Imagine a Global Board for eating disorders

Elissa Myers proposes a solution to uniting the field in addressing a global problem

Imagine a Global Board for eating disorders

Imagine a Global Board for eating disorders

Imagine a Global Board that listens to “everyone” in the eating disorder field. What a difference it could make to lives everywhere!

The vision for a Global Board comes from the indefatigable Elissa Myers, former chief staff executive of the Academy for Eating Disorders (AED). Under Elissa’s proposed model, a Global Board would include people from every sector — researchers, health professionals, parents, children and adults with eating disorders, and more.

This need has been silently screaming for attention, and Elissa doesn’t hold back.

Elissa explains:

What makes an organisation attractive

I want to share, with modesty, a strong point of view.

It has never made sense to me to try to bring about the demise of any organisation working in this field. Identifying self-serving or unethical, or even illegal activities of any association is undoubtedly appropriate. But in my experience, the vast majority of associations that survive do so because some individuals find them to be useful. Those that do, join. Those that don’t find another organisation or just move on to work independently.

Individuals are drawn to a particular association that:

  • Is home to other individuals whose interests and values intersect.
  • Focuses its activities/discussions on issues of direct interest to the individual.
  • Makes it relatively easy for individuals to interact with each other and to share information, research, experience, and perspective.
  • Is in the realm of affordability for each individual – and that “realm” will vary greatly for each individual.
  • Rewards and recognises major breakthroughs, insights and performances.
Self-defeating

There is no reason why, in a field where several (many) associations represent similar missions and specialised segments of the population, success lies in having the associations compete with one another in the quest to destroy the competition.

Fewer eating disorder associations will almost inevitably lead to less progress in addressing the important work.

I strongly recommend that each association continue to do its best to work toward an improved environment for avoiding, recognising, reducing, treating, and understanding eating disorders.

Any association operating illegally or failing to address and support member needs will naturally lose its constituents and fade away. However, that decision needs to be made internally by those who identify with a particular group.

To clarify what I’m trying to say, if I find an association irrelevant or does not meet my needs, it is my choice to ignore it. But if others find / association to be of value, it is not my business to say that they cannot/ should not participate in it.

Members are the core of an association 

The association (EVERY ASSOCIATION) IS its members – it is not like a corporation “owned” by any single or group entity. Every association, by definition, is “a connection or cooperative link between people or organisations: he developed a close association with the university.”

So, I support and cheer for the survival, growth, and prosperity of all associations and groups working toward their important goals.

Challenges in the eating disorder field

However, in the world of eating disorders, there are many different perspectives:

  • The regulatory structures of the health care systems vary dramatically from country to country.
  • The “perception” of eating disorders varies widely around the globe.
  • The support for researchers, trainers, and treatment professionals vary dramatically not only country by country but by regions within countries.
  • The economic realities and capabilities of governments vary significantly around the world.
  • Cultural and religious customs and beliefs vary widely, and many have the potential to impact the development and or treatment of eating disorders.
  • And more….

So, in my heart, I pray that:

  1. a) all existing organisations continue their important work – and work internally to strengthen their contribution to the field and their members; and
  2. b) all leaders get the training and information they need to provide strategic, constructive, intelligent and fiscally sound support to their members.
Working together – the way forward

I ALSO PRAY that the organisations (big and small) can work together to make the most progress worldwide.

So… I recommend that:

  • A global “board” of representatives from each organisation be created – not to control or make decisions for the individual associations but to help share perspectives, findings, work, obstacles, and more.
  • Existing organisations are invited to appoint (elect?) an individual to serve as the ambassador/communications conduit for each group. Each representative should have a specific tenure to ensure rotating representational governance.
  • The Global Board meet perhaps quarterly – or more often as needed – with an unbiased moderator who will set the agenda by collecting input from the individual Global Board members.
  • The Global Board work toward:
    • Identifying and prioritising strategic goals and objectives. (The individual associations may or may not choose to adopt the priorities of the Global Board, but they can share with their respective association members insight on the priorities of the communities at large).
    • Creating open forums for the exchange and or identification of existing research and evidence
    • Sharing great ideas and success stories from each of the organisations
    • Sharing and mutually considering obstacles (organisation by organisation; country/region by country/region)
    • Celebrating success stories!
June’s  view–a voice of experience

Elissa has presented a way forward for the eating disorder field become more effective worldwide. The challenge now is for the field to seize the day, unite and bring Elissa’s proposal for a Global Board to reality.

