Aftermath: Will the “alternative health movement” learn anything from Jess Ainscough’s death?

It’s been a rather…interesting…weekend.

Friday, I noted the death of Jess Ainscough, a.k.a. “The Wellness Warrior,” a young Australian woman who was unfortunate enough to develop epithelioid sarcoma, a rare cancer, at the age of 22. I’ve been blogging about her because after her doctors tried isolated limb perfusion with chemotherapy in an attempt to avoid an amputation of her left arm at the shoulder, her tumor recurred, after which she chose not to undergo amputation and instead to embrace the quackery known as Gerson therapy, which she did for over two years. By the time she finished her Gerson therapy, she had become a celebrity Down Under, a frequent media fixture advocating “natural” health and a raw vegan lifestyle, fawned over by a credulous press. When her mother developed breast cancer, she, too, used Gerson therapy, resulting in her death. That’s when I first encountered her.

In any event, in December, Ainscough admitted that her health was deteriorating, and on February 26, she died. My post about her death provoked far more of a reaction than I had thought it would. When I wrote about Jess Ainscough’s tragic death, I expected that maybe a few of her fans wouldn’t be happy. What I didn’t expect is that hordes of her fans would infest the comments section, and I certainly had no inkling that the post would become one of my highest traffic posts of all time, if not the highest traffic post of all time (which it very well might end up being).

So it’s with a little trepidation that I write this follow up. However, I felt the need when I saw an incoming link from a post entitled What The Alternative Health Community Must Learn From Jess Ainscough by Laura Schoenfeld, MPH, RD. After emphasizing in bold letters that this is “not an attack on Jess as a person, her character, her motivations, or her beliefs,” apparently having learned from my post that no matter how polite and civil one tries to be writing about Ainscough’s story and ultimate demise will nonetheless provoke nasty reactions from some of the Wellness Warrior’s fans, Schoenfeld goes on to say that her post is about something that’s been bothering her, the use of what she refers to as “persuasive marketing to promote diet and lifestyle choices that are purported to cure a person from any disease or health related concern.” (I’m half tempted right here to ask: Is there any other kind of marketing?) In any case, she observes:

There’s a fine line between an attention-grabbing title and a title that makes people feel fear, and sometimes that line depends on the person who is reading the article. It’s a slippery slope that is difficult to maneuver in the world of online marketing. But it’s one where we absolutely must tread carefully.

Unfortunately, as more and more health “experts” enter the world of online health education, these tactics are employed more regularly and misleadingly than ever. Whether that tactic be fear or false hope, there is a lot of health information being promoted online that is not only inaccurate but potentially dangerous for certain peoples’ health. (And sometimes the inaccuracy comes from omission rather than outright falsification.)

I see it all the time in my nutrition practice where people believe that things they’ve learned about online like a super strict, “clean” diet or alternative “therapies” will make all their health problems go away, and it’s not working for them. Sometimes they’re actually worsening their health by faithfully following well-marketed online health gurus’ advice.

The first thing you need to know is that Schoenfeld runs a website called Ancestralize Me. Her business is nutritional counseling, and she appears to believe in a form of “paleo diet” to address various health concerns, including:

  • Digestive Disorders
  • IBS/IBD
  • Fertility and Pregnancy
  • Autoimmune Disease
  • Thyroid Disorders
  • Hormonal Health
  • Amenorrhea
  • High/Low Blood Pressure
  • Adrenal Fatigue
  • Blood Sugar Control
  • Acne and Skin Conditions
  • Weight Issues
  • Child and Family Nutrition
  • Blenderized Tube Feeds

True, she does say that if you have a chronic health problem that hasn’t been addressed by a physician or naturopath you should do that first. Her mentioning a naturopath, given that naturopathy is a veritable cornucopia of quackery that includes The One Quackery To Rule Them All, homeopathy, is not a good sign, nor is her mention of adrenal fatigue, which is not a real diagnosis. Indeed, the public education arm of the Endocrine Society, representing 14,000 endocrinologists said as much. To be fair, I feel obligated to point out that the woo component on Schoenfeld’s website appears lower than many nutritionists associated with the “alternative health community” promoting various “paleo diets” usually demonstrate, but it must be pointed out that there is at least a little woo there.

Which brings me back to what Schoenfeld thinks the “alternative health community” should learn from the death of Jess Ainscough. At the risk of being too snarky and having another horde come down and attack me, my response to that question would be that the “alternative health community” should learn that there’s no such thing as “alternative” health, medicine, or diet. There are three kinds of medicine: Medicine that’s been shown by science to work, medicine that hasn’t been shown to work, and medicine that’s been shown not to work. The vast majority of “alternative medicine” belongs to the latter two categories. The same is true of the vast majority of diets for health promoted in the “alternative health community.” What Jess Ainscough’s case teaches us is that there really should be no such thing as “alternative medicine” or “alternative health.” There really shouldn’t.

