AI slop has come for the chronic illness online community. Unsurprisingly, it’s derivative and easy to identify. What is surprising? It truly is stunning how quickly AI has wedged its way into chronic illness online spaces. These online communities to date have been meaningful and valuable. That is all changing, and not for the better.
I’m not the one to say, “AI is here now and we must adjust to it” because we actually don’t have to adjust to it if we don’t want to do so. Screw AI. The way data centers are ruining the planet, the exploitation it brings, and the reduction in workforce? The way AI slopaganda posts are turning people’s brains to mush? No, I’m not adjusting to that. Not now, not ever.
This is actually my second blog post on the topic. Linked here below is the first. In this post, I wrote about how being an author and scholar and literature PhD informs much of my attitude towards AI. Here, I’m focusing on what (the damage to communities and thought) and there, I focused on why (my experience and worldview). If you’re interested, do follow the link…
The title of this blog post makes it clear what I think about AI. To a point, it’s enough to simply declare that my website doesn’t peddle slopaganda. But I also want to share my thoughts about writing, being a writer, and my love for writing. I want this to be the post that makes my promise to you, dear reader, about who I am as a writer and practitioner of Chinese medicine. The conclusion of this essay (that I loathe AI and will never contaminate my writing with it) is already obvious. But my whys are worth reading, I think. They are heartfelt and true and shared in the hopes that you ponder your own whys and maybe feel some inspiration or solidarity.
—My Promise to You, Dear Reader: No AI Slop Here.
If you disagree? Well. At the very least, consider and be aware of the red flags I am about to discuss. In this post, I will focus on four primary areas: potentially incorrect information; the influencers and the Johnny-come-latelies; broken community bonds; and, finally, the matter of critical thinking. There are other directions and discussions I could have chosen, but for now, they are the pillars of what to consider. At least, I think so. And maybe I’ll persuade you and maybe I won’t, but at least you will leave this blog post with some food for thought.
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Potentially incorrect information
At this point, I do not think anyone views AI as infallible. At least, I hope not. But it’s easy to info dump in community spaces, thus posing a danger to people who may be desperately seeking remedy for their complex conditions. We’ve all seen incorrect and potentially dangerous information shared online and wondered who would believe it and be affected. And it is getting harder and harder to discern whether the information is correct. AI wants to do the thinking for both reader and “writer” of these posts. The language that AI uses is pernicious. It’s designed to hook a reader and make them feel special and validated. Its purpose it to make the reader think “I feel heard (or seen)” and to create sticky, artificial bonds between the “AI companion” and unsuspecting readers. This is not conducive to careful reading, is it?
The danger isn’t always immediate, either. Over time, these AI slop posts also affect critical thinking skills, a topic to which I will return at the end of this essay.
And what about the proliferation of AI “books”? The Author’s Guild, of which I am a member, wrote an article in 2024: “AI Is Driving a New Surge of Sham ‘Books’ on Amazon.” What they said was prescient and they have tried to fight for us authors. But I see it way too much in online spaces: someone (or a few people) pushing a certain book. I check it out and realize that (a) it’s independently published and (b) the author may refer to themselves as “Dr.” but they don’t have a website and there is no evidence as to what type of a doctor they are; it’s doubtful that the “author” is an MD or a PhD.
I’ve seen mods warn against these “books” but they are proliferating and they most certainly do not lack bots to push their agenda. This is a danger of AI and a very real threat to newly-diagnosed people or those who are looking for help to get a diagnosis. Either way, they may not know how to wade through the plethora of information now available online and via AI.
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Johnny-come-latelies
A Johnny-come-lately is someone who shows up late. And not just late. They also want to front like they’re experts. Basically, showing up at the last minute and trying to pretend like they know everything. And yes, there are quite a number of these in chronic illness online spaces. They’re just now hopping on the EDS bandwagon and acting as though they are experts in connective tissue disorder and the comorbid conditions, especially MCAS.
The only way they get away with this is via AI slop. You can know NOTHING about EDS but suddenly become an “expert” *cough* if you know how to feed a prompt and harvest a nice, long, wordy deluge of AI turgid prose that you can share (preferably with a cutesy nickname because you’re either a bot or you don’t want anyone to know who you are in case they get injured by your garbage). And there’s a lot of that now.
I’m not going to mention names, but I will offer a suggestion if you follow influencers. To wit: be sure to check just how long they’ve been influencing in EDS spaces, and do not forget to look at their credentials.
