Guest Post: Caveat walker–Why ED charity has lost the plot

It’s very rare that I do guest posts here at ED Bites, but occasionally I do make an exception, and this is one of them. The post stemmed from a discussion at the ED Bites Facebook page, and after reading Holly’s eloquent thoughts and views on the subject, I asked her to explain them in detail here. Hers is a voice I wish there were a hell of a lot more of in the ED world. I hope you enjoy what she has to say! –Carrie

Tomorrow morning, more than a few people I know will be walking laps around the track at a local high school. The majority of them will have, or have recovered from, serious eating disorders, but they won’t – presumably – be walking to burn off the final remnants of last week’s Easter dinner. Rather, they will be participating in one of many recent fundraising events held across the country on behalf of NEDA, i.e. The National Eating Disorders Association. I, for one, will not be joining them. Permit me to explain.

I have been aware of tomorrow’s walk for several months. As an individual with an eating disorder, as well as something of an (admittedly armchair) eating disorder activist, I follow a number of ED-related blogs and Facebook pages. Yet my feelings about NEDA have been mixed – to say the least – for some time now. I’ve yet to fully forgive their regrettable, although fortunately brief, 2011 partnership with the STOP Obesity Alliance, and as a scientist by training, I take issue with their overemphasis on the purported role of mass media, waifish models, and the other usual suspects in the causation of what are, by all accounts, highly heritable, biologically-based illnesses. And so, while it is true that I do “like” NEDA in the contemporary, social media sense of the word, I am hesitant to say that I “like” them as an organization, if you catch my drift.

All of that being said, I have watched with interest as an increasing number of friends and acquaintances (most of whom I’ve met through treatment), as well as some of my former treatment providers, have popped up among the roster of registrants for tomorrow’s walk. Several of them have, impressively, raised more money than any other local participants or teams. Despite my misgivings about NEDA, I must admit that my initial response to witnessing their enthusiasm to fundraise for such an obviously personal cause was, “Great, good for them!” I considered walking myself, actually, although I ultimately realized that both my health and academic load would render doing so an impossibility. I even felt some remorse about this fact until yesterday afternoon – precisely – when a sudden burst of insight managed to penetrate the over-caffeinated, overworked, and arguably undernourished reaches of my harried graduate student brain.

Like many great insights, it began on The Internet, most likely in an attempt to avoid some other task that should have taken precedence over the rabid following of hyperlinks down a rabbit hole of righteous indignation. I found myself on Facebook – surprise! – staring at yet another post promoting a friend’s participation in tomorrow’s walk. I can’t say for sure what changed this time around – perhaps some fledgling neuronal connection finally sprung to life – but all at once, something clicked.

As mentioned, I have a science background, and I follow blogs like ED Bites fairly religiously. Consequently, I’ve become familiar with the current body of research – and the regrettable lack thereof – surrounding the causes and treatment of eating disorders. I know, for instance, that research funding is markedly disproportionate to the actual prevalence of EDs, and that there are presently no empirically-validated treatments for adult Anorexia Nervosa. With this in mind, I found myself compelled, yesterday, to take the short trip from my friend’s Facebook wall to NEDA’s homepage, and then to their 2011 Annual Report. Call me naïve, but I had long assumed – as I assume many do – that NEDA was a key contributor to eating disorder research activities. Alas, I was in for a surprise.

Reading through the report, I learned that in 2011, 77% of NEDA’s total expenditures – $1,672,926 in all – went toward “Program Services,” or non-managerial expenses. While this does represent a relatively small sum for a leading nationwide charity, eating disorders are notoriously underfunded in most respects. So thus far, no major quarrels.

The paradigm shift of sorts occurred when I looked more closely at what NEDA’s Program Services actually entail. For brevity’s sake, I won’t go into detail (you can read about them here), but essentially, they encompass support and referral hotlines, educational toolkits, and – predictably – plenty of programming around media literacy. All of this is fine, of course. But I was, frankly, aghast to discover that to date, NEDA has allocated zero percent of its programming expenditure to research funding. Zero. Zero as in the notorious “size zero.” Zero as in the number of known causal links between media exposure and the development of a clinical eating disorder. Zero as in the number of empirically-validated treatments for adult Anorexia Nervosa. Zero.

