Medical Disinformation & What's to Come

Get ready for some major disinformation

Prepare yourself: we’re about to see a swell of medical misinformation and disinformation. That’s the reality of living in an RFK 🤝 HHS world. And it’s already hitting us (it has for a while), much like an invisible tsunami you won’t recognize until you’re already drowning.

You may think I’m being dramatic or hyperbolic, or silly. You may wonder why I’m taking the time to highlight the darkest corners of the wellness industry and how they prey upon fear and ableism. Well, I have a pretty big BS detector when it comes to this and (thanks to ADHD) I have a strong sense of justice.

So let’s take a classic ADHD hyperfocus and dive into why we need to be aware of the wellness industry, why it’s now empowered by RFKs appointment, what to expect, and what we can do to advocate for ourselves. (omg, does revealing that I have ADHD mean I may fall victim to one of RFKs mentioned wellness camps?

First off, why do I see this trend? Well, it’s because I’ve worked in social media since 2008 and, if you want a little insight into my background, I oversaw one of the very first brands to launch an Instagram account (seriously: Instagram launched October 2010 and BG had an account in November 2010), among many, many other things.

Beyond that, I studied language and image during college and how those coalesced. I don’t want to sound partisan, but, as an example of this synthesis, you can look back to the Obama campaign’s iconic Hope posters, featuring the former president’s portrait with the emphasized “O” referencing his last name. Simple words and images have power and can inspire a movement.

Shepherd Fairey

You can think about the artist Banksy and how he’s pairs images and text to highlight social justice issues or the feminist artist Barbara Kruger whose style and typography are so iconic it influenced Shepherd Fairey’s Obey logo (and, I imagine in a way, his Hope portrait).

Barbara Kruger, New York Times

So I took all this nerdy Davidson education and somehow spun it into a social media career (a concept that barely was at its inception when I graduated in 2004) and have continued to play with this tension between image and text for over 15 years. 

During this time the social media landscape has experienced massive transformations, going from a space of jovial check-ins, embarrassing photos, and brands taking risks simply to try it, to the highly strategized, algorithm-fueled marketing machine that it is today. 

As soon as social media platforms learned they could profit off engagement, social media dramatically changed. It no longer was a space for hipster kid photos, OK Go videos, and words with friends, it was a sophisticated marketing and advertising platform. Remember Instagram’s first ad? I do.

And as social media became more sophisticated, its information wasn’t as black and white. It lost its innocence and charm.

If you’re an elder Millennial or a Gen X-er, you remember how we used encyclopedias and dictionaries growing up. In college, we relied on JSTOR, printed publications, textbooks, and card catalogs. Now, because of the internet and social media, information is less clear. Sources are nebulous. ChatGPT is used as a source.

On a haunting level, while the information is murkier, it’s now much easier to sound correct, especially when you have a highly skilled social media and communications team.

We’re trained to optimize and design for the algorithm. We’re trained to create powerful images and text that fuel engagement and shares. Some of us use it for good, some of us do it because it can be exhilarating (ever experienced the dopamine surge of a post gone wildly viral?), and some of us do it because, well, it’s a job. Finally, some do it because it’s an effective way to sell and profit, to prey on the desire for instant gratification, information, and even fear and rage. Today let’s look into medical misinformation and disinformation.

How medical misinformation & disinformation permeate:

Online and social media information can get twisted for so many reasons.

First, it can be innocent. Someone like me (who has aphasia, a bad memory, or a speech disorder) may say the wrong word and that can completely convey the wrong message or intention. I’ve done it before: during a video I said the wrong kind of doctor and was corrected in the comments. The mistake haunts me to this day because I don’t want to be that person. But… I also have aphasia. I mix up words and don’t realize it or even recognize it during the editing process. I get it: those mistakes happen but when they do, own up to it, acknowledge it, and correct it as best you can. Living with a disability is about accepting that disability, using the available tools, and working with it as best you can.

Next, there could be a person citing a long-ago memory (I see this often with doctors who try to educate outside of their scope) and their information either is outdated, accidentally changed, or misremembered (hey, I have brain fog, too. that’s why I fact-check everything). 

There’s a TikTok & Instagram neurosurgeon I like and truly respect but she is a constant source of migraine misinformation. This likely is because she hasn’t received any updated information about the disease in over a decade (and so much has changed since then - back then migraine was a vascular disorder that had lots and lots of triggers, whereas now migraine is believed to be a genetic neurobiological disease that makes a person sensitive to triggers). She has migraine herself, so her migraine content performs well. But most of the time what she shares about migraine is inaccurate or outdated.

