Wednesday, December 30, 2015

International Eating Disorders Action: 2015 Achievements

International Eating Disorders Action:  2015 Achievements
January 2015
  • IEDAction sent a letter to the Canadian Government asking for clear action on developing a national strategy for eating disorders. The letter joined other advocacy efforts and helped elevate eating disorders at Ministerial level.

  • Eating Disorder Hope (ED website): For some time, a group of advocates has been concerned about the content of the website Eating Disorder Hope (EDH). The site is designed to have an educational feel yet many articles were outdated and promoted the debunked psychosomatic family illness model (the eating disorder as an expression of family dysfunction). The situation was similar to the Something Fishy website in that a high SEO ranking means many people searching for information land on this page.  Action: Members of IEDAction sought to begin a conversation with queries sent to the Contact Us information on the site and via blog and Facebook comments and tweets on pieces whose content we objected to. Our comments and missives were direct yet never abusive. With all reasonable attempts to open a productive dialogue stymied, one of our members filed a BBB complaint on the grounds the connections between the information and the advertising was not clear enough. Outcome: We are pleased to announce that a dialogue began on Twitter with IEDAction member E.C. and that we have seen a big shift in the postings on the site. Thank you to all who helped with comments and tweets. Access to the most up-to-date research, and information about the evidence-based treatments informed by that research, is of the highest priority and we are pleased that EDH has decided to show their commitment to the HOPE portion of their name by publishing content that supports this mission.

February 2015
  • IEDAction partnered with National Initiative for Eating Disorders and F.E.A.S.T. during Eating Disorder Awareness Week #EDAW2015 February 1-7, 2015 in Canada and the USA National Eating Disorder Awareness week #NEDAW2015 February 22-28th.   IEDAction and Eating Disorder Parent Support mobilized members to write and share their personal eating disorder experiences on NIED and IEDAction blogs and used social media to raise awareness, reaching millions on Twitter.

  • IEDAction participated in the Sock-IT to ED campaign during Eating Disorder Awareness Week, showing support by sharing photos of socks and raising funds for eating disorder organizations.

March 2015
  • Facebook: FB status updates included a "feeling fat" option, which pictured a chubby cheeked emoji. Action: IEDAction members supported the Endangered Bodies group by signing their petition to ask Facebook to remove this status update option. Members also commented to and emailed Facebook regarding the inappropriateness of this option stating that fat is not a feeling. Outcome: Facebook changed the wording next to the emoji to "feeling stuffed" and commented that "feeling fat as a status updated could reinforce negative body image, particularly for people struggling with eating disorders." They also stated that they will continue to listen to feedback from users.

April 2015
  • Rescue The Anorexia Girl(game app for Android): Smart Touch Media app development company had a game app called 'Rescue The Anorexia Girl' in which required players to throw pies at a underweight character so she did not die. The app was for sale at Amazon, Barnes and Nobel and other app retailers. Action: IEDAction members took to action on Twitter, email and Facebook to express concerns about the inappropriateness of the game. Outcome: Within 48 hours the app was removed from sales and Smart Touch Media responded to members with apologies and promises to look more closely at content in the future. The story was picked up by media outlets globally including: madamenoire.com, inquisitr.com, yahoo parenting, terrafemina.com, youbeauty.com, ibtimes.com, washingtontimes.com, indiagazette.com, hellogiggle.com, Nydailynews.com, closeronline.com, independent.co.uk, people.com, MSN.com, ABC television in Philadelphia, Elle.com, huffingtonpost.co.uk, Nigeriadailynews.com, examiner.com and The Sun Newspaper in the UK. Several IEDAction members were quoted and IEDAction was mentioned in several articles.

  • PBS Health Link: A member of IEDAction was contacted by WMHT- PBS Television (which serves Eastern New York and Western New England) about a Health Link special they were producing on eating disorders. Due to the member's efforts IEDAction, FEAST, Dirty Laundry Project and Eating Disorder Parent Support were mentioned as resources on the program and are listed as resources on their website.

