The state of the ED professional world: a report

Well, friends, there's good news and bad news.

Good news: parents are being heard.

Bad news: parents are being heard.

I can't show you what I'm talking about, because it is on a listserv for professionals only. Let me sum it up, knowing that although you parents can't read their conversation that some of them may do me the honor of reading this - and your responses.

What has happened, in a brief tour, is that ideas that are important to me - the ones I wrote about in my blog yesterday - are getting a lot of attention in the professional ED world because of a lot of hard work on the part of many people. The ideas, being different from what has come before, have not been welcomed or embraced by everyone.

Meanwhile, the social networking world of ED parents and activists hasn't been waiting for the slow progress of professional change. They've been sharing information, speaking up, writing directly to researchers and professionals, commenting on news articles.

Now, you parents need to know, your objections are being judged not only on their merits but on your civility and the friends you keep. There is a growing number of people who believe you are bullies, operating in a group, and that you are unfair and rigid and that you think that parents are perfect and that the only thing anyone should ever do is one type of therapy. They feel you don't listen, you don't understand the good intentions and professional judgement of well-qualified experts. They feel you are your own worst enemies and that you are hurting the cause of better treatment of families.

They find you extreme, and closed-minded, and rude. They are spreading rumors about you that have half a grip on half the truth -

Now, I'll share my letter to that listserv below, but first want to set a challenge. First of all, to know that the people who feel that way about parent activists are not a monolith, themselves. They are not a coordinated group. They are not even the majority. They are people who are genuinely confused, hurt, offended, and often frightened. They don't understand your objections or your emotions.

The other challenge is this: be civil. Not because you're not provoked, but because it works better and makes my job, in dealing with people in the profession, simpler.

"I was bullied off this listserve a while ago, but I do continue to read it with interest.

I am in the somewhat surreal position of having been there for, or directly involved, with many of the interactions being discussed here. I don't know if my observations will be helpful, or even heard, but I'd like to try.

Parents around the world have started to speak up in public and often directly to clinicians and researchers and organizations in the eating disorder field. Some of those interactions have been polite, some wrong-headed, some quite rude – on all sides. The Internet has changed the ability for people to access, share, and respond to information. If you publish on the Internet or in publicly available journals or run a treatment clinic or are quoted in the media in 2012 you will hear from the public. I certainly do!

There are some frustrated, frightened, and – yes – angry parents out there who have good reason to speak up when they can. Your field lacks standards and tolerates every flavor of misguided treatment ever invented. What we are seeing is real, and justified, frustration on the one side and plea on the other not to be questioned.

In the ten years since my daughter became ill with anorexia nervosa I have seen enormous positive changes in the field. My mission has been to make sure families are aware of evidence-based treatments, that they know that this is a treatable brain problem, that neither they nor their loved one caused the illness, and that they put aside everything else as they do the difficult but necessary work of working as a family toward full recovery. These ideas tend to confuse and offend people NO MATTER HOW THEY ARE EXPRESSED. Yet these are neither extreme nor unfounded ideas.

Some people have been very rude. Others have been a bit too delighted to be offended. That's human.
Blaming the messenger is a common delaying tactic but it doesn't address the message. I strongly object to the rudeness, I really do – publicly and privately. I've lost more friends by standing up against their excesses than I have over ideological differences. I'm sure I will continue to. I also plan to keep plodding forward as politely as *I* can to discuss the real issues.

Those outside the field don't have to be silent and are often saying what others in the field are afraid to say. If half of the people I hear from back-channel weren't afraid to speak up here – and I'm sure this is true on all sides of the issues – it would be a different debate. If the real story behind some of these anecdotes was known, I'm pretty sure most people of good will would agree that the genuine issues are urgent but solvable. The goal of "coming together" isn't going to happen without facing these issues calmly and honestly.

Laura Collins
Executive Director


  1. All I can say is that my daughter and her friends are laughing and singing and snacking on her 18th birthday party and I never thought this day would come. No evil comments on a blog can spoil this and Laura I thank you for having ATDT or I would have never found the right care.


  2. "My mission has been to make sure families are aware of evidence-based treatments, that they know that this is a treatable brain problem, that neither they nor their loved one caused the illness, and that they put aside everything else as they do the difficult but necessary work of working as a family toward full recovery."

    Your mission has succeeded for our family! Thanks for being there Laura, and speaking up consistently, clearly and kindly.

  3. Laura, I am so glad you posted this. I know we've often found ourselves arguing different perspectives, but I do very much respect that you are aiming for the same goal as me-- to have a world where people with eating disorders can get the treatment they need, parents can be equipped with the information, support, and understanding they need, and recovery rates can be much higher than they are.
    I do think that FBT-based discussions are important, and that clear, patient, and civil communication can only help move us all forward to a place of greater understanding. Currently, it seems there are a few "hot issues" that are being tossed around, and emotions are high for everyone. I do believe that continued discussion will help ease the tension and increase understanding. And I do believe that another outcome of working through the tough spots is that eventually we as a field will be able to relax a bit, and perhaps even do more to acknowledge everyone's positive contributions. I know that, when conflicting viewpoints are discussed, we don't always take the time to acknowledge the fact that many parents are working hard and have been exhausting themselves by doing everything in their power to support their family member in every way they know how. It is a difficult job, for sure- and often a thankless one!
    While we may not always agree, I do believe your voice is important. Keep speaking up and keep the faith.
    Thank you for the work you do.