Frustratingly, so many people believe her because she seems like an authority. After all, she’s a neurosurgeon who lives with migraine. Shouldn’t she know? Short answer: No. Neurosurgery’s strenuous 14-year training doesn’t include migraine disease because migraine isn’t a condition requiring any kind of neurosurgery (at this time, migraine surgeries are dubious, not recommended by the American Headache Society, and (at the dismay of many headache specialists, who know how ineffective migraine surgery can be) performed by plastic surgeons).

Back to misinformation sources: someone repeats details gathered from what they believed was a trusted source. But that trusted source wasn’t an accurate source of information. I see this often with people who almost repeat verbatim what their ‘knowledgeable’ source originally said. The soundbite was so incredibly catchy. It’s almost difficult not to repeat it. “80% of people with migraine are deficient in sodium. These patients were cured of their migraine when they added a pinch of Celtic salt to their water each morning. You see, Celtic salt has extra nutrients in it that also treat migraine.” Any person living with chronic migraine is familiar with the trope.

This medical disinformation whirlpool happens often with people who follow the Mark Hymans of the world.

The authority sounds so logical and accurate, it has to be true! And it’s presented in these perfect soundbites making it easy to repeat. But often that information is completely incorrect and, when you pull away the layers, makes zero sense.

Follow up to the sodium myth: during the diagnostic process, people with migraine are given metabolic panels that include testing their sodium levels. They are not sodium deficient. If they were, they would be diagnosed with hyponatremia, not migraine. Additionally, migraine has very specific diagnostic criteria. Did the referenced 80% of people with migraine fit the migraine’s diagnostic criteria? That never was made clear. So how do we know if those people actually had migraine? Maybe they had a bad dehydration headache and the boost of electrolytes helped. See? There’s so much to peel back beneath the catchy anecdotes and sound bites. The average viewer won’t catch this and any challenger will be swarmed by an army of disinformation supporters.

Then there’s media training. Media training can make these disinformation communicators incredibly persuasive. I took media training (back during my Bergdorf days when I frequently was interviewed & spoke on panels) - it taught me everything from how to effectively answer a question and how to sound authoritative to which side of the stage to sit on so people would think I was the smartest of the bunch. We even covered what color to wear when on stage. 

There’s a reason so many social platform logos have involved blue in its history. Blue is associated with trust.

Many of these people are trained to be powerfully effective communicators, to gain trust, to appear comfortable and confident with their information, and to say what’s memorable and catchy. Everything from their wardrobe to their body language can be carefully constructed to earn (or win) trust.

What I’m seeing most is a phone tree of misinformation and disinformation spearheaded by incredibly media-trained figures.

Note that there is a difference between misinformation and disinformation. Misinformation is false information that’s spread regardless of whether there is intent to mislead. DISinformation is deliberately misleading, manipulated, or biased narrative and/or propaganda.

See the difference? The difference is intent.

So at the top of the hypothetical phone tree are the Mark Hymans and the Barbara O’Neills, Hubermans, and the RFKs, and - ugh - what’s my Celtic salt scourge’s name….? Gary Brecka. The podcast and talking head folk.

Below them are wellness influencers who repeat soundbites and further the message. “What if I told you there was a way to naturally heal your gut?” “Research-backed sleep behaviors you CAN’T ignore.” “Talk therapy is not enough to heal your trauma.”

Somewhere in between this mess is the press, which isn’t well-informed on medical fact-checking, and accidentally validates so many of these falsehoods. There needs to be better fact-checking and there needs to be more fact-checkers who can see through the wellness marketing BS. No, this thirteen-day cleanse will do nothing for you because detoxes aren’t supported by research (at best, they will strip your body of essential nutrients while you starve yourself as you sip cayenne lemon water and hope not to fall into the foggy depths of syncope).

Then below that layer is the expansive audience who in turn believes this disinformation, shares the soundbites in comments & DMs, and shares it at dinner tables, with strangers in the grocery aisle. They share it with their co-worker and swear it will help. And not only do they share the disinformation, but they also buy into and purchase whatever it is their authority or influencer says.

And at the very bottom of this necrotic phone tree are the bots that come in like little worker ants to strengthen and reinforce the message, making it sound more valid and powerful. Try castor oil. Heal yourself naturally ✨

The bigger mission behind the message

These leaders at the top of the phone tree purposefully spread disinformation. They sound incredibly knowledgeable like they’re authorities in their field… but the information they share is misleading, inaccurate, and/or biased. And the reason they say it is to sell: a service, unnecessary labs, superfluous testing, and so many supplements.

And, thanks to RFKs nomination, they’ve been emboldened and almost substantiated as authentic purveyors of medical information.

