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F.E.A.S.T. Searches for New Executive Director
An Interview with Laura Collins
Laura Collins Lyster-Mensh, our beloved Executive Director and the Founder of F.E.A.S.T. and the Around the Dinner Table Forum (ATDT), has shared with us that she is ready to hand over the leadership of F.E.A.S.T. to a new volunteer Executive Director (see story on our search process for a new leader in this issue). Laura will be moving into a new role leading our policy efforts. The Board of Directors
has been preparing for this transition and recently our Board Chair, Sarah Krevans, had a chance to interview Laura about her incredible accomplishments and contributions.
Sarah: Laura, tell us how you got started as an advocate--was ATDT and F.E.A.S.T. your first advocacy effort?
Laura: My parents raised me with a strong sense of social responsibility. I did my share of sit-ins and volunteering for causes all my life. But I have never been quite so moved to action as when I realized that families all over the world were suffering -- and patients dying -- for lack of good information about treatment of eating disorders. At first I thought writing about it would be enough, but I came to see that we needed a community, and organization, to truly bring about change.
Sarah: We know you are a writer and a journalist--was it hard to write about something as personal as your daughter's illness in your book "Eating
with Your Anorexic"
Laura: Deciding to be public in this way has to be very carefully considered. Once you put your story out there to strangers you cannot take it back or control it. A writer is making decisions not just for herself but for family, friends, and the community. I don't regret it, but it has been a challenge.
Sarah: What gave you the idea to start an on-line forum to support otherparents? Were you surprised at its growth and the depth of response?
Laura: When our daughter was ill I had two strong desires: to get information and hope. The only online forum I could find had too little of both. Starting a forum for these new ideas and attitudes about parents felt like giving a gift to those coming after us. At first it was just a message or two a week -- the growth has been astounding to me, and humbling. The moderator team evolved and developed over time and weathered many storms: fights, ideological rifts, management changes, and even deaths. But it has also provided life-altering support and information to families who have no other such access.
I get letters and emails every week thanking us for what we do. They often have photos attached -- of graduations and weddings and even newborn babies. It is an indescribable feeling to know that we've played a role in helping a family get there. These families are amazing!
Sarah: You have grown F.E.A.S.T. from an idea to an international non-profit with a distinguished group of advisors, nearly 2,000 members and a broad impact on families. Often parents comment that they feel the Forum and F.E.A.S.T. helped to save their child's life. What work do you think is left un-done?
Laura: Left undone? Well, I've got a long list! I'd like to see a worldwide network of families on the ground to support families at first diagnosis with good local information and a strong sense of supported optimism. I also feel we have not been effective at pressing the professional community to establish standards and accountability around eating disorder treatment. Finally, I'd like F.E.A.S.T. to be obsolete. If the professional world, the advocacy world, the public, and the media adopted our principles as normal and expected then we could all work more effectively together. As long as our principles are controversial, we're still needed.
Sarah: If you had to give one piece of advice to whoever succeeds you as Executive Director what would it be?
Laura: Kindness. The most effective thing I try to do daily is remain kind despite seeing families suffering so needlessly, patients going without the care they need, and harmful myths that still have such power. This job brings pressure from all sides on very emotional issues. Being kind is difficult but equally important with allies and foes.
Sarah: You have assembled an Advisory Board of some of the most respected clinicians and researchers in the field. What would you like to say to our Advisory Board besides a giant Thank You?
Laura: Our Advisors are essential to our mission. They lend us their wisdom, their perspectives, and their reputations. We don't take any of that for granted. Our organization has taken unpopular stands and challenged some deeply held beliefs about causation and effective treatment: our Advisors show a extraordinary courage and generosity by supporting us. They are also the people that give me the most hope for the future of the field.
Sarah: One of the things that makes F.E.A.S.T. unusual is that we are an all volunteer organization supported entirely by individual donations. Why should parents or others reading this article get involved as volunteers or donors to F.E.A.S.T.?
Laura: None of this happens without other parents stepping up to help, and it can be very healing to pay it forward a bit. We are still quite small and there is an enormous unmet need. Each volunteer and every donation have a great impact.
Sarah: You are moving into a new role as volunteer Policy Director; tell us what you hope to accomplish?
