Laura Collins Lyster-Mensh is a fierce activist as well as the mother of a daughter who once had an eating disorder. Even though her child has overcome her anorexia nervosa, Lyster-Mensh is still offering up her opinions on charities and organizations that support people with anorexia and other eating disorders.
Meet Kristina Saffran from Project Heal and learn about the Done With Dieting movement and why Weight Watcher's "free" program for teens is exploding heads around the world. Show notes at http://circummensam.com
I know, I KNOW. I was one of the ones who worked VERY HARD to spread the term "Maudsley Approach" to describe what is now usually called Family-Based Treatment for eating disorders. There was a reason for that, which I'll describe below, but first I want to offer this New Year's Resolution:
2018 Resolution: STOP SAYING MAUDSLEY.
I do not expect everyone to agree with me. I do know that what I'm saying will annoy, piss off, and be misunderstood by some people.
Me at THE Maudsley
But when language has grown fuzzy, muddled, and starts to mean different things to people that they then repeat, we sometimes have to set it aside. One term can't mean so many things and be useful.
I've been on a mission in the past year or so to ask people to describe what they mean by "Maudsley" and the range of answers indicates it has little communication value. You can find any number of people who will give you these answers:
The Maudsley Approach is Family-Based Treatment
The Maudsley Approach is when parents feed their kids at home
Parents do the Maudsley Method using an online forum
Maudsley is also called MANTRA
The Maudsley Approach is the Maudsley Method
The Maudsley Approach is what families in the UK get
Maudsley is the use of animal analogies to help parents learn how to manage their children's ED
Maudsley just means feeding patients
The Maudsley Approach is a self-help treatment
Maudsley is a motivational interviewing approach
The Maudsley Approach is offered at the Maudsley Hospital
Maudsley is required now for US patients
Force-feeding at home is part of the Maudsley Approach
The New Maudsley Method is an updated version of the Maudsley Approach
Maudsley is the only treatment that works
Maudsley is for children with anorexia nervosa only
Maudsley is a hospital in London
Only the last thing on that list is true.
I hear myths about "Maudsley" all the time. I collect them.
Here's how the term got associated with such a long list of mutually exclusive ideas. It was not because people AT the Maudsley hospital called manualized Family-Based Treatment: "The Maudsley Approach," in fact we have all been told that this is not a term enjoyed by the wonderful group of eating disorder specialists with offices at the historic Maudsley Hospital. It is a not a term that Drs. Lock and le Grange, who have co-written most of the literature and done most of the training for FBT, offered themselves. No one knows exactly how it happened, but the term got attached to the method by Australians and then parents who were referring to where the original methods that led to the manualized FBT came from.
I had a specific reason for using the term "Maudsley," myself, when I started writing about it (my first book), and collaborated with others to create the website Maudsley Parents. It was Google. Back in 2002, when our family fell down the rabbit hole into this world, there was no way to find or to lead parents to information about FBT. In fact, Googling "Family-Based Treatment" yielded only references to traditional Family Therapy, which at the time was focused on fixing broken families thought to cause eating disorders. A parent seeking information about what treatments worked best would be flooded with paid ads from treatment clinics who even now do not offer anything resembling a family-based or even family-friendly treatment. At the time, a parent seeking help for a loved one's eating disorder would not be told there was a method opposite to what they were being offered, one that both included and coached them, one that had a much higher chance of being successful. I was one of those parents.
But "Maudsley" was Googleable. It brought up references to FBT, only a few newspaper mentions, but for the parents we could pass a note to or reach to tell them the word, it led them to other parents, to a growing list of references in journals, and eventually to books on the topic. Using the term Maudsley allowed us to share, build, and connect.
But then, inevitably, the use got fuzzy. And "FBT" became Googleable.
Meanwhile, treatment providers skeptical about an approach that did not depend on causation myths, abuse suspicion, and psychodynamics caused backlash. Confusion about treatment that did not address commonly assumed "root causes" was considered irresponsible. Offense at a treatment that focused first on food, and trusted families, was routine.
Parents, too, misunderstood. Many spread the word on FBT as if parents did it on their own, not guided by a therapist. Parents, focused on the thing we can do, took up refeeding as if it was the only relevant part of FBT, and started to confuse what they were doing with FBT.
Innovators in the field began taking elements of FBT and adding it to what they provided, and called their hybrid approaches "Maudsley," causing confusion about what the research had established.