One, especially, has caught my attention and they constitute a great example. To wit: this influencer had a decent business in an adjacent pain-related condition and didn’t write about EDS until recently. Now, though, they regularly pump out lengthy, turgid screeds and have positioned themselves as THEE sole authority on EDS. This is a certified fitness professional, not a licensed medical care provider. However, a quick perusal of the titles of their voluminous AI slop articles is revealing. “Everything You Need To Know About [fill in the blank]” is a favorite title for this individual. I find this interesting, considering that there is a lot to know about EDS and nobody, not your friendly AI-driven influencer nor your most-trusted scientific researcher, knows “everything” that needs to be known.
And to cap it off? This character went after Debra Cusack of the Cusack protocol by name. They specifically cited her protocol as being an example of untrustworthy online advice. Huh. Meantime, the EDS Clinic offers a professional assessment of this regimen that includes discussion of what it is, why some aspects of it make sense, and what patients might want to consider if they do decide to rely on it. Their conclusion, after this measured and respectful discussion of what it is and why it may work for some, is that, and I quote:
“While anecdotal reports suggest positive outcomes for some individuals following the Cusack Protocol, it is important to note that the protocol lacks clinical validation through large-scale studies. As with any supplement regimen, potential interactions with medications or other treatments should be carefully considered. The protocol is not intended as a cure for EDS but rather as a long-term management strategy. Users are advised to consult with healthcare professionals before starting the regimen to ensure it aligns with their individual health needs and circumstances.”
–The Cusack Protocol
Personally, I am not a fan of the Cusack protocol and I’ve never had a patient try it and find success. But Debra Cusack has been around for a long time, there are people who do well on her protocol, and I completely agree with the EDS Clinic in their conclusions. I really did not appreciate the certified fitness professional and Johnny-come-lately name-checking her like this.
AI makes people bold and wordy and prolific, what can I say?
And if AI slop is allowed to create the narratives surrounding “everything we need to know about EDS” then we’ve got problems. AI isn’t the final words on EDS. Everyone’s experience is different, and what sounds right to you might be entirely wrong, as per section one of this essay, but if you lack the knowledge and discernment skills you will have no way to know until, maybe, you’ve damaged yourself by following their dicta.
TL/DR: If the new influencer in town has nothing to offer but lengthy, canned posts on social media or novella-length blog posts, then it’s important to check to see how long they’ve been around. You don’t become an EDS expert overnight, trust me. It takes time and experience.
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Community is broken when the loudest voices are AI slop
I started joining EDS and MCAS groups over ten years ago. What I found was a genuine sense of community, a great resource for learning, and a vibrant space for creating cultural identities. Real people would ask real questions and real people would give answers. I learned a LOT over the years.
For me, Twitter was a real favorite. I “met” a number of bloggers and community leaders and regular folks who live with EDS, MCAS, and/or POTS. Now, of course, Twitter is no longer and I did mourn that loss. I was also, for a long time, in the EDS Society groups but I had to leave those for a different reason. They are a wonderful resource and I highly recommend them, but they also gatekeep pretty hard. When a physical therapist had something to say about dry needling it was fine; if ever I commented about Chinese medicine, a mod would take my post or reply down. (I will say this though: I am willing to bet that they moderate a lot of the AI slop off their pages, so…). Now, though, having left the EDS Society options, I am in less-regulated groups as a result and oh, the AI contamination…!
It feels like the loss of Twitter all over again. Most posters aren’t real and many who reply give the same AI slop and conclude with a recommendation for whatever AI slop “book” they are trying to hype.
The ones that also really bug me are the ones that post a one-line exhortation like “share your symptoms” or “tell me what your comorbid conditions are” with no context. It’s just: give me your information. And they get replies. People (I’m sure some of them are bots) helpfully share their most intimate details to these posts. One thing is when a person writes, “I am suffering from [name the condition] and my symptoms are [name them]. Can anyone else share their experience? Is what I’m dealing with normal?” Another thing is simply: “Tell me your symptoms.”
I guess what they are doing is farming content. Whatever it is, it’s bad faith and it contributes to the deterioration of communities that should be a resource, not a data-mining cesspit.
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Critical thinking takes practice
As a former professor and life-long scholar, all I can say is this: critical thinking is a skill that requires practice.
AI slop robs you of your opportunity to learn how to critically think.
