairy and “now eats everything without any problems, no more painful, inflamed joints,” his mother said.
“Unlikely to outgrow it”? Notice that it doesn’t say how unlikely to outgrow it Shepherd was. It turns out that prolonged remission of juvenile idiopathic arthritis, while uncommon, is not nearly as uncommon as Meadows implies that it is, particularly for certain subtypes. Indeed, the disease can have a highly variable course. Curious, I checked out Thieringer’s website. It touts something called the “Allergy Release Technique,” which she describes thusly:
Allergy Release Technique™ (A.R.T.™) is an integrative methodology that focuses on building and strengthening the body’s immune system with the goal of eliminating allergic responses. A.R.T.™ is a unique combination of advanced energy medicine and Western technology, working to balance an individual’s energy to allow the immune system to function optimally.
This is pure drivel. If you don’t believe me, then look at this further description:
Amy developed a protocol based on functional health using a Galvanic Skin Response Device. She is looking at the body’s systems as a whole, seeing which systems are stressed and figuring out what microorganisms and toxins are creating the stress. Amy has also identified five trigger allergens that habitually create stress in the body and contribute to the heightened immune response. They are mold, dust, chemicals, sugars and additives. When she uses homeopathy to balance the immune system she also makes sure these five allergens do not stress the body.
Along with balancing and strengthening the immune system, A.R.T.™ has varied tools that support the anxiety response in the body: kids tap specific Acupuncture Points to reroute the Autonomic Control System and deactivate old scripting. They use mantras, vision boards and grateful journals to create a new story. They let their “firefighters” (immune response) know that they are strong and ask them to step back so they can safely eat the foods.
Homeopathy? Regular readers know that I refer to homeopathy as “The One Quackery To Rule Them All,” and with good reason. Galvanic skin response? It’s also quackery. I also note how Thieringer touts how she is featured in Meadows’ book, and it’s true. From Brody’s account, it’s clear that Meadows touts at least one other of Thieringer’s “success stories.” It’s also clear that Brody didn’t do even minimal checking into what Thieringer actually does in her treatments.
In any case, Thieringer came later. The first person who tried to treat Shepherd through diet was Charlotte Walker, and Shepherd was getting methotrexate at the same time, leading Meadows to admit four years ago:
To be clear: There is no proof that it was Walker’s regimen that drove away Shane’s [Walker’s son’s] and Shepherd’s arthritis. Shane’s case makes a stronger argument, since he didn’t take methotrexate. Still, his arthritis may have gone into spontaneous remission, and a study of one is not much of a study at all.
It’s not clear whether Meadows had yet discovered Thieringer then, but a recent interview on Oprah.com (of course!) featured Meadows praising Thieringer to high heaven.
I agree with Steve Novella that it’s extremely disappointing how the NYT has pandered to a simplistic narrative that will benefit quacks everywhere. Unfortunately, it’s not just the NYT that failed here. Just yesterday, NPR also published a credulous interview with Meadows, where she offers encourages experimentation in a way that an autism biomed mom would approve of heartily:
The biggest thing that I have learned is that when it seems as if there are no options, you can still look for them and maybe find them. That you have a choice to keep going when others say that you can’t. I don’t think I had that feeling when Shepherd was diagnosed, but I think his unlikely recovery taught me that.
While persistence is a valuable trait that will take you far, there comes a point when persistence is harmful. That point is when persistence blinds you to pseudoscience. Meadows appears to have reached that point, and Brooks bought into the narrative. I wonder if this is the wave of the future at the NYT, given that it just hired a climate science denialist for its opinion page. On the other hand, Jane Brody has been writing for the NYT for quite some time and has even authored The New York Times Guide to Alternative Health and has a history of promoting the pseudoscience that a “positive outlook” will help your chronic health conditions; so maybe the NYT has its biggest problem with medical pseudoscience rather than climate pseudoscience.