My understanding of the eating disorder field has accumulated from a combination of 20-plus years in eating disorder advocacy and personal experience of a long-term eating disorder that developed oh so long ago but in many ways, like yesterday, in 1962.

My experience in advocacy at local, national, and global levels has led to the view that sometimes egos, private agendas, and beliefs influence perspectives on what is best for the common good. To be effective, the focus of an eating disorder organisation must be on improving access to evidence-based care in a range of areas that include prevention, early diagnosis and intervention, appropriate treatment, and in-home and step-down support.

A timeless, universal language

Listening to 11-year-olds today describe “the anorexia voice” in their mind eerily reminds me that eating disorders have a universal, timeless language. The “voice” the children hear today is the same voice I heard when anorexia befriended me 60-plus years ago, and it is the same in every language.

A global approach to understanding, addressing and silencing this devious, demanding, tormenting “voice” would be most helpful. Prompt access to proper, evidence-based care with properly accreditated treatment team members is essential to limit the risk of this insidious illness becoming lifelong.

The children and their families are the losers when the health profession fails to keep its focus.

I am concerned that treatment approaches with an evidence base do not attract the support they deserve from some researchers, health providers and health professionals in countries that do have resources, let alone those that don’t.

Family-Based Treatment

Children and their families must be the priority.

Such a need is brought home in interviews with families for two upcoming books (My Kid is Back Second Edition, Empowering Parents with Family-Based Treatment for Anorexia Nervosa, co-authored with Prof. Daniel Le Grange; and My Family is Back – Multi-Family Therapy for Eating Disorders, co-authored with Prof. Ivan Eisler and Dr Julian Baudinet). Repeatedly, when worried families first presented their child to their family doctor and an eventual diagnosis of anorexia nervosa was given, Family-Based Treatment (FBT) was rarely mentioned as a first option, if at all.

[Based on current evidence-based research, FBT is the first‑line treatment with the best success rate for adolescents with anorexia nervosa.]

Despite FBT having the best success rate, some health providers and health professionals disregard it or offer a watered-down version (which almost always fails, prolonging the child’s illness, maybe for a lifetime) or don’t even bother recommending it to patients or clients.

‘Haven’t heard of FBT’

I’ve been shocked and dismayed to listen to health professionals (themselves parents) share that they “hadn’t heard of FBT” when their child developed anorexia, and when they sought help, FBT was not mentioned. It was often only through researching in desperation online, such as help groups, that families became aware of such support. Meanwhile, valuable weeks and months had been missed in giving the child prompt intervention, and the illness had embedded itself more deeply in their brain.

Finding out about FBT and MFT is one challenge; finding a health professional with the proper expertise to guide the family in the treatment is another.

This is the situation today. It is not good enough.

Family, whatever form it takes, is everything. Family is our most precious creation.

An eating disorder is a family illness. Optimum results are achieved when everyone is involved in the recovery process.

My passion for the family stems from the experience of becoming alienated from my family of origin as a result of my anorexia.

The sadness of such loss weighs heavily on my heart.

I am involved in advocacy because I don’t want children today to lose their families or their lives to this horrid illness that has a universal language.

Let’s build worldwide bridges to connect all in the eating disorder field

I applaud Elissa’s proposal for a Global Board.

I envision a Global Board that puts families first together with evidence-based treatments that support the person (child or adult) with the eating disorder and the maintenance of their family unit. In my dream, a Global Board encourages governments to fund health providers to provide the necessary training for FBT and MFT and support peer support and family support groups.

Elissa sums up perfectly:

E pluribus unum!  Together we are something!

What is the next step?

June Alexander

About June Alexander

All articles by June Alexander

As founder of Life Stories Diary my prime motivation is to connect with people who want to share their story. Why? Because your story is important. My goal with this blog is to provide a platform for you to share your story with others. Building on the accomplishments of The Diary Healer the Life Stories Diary blog will continue to be a voice for people who have experienced an eating disorder, trauma or other mental health challenge, and provide inspiration through the narrative, to live a full and meaningful life.

My nine books about eating disorders focus on learning through story-sharing. Prior to writing books, which include my memoir, I had a long career in print journalism. In 2017, I graduated as a Doctor of Philosophy (Creative Writing), researching the usefulness of journaling and writing when recovering from an eating disorder or other traumatic experience.
Today I combine my writing expertise with life experience to help others self-heal. Clients receive mentoring in narrative techniques and guidance in memoir-writing. I also share my editing expertise with people who are writing their story and wish to prepare it to publication standard. I encourage everyone to write their story. Your story counts!
Contact me: Email june@junealexander.com and on Facebook and LinkedIn.

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