This is serious business. Gaslighting and medical abuse are very real issues in the chronic illness community. How can you defend yourself if you only know AI slop? Being able to navigate the increasingly abusive biomedical industrial complex requires self-awareness, the ability to set and maintain boundaries, and the capacity to acquire at least a minimal base knowledge of one’s complex chronic illness. Being able to think things out in a logical way is a super-power. That takes practice.
And yes, I’ve read the posts by people who say that nobody could figure out their illness until they put it into Chat GPT and got a coherent narrative. Then they took it to their doctor and–miracle of MIRACLES!–the doctor suddenly, surprisingly, and finally listened and now all things are wonderful. Ok, sure. But that only takes you so far, and you still can’t brandish your printout at the MD and expect it to work, like garlic against a vampire, each and every time. Truly. The capacity for critical thinking is a survival skill; becoming reliant on AI (wait until they start charging for it) is not a wise tactic.
Human nature is such that we find what we’re looking for, and if a person filters what they know and are looking for through an AI lens? Again, AI tells people what they want to hear. AI is that sticky, unctuous “companion” who “gets you” and tries to pump you up and make you feel special, seen, and heard. And that’s fine for addressing loneliness (I guess) but it’s not healthy for people who need to be able to think.
EDS is complicated, not all doctors know enough about it, and each one of us has our own unique presentation. We all know this. We also need to keep in mind the need to be able critically think and to advocate on our own behalf.
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What can you do?
It’s funny, but I was reviewing my final draft of this blog post when Pope Leo sent out his encyclical, Magnifica humanitas: On Safeguarding the Human Person in the Time of Artificial Intelligence. In it, he had words to say about AI. He focused mainly on financial and political disparity, loss of work, war, and issues related to environmental damage. The big picture, rather than my small corner of concern. I am no longer Catholic but I have a Mediterranean’s cultural connection with the church. My santo patrón will be my imaginary best friend for life no matter what; this I know is true. However, I am do not practice and I generally ignore most popes. Not Pope Leo, though. He is a good guy, and sincere, I think. I also happen to agree with him whole-heartedly when he critiques AI in this fashion.
Even funnier? I noticed an alert on my WordPress account. Apparently, I just now “unlocked an achievement.” The achievement? As the notice said: “Perfectionist: Edit a single post over and over again. It’s still not right, is it?” I do edit my blog posts quite a bit before sending them out into the world but it felt like the universe wanted to give me a little prize right now, just because.
Hm.
And realistically, I doubt that any of us can completely eradicate AI. But that does not mean we are helpless.
At least, let’s start by being wise observers of it in community spaces. If a poster only contributes long-winded and obvious AI slop, maybe they need to go start an “AI For Cool People” group and see if they get any actual humans. The rest of us need to ignore them and not engage. When someone demands that you tell them all your health information, don’t obey. If you want to learn more about your condition, the EDS Society (google it; I don’t feel like linking them) actually is a great resource. You may want to work with a health or edu-coach (always check the credentials though). And if you’re looking for books…well, that’s a whole new blog post. Just: at least check the credentials.
Being aware, informed, and intentional will get you far. People who want to learn about EDS and who appreciate our communities have recourse. Think. Read. Communicate with real people. Learn. Grow. Expand.
You can do it…and yes, you are worth it!
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Dr. Paula Bruno, Ph.D., L.Ac., is a licensed acupuncturist and herbalist, an AOBTA-CP traditional Chinese bodywork therapist, an author, and a health coach. She maintains an active and growing practice at Two Hearts Wellness, her Austin, TX office. Dr. Bruno is also available for distance appointments for wellness consultation or coaching.
In her first career, she was a Spanish professor.
Dr. Bruno’s specialties as a Chinese medicine practitioner include: • Musculoskeletal health (acute or chronic pain relief; Ehlers Danlos syndrome & hypermobility support) • Digestive support, gut health, and weight loss • Aesthetic treatment, including scar revision • Men’s health • General preventative care and wellness support for all persons.
She is the author of Chinese Medicine and the Management of Hypermobile Ehlers Danlos Syndrome: A Practitioner’s Guide.
When you are ready to discover what traditional medicine plus a vibrant and engaged approach to holistic health can do for you, either contact Dr. Bruno or book an appointment online.
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Note: Material on this web site site is not intended to diagnose, prevent, treat, or cure any disease, illness, or ailment. A Chinese medicine practitioner in Texas identifies syndrome patterns but does not diagnose illness. Material on this web site does not purport to identify syndrome patterns.
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Holistic Health and hEDS 