By this point, I am feeling up in arms, which for me is not an unfamiliar state (I did a lot of eye-rolling during “assertiveness” groups in treatment, if you hadn’t guessed as much). But I must emphasize that, in reality, this has very little to do with NEDA itself. As a private charity, NEDA is wholly entitled to operate under whatever modus operandi it sees fit. I should also note that NEDA has, in fact, recently launched a research funding initiative, and has raised approximately $90,000 to date, although none of this has thus far been allocated in the form of scientific grants. So while I’m not really angry at NEDA, I am angry at the whole damned proverbial System. Maybe I was angry all along, but it simply hadn’t coalesced to the point where I could identify, clearly, the source of my discontent.

I’m angry because I live in a major academic-medical research hub and have, over the past two years, received some of the best ED treatment money can buy. And yet for all of that money and time, most of the care I’ve received still falls under the umbrella of “complementary and alternative medicine,” because there’s simply nothing else out there. I worked, for over three years, in the field of Autism Spectrum Disorder research, and thus became familiar with another national disease-advocacy organization, Autism Speaks. While I am thrilled that AS granted over $25 million in research dollars in 2011, I am angry that no comparable nonprofit raised even a fraction of a percent of this amount to fund research into the causation, prevention, or treatment of eating disorders – which kill up to 1 in 5 sufferers – during this same period. I am frustrated that for all of the celebrities who have bravely shared their struggles with EDs in recent years, not one has lobbied before Congress for increased NIH funding, or launched a new private research initiative. Where in the hell is our Michael J. Fox?

I am beyond angry that by the time I wake up tomorrow, someone else will certainly have died as a result of their eating disorder, and yet there still will be no one speaking unequivocally from a national stage about ED genetics, neuroscience, the importance of early intervention, Family-Based Treatment, or much of anything besides the evils of Photoshop and the ill-defined need to “raise awareness.”

Above all else, I am angry – and saddened – to know that by the time I wake up tomorrow, many brave and compassionate women, all of whom I have been blessed to welcome into my life, will be heading out to that high school track with the commendable aim of making a real difference in lives of other sufferers, yet almost certainly unaware that the money they have raised will not support the types of programming most likely to make such a difference. I will, of course, cheer them in their efforts and applaud their own literal and figurative steps toward recovery. But even if I could – no, I would not walk beside them. And spoken as a wannabe activist, I have to say that that’s a damn shame.

Holly J. Arthur is currently completing her Master’s degree in Mind, Brain, and Education at the Harvard Graduate School of Education. She previously coordinated community outreach efforts for Autism Spectrum Disorder research studies, and plans to pursue a career in the field of health communication. She can be reached at hjarthur@gmail.com.

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22 Responses to “Guest Post: Caveat walker–Why ED charity has lost the plot”

  1. Wow. Imagine a similar situation with cancer?! I have another problem with charities raising money for medical research though, which is purely ideological (and I’ll admit, completely pragmatic).
    Individuals shouldn’t have to campaign for money to conduct scientific research for two simple reasons
    1. Any health service worth its salt should fund research into the most effective and economic treatments, and then treat their patients using an evidence based approach. (with all the usual caveats about applying trial data in the real world etc) A failure to do this is a waste of taxpayers money, and a failure to provide healthcare.
    2. The power of a group to fundraise and lobby for research doesn’t equate to the public importance of a disease, nor should that in itself influence the direction of research. Again, using cancer as an example: millions of people raise money for research, and lobby government to provide treatments. However, barely any money is spent on preventive approaches, and the efforts of individuals takes the pressure off the institutions who should be taking responsibility for conducting and directing the research the population needs.
    I’m not saying we shouldn’t listen to sufferers, or that I don’t have a voice as a patient as well as a medic.
    But it worries me that society will fund some blue skies research because it sounds impressive while basics of public health research get buried. And it worries me that vocal activists for physical illnesses can influence policy, while mental health remains ignored.
    Rant over :$