  4. Laura

    From a parent's perspective and from an advocate's perspective, I strongly disapprove of a private forum where a group of people can get together and "bitch" about parents behind our backs. It smacks to me of the playground, not the grown up world.

    I am sorry if people find this offensive and even aggressive. We, as parents and advocates, are open and honest about our views and our beliefs all over the internet. The Around the Dinner Table forum is not closed. We have no secrets.

    Now before someone jumps in to tell me that this is a professional forum and should therefore be private and is a forum for exchanging ideas on a professional basis, I understand that. If that is the way you view the Listserv, why on earth are you using it to make petty and personal attacks on Laura, F.E.A.S.T. and the few parents who are happy to challenge your ideas? The purpose, so I understand, is for professionals to discuss and debate new ideas and new theories about eating disorder diagnoses and treatments.

    Why can the professionals not answer their critics in public and stand up for what they believe in, rather than sneaking away into the "corner of the playground" to whisper to each other in some secret society language about how "rude" and "wrong-headed" parent activists are? It smacks of intolerance, inflexibility and incivility.

    I am trying to be as polite as I can. I have been one of the protagonists who is happy to discuss, praise, debate and criticise openly on Facebook, my blog, the forum and endless comments sections in newspapers and publications on the internet. I dislike the idea that people have been deliberately provoking a group of vulnerable parents on the internet and then rushing off to their secret society corner to complain. How about using the Listserv for what it was meant for and stopping using it to bully and discredit people?

    Charlotte Bevan

  5. A couple of clarifications?

    One, no one is attacking me personally.

    Two, these aren't attacks. These are people reporting that THEY have been unfairly attacked.

    I have no issue with a private forum for members of a professional organization. That's appropriate. No one is using it, as far as I can see, to bully or attack. What they are doing is discussing important issues in the field and of treatment and I'm all for that, really. It is an important view to the thinking and the variety of viewpoints that exist. It's also a good way to share information with others in the field. The problem isn't the forum, or the statements, it's the fact that there is genuine misunderstanding in the field among professionals about all of those issues. It is sad, really, to see how far apart people are on those issues. So, Charlotte, I can reassure you that while there is intolerance that is just a reflection of real feelings out there in the field.

    Parents are being heard, and they are upsetting and offending and scaring people. Some of that is inevitable, as the ideas held dear by many of us and the things that make some of us very angry are simply not going to be welcomed. Some of it is not, because some of the behaviors by parents have been rude, misguided, and personalized against individuals instead of on the IDEAS.

    I don't control what parents do out there on the Wild West of the Internet, and I'll be darned if I'm going to apologize for anyone, but I do prefer that we all adopt a policy of sticking with criticizing ideas and not the people who hold them, and that we do so civilly, but all the while BE HEARD. We need to speak up!

    1. OK Laura, I understand better now and I withdraw my comments about the playground stuff. I seem to be doing a lot of apologising lately!

      As a very wise friend of mine said to me this morning, science would never go forward without robust debate and I think that is important to understand. xx

  6. Laura, This forum and FEAST is what helped saved my D's life after ten years of failed treatments and clinicians making her feel she was a chronic case. I am really concerned that the basic premise of the forum, Maudsley and FBT - to get our children fed to an accurate and fully weight restored range in a timely way, is not understood by the treatment community. I am concerned that the "black and white thinking" that our children have is mirrored by treatment professionals. I, for one, have never felt that treatment professionals are not necessary. In fact, I think they are very important both to help support our family in refeeding, but also to help our children learning coping skills for relapse prevention when they are ready . I have been a strong proponent for getting our children, no matter what their age, assessed and treated for comorbid conditions somewhere after the 6 months of post-Weight restoration and maintenance so that those conditions can be treated. Our children are vulnerable to relapse without that support. I think my daughter's words explains it all - she has told me consistently that she never would have been able to battle her eating disorder without my help. She realizes how much she's needed to get help for her comorbid conditions now that her brain has healed enough from the malnourished state she was in for a decade. She has told me that clinicians set too low of a weight to appease her, the sufferer, and that she sees the value in us not setting a weight this time and see where she "really needed to be". She knows what it will take for her to maintain her remission long term, and perhaps fully recover. That is with the help of a skilled clinician who provides her the guidance in this stage of her treatment. The main difference between our current clinician and others is the timing for this help. My daughter could not benefit from any therapy, CBT or other, until her brain was healed enough so her cognition was not so distorted.
    I'm so sorry that these clinicians have a private forum, where they can bash parents - as we are an important part of the support team. Strengthening parents in that role, is what helps our children with long-term remission or recovery. Alienating and bashing parents only serves to keep our children ill. I am so grateful to you, the forum, FEAST, Dr. Kaye, Dr. LeGrange and Lock, Dr. Treasure, and Dr. Ravin who have helped us get so far and have HOPE my daughter will have a life

  7. "First they laugh at you, then they ignore you, then they fight you, then you win" - Ghandi.

    Looking forward to the next step. When we get there, it will have been in large part because of your work, Laura.


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