And their audience trusts their wellness leaders because they’ve likely listened to what their audience wants, and they’ve identified how gaslit and desperate patients are. They’ve discovered that patients often feel ignored and disrespected by their providers. Patients today are desperate for validation, information and reassurance that what they’re experiencing is REAL.

The overworked and cracking medical system (particularly during the beginning and throughout the ongoing Covid pandemic) and its providers are too overworked and under pressure to give patients what they want to give and what their patients want to receive: time, reassurance, understanding, and comfort.

As a result, patients have grown frustrated with and skeptical of the medical system. And they’ve started looking for alternative answers.

Those providing these answers use social media to tell an incredibly convincing story explaining why a specific symptom happens and the simple way to fix it…

Enter Barbara O’Neill and her self-healing yam cream or castor oil. Ignore that Australia banned her from providing any health services because she encouraged bicarbonate soda as a cancer treatment (rather than, you know, chemo).

Of course, Babs recovered from her medical disgrace and found a second life on social media where her TikTok congregation compared her to a benevolent witch banished because she knew too much and was too powerful of a healer. And they used this story to sell Celtic salt, castor oil, herbal teas, and yam cream (all conveniently available on TikTok Shop).

Wellness powerhouse voices use purposeful & convincing words & phrases like heal, imbalance, biohacking, “food as a form of healthcare,” boost, detox & cleanse, all-natural and transform in combination with scarier words and phrases like “the scary truth,” “hidden fact you need to know,” exposure, inflammation, root cause, toxins, etc (I’m literally just pulling words Mark Hyman’s Instagram where he claims fluoride is responsible for lower IQs in children). 

Mark Hyman’s Instagram

They find a nugget of information from one small study, twist & amplify it, discuss it, and “ask questions,” then present it in highly digestible soundbites and social media graphics.

Strangely, these graphics rarely cite their sources and when they do show sources, it’s vague: either a name or some misinterpreted or twisted data pulled from a dubious publication that seems valid because it was on PubMed.

Why medical disinformation has its roots

Why do they do all of this? Well, according to Fortune Business Insights, the global vitamins and supplements market size was $146.14 billion and is anticipated to grow from $154.98 billion in 2024 to $250.81 billion by 2032.

In the US, this market size is projected to grow significantly, reaching an estimated value of $27.74 billion by 2032. 

Quoting the FDA, the FDA does not approve dietary supplements for any purpose. Products that have claims to treat, diagnose, prevent, or cure diseases are generally subject to regulation as drugs (ie: prescription meds). The FDA does not generally review dietary supplements before they are sold to consumers. 

Still directly quoting the FDA here: In many cases, companies can produce and sell dietary supplements without even notifying the FDA. 

Bottom line: the FDA does not approve dietary supplements for safety and effectiveness or their labeling before they are sold to the public. The supplement companies themselves are responsible for ensuring that their products are safe and accurately labeled. 

And so disinformation leaders use this to sell their own branded supplements for their own profit. Visit Gary Brecka’s website and you’ll see branded supplements & wellness products starting at $36 for a sleep formula that promises to “combine the relaxing effects of theanine with the essential mineral magnesium and the sleep-regulating hormone melatonin to support healthy sleep patterns.”

But when I look at its supplement facts, it’s just 30mg of magnesium oxide, one of the cheapest and least efficiently absorbed forms of magnesium (enter the poop emoji). The recommended amount of magnesium for sleep is roughly 350mg and the Sleep Foundation recommends magnesium glycinate because it’s better absorbed and has less GI distress. Just… so you know, his site also sells as SuperHuman Protocol Package for $133,000. 

Supplements are marketed as a safer, more altruistic alternative to Big Pharma but prescription meds must follow a rigorous approval process including preclinical research (which can take years to decades), clinical trials or multiple clinical trials (which can take years to decades), FDA review (which is multilayered and rigorous) and approval, then there’s post-market safety monitoring. This isn’t a speedy process: in 2011, just 35 new drugs were FDA-approved for use, total! 

So it’s a really big deal when prescription drugs are FDA approved for use. 

But the wellness industry has banded together to present big pharma as a predatory machine intent on keeping people sick. They spread lies like that doctors are paid for each prescription written.

Within the wellness industry, we see so many profitmaking & capitalist ventures, from supplements to unnecessary labs and tests, to IV drips, to cleanses and genetic tests and oxygen treatments, and electromagnetic field mats available for $5,000. Conveniently, almost all of this is not covered by insurance.

The wellness industry uses fear to sell products while, on the surface, seeming kind and empathetic. They have the time to listen to you during appointments. They promise to get to the root cause and to help you heal naturally, so long as you continue to take their unregulated supplements and use their magical thinking products. 