  2. Gaby Matthewman April 8, 2013 at 2:32 am

    Excellent blog post and well stated. Out of interest, is the recently formed Global Foundation for Eating Disorders (GFED) a start in the right direction? I did post their web link with a comment concerning the need for research which will include treating adult’s as well as children. Perhaps we need to begin focusing on their efforts more widely in the field?

    Mission & Aim of GFED as follows:
    GFED has been carefully designed to fill a gap in the eating disorders field. GFED focuses on providing funds for scientists to improve current treatments and disseminate best treatments to the millions of patients with these illnesses. We are especially interested in the application of recent advances in genetics, neuroscience and technology to cure eating disorders.

    • Hi Gaby –

      I must confess that I was not aware of GFED prior to reading your comment, but looking over their webpage, they do seem to quite an exciting new organization to watch. Their emphasis on clinical/translational research is really refreshing, and they have a really estimable (to say the least) set of ED scientists on their board, so all of that is great news.

      My only concern – and I don’t even know if concern is the right word, necessarily – simply surrounds the matter of visibility. I may have gently bashed the notion of “ED Awareness” in my post, but as far as advocacy/funding organizations are concerned, awareness OF said organizations is crucial. GFED looks like it has really great potential; I only hope that they are able to grow their media presence in a way that will allow them to meet the necessary fundraising targets and establish a reputation as a nationally-known ED charity. Ultimately, I think that the best way to do this would be through some kind of celebrity endorsement. It sounds cheap, in a sense. But on the other hand, it’s a proven strategy. Investing funds early in the game in PSAs, billboards, and the like would seem to be a wise strategic move, as well.

      And incidentally, if anyone from GFED happens to be reading this and is interested in accessing the consulting services of an enthusiastic and passionate up-and-coming health communications specialist (potentially on a volunteer basis) for aid in the development and implementation of a media outreach strategy, well, my contact information is listed below. (Hey, it’s a tough economy and I’m trying to transition careers. Strike while the iron’s hot!)

      Best,
      Holly

  3. Thank you Holly. You may not realize how much people like you and Carrie who research and report significant data for families like ours, have and will make a difference in our future. You are our leaders and our future.

    • Thank you so much for your kind words and suppport, Lisa. In a sense, I suppose I *am* a part of a family like yours, although I might guess from your comment that you are the parent of a child with an ED? In that case, I can only say, THANK YOU. I, myself, often wish that I had had a family that became involved in the early detection and treatment of my ED. While there’s little use crying over the proverbial spilled milk, I do think that it might have made a world of difference, especially given what we know know about FBT. So kudos to you for all that you do, and best wishes to you and yours in continuing fighting this fight.

      Best,
      Holly

  4. Laura Collins April 8, 2013 at 7:09 am

    THANK YOU HOLLY & CARRIE!

    It is time for more of us to speak up about this. The ED advocacy world is young and disconnected – and internally divided. It is difficult to question anything when there is such a need to ally together to get things done – but we must.

    Advocacy isn’t necessarily effective or harmless just because it is well-meaning. We need common principles and that will take challenging some of the assumptions out there and some of the advocacy.

    • Thank you so much, Laura! It’s really a gift to receive your positive feedback, particularly as you represent such an incredibly important rallying force in the call for evidence-based treatment.

      I agree with you that the advocacy world is divided; this is something I’ve come to realize only recently, as I’ve really begun to dig deeply into not only the scientific research, but the online forums and communities, the ED blogosphere, the damnable “comments sections” on ED-related articles, and so forth. On the one hand, I’m tempted to say that this is a flat-out shame. But on the other, I also try to see the good in it. Friction and, yes, even anger can be constructive forces for growth, if channeled appropriately. And fortunately, that’s largely what I see happening within the ED-science blogger community, the FBT community, and among grassroots ED activists in general.