Other treatments, and help for families, started using variants of the term. A "New Maudsley Approach" was published that while it shared a non-blaming stance was for families with adult sufferers and a self-help, not a therapeutic approach. The hospital's name was used to describe a number of ideas developed there. Leading hospitals started offering FBT elements in their overall treatment. And one ED program had been around and using the term Family Based Treatment for their unique approach even before FBT was manualized.
What a mess!
I see people discussing FBT and other family-centered ideas every day, and tend to offend people when I say "what you are describing is not FBT." I know people find it obnoxious, and think that I'm saying what they are describing is inferior, wrong, or that I'm some kind of FBT-compliance nut. But my real reason for that statement is to prevent:
People criticizing FBT for things it is not
People praising FBT for things it is not
People thinking they are getting, and failing at, FBT when they have not yet had it available
People using FBT as marketing without actually being trained or interested in it
FBT becoming a generic term for anything that involves families
Families "doing Maudsley" at home thinking they are using an evidence-based model
Innovations on FBT, which are the next and important step, not being researched and examined clearly
Endless arguing because people aren't talking about the same things
I honestly don't care if a clinician or a family chooses FBT or not. It's just one manualized approach and there need to be many options. I actually have some real problems with the method, not that anyone's asked me. I just think families and payers and policy-makers need to have a clear picture of what they are pursuing, and what the evidence is that indicates its chances of success in what situations. We're stuck, as far as policy, often because of misunderstandings, not genuine differences.
There is a serious policy debate around all the issues connected to FBT. Let's commit to those debates, which influence training and funding and consumer choices and outcomes, using the terms clearly.
I no longer use the term Maudsley to describe FBT. I challenge you to join me!
Episode 25: Meet Jackie, A Young Woman With A Plan
It’s episode 25 and for a holiday treat I am going to share a mother daughter duo, Jackie who is 16 and her mother Tana. Go to the show notes while you’re listening so you can see a picture of the Goal Card that they created as a tool to keep focused on her goals in life. You’ll also hear about other tools their family find helpful, about a possibly magical therapist, and just get to enjoy their family’s insights.
I meet a lot of families, and learn something from every one. I am so grateful. Meet the Reagans, Jackie and Tana.
UCSF has a new treatment study examining the effectiveness of adaptive FBT for adolescent anorexia nervosa (ages 12-18 inclusive). For more information, contact Simar Singh at 415.476.0622, or firstname.lastname@example.org. You can also visit http://eatingdisorderprogram.ucsf.edu, or see flyer below.
Brief (5-minute) survey to ask about current/recent treatment experiences and their helpfulness.
This study is about the treatment of eating disorders and the care that individuals with eating disorders are receiving currently or in the past. To help gain further insights into this area you will be asked to answer several questions. Your participation is voluntary and is anonymous. The data you will provide will be recorded anonymously and your participation will be held in the strictest confidence.
Your participation in this study is on a voluntary basis, and you may refuse to participate at any time without consequence or prejudice. Any questions about your rights as a research subject may be directed to Dr. Ashley Higgins, email@example.com.
The Nine Truths About Eating Disorders was historic consensus in the field. Now, a group of researchers at UNC have published the science behind the truths, open access. Meet Katherine Schaumberg, the lead author. http://circummensam.com
Tickled to share the news that TODAY is the day that the Newman's Own Challenge begins and we're going to need every one of you to help. We know money is tight, but F.E.A.S.T. does not take donations or sponsorships from treatment providers (which is usually how ED advocacy is funded) because we never want parents to feel marketed to or influenced by corporate concerns.
That means we need donations from families just like you, and me, to keep this site and our services going. Every little bit counts. And this Challenge puts us into eligibility for prizes from Newman's Own, so we need your boosts to help us WIN. And we want, in this holiday season, for you to reach out not just to other parents with the same issues but tell friends and family and colleagues and community members.
You can donate, and you can create a team to gather donations, and you can spread the word on social media like Facebook and Twitter.
This is how WE help YOU, my friends.
And please, please, check out the videos of parents around the world just like you about F.E.A.S.T. being there for them in hard times. Including me!
Laura introduces you to the person whose name is invoked daily as we search for facts, numbers, and references: Millie Plotkin, the informationist behind the Eating Recovery Foundation's Information Gateway. Show notes at http:circummensam.com