Laura: This is a good time for me to step back and take more advisory role. We have had an impact and we have momentum: I love the F.E.A.S.T. community and look forward to supporting and cheering for the next era of leadership while continuing to provide advice on policy and strategic direction
Sarah: Laura, I know I speak of our entire Board, for all of the thousands of families you have already helped and for the ones who will be helped in the future when I say thank you: thank you for your vision, your compassion, your courage and your leadership. We are very grateful.
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"...my daughter returned from her nine-day school trip happy and well. No anorexic symptoms at all. She says that she ate easily, and had no problem helping herself from the buffet. The teacher who was keeping an eye on her tells me that everything was absolutely normal. This is what I expected, but I am still overjoyed. It gives me hope for full recovery .." F.E.A.S.T. parent
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Navigating Phase II
By Sarah K. Ravin, Ph.D.
There is a common misconception that Maudsley Family-Based Treatment (FBT) is all about parental control of feeding. While Phase I of FBT does require parents to take control of their ill child's food intake to help restore her weight, FBT also encompasses two other very important phases. In Phase II, parents return control over eating to their child as he or she demonstrates readiness to eat on their own. Phase III involves helping the adolescent return to normal development and establish a healthy identity.
Weight restoration is an essential first step in overcoming AN, but it is only the first step. Without the ability to eat independently, opportunities are limited and quality of life is greatly diminished. Recovery from an eating disorder is about more than just restoring a healthy body - it is also about restoring a healthy mind and a fulfilling life.
Phase I tends to be the most tumultuous and draining for the family and the most agonizing for the patient, but the task at hand is very straight-forward: eat more and gain weight. Phase II, however, is much more ambiguous.
Here are some tips to help you navigate the uneasy waters of Phase II:
I like to begin Phase II with a vision of how the child's life will look at the end of Phase II. Essentially, the child needs to be able eat on their own while maintaining weight, in an age appropriate way, in the context of family and normal life. Therefore, the end goal of Phase II is different for a 10-year-old than for a 16-year-old or a 22-year-old. A good frame of reference in creating your vision for Phase II is to look at the amount of autonomy your child's friends have with regard to their eating.
- Take baby steps, go very slowly, and accept that this Phase will take a long time.
In my experience, Phase II usually takes somewhere between 3-12 months, depending on the severity of illness and other individual differences.
- Have your child practice choosing and preparing her food under supervision before you allow him or her to eat unsupervised.
I coach parents to observe their child's food selection and gently guide him or her in the right direction if needed. I usually require a patient to have at least a week of consistent success preparing a meal/snack under supervision before moving on to the next meal/snack.
I typically coach parents to proceed through Phase II by giving back control of one meal or snack at a time and allowing the child to gain mastery of each meal/snack before moving on to the next one.
- Assess progress regularly.
Your child should be weighed weekly during this phase, and you should keep tabs on her mental state and behavior daily. If weight and state are good, then your child is ready for more independence. If weight drops orED behaviors increase, then your child needs you to take back more control.
- Don't be afraid to take back control when you need to.
Nearly every patient has a few setbacks during this Phase. It is perfectly OK - in fact, it is your duty - to take back more control over your child's food when he or she has not been able to manage eating on her own.
- Give your child a gentle nudge forward when he or she needs it.
While many patients are all too eager to take back control over their food intake, some patients become overly dependent on their parents to feed them and have great difficulty moving forward. Patients are flooded with anxiety, indecisiveness, and guilt when the time comes to defy the ED voice and eat on their own.
Many parents lament that their recovering child no longer goes out for ice cream on a whim or breezes into the kitchen to grab a few cookies or gives herself generous second helpings of her favorite meals. I advise parents that it is unrealistic to expect a recovering anorexic to eat freely or spontaneously. The goal of recovery is achieving physical and mental health, not necessarily returning to how things were before ED struck.
- Don't force Phase II into an external timeline.
Don't rush through this phase just so that your child can eat lunch with friends when the school year starts. The only timeline that matters is your child's recovery timeline, which may or may not be convenient for your child or you).
- Remember that whatever happens is simply feedback, not failure.
If your child is not able to take charge of a meal or snack, that says nothing about his or her character or effort or prognosis for recovery. It simply means that he or she is not ready for that step yet. Expect your child to make mistakes, and be there to help correct them without blame or judgment.
- Keep things in perspective.