      Best,
      Holly

  5. Kelsey Wallour April 8, 2013 at 7:46 am

    Wow, talk about a wake-up call! If NEDA is not contributing $$ to research then we are indeed in a dire situation. Thank you Holly for being brave enough to write this post, and to Carrie for realizing that it needed to be written.
    As always this site is a breath of fresh air for eating disorder territory – have a great monday!

    • Hi Kelsey –

      In fairness, NEDA apparently is making an effort, going forward, to increase its research-funding efforts, and a commenter below pointed out that they have actually granted small amounts of money to scientists in recent years. So I do want to be cautious in not misrepresenting or disregarding the efforts they HAVE made in this area.

      That being said, I totally agree with your assessment of the situation as being “dire.” And like I stated in my piece, I don’t really fault NEDA. I think the fact that NEDA isn’t funding research in any significant way (because let’s face it, a few hundred-thousand dollars doesn’t go very far when you’re running a modern academic laboratory) is emblematic of a larger systemic problem. Essentially NO ONE is adequately funding ED research, including the NIH, at least in comparison to other diseases, including those that are less common or have lower mortality rates.

      However, while I do feel that NEDA is free to set its own agenda, I must admit that I think that it’s a downright shame that the vanguard ED advocacy organization in the US has not placed research at the very top OF its agenda. NEDA speaks from a position of relative power; they are the top name in ED advocacy and could be doing so much more with their brand recognition to fuel the search for effective treatments. That is, admittedly, pretty difficult to excuse.

      Best,
      Holly

  6. Thank you, Holly.

  7. Am I the only one who thinks that a walk-a-thon around a track field is a hilarious idea for an ED charity event?
    I’m pretty sure I wouldn’t be the only one who did a lot of compulsive, non-stop walking — usually around in circles! — when in the depths of my ED.
    Shall we have a stand-a-thon next year? It would be a fitting tribute for the times in which our EDs have tortured us for sitting.
    Ok, that’s enough fun for now.

    • Ok, so I did a bit more poking around and it seems my concerns were perhaps misplaced. Essentially this is meant to be a march of a pre-ordained length? We have these other charity events in Australia which involve people sponsering you to walk around Athletics tracks as many times as you can in 24 hours. I thought it was one of those…

      I can see how that might raise visibility (which I suspect is one of their aims — “awareness” and all that?), though I don’t think there is much visibility to be gained when walking around a track vs. being out on a street. That and I don’t think EDs suffer from a lack of visibility, but rather a lack of understanding, and proper research and its implementation. For an idea of what sort of “research” these types of groups do, see Carrie’s post about that ridiculous, supposedly “ED-related” study into lipstick use.

  8. In the past (most recently in 2010) NEDA has awarded a number of 10,000 minigrants to researchers. http://reality.nationaleatingdisorders.org/research-efforts/young-investigator-grants.php

    They are returning to grant at a much higher level. http://www.nationaleatingdisorders.org/feedinghopefund/apply

    Are other eating disorder groups donating directly to researchers?

    • Hi Anon –

      Thank you for posting these links. I must admit that I was not aware of NEDA’s minigrant program, I suppose because this was intended primarily as an editorial vs. a technical piece and I did not do extensive background research during my writing process. However, let me be the first to say “mea culpa” for not doing this digging, as this is valuable information.

      My only real frustration around the minigrants, as well as the new Feeding Hope fund, is the abysmally low dollar amounts of these grants. This isn’t necessarily NEDA’s fault; they’re obviously reliant on donor support, it’s clear that research funding is a relatively new area of programming for them, and (as I mentioned in my post) they really don’t receive much in the way of donations annually compared to comparable nonprofits, which probably has more to do with the visibility of EDs than with NEDA itself.

