from Laura Collins Lyster-Mensh, F.E.A.S.T. Executive Director
Back in September, I posted about an eating disorder clinic chain that had published a “spoof site” about Family-Based Treatment. I did not name the chain nor did I hold out much hope that the matter would be addressed. Today I am happy to report the details, and some optimism.
I’m optimistic because there WAS a response, and because — though slow to be completed and not completely satisfying — it is leading to some actual progress.
FBT Info Website
First, the details. The site was called “fbtinfo.com” and it first went online in 2016. Although it is no longer up at that address, it can be seen in its entirety and with all versions over time at the “Wayback Machine” which is an archive of all web pages. If you didn’t know that anything that Google finds it can save, you know now.
For those unfamiliar with the issues here, the site may seem benign. It doesn’t criticize anyone, or openly disparage FBT, nor does it try to sell any products. Its only purpose seems to have been to undermine confidence and raise doubts in the minds of parents searching for treatment, and comfort providers looking for reasons to distrust Family-Based Treatment. Although it did not point visitors to the owner’s website or services, the overall message of the site was that FBT was risky and unfounded. The site purported to be the words of a prominent eating disorder researcher and clinic director, using his words out of context, and in various versions of the page was written as if the site was authored and authorized by Dr. Michael Strober from the UCLA Eating Disorders Center.
When I and a few others started asking questions about this site, we wondered why Dr. Strober was involved. I approached him directly and he turned out to be unaware of the site. I was appalled, but I did not feel it had anything to do with me or with F.E.A.S.T. When a while later I was approached by representatives of the Residential Eating Disorders Consortium (REDC), a trade organization of residential treatment centers, I showed them what anyone could see from looking at the source code and copyright: that the site was owned by the Center for Discovery treatment clinic chain. I told them that I had shared that with Dr. Strober personally and that he had approached Center For Discovery who had taken the site down that same day.
The REDC representatives then did something that shocked me: they said they were opening an ethics investigation. Instead of circling the wagons or dismissing the issue they wanted to understand it and hold the site’s owners responsible. They said this kind of behavior — a misleading site and using a real person’s reputation against his will — was unacceptable. Further, they agreed that this kind of critique and fear of FBT was not something REDC would tolerate.
They asked me to be the complainant on the ethics examination. I said no, as I was not the injured party, and that I was, to be frank, afraid of retribution. But as it became clear that I was one of very few in a position to do it and that it might not happen without my participation, I agreed as long as they agree to my two requests. One was that I would have access to the report when it was done. The other was that I could share it with my community. REDC has followed through on both requests.
REDC Ethics Inquiry
I want to say now that I truly see this site as an amateurish and foolish ploy, and that I believe what I was told: that the site was the work of a person, not a strategy by the organization. But I also want to say that these sentiments about FBT, about families and parents, and about evidence-based treatment, are consistent with many treatment providers’ approaches to families affected by eating disorders even now, in 2020. There is a genuine and emotive rift between approaches to family inclusion, and the resistance to what FBT seems to represent, to some, is strong and deep. I wonder how many people knew about it and allowed it to remain available, and if it troubled anyone. That is the corrosive distrust that lingers: who cared that families were being misled? How many families did this harm or confuse? It is hard for me to believe this site would not have accidentally remained available to the public and easily found by Google if being anti-FBT was bad for business. Once discovered among their holdings, it should have been publicly disavowed by the owners. Not to do so deepens my concern that being anti-FBT is not seen as that much of a negative.
Based on 15 years of conversations with eating disorder treatment providers and clinics, including Center for Discovery, an anti-FBT attitude is not unusual, and understanding of the actual principles and techniques of FBT remains low. The truth is that the residential treatment world remains in an ideological framework that is incongruent with FBT in most cases. It doesn’t have to be: there is nothing about FBT that can’t be aligned with all levels of care and vice versa. Food is still medicine in all settings. Parents don’t cause eating disorders. Those with eating disorders deserve to be treated under the same framework wherever they are sleeping at whatever stage. This controversy has made that divide quite clear, and I’m glad.
The Results
I am relieved and impressed that REDC’s response to this issue was to act very quickly to try to resolve it. Although it took a lot longer to resolve than it should have the investigation ended with a letter of acknowledgment by the Center for Discovery (below), but more importantly from REDC that this was unacceptable behavior in a field that has struggled with conflict or setting standards of practice.
Further, REDC recently approached me to initiate a discussion of how to resolve the ongoing issue of FBT being functionally incongruent with residential treatment. This needs to be faced and addressed because it serves patients and their families terribly. Families should not have to choose between treatment that includes them and trusts them as part of the team but only at home, or face the choice of treatment that operates under very different views of the family once the patient needs inpatient or residential care. We should all be able to agree that all care should be evidence-based and be able to trust and include families. All levels of care should be readily available as needed without shifting to a completely new view of the illness and families. This lack of common belief systems hurts and confuses families and the person they support.