  • Members of International Eating Disorders Action travel from around the world to attend the Academy for Eating Disorders International Conference on Eating Disorders 2015 in Boston April 23-25th.

May 2015
  • Members of the IEDAction community reviewed available text on the Anna Westin Act proposed to be submitted to Congress in the United States and provided constructive feedback to the components of the bill.

June 2015

  • Committee Appointment: IEDAction’s Amy Cunningham became a member of the Advisory Board for the Academy for Eating Disorders. Since her appointment she has engaged to help progress the field of eating disorders.

  • Nine Truths of Eating Disorders (collective action): IEDaction was invited by the Academy for Eating Disorders (AED) to help develop the “Nine Truths of Eating Disorders” as part of a group of leading eating disorder organizations.

July 2015
  • Committee Appointment: JD Ouellette became a member of the Patient Technical Advisory Committee on Behavioral Health for the Joint Commission. Since her appointment she has participated in meaningful discussions with the committee in hopes to change aspects of eating disorder care.

  • IEDAction members along with ASPIRE held a conference call with leadership of the Butterfly Foundation in Australia to discuss concerns about their “Don’t Dis My Appearance” campaign.  A respectful conversation helped clarify concerns with commitment to have broader consultations in future campaign development.

August 2015
  • CEED Family Consultation Survey (opportunity for improved resources): IEDAction promoted the Victorian Center of Excellence in Eating Disorders survey by asking parents and caregivers to complete the surgery to help them develop an early intervention resource package. Many members from around the globe participated by voicing their ideas of what is needed in terms of early intervention based on their experiences. what worked and what did not in their pursuit of caring for a person with an eating disorder.

September 2015
  • Suicide Prevention Week:  The risk of dying from an eating disorder by suicide is not part of the conversation of many suicide prevention hotlines and groups.  Rates of suicide among people with Eating Disorders are undeniably high. Action: IEDAction members asked the American Suicide Prevention Foundation and other suicide prevention organizations via FB, twitter and personal email to include screening questions regarding eating disorders in suicide risk assessments, and to take steps to be able to immediately refer to evidence based treatment should an ED be a possibility.  Outcome:  A few suicide prevention groups, including Lifeline (a national suicide hotline in Australia), Mind (a mental health charity in the UK), Samaritans (the main suicide helpline in the UK), Grassroots Suicide Prevention (a suicide prevention nonprofit in the UK) and the Center for Suicide Prevention in Alberta, Canada, agreed to list eating disorders as risk factors for suicide.

  • Hunger Strike at SLU(American university): A member of IEDAction, whose daughter attends St. Louis University, brought to our attention that a hunger strike by students, faculty and staff to protest adjunct faculty wages had been held at the university. The member advised that the university knows that there are many students on campus affected by eating disorders and also that many of their alumni are employed at McCallum Place, a nearby eating disorder treatment center. IEDAction members utilized Twitter to express concerns to both St Louis University and McCallum Place about students essentially being asked to not eat to support a wage increase for professors. In addition, the member who brought this issue to IEDAction's attention contacted McCallum Place. The Assistant to the Director was appalled and said she would send out an email to all staff to alert them about the hunger strike at the university. The member also had a very productive dialog with the Assistant VP of Student Development at the university, who was equally concerned about students being asked to not eat to protest professor wages. As a result of this conversation, the member feels confident that there will be no future hunger strikes at the university.

October 2015
  • MOM March USA and Canada & Lobby Day USA. Along with NIED, Canadian members of International Eating Disorders Action and Eating Disorder Parent Support gathered at government buildings in several provinces in Canada and US Capitol on October 27, 2015 to bring awareness to eating disorders and ask for better treatment.  Presentations were made, signs were displayed and members of government visited the March.  Members in the USA spoke with representatives about the Anna Westin Act.

  • National Eating Disorders Association Conference (NEDA). Members of International Eating Disorders Action travel from around the country to attend the National Eating Disorders Association Conference 2015 in San Diego October 1st - 3rd.
November 2015
  • Members of IEDAction and the larger eating disorder community tweeted and posted on the FB of The View about the inappropriateness of the comments and concerns about making light of deadly diseases.  Outcome: An on-air apology was issued and the story was picked up by the press (i.e. people.com, etc.).