      Still, for a scientist running a lab, $10,000 is virtually nothing. I’ve assisted in the grant-preparation process, and it takes an AWFUL lot of money to fund a viable research study. Around $35,000 just to pay the base salary (not counting 30% benefits) of one Bachelor’s-level research assistant, for starters. So while NEDA’s past and future grant programs may represent a good start, I still contend that we need to be shooting for “Autism Speaks status,” funding-wise, in order to generate the sheer volume of data necessary to really grow our knowledge-base around the causes, detection, and prevention of EDs, as well as to fuel translational research (i.e. the development of new and, more importantly, effective treatments for patients of ALL ages).

      Best,
      Holly

  9. Jennifer Aviles April 8, 2013 at 11:42 am

    I don’t know where to start with this response other than to say I walked in the Tucson version yesterday. Why? to increase visibility. To provide a shoulder to others who were walking whose family member(s) or friends were struggling with the disease. For exercise. To provide support to the young woman who cared enough to organize the event to draw attention to this set of disorders.
    But to Holly’s and Carrie’s point – in November 2011 I traveled to Washington, DC to attend the F.E.A.S.T. conference. I listed to Dr. Insel and I listened carefully to and highlighted some of the suggestions coming out of the discussion http://www.desertdwellergettingon.blogspot.com/2011/11/report-first-annual-feast-symposium-map_07.html The first day we were captivated by Ruth Sullivan who outlined the work that needed to be done to get to where Autism Speaks is today. Summarized here: http://www.desertdwellergettingon.blogspot.com/2011/11/report-first-annual-feast-symposium-map.html
    I’m noting all of this because the title of the conference was “The Map Ahead.” We have a road map. We know how to effect change. And we can choose to continue to complain about who isn’t doing what or we can start to offer solutions and get going. To do that we need to ask questions and to put our money where we think it’ll make a difference.
    Meanwhile, I chose to put my money and my feet on the ground here in Tucson because Tucson (and Arizona) is woefully behind in providing services (affordable and otherwise) to those with ED.

    • Hi Jennifer –

      First off, THANK YOU for walking yesterday. And I mean that in all sincerity and without a trace of snark. If there’s one thing I believe in, above all else, it’s acting on your convictions and taking a stand in support of that which you feel strongly about. And while I may have some philosophical misgivings about the way NEDA chooses to allocate its funds, I absolutely believe that there is merit in rallying with others in the ED community, supporting those who have struggled or are struggling, and yes, even raising awareness.

      Thank you as well for your link to your blog post summarizing the F.E.A.S.T. symposium. I read closely the description of the “Map Ahead” and the proposed strategies for elevating the ED activism/advocacy community and raising its overall visibility, and I must say that, as someone who tends to think a lot about these things (i.e. community outreach strategies, nonprofit PR and the like), I really didn’t disagree with a single point. In fact, all of it aligned pretty precisely with what I myself would be inclined to suggest both on the basis of my person experience working in that realm, my own intuition, and my academic background re: public understanding of science. As for the question of complaining about the present set of circumstances versus working to effect change, I suppose some combination of both is inevitable. At the moment, I myself am in little position to, e.g., donate to ED-related causes of ANY sort or to take an activist stance that extends very far beyond my laptop. So in this case, a rant, of sorts, was the tool I had at my disposal. But going forward, I hope to be there, boots on, doing the dirty work, and I hope that many others will stand alongside me.

      So in short, yes, thank you for quite literally “putting your feet on the ground,” for blogging and for doing the real grassroots kind of advocacy that can and does make a difference. I hope you enjoyed the walk, and I imagine the weather in Tuscon was far nicer than it was in Boston yesterday, to say the least!

      Best,
      Holly

  10. Laura Collins April 8, 2013 at 4:38 pm

    Jennifer is right that it is all of our responsibility to change this. We need research, we need it to be studying the right things, and we need the data collected to be USED.