As for marketing, “alternative health” sites live and die by “persuasive marketing.” Testimonials are stock in trade, particularly cancer cure testimonials like, yes, Jess Ainscough’s. I note that she didn’t actually make an attempt to deny that she was claiming that the Gerson therapy had brought her cancer under control until about a year ago, when it was becoming apparent to even her fans that it hadn’t. Yes, she believed it, but that’s what made her so effective. She believed, and she was good at making others believe her too.

So let’s see what lessons Schoenfeld thinks the “alternative health community” should take away. First, there’s this:

The first is, as consumers of health information online, we need to be far more critical about what we’re reading when it comes to health and wellness recommendations, and take everything we read with a grain of salt.

Persuasive marketing techniques can be powerful in communicating a message, and when that message is “do this and you’ll achieve perfect health”, it’s an incredibly dangerous one. I’ve seen multiple patients with eating disorders that developed from following the online advice they read, which caused fear and paranoia around a food as simple as a banana.

OK, this is a good lesson. It’s also highly naive to think that this lesson will be learned by a significant number of people in the “alternative health community.” Here’s the problem. Because “alternative health” claims and alternative medicine consist primarily of medicine that has either not been shown to work or shown not to work, credulity is built in. Claims are made, but they are not made for readers to be skeptical of, as they’re almost always supported not with valid scientific evidence but rather with a combination of testimonials, cherry-picked studies, and conspiracy mongering against “big pharma.” The reason is simple. “Alternative health” practitioners rarely have evidence that passes scientific muster to support their claims. Either that, or they vastly exaggerate what diet and various “alternative” treatments can accomplish.

Schoenfeld warns:

Or that maybe conventional treatment like medication or surgery really is your best option, and it shouldn’t be discounted simply because it’s not “natural.” This includes everything from (medically appropriate) statins and thyroid medication, to amputation and corrective surgeries.

This is why working with a licensed medical professional (or two!) is important when trying to make decisions about your health. You shouldn’t be trying to do this alone using advice given from a health blogger with a weekend-long certification course under their belt, or from a PhD who has never worked with a single patient before.

There are hundreds of ancestral-health minded practitioners who can help guide you through the good and the bad advice you’ve been exposed to online, and to get you on a health protocol that is tailored to your unique and individual needs.

This, unfortunately, is the trap of “integrative medicine,” which claims to “integrate” alternative medicine with conventional medicine. Just having a physician involved in these decisions is no guarantee that the advice won’t be dangerous. Look at Stanislaw Burzynski. Look at Rashid Buttar. Look at Mark Geier. Look at Meyer Eisenstein. Look at Jack Wolfson. I could go on and on and on naming doctors who offer dangerous quackery.

Let me repeat that again: Working with a licensed health professional is no guarantee that the advice given will science-based if that health professional is a naturopath, a chiropractor, or another “alternative practitioner” or if that health professional happens to be a practitioner of “integrative” medicine. In fact, such “alternative” or “integrative” doctors tend to reinforce what the patient already wants to believe. There’s a bias, in which patients interested in “alternative health” will seek out and eventually find health care practitioners who will provide them with what they want, and those practitioners tend not to be particularly evidence- or science-based.

Schoenfeld’s next lesson is just as naive:

The second thing we need to learn as health communicators, whether we have our own blog or we are simply sharing information with friends and family, that we need to be forthcoming about our experience with the strategies we are recommending, good or bad.

While there is a lot of pressure on those of us who present ourselves as health experts to look perfect and have perfect health, the reality is that no one has perfect health, and often times the stress of running a business designed to help others with their health can cause it’s own problems for our health.

And:

Again, this is where conventional medicine like drugs or surgery may be helpful when diet and lifestyle are not enough. And it may even mean letting go of the idea that we have complete control over our health and physical wellbeing. Because for as much influence as we have in our health, nobody has complete control over what happens to their bodies.

Jess’s death has brought this issue to a head for me, and I felt compelled to share my thoughts on the problem I’ve been seeing more and more in the online alternative health community. We need to be mindful of the information we consume as well as that which we share with others, and make sure we are not painting a picture of our health advice being more successful than it truly is.

Give up the idea that we have complete control over our health and physical well being? Seriously? That’s the very concept that’s at the heart of alternative medicine, so much so that I’ve called it the central dogma of alternative medicine, and when you start questioning it you will not encounter a friendly reaction in the “alternative health” community.

If the “alternative health community” were to learn from Jess Ainscough’s the two lessons Schoenfeld wants it to learn, to really take those lessons to heart, it wouldn’t be the alternative health community much longer. That’s exactly why it won’t learn anything. Indeed, my prediction is that it will make excuses and turn on her for not having believed enough, done Gerson therapy correctly, or hewed closely enough to her “Wellness Warrior” raw vegan diet.