  • The Renfrew Center & Gloria Steinem:  At the most recent Renfrew Center conference in the USA (one of the oldest and most established treatment centers) there were some questionable choices in their conference platform and speakers. Famous feminist Gloria Steinem was their keynote and linked EDs with feminism and 'gender prisons' and a rebellion against social injustice. Members tweeted and posted on the Facebook Pages of both Gloria Steinem and Renfrew to let them know that we are not in the Dark Ages of ED anymore, that the data and research on genetics, biology and evidence based treatment saves lives; that EDs don't just affect women; that we can no longer tolerate pop psychology and dangerous messaging. To date, there has been no response from are free or Ms. Steinem.

December 2015
  • IEDAction members along with the advocacy community brainstorm holding a global “World Eating Disorder Action Day” to be held June 2, 2016.  IEDAction will serve on a Steering Committee with 14 members from a diverse collective of eating disorder advocacy organizations across the globe.

  • International Eating Disorders Action members have started to take action in response to the strategy put forth by celebrity chef Jamie Oliver which he claims will protect the health of British children.  Members have sent concerns via Facebook, twitter, e-mail and shared current information, data and position statements. We are insisting that they review the data and evidence before venturing into dangerous territory that is NOT recommended by any of our leading global health authorities. http://internationaleatingdisorderadvocacy.blogspot.com/search/label/BMI.

  • ​​IEDAction mentioned in Eating Disorders: Journal of Treatment and Prevention, a peer reviewed journal in an article by a leading respected eating disorder professional addressing our concerns about conflation of body image with eating disorders as psychological illness.

  • Twitter campaign to insurance companies – over the course of the fall, three members of IEDAction and EDPS have treatment coverage denied by insurance companies.  Several members took to Twitter and started a campaign to get treatment coverage.  In all three cases, the treatment being requested was covered.

  • Whole Foods Market Action: US based health food grocery store engages in fat shaming by offering benefits to staff with lower Body Mass Index (BMI) sparking a massive social media backlash.  WF continues to defend their incentive program by saying that they give employees the option to use BMI or waist-height ratio.  Members have sent tweets and posted on Whole Foods FB stating that BMI is not a useful measure for assessing the health of their employees (as noted by Centers for Disease Control, USA) and has potential negative repercussions among employees who are predisposed for developing eating disorders. To date, the company has defended its policy.  This action was started in October 2014 and is ongoing.

Friday, December 4, 2015

Concerns about Jamie Oliver's strategy to weigh kids in school

International Eating Disorders Action members have taken action in response to the strategy put forth by celebrity chef Jamie Oliver which he claims will protect the health of British children.
Jamie Oliver demands children are weighed each year at school to end childhood obesity

Members have sent concerns via Facebook, twitter, e-mail and shared current information, data and position statements. We are insisting that they review the data and evidence before venturing into dangerous territory that is NOT recommended by any of our leading global health authorities.

The Skinny on BMI Report Cards
EDC: BMI Talking Points
Pediatrics, 2009 Nihiser: BMI in Schools
Trading Health for a Healthy Weight: Pinhas et al case series
Facts and Concerns About School-Based BMI Screening

Guidelines for Childhood Obesity Prevention Programs
Position Statement: AED Opposes BMI Reporting and Fitnessgrams in Schools

Additional articles on school-based BMI screenings:

On 2 December 2015 at 21:43, International Eating Disorder Action <iedaction.global@gmail.com> wrote:

Dear Jo,

Thank you so much for reaching out to us . I'm copying my colleague at
IEDaction Jennifer Denise Ouellette as well.

As you are aware we have been concerned about the increased focus on
working with children in schools to provide information on obesity and now
on the statement by Jamie Oliver on in school weighing. Of course we do
understand that communities and countries are concerned about the health of
their children - and that wholesome foods are important.