As challenging as Phase II can be, don't lose sight of how far your child has come. Your child is eating well, at a healthy weight, medically stable, and in effective treatment. In the long run, it doesn't matter whether your child breezes through Phase II or whether it takes over a year - your child is safe, physically healthy, and will recover eventually.
Dr. Sarah Ravin is a licensed psyhologist who works primarily with adolescents and young adults who are struggling with eating disorders, body image issues, depression, anxiety, obsessive-compulsive disorders, and self-injury.
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"I had to learn not to care about "trust" and "learning" and "insight." Those were cruel to ask of her and not really her job. We continued to serve and sit together for all food for a solid year and only then start to turn back over responsibility and  even then VERY slowly and with several times where we simply went back two steps. Without anger, without shame, without recrimination, and - most important - without disappointment. Our kids have a right to have us be so stable in our message and oversight that we don't even break a sweat if things go backward or things go well. No happy dances, no falling apart. (well, okay, yes every once in a while in a dark room)." F.E.A.S.T. Parent
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 UK Task Force News
Preparations are moving forward for the Conference in Nottingham on 23rd and 24th November. We are excited to offer parents in the UK a chance to meet up, share ideas, tears, laughter and food and the opportunity to hear clinicians including Janet Treasure and Gill Todd, as well as our own members and advisors speak. Elsewhere the amazing Helen Missen has been campaigning in Wales and had her petition to fund services for adolescents to the same level as those for adults heard by the Welsh Assembly in July.
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Canadian Task Force News
A new Canadian Task Force has been developed at F.E.A.S.T.  The co-chairs of the task force met with NEDIC (National Eating Disorders Information Centre) staff regarding the revamping of the NEDIC website. NEDIC reached out to the task force to provide feedback and suggestions. Task force's goal is to promote evidence based treatment and family involvement. NEDIC is hoping to work collaboratively with task force. The task force also is currently collating information on national and provincial health care systems and reviewing the Canadian advocacy organizations listed on the FEAST website to ensure they are up to date.
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Australian Task Force News
Planning for the Australian carer's conference to be held in Brisbane on May 24-25 2013 is progressing well. The conference  is being hosted by F.E.A.S.T, the Butterfly Foundation, the Queensland Department of Health Eating Disorder Outreach Service (EDOS), and the Australian and New Zealand Academy for Eating Disorders (ANZAED). The title for the conference is 'At home with eating disorders'. Professor Daniel Le Grange and Professor Janet Treasure have been confirmed as keynote speakers. An exciting program is being developed, aimed at providing families and caregivers with access to expert knowledge and skills. A website for the conference will available soon.
A number of F.E.A.S.T members are participating in the National Eating Disorders Collaboration (NEDC) in Australia. Anyone with an interest in eating disorders is invited to join the collaboration and participate in the workshops. The next workshop will be held in Adelaide on 22-23 august 2012. The NEDC is also inviting feedback on their new website. Please take a few moments to have a look and provide comments. |
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F.E.A.S.T. Family Guide Task Force (FGTF) Update
The FGTF is happy to announce that we are currently completing our first document: Family Guide to Neurobiology of Eating Disorders. This document is being created to convey general concepts and answer typical questions families and patients have about neurobiological contributions to Eating Disorders.
Our next project will be a family version of the AED Guide to Medical Management, which was written for Primary Care Physicians and other health care professionals. This will be a collaborative effort with the Academy for Eating Disorders (AED) Medical Care Standards Task Force (MCSTF).
F.E.A.S.T. has helped to distribute the original guide around the world and the guide is available for download on the F.E.A.S.T. web site. The task force is currently translating this brochure into Spanish, French, Italian and Chinese. To date, over 65,000 printed copies have been distributed and many more downloaded from various E.D. web sites. Larger quantities (25 or more) are available through F.E.A.S.T. for distribution at local/regional meetings and other community resources. If you would like to help distribute this Guide in your area or are planning a conference and would like copies mailed to you, please e-mail Mary Beth Krohel at: mb3net @yahoo.com. Please put AED Guide in the subject line. (There are no charges for copies or shipping). |
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From the Executive Director's Desk
Laura Collins, F.E.A.S.T
I was recently given the opportunity of addressing the Academy for Eating
Disorders international conference audience about a parent's view of the term "brain disorder." The PowerPoint presentation, with oral notes, is available on our website. This is a controversial and sometimes emotional debate in the field and it was an honor to represent the perspective of
our parent community to so many professionals treating eating disorders.