I have been an outspoken critic of dependence on residential care not because it is inherently bad but because it operates under a parentectomy model in location and in ideology. This does not need to be true. There is genuine fear on the part of many who have devoted their careers to saving eating disorder sufferers from their families that FBT is some sort of threat to patients. In fact, residential care that excludes and distrusts families is a threat to patients.
It would be fitting, and about time, for us to stop seeing FBT as a threat to residential and to stop having residential be a threat to FBT.
Dr. Strober and I agree on very few things, ideologically. So the irony of being his defender against this spoof site escapes neither of us. But his words and reputation were hijacked in ways that are wrong and unfair to him. Whoever wrote this site was familiar with Dr. Strober’s work, as I am, but misunderstood it. Strober actually believes what he says, and engages in real and honest debate about it with people like me. He doesn’t hide behind the work of others nor does he hide his actual goals. He is not black and white in his thinking or trying to make a buck confusing vulnerable families. I value honest and sincere debate and do not want to “win” arguments over these important issues by tearing this person down.
If the result of this incident could be some courageous conversation and true progress, then we all “win” here. I’m here for that, and respect the REDC ethics committee for allowing it to begin.
Letter_of_Acknowledgement_from Center For Discovery
REDC_Special_Investigatory_Committee_Report
Thank you, Laura, for the vital role you played in this ethics inquiry and in making this conversation transparent and accessible to all.
I initially stumbled upon the FBT Info “spoof website” last year when I was looking online for information about FBT to pass along to a family that was trying to decide between residential treatment or FBT for their teenage daughter. I wanted them to have all of the information they needed to make an informed decision for their family. Needless to say, I did not pass along this particular website. If I had, it is likely that they would have chosen residential treatment instead!
The ideological divide between FBT and residential treatment is real, pervasive, and harmful to patients and families during their most vulnerable times. As an outpatient psychologist in private practice, I see many families for FBT who found me through their own online research, after being told by their child’s previous clinician that residential treatment was their only option. Most of these families were not previously informed that FBT existed, or if the parents discovered it on their own and brought it up to their previous clinician, they were told that FBT wouldn’t work for their child or their family. In my experience, FBT is effective for the majority of families that pursue it, even those who were previously told that residential treatment was the only option, or that FBT wasn’t the right treatment for their child.
The current landscape of eating disorder treatment in this country does create a stark divide between FBT and residential treatment. But it doesn’t need to be this way. The basic principles of FBT can be incorporated into any residential treatment program or PhP program. Families should have access to information about the various types of treatment options available so that they can make the best decisions for their loved one.
I look forward to more courageous conversation!
Thanks for sharing and taking the effort to work towards fixing and highlighting this issue. I’m glad REDC had a strong reaction. As a parent the frightening thing is that anyone would believe it is acceptable to mislead a parent in making treatment decisions for eating disorders. At least in my own experience the decision to send our daughter to a residential clinic was a life or death decision as a stepping point on the way home returning from a psychiatric stay at a Children’s hospital for self-harm. We had to decide whether we could risk monitoring for self-harm at home which is a nearly impossible place to make low risk. It is FEAST where I found the answer in my Google search for ‘lock box for knives’. With that kind of ethics to post a spoof site as a starting point in marketing you can imagine how inappropriate it should be construed by parents. I have no problem inherently with commercial clinics and residential clinics and am glad they are working towards better FBT integration. Ethics among providers is something we as parents use to build trust in a system where we already have little to trust given the uncertainty of the illnesses and the limitations of success rates even of the best treatment approaches. Hopefully the incident is isolated and won’t happen again. If not there are those of us parents who are happy to line up to intervene.
I find it fascinating. In terms of history, geography and economics the situation in the UK is somewhat different. Parents very rarely choose the type of treatment their child gets, somewhere is no incentive for providers to market their products to them, or to undermine what might be seen as competition. Underlying ideas a d assumptions about the illnesses, views on families etc though are just as split in as in the US
Good for you, Laura and well stated. And good for REDC.
Good work, Laura, I’m glad you did this.
In the UK, a family-based approach is now the standard, as required by the National Health Service (though how well it’s done varies). Also standard is to use hospital only when necessary.
From hearsay, psychiatric inpatient units have far fewer ED patients now than they used to as families are getting far better support to treat at home. I’m still worried that some of the private ones might have an incentive to keep youngsters longer than necessary. There’s an encouraging model, growing, to treat for just a week or two in a paediatric unit, get eating back on track while involving parents, and then treatment can resume more successfully at home.
I find it fascinating to compare the US and the UK parents I talk with. In the US, so many are very nervous about treating at home, even with a kid who is complying really nicely with meals. In the UK some parents have heard on the grapevine that inpatient units must be avoided at all costs, so they need a lot of good info to come to terms with the need for hospitalisation for their very-ill kid.
You and others here have made it clear that all levels of care have a place.
And that inpatient units can use all the best principles of family-based treatment. Some do.