However we are very concerned about the approach taken to achieve impact.
Research shows that weighing kids in schools and implementing anti-obesity
and weighing kids in school can lead to INCREASED rates of obesity and
eating disorders. It can do more harm than good .

In the USA, Arkansas has done anti-obesity campaigns in schools since 2002.
It has led to increased rates of obesity and eating disorders triggered at
younger ages. The CDC does NOT recommend weighing in schools.

Kids actually NEED more Fat and calories to prep for their growth spur. And
based on longevity the optimal BMI range for an adult female is 25-29 the
current "overweight" category. So we need to be careful in designing
programs to do no harm and reflect research.

We would very much to dialogue with you - we represent a large group of
parents, carers and affected people.


Amy Cunningham
International Eating Disorder Action

On Thu, Dec 3, 2015 at 6:02 PM, Jo Creed <jo.creed@jamieoliver.org> wrote:

Dear Amy

Thanks so much for writing.  You are right which is why no-one is being blase about this and why Jamie has explicitly said that the issue needs to be tackled with great sensitivity.

We absolutely appreciate your concerns on this issue, and that it is a very sensitive issue. 

As you'll know, the National Child Measurement Programme (NCMP) is something that already exists and currently takes the weight and height of children as they start school and leave school. This should be done in an anonymous and confidential way. This data is hugely important in getting nationwide statistics which are then used for public health.

This data can also enable those carrying out the measurements to determine whether children have maintained a proper weight or are becoming, or have become, either overweight or underweight. While the data is logged in an anonymous way and not shared with the children or others in the school, there is a way for the school nurse to see if a child has become overweight or underweight and can therefore discreetly speak to the family in order to proactively help to address the issue. 

The NCMP as it is now devised is not there to demonise children about their weight and we would not be backing something that did. The point in Jamie's obesity strategy about expanding this programme is so that statistics can be gathered through children's school experience. Therefore it can be understood what is happening (currently in the UK 1 in 5 kids start primary school overweight or obese, and 1 in 3 leave primary school overweight or obese) and it also allows an opportunity to intervene if needed in order to support children in being the healthiest weight they can be.

We would never want to stigmatise any child or create any reason for eating disorders, but rather ensure that kids are happy and healthy.  It's clear that a lot of work needs to be done to get this right.

Best wishes,

From: Amy E Cunningham <amy.in.dar@gmail.com>
Date: 3 December 2015 at 17:20:26 CAT
To: Jo Creed <jo.creed@jamieoliver.org>
Cc: International Eating Disorder Action <iedaction.global@gmail.com>, "jdeniseouellette@gmail.com" <jdeniseouellette@gmail.com>, Peter Berry <peter.berry@jamieoliver.com>
Subject: Re: Weighing children in school
Greatly appreciate your response the opportunity to dialogue.

I understand your and Jamie's desires. Our concern is that there is no scientific evidence that what you are promoting has the desired benefit.  I'll share studies with you here - one of which shows that parents did nothing even with info and in fact children's diets did not improve.  We also know that eating disorders (which have the highest mortality rate of any psychological illness) can be triggered by inappropriately addressed school health programs.  The US Centers for Disease Control does not recommend BMI at schools.  The Academy for Eating Disorders has strong guidance and cautions for implementing programs and a wealth of data showing that weighing/BMI has no basis in the scientific literature for success.  The Eating Disorder Coalition in the US has successfully reinforced CDCs statement.

Schools and many of us are grasping for some solution to our perceived epidemic (I acknowledge there is a need to both ensure the health of our kids genetically predisposed to ED as well as obesity) however approaching it with an intuitive approach rather than data is very dangerous.  Sadly nurses and volunteers aren't well trained to address health holistically - and thus can do far more harm than good. Or at minimum nothing changes as the data suggest and that is a real waste of resources.   

I would be very interested to see any data showing that school weighing works in helping kids develop overall health.

And in working with you to develop a more holistic approach to developing and maintaining health. ​I'm attaching some documents here for your team to review.

Warm regards,Amy