I had many comments from the audience afterward, but the one that stays with me most was this: "You're not what I expected." Second-hand reports, or quotes taken out of context, rarely give an accurate view; these issuesare far too complex for debating at a distance. Although some of the principles of F.E.A.S.T. surprise those new to our community, when we all sit down and really talk we find much in common and can start to really address the differences in a mutually respectful way. Like the term 'brain disorder,' words matter but only if we know what the other person means by them. I encourage all parents to take the time to sit down and have real conversations with others interested in eating disorders even if at first you are on different sides of an issue. That is the best way I know of to understand and persuade.
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Position Available:
F.E.A.S.T. Seeks New Executive Director
As founding Executive Director, Laura Collins Lyster-Mensh has built F.E.A.S.T. into an international and largely virtual organization, staffed by volunteers, which provides significant services for parents and caregivers in its mission to help loved ones recover from eating disorders and to reduce the suffering associated with eating disorders. Its website and Around The Dinner Table Forum provide information and mutual support, and its efforts promote evidence-based treatment and advocate for research and education, in writing, online, in written materials, and in conferences, worldwide.
At the beginning of 2013, Ms Collins will take on the new position of Policy Director. F.E.A.S.T. is seeking a new volunteer Executive Director to work with her in the next stage of F.E.A.S.T.'s development. We are looking for a leader who can carry on F.E.A.S.T.'s mission with energy and compassion, by reaching out to parents, caregivers, clinicians, researchers and the broader community.
The Executive Director shapes F.E.A.S.T.'s activities, managing its existing services while looking into the future of evidence-based eating disorders treatment to formulate long-term strategy. The new Executive Director will work with, and be supported by, a group of volunteers with specific responsibilities, and will be provided with professional operational support consistent with F.E.A.S.T.'s growth. The new Executive Director will be responsible to the Board of Directors.
A Search Committee has been formed to include representatives from many of F.E.A.S.T constituencies, and asks that everyone interested in supporting F.E.A.S.T.'s future suggest candidates or even volunteer. Please email the search committee, in confidence at searchcommittee@feast-ed.org, or the search committee chair, Leslie Feder, the Vice-Chair of F.E.A.S.T.'s Board of Directors, at lfeder@feast-ed.org.
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Don't Miss Out!
F.E.A.S.T. Conferences
Register Now
November 23-24, 2012
Nottingham, UK
Conference for Carers
(A collaborative effort between ECHO, F.E.A.S.T., and Maudsley Carers).
Registration and information
November 30-December 1, 2012
Alexandria, Virginia US
"There's No Place Like Home"
Registration and information
May 23-25, 2013
Brisbane, Australia
"At Home with Eating Disorders"
(A collaborative effort between F.E.A.S.T., ANZAED,
The Butterfly Foundation and EDOS)
More information coming soon!
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Dear F.E.A.S.T. Member:
Thank you! You are receiving this newsletter because you are one of our 1782 members: families, clinicians, patients, and organizations from 34 countries. We depend on you and appreciate your continuing support and interest in F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders).
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Other
Upcoming Events
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US Congressional Briefing with the Eating Disorders Coalition
November 29, 2012
Washington, DC
"Ten Percent is Unacceptable" Join other families to speak up about the unacceptable rate of mortality for eating disorders! This public event will spotlight the need for better statistics, research, and dissemination of information to families. |
National Eating Disorders Association Annual Conference
October 11-13, 2012
St. Petersberg, Florida, US
Eating Disorders Alpbach 2012
The 20th International Conference on Anorexia and Bulimia Nervosa, Binge Eating Disorder and Obesity.
October 18-20, 2012
Alpbach, Tyrol, Austria
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F.E.A.S.T. Advisor News
Dr. Debra Katzman from Canada joined the F.E.A.S.T. Advisory Panel. She is a Professor of Paediatrics in the Division of Adolescent Medicine, Department of Paediatrics and the University of Toronto. Dr. Katzman is also an Associate Scientist at the Research Institute at The Hospital for Sick Children. In addition, Dr. Katzman is on the Board of Directors for the Society of Adolescent Medicine, serves as the Director of Publications for the Society of Adolescent Medicine. Dr. Katzman is a Fellow of the Society of Adolescent Medicine and a Fellow of the Academy for Eating Disorders. She is also a member of the Steering Committee for the Ontario Community Outreach Program. Dr. Katzman is a member of the Community Advisory Committee for Eating Disorders. She also services as Director, Patient-Based Research in Adolescent Medicine, Population Health Sciences, The Department of Paediatrics and The Research Institute.
