Not easily shocked
As wrong and dangerous as I believe some attitudes and some treatments are when it comes to eating disorders, I’ve only once met someone who I felt was actually just in it for the money. This week I witnessed something that was so outrageous that it could not possibly have come from an honest or a well-meaning motive.
A friend sent me a link to a website that seemed, at first glance, to be a personal critique of Family-Based Treatment. That’s fine. Minds differ.
But the site purported to be the opinions of a well-known, a VERY well-known, person in the field. This is a person whose opinions on FBT have been — at best — cautious. I was quite familiar with that author’s writing and critique. I have debated with this person in private and in public over many years. We agree on very little.
There was something weird about the site, though. There were grammatical and spelling errors. The information was only citing old papers. It was oddly unacademic for someone known for their editorial skills and research. The only goal of the site seemed to be to cast doubt, not to point to alternatives. There was no contact information. And, another friend pointed out, the source code for the site included copyright by a large residential treatment chain.
I couldn’t understand why this person would participate in such a deliberately trolling and unsophisticated site, and do so on behalf of a corporation. My advocacy style is direct: I emailed the person whose name was on the site. Their immediate answer: “I have no idea what you are referring to.” And they didn’t.
Someone had hijacked their words and created a whole fake site filled with false, misleading, and out of context advice for parents to understand FBT.
Debate is healthy
Listen, I know that a lot of people still fear or are offended by FBT and the idea of any manualized treatment. There are people who hate it, and distrust anyone who doesn’t. I know the resistance to empowering and trusting parents is still there, and that therapists do not like being told to choose treatments based on research and statistics. There’s plenty of downsides to point to: FBT requires a lot of the therapist, and the family. It’s hard. It requires excellent clinical training and skills, including knowing when to use it and when to use other tools. It is not a magic cure or the right choice for everyone everywhere. It’s just a tool. One I think those treating EDs ought to be familiar with, but remains hard to find.
But I didn’t even imagine this: that a very large US provider of eating disorder treatment would be so dishonest as to create a site that steals the identity of an actual eating disorder professional and use it to lie to families anonymously. Their name wasn’t on it, and it didn’t link to them, but someone left the owner’s name in the code and when the ED professional named on the site had lawyers call the corporate offices of the clinic chain they took the site down within a few hours.
Leaving no doubt who created it, and showing that they knew it was there.
A deliberate campaign
Why create a site to disparage and cast doubt on an outpatient treatment approach? Why create a site that does not even bring business to the chain?
I think I know. I think parents and therapists are starting to ask questions about FBT too often. FBT doesn’t fit into the residential model: it centers the family and not the patient, it empowers parents to do the work at home, it is agnostic on cause and considers food as medicine. It keeps kids at home, and makes parents into trusted and empowered members of the treatment team. It seems to improve the rather dismal rates of recovery for these dangerous disorders over residential care, on average. It cares for the patient longer than residential can. It costs a fraction of residential care and keeps the patient at home among family and familiar things, in school and using recovery skills in the real world.
FBT isn’t widely available, so it is hardly a threat to these centers. Parents in the US rarely hear about FBT early in the diagnosis, and certified providers are few and literally far between. Despite being referred to as the first line of treatment as far as the research, because eating disorder treatment is unregulated in the US, there are no treatment standards to guide decision-making or matching to patient needs. It’s mostly about marketing. Profit margins are tight, and competition between centers is intense. FBT must be rattling someone, though, and I’m guessing it is these pesky questions.
I think a site like the one I am talking about was for responding to parents who have a lot of questions. I think it was to redirect newer clinicians with questions. It wasn’t to promote the chain’s clinics or even an honest critique of FBT. It hijacked an unwilling and unknowing person’s identity and didn’t reveal its ownership. The only purpose was to push back on a perceived threat to business. It was cowardly and craven. It was up
for a year, since 2016, I understand. I don’t know if any parents decided to abandon FBT as a result. I don’t know if it led some families to residential or to non-FBT outpatient care. I do know that the person and the company who created the site didn’t care about truth or science or families.
It was a fake site meant to mislead. So now I, after 15 years of ED advocacy in which I’ve been reliably angry and critical and impatient, but rarely surprised, feel shocked.
What does it mean?
And worried. How many of this kind of site are out there? How much of this kind of cowardly and cynical marketing goes on?
I don’t know if this very large ED treatment chain will be held accountable, or if we the public will ever be privy to the details. I don’t know if we will get answers on why this happened and who knew about it. There is no regulating body to complain to. I highly doubt this chain will publicly admit what they did, nor will others call them out on this. I’d like to be proved wrong on that, but I won’t hold my breath. There’s a lot of money at stake. And reputations.
The person whose identity was used for the site didn’t deserve to have this done to their name and reputation, which is why I am not repeating their name. The corporation that did it does not deserve to have their name kept secret, but I am not repeating it because people who would do this would only benefit from the publicity.
Those who continue to irrationally fear FBT will only like that chain more for waving a flag of doubt over ideas that were no threat.
I share this story publicly for two reasons. One is to marvel at just how threatening some people still find some pretty simple ideas: include the whole family, be agnostic on cause, food is medicine, train clinicians in evidence-based treatment approaches. Those are just common sense at this point, and don’t need defending.
The other reason is this: we’re watching. And we care. Parents are increasingly doing our homework, communicating with one another and with trusted clinicians and thought leaders. We are international, we are intelligent, and we are taking care of one another. Cowardly and manipulative media attempts to obscure information are not going to stop the drive for evidence-based treatment and treatment planning. It’s not about FBT or not FBT: just one tool in the toolbox. It’s about parental choice and informed decision-making for families and policy-makers. based on real inquiry, not lies.
This cowardly attempt to manipulate won’t stop me, certainly. But it makes me sad. Really sad.