For context, you can find the below referenced conversation here.
For migrainuers and others who may have difficulty reading this, I'll try to record an audio version soon!
This weekend I did something very out of character for me: engaged a member of the Twitterverse in verbal combat. There was a misguided fellow on there who was claiming migraines can be “easily cured.” To be candid, I usually try to use my internet powers for good, and don’t normally engage in conflict with people online, but something moved me speak up. Maybe it was the Buffy The Vampire Slayer marathon I was watching that gave me the impetus to speak; maybe it was the migraine I'd had, and still have, for three months; maybe it was some combination of the two. I have increasingly little patience for charlatans that claim to be able to quickly solve complex diseases.
I am a patient with complex chronic illness who struggled for 20 years before finding my primary diagnosis. My experience inspired me to start a podcast about living with chronic illness and disability. I did this, in part, to give others living with illness the opportunity to talk about their experiences. I am not a doctor, I have no medical training, and it’s really important to me that you know that. It’s so important that I’ve devoted a whole page on the podcast’s website to the fact that I am not a medical professional, and possess only anecdotal experience and painstaking research. Despite the considerable medical knowledge that I’ve acquired along the way, I would never claim to be able to diagnose, treat, or cure anybody—not just for legal reasons, but also because I am unqualified, untrained, and well aware that "easy cures” and "quick fixes" are largely the domain of the late-night infomercial. It would be irresponsible and unethical for me to dole out medical advice, especially without recommending you at least run it by your doctor first.
Not everyone shares my concerns about the ethics and implications of giving unsolicited, unqualified, and untrue medical advice. One such person is someone named Reid Jenner. His Twitter bio claims he is a “Naturopathic Diagnostic Specialist.” The bio lists no training or certifications that might make him qualified for such a role, nor do his website, blog, or LinkedIn profile. In fact, a quick perusal of his online footprint shows the vast majority of his work and educational experience is with the oil and gas industry. With the exception of an additional Twitter account called @theundoctor--which he curiously seems to have abandoned in May--conspicuously absent from his online presence, and even the introduction to his book, is any representation of his health-related credentials. And yet, he’s selling that book, publishing a blog, and offering consultation services about “solving your medical mystery.”
Medical mysteries really hit home for me. In fact, about a year ago, I finally solved my own. But I solved it with the help of several compassionate and well-trained physicians, patient networks, and a mountain of peer-reviewed medical literature. I also had a very specific set of personal, economic, geographic, educational and professional circumstances that enabled me to solve two decades worth of strange symptoms. I fully recognize that most people do not have the resources to do that, and a book written by an unqualified and arrogant con artist cannot be the stop gap.
Some of Jenner's points, like those about the difficulties of getting a timely and accurate diagnosis in a traditional medical setting and the importance of patient participation, are actually valid. I know from experience that complex patients are falling through the cracks every day. I lived it first hand. But this problem is further exacerbated by people like him who exploit the weaknesses in our very broken medical system to dupe desperate people into trusting them, almost exclusively for profit (in Jenner’s case, he’s selling his book). It is remarkably easy to take advantage of the noise and confusion to make a profit with the aid of half-truths and pseudoscience.
When confronted with his lack of medical training, Jenner was proud to tell me he isn't a doctor, that that's the whole point. He fell back on the institutional challenges that can inhibit doctors from quickly and accurately finding a diagnosis, and attempted to exploit those circumstances to gain trust. He referred me to the aforementioned Twitter bio and blog to find his qualifications. However, neither an explicit disclaimer about his lack of medical training, nor any reference to why he might be qualified to tell people what to do with their bodies can be found. He simply claims to be an expert, and relies on most people being too trusting or vulnerable to suspect otherwise. This is why health and information literacy are such important skills to develop, although not everyone can. We must watch out for each other, and remain vigilant in the face of questionable promises of relief. Remember, if something sounds too good to be true...