Omigod. I haven’t even gotten into the “just asking questions” part of the whole charade, where wellness influencers and voices spread more fear and doubt into our highly regulated medical system. This is their way to conveniently avoid fact-checking. All they need to do is drop a few doozy lines that breed seeds of doubt about rigorously studied and regulated treatments and avoid any responsibility to fact by “just asking questions.”

And that’s what we find with the current person who hopes to head our Health and Human Services. He’s not anti-vaccine, he’s just asking questions. Let’s ignore the hundreds of millions of lives saved and the hundreds of studies & clinical trials that went into developing these vaccines. Let’s ignore the gorgeous reality that society no longer has to worry about contracting polio, smallpox, tuberculosis, etc. Let’s ignore that his ‘asking questions’ resulted in a measles outbreak in American Samoa that resulted in lockdowns, intensive care units, and switched-off ventilators, and 83 deaths, with 87% of those deaths being children.

Instead, let’s just ask some questions that are not at all rooted in reality. And, at the same time, here are a few supplements that will help boost your immune system while you deal with your case of measles which inevitably will weaken the immune system and make the body forget how to fight off infections. (no for real, that’s what measles inevitably does)

So what are signs of wellness scams and disinformation?

• Big promises to find the root cause and heal yourself naturally

• Red flag words like biohacking and “food as healthcare”

• Encouraging someone to get to the root cause via a laundry list of bloodwork

• People who sell their own branded supplements & use fear to market them

• “Just asking questions” 

• Presenting vague information, while using mildly scientific language, and then not backing it up with thorough data

• Using fear to market

• Treatments that sound too good to be true

• Words like “Big Food” and “Big Pharma” (but never “Big Supplement or Big Wellness”

• Dis-ease

• Attention-grabbing marketing phrases like “isn’t telling you this,” “most powerful,” “beneath the surface,” “you are what you eat,” “detoxify and repair,” “the secret to,” “the key to,” “be the solution” (again, just pulling phrases from Mark Hyman’s Instagram)

• Wellness personalities who have more than enough time to regularly appear on podcasts and social media videos (most practicing MDs do not have the time to speak on weekly podcasts because they’re doing things like seeing and treating patients, responding to patient messages, sending prescriptions, reviewing labs & images, writing prior-authorization and insurance appeal letters, and so much more)

Be prepared to see more medical disinformation, on a much larger scale, in the coming weeks and months. Be prepared for bots disseminating more doubt and disinformation, especially around critical and basic public health measures like vaccines & masks.

Be prepared for more and more influencers to transition to becoming wellness influencers because the pipeline from Weekend Yoga Girl to Food as healthcare-detox-and-just asking questions Girl is fast.

Be ready to report posts and comments as medical misinformation and be prepared for many of these reports to come back saying there was nothing wrong with the post… because algorithms are learning to prioritize and validate disinformation over facts. Why? Fear performs. Fear generates the most engagement. Fear spins the furthest in the algorithm’s path.

And RFK’s shiny new position of possible authority emboldens and invigorates every wellness figure (including himself ofc) to make bigger and/or scarier claims, bigger promises, and more ableist takes (like to combat the chronic disease epidemic).

Ok. This was a lot of information. Some of you may think I’m now looney - but I hope you remember my commitment to staying true to fact, what is evidence-based, and to calling out bad players who will take advantage of you. Aside from a few Instagram screen grabs, I’ve cited sites like the FDA, The New York Times, the WHO, The Lancet, etc.

I share this because our Health and Human Services department is at risk of massive restructuring and all of us need to be ready to advocate and fight for the NIH, the CDC, and the FDA. And this dismantling will affect everyone.

All of us need to be ready to stand up to those spreading disinformation about these incredible but sometimes frustrating institutions (looking at you NIH - it’s time to give headache disorders, dysautonomia, ME/CFS, and other incredibly disabling and stigmatized diseases more funding!). We need to become more involved in advocacy so we can prevent critical protections from being dismantled.

We need to fight disinformation because it also fights disease stigma. The wellness world is incredibly ableist. They see chronic illness as a fault and a stain rather than a part of life. And when their healing cures inevitably don’t work, they blame you, the patient.

Thank you for reading. Good golly the ADHD hyperfocus can be real sometimes.

What’s on my mind:

Bobtail cats

RFKs plan to send addicts, autistics, and people with ADHD to wellness farms

Troche-based medications

Tiger-shaped bath mats

Fever Tree Ginger Beer

Mt Sinai’s Center for Patients with Complex Conditions including Lyme Disease, ME/CFS, Dysautonomia, and Long Covid