Mary Beth Krohel, F.E.A.S.T. advisor and / AED / MEDA volunteer, received an Advocacy award at the Academy for Eating Disorders Conference in Austin, Texas. Mary Beth was introduced with great charm and admiration by Ovidio Bermudez and gave a wise acceptance speech accompanied by a spectacular PowerPoint. F.E.A.S.T. is proud to know M.B. and to have her as a partner in advocacy and Advisor to this organization.
Stephanie Milstein, Ph.D. will be attending the National Eating Disorders Association Conference in October and presenting with Cindy and Carrie Arnold on Supporting Parents, Supporting Patients: The role of Parent /Family Coaching throughout the Treatment and Recovery Process. She also will be leading a break out workshop, Parent Support Groups and Role of Parent Coaching. for the upcoming U.S. FEAST Conference.
Dr. Mark Warren authored an article about boys and anorexia for Your Teen magazine.
Dr. Thomas Siber gratiously obtained permission from the American Academy of Pediatrics to share his article Treatment of Anorexia Nervosa against the Patient's Will: Ethical Considerations with F.E.A.S.T. |
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Research Summary:
Medical Instability and Growth of Children and Adolescents with Early Onset Eating Disorders
By Raye-Ann O de Regnier, M.D.
New research has shown that a significant percentage of children with early onset eating disorders (<13 years of age) may be medically unstable even at normal weights. The research, led by Dr. Lee Hudson of the Institute of Child Health at the University College of London, was conducted by investigating all suspected cases of early onset eating disorders in the UK and Ireland from March 2005 to May 2006. Pediatricians and child and adolescent psychiatrists were asked to report children less than 13 years of age with two or more of the following problems: weight loss or failure to gain weight during a period of expected growth (not due to any identifiable organic cause), determined food avoidance, fear of weight gain, preoccupation with body weight or energy intake, self-induced vomiting, excessive exercising, or recurrent episodes of binge eating or abuse of laxatives. Using modified DSM-IV and ICD-10 diagnostic criteria, these 208 children (age 5-12 years) were subsequently categorized as having anorexia (n=76), bulimia (n=3), EDNOS (n=83), binge eating disorder (n=6) or "other" (n=40), meaning that the child did not fit into any standard diagnostic group. Typically children in the other group had significant weight loss and determined food avoidance without weight and shape concerns that would have resulted in a diagnosis of anorexia nervosa.
Of these children, 65 were medically unstable (with low heart rate, low blood pressure, dehydration or low temperature) at the time they were first seen for medical or psychiatric attention. For the medically unstable children, 41% were heavier than the second percentile for BMI for their age, indicating that they did not meet the World Health Organization's definition of thinness. Most of the children hospitalized for medical instability were hospitalized on a pediatric ward and not a psychiatric or eating disorder unit.
These findings highlight the need for all physicians to be skilled in assessing not only weight but also vital signs and eating behaviors and attitudes in assessing children for eating disorders. It is also important for pediatricians to recognize that children may be medically unstable and in need of medical attention, even if their weight is technically within the normal range. This study may be a good resource for parents of young children who have concerns about eating disorders but are not getting a diagnosis due to the young age of their child or the finding of a weight within the normal range.
Reference:
Hudson LD, Nicholls DE, Lynn RM, and Viner RM. (2012). Medical instability and growth of children and adolescents with early onset eating disorders. Archives of Disease in Childhood, <Epub ahead of print> |
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"For about 2 years I kept reacting like a bull in a china shop at every little thing that triggered ED fears in me. My gifted communicator of a daughter let me know that it hurt her that I couldn't let the ED go. She also said to me "I NEED you to stop seeing me through filters, the ED filter, the ADHD filter, the LD filter" See ME for who I AM! Boy, I needed her to say that to me and I am honoring her request." F.E.A.S.T. parent
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