When I saw that he had posted something about “curing” a woman of her migraines by recommending she simply move out of her house, I got mad; when I saw he was arrogantly pushing back against informed feedback he’d received about how that is not only not a cure, but avoiding all triggers are not always an option for people, I got madder; when he claimed “all migraines” can be “easily cured” after an hour and a half remote consult with him, I got involved.
I see content like this all the time, and will rarely even click on it, because I know it will just serve to upset me—ain’t nobody got spoons for that. Migraine is a complex neurological disease that has several types and causes, and is often quite difficult to treat. Some people can find relief by identifying and avoiding their triggers, and that is wonderful for them--I would love nothing more than to be one of those people. Yet for those like me, we avoid our triggers, use preventative and acute medication to avoid and treat them, make sure we’re drinking enough water, exercise, meditate, go to counseling, and integrate a variety of other treatment approaches... and we’re still not cured, not by a long shot. Many of us continue to live with migraines in spite of a variety of interventions, and avoiding our triggers is just a piece of that.
Reid Jenner seems to make a lot of assumptions that may be true for some people, but certainly not for the entire community, whether that be migraineurs specifically, or chronic pain patients in general. He assumes that we don’t already know our bodies. He assumes that we have not already identified and avoid our triggers as much as we can. He assumes that avoiding every single trigger is a choice (spoiler alert: it’s not). He assumes that our doctors don’t know what they’re doing and haven’t helped us at all. He assumes that medication is never the answer. He assumes that we just aren’t trying hard enough. He assumes that we don't have a medical problem, we have an attitude problem--all assumptions that are dismissive, shameful, classist, and ableist.
Jenner assumes, again with no medical training, after an hour and a half of remote consultation, that not only can he tell us what years, thousands of dollars in testing, and countless doctors have been unable to; but that there will be a simple solution. Simple solutions to complex problems are rare, and usually not very effective. Cures are rarely that, and using that word in regard to a complex and generally incurable disease is a big red flag.
Jenner's attitude about medication is one of the most frightening aspects of his approach. Many times medication is not only appropriate, but absolutely necessary. It is dangerous for him, without medical training, to be encouraging people to go off their medications. Some of those medications save our lives on a daily basis. We don’t want to have to take medication, but sometimes we have to--please don't let unqualified people tell you to come off your medication. It is very important to discuss it with your Actual Medical Doctor; sudden withdrawal from many medications can be dangerous, and even deadly.
Jenner’s characterization of migraine management as just “heavy-duty pain medication” is simply incorrect. Unfortunately not everyone has access to a headache specialist, but migraines are managed in a variety of ways including medications from triptans to tricyclic antidepressants to oral contraceptive pills (in some women without migraine aura) to Botox, supplements like magnesium and butterbur, lifestyle changes and Cognitive Behavioral Therapy. Since each patient is different, they often respond in varying ways to varying combinations of those approaches. Not everyone has access to all of those treatments, and not everyone can implement and keep up with the sometimes deeply disruptive life style changes. Some people are able to find significant relief, while others still struggle immensely. Regardless, no Actual Medical Doctor would claim they are easily treated, let alone “easily cured.”
What alarmed me the most about my exchange with Reid Jenner was that while I was attempting to explain my very legitimate concerns about his claims, he continuously and aggressively attempted to lure me into a consult without any knowledge of my symptoms or medical history, still claiming he could probably cure me. I was disturbed not just by his lack of credentials, but even more so by his lack of humility, nuance, and complete inability to acknowledge that maybe he’s not right about everything for everyone all of time.
In those 20 years I spent undiagnosed, I saw enough dismissive doctors who were incapable of hearing my concerns. I sure as hell am not going to trust an untrained quack to do more of the same.
Note: I could go on for hours about trust as social currency, and the issues surrounding professional credentials. Just because someone has those credentials does not make them trustworthy, and lacking those credentials does not inherently invalidate trust. But that trust is earned by hard work and first hand experience. If someone trying to sell you their book is not able to give you, at the very least, a description of their relevant experience--especially when it relates to health and medicine--it's a pretty good sign to turn and run. Stay vigilant.