Laura Collins Lyster-Mensh's Blog, page 2
February 9, 2018
Croatian Parent Activist Wears Eating Disorder Cause on His Chest
Meet Hrvoje Rendovic, a parent activist for eating disorder awareness in Croatia. Show notes at http://www.circummensam.com
January 21, 2018
Why I no longer use the term "Maudsley Approach"
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 MaudsleyBut 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 TreatmentThe Maudsley Approach is when parents feed their kids at homeParents do the Maudsley Method using an online forumMaudsley is also called MANTRAThe Maudsley Approach is the Maudsley MethodThe Maudsley Approach is what families in the UK getMaudsley is the use of animal analogies to help parents learn how to manage their children's ED Maudsley just means feeding patientsThe Maudsley Approach is a self-help treatmentMaudsley is a motivational interviewing approachThe Maudsley Approach is offered at the Maudsley HospitalMaudsley is required now for US patientsForce-feeding at home is part of the Maudsley ApproachThe New Maudsley Method is an updated version of the Maudsley ApproachMaudsley is the only treatment that worksMaudsley is for children with anorexia nervosa onlyMaudsley is a hospital in LondonOnly the last thing on that list is true.
I hear myths about "Maudsley" all the time. I collect them.
So how DID 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 seems to agree on exactly how it happened, but the term got attached to the method by some 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 notPeople praising FBT for things it is notPeople thinking they are getting, and failing at, FBT when they have not yet had it availablePeople using FBT as marketing without actually being trained or interested in itFBT becoming a generic term for anything that involves familiesFamilies "doing Maudsley" at home thinking they are using an evidence-based modelInnovations on FBT, which are the next and important step, not being researched and examined clearlyEndless arguing because people aren't talking about the same thingsI 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!
************************************
If you are interested, I did an interview for NEW PLATES podcast with the authors of the FBT manuals and Help Your Teenager Beat An Eating Disorder, the parent guide to FBT. Listen here:
* A side note on my book, Eating With Your Anorexic. One, the title is meant as a joke, a play on how-to books that simplify very complicated processes. Two, I fought with the publisher, McGraw-Hill, on putting "Maudsley Approach" on the cover, but I was a small-town columnist and it was my first book and I didn't have the power to veto it. It is no longer the subtitle on the 2nd edition.
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 MaudsleyBut 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 TreatmentThe Maudsley Approach is when parents feed their kids at homeParents do the Maudsley Method using an online forumMaudsley is also called MANTRAThe Maudsley Approach is the Maudsley MethodThe Maudsley Approach is what families in the UK getMaudsley is the use of animal analogies to help parents learn how to manage their children's ED Maudsley just means feeding patientsThe Maudsley Approach is a self-help treatmentMaudsley is a motivational interviewing approachThe Maudsley Approach is offered at the Maudsley HospitalMaudsley is required now for US patientsForce-feeding at home is part of the Maudsley ApproachThe New Maudsley Method is an updated version of the Maudsley ApproachMaudsley is the only treatment that worksMaudsley is for children with anorexia nervosa onlyMaudsley is a hospital in LondonOnly the last thing on that list is true.
I hear myths about "Maudsley" all the time. I collect them.
So how DID 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 seems to agree on exactly how it happened, but the term got attached to the method by some 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 notPeople praising FBT for things it is notPeople thinking they are getting, and failing at, FBT when they have not yet had it availablePeople using FBT as marketing without actually being trained or interested in itFBT becoming a generic term for anything that involves familiesFamilies "doing Maudsley" at home thinking they are using an evidence-based modelInnovations on FBT, which are the next and important step, not being researched and examined clearlyEndless arguing because people aren't talking about the same thingsI 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!
************************************
If you are interested, I did an interview for NEW PLATES podcast with the authors of the FBT manuals and Help Your Teenager Beat An Eating Disorder, the parent guide to FBT. Listen here:
* A side note on my book, Eating With Your Anorexic. One, the title is meant as a joke, a play on how-to books that simplify very complicated processes. Two, I fought with the publisher, McGraw-Hill, on putting "Maudsley Approach" on the cover, but I was a small-town columnist and it was my first book and I didn't have the power to veto it. It is no longer the subtitle on the 2nd edition.
December 22, 2017
Episode 25: Meet Jackie, A Young Woman With A Plan
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.
Mentioned:
US News and World Report: What Not To Say To Someone With An Eating Disorder
Guisinger article by Dr. Sarah Ravin
Vistaprint “Vertical Signature business cards”
Life Without Ed, by Jenni Schaefer
December 16, 2017
Study on adaptive FBT for adolescent anorexia ages 12-18 at UCSF looking for families
posted by request:
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 simar.singh@ucsf.edu. You can also visit http://eatingdisorderprogram.ucsf.edu, or see flyer below.
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 simar.singh@ucsf.edu. You can also visit http://eatingdisorderprogram.ucsf.edu, or see flyer below.
Researcher looking for patient experiences of seeking eating disorder care
posted by request:
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, ahiggins@immaculata.edu.
If you wish to participate, please see the following link: https://www.surveymonkey.com/r/CWFX3N7
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, ahiggins@immaculata.edu.
If you wish to participate, please see the following link: https://www.surveymonkey.com/r/CWFX3N7
December 6, 2017
24: Nine Truths About Eating Disorders and the Supporting Facts
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
November 21, 2017
Join families around the world for a friendly competition to help fund our support for families facing eating disorders!!
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!
https://www.crowdrise.com/o/en/campaign/families-empowered-and-supporting-treatment-of-eating-disorders/feast-ed![[59fe77271f4a2_900x600]](https://i.gr-assets.com/images/S/compressed.photo.goodreads.com/hostedimages/1511575643i/24526394._SX540_.png)
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!
https://www.crowdrise.com/o/en/campaign/families-empowered-and-supporting-treatment-of-eating-disorders/feast-ed
![[59fe77271f4a2_900x600]](https://cdn.crowdrise.com/umedia/1509508800/59fe77271f4a2_900x600.png)
October 30, 2017
Episode 23: Meet the eating disorders world's informationist, Millie Plotkin
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
October 21, 2017
Episode 22 - Tabitha Farrar on Building Family Support When Yours Can't
Laura introduces you to Tabitha Farrar, recovery coach, podcaster and community builder. Show notes at http://circummensam.com
September 24, 2017
Episode 21: State Not Weight with Dr. Rebecka Peebles
Meet Dr. Rebecka Peebles from the Eating Disorder Assessment and Treatment Program at Children's Hospital of Philadelphia. Full show notes at http:www.circummensam.com
Laura Collins Lyster-Mensh's Blog
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