  11. Holly, I’m glad this conversation is continuing. Somewhere in the back of my mind I remembered a post by Leah Dean and after sleeping on it, I recalled that Laura posted Leah’s very useful article on how to be an advocate. The article provides a list that I believe is relevant to this discussion. http://www.laurassoapbox.net/2013/02/effective-advocacy.html
    As well, I was happy to learn yesterday that a new organization has appeared that will address research. It’s located in NYC, Dr. Walter Kaye is among those on the advisory board, and it appears there are already funds connected with this endeavor. I look forward to learning more about it – The Global Foundation for Eating Disorders. http://gfed.dev.expandtheroom.net/

  12. Great post, Holly. NEDA is such a frustrating organization on so many levels. It’s so much easier to dismiss an organization that is a complete ripoff, than one that has promise and yet leaves you with that SMH feeling.

    The Klarman Family Foundation also sponsors research grants in *primary* ED science, but nothing on the scale of what Autism Speaks is able to generate. And they emphatically do not fund treatment research.

    As a point of clarification, Ruth Sullivan is a co-founder of the Autism Society (
    http://www.autism-society.org/about-us/), not Autism Speaks. Within the community of people with ASD, Autism Speaks is … problematic. Mostly for failing to involve actual people with the disorder in the organization itself. The Autism Society, in contrast, has people on the spectrum working in the organization as well as an advisory board comprised solely of ASD members.

    I bring this up because one of the important factors in advocacy is the principal that “Nothing about us, WITHOUT US” embodies. Many of us who come to advocate for $_Causes, do so as Allies, not as people who have direct lived experience.

    Allies do best when they remember that if you do something *for* someone, without their consent and input, you are doing something TO someone without their consent. Obviously, when the $_Cause in question involves brain function, this is REALLY FRAUGHT TERRITORY. Frankly, the record for what has been done TO people marginalized by brain diagnoses is REALLY UGLY.

    And with ED the fact that anosognosia is a potential symptom/ comorbidity complicates matters as well. One can look across “Out & Public” recovered people, and see vastly different perceptions and personal understandings about the diseases – think of Jenni Schafer and Carrie vs someone like Courtney Martin, as examples. I am under no illusions that any one organization could possibly represent the experiences of EVERYONE AFFECTED, but having an organization that has room for as many voices as possible is key to making sure that what is done actually serves the people who need and use those services.

    • Hi IrishUp –

      Excellent point about Autism Speaks and their reputation for disregarding the ASD community/not including individuals on the spectrum on their boards, committees, etc. This is familiar to me, as I worked in ASD genetics research and in that area you do bump against individuals who (not unjustifiably) feel disenfranchised by the whole endeavor, don’t regard themselves as having a disorder, and certainly have strong misgivings about the notion of identifying “autism genes” for fear that that type of knowledge will ultimately result in eugenicist-type outcomes. I think that all of those points are valid, although I strongly believe that my lab and our colleagues did excellent, wholly ethical work (and I should also note that we were NOT primarily funded by AS). I am familiar with the saying “nothing about us without us,” as well. Interestingly, in my original comment on Carrie’s FB page, I actually did describe AS as “problematic,” although I was referring more to their managerial aspect. But I agree that they are problematic in both respects, and primarily intended to use them only as an exemplar of the sort of fundraising that CAN be achieved and directed into clinical research when an organization takes an appropriately aggressive, yet warm and accessible, approach to PR and advocacy.

      Your point about the role of anosognosia in EDs and its intersection with activism/advocacy is one that, I must admit, has really piqued my interest. Especially if you go back to the ED/ASD comparison. I think the argument that individuals on the spectrum, for instance, there’s plenty of room to accept someone’s self definition of “not having a disorder,” whereas with an ED, that’s obviously part and parcel of the concomitant brain malfunction. So it raises ethical questions in terms of how treatment is managed, clearly, but yes, you’re correct, also in terms of how we interpret survivors’ retrospective accounts of their experiences, their interpretations re: causality, etc. Which isn’t to say that anyone is WRONG, per se. But it does place different spin on things. Hmm, I’ll be pondering this for a while. Probably for the same reason I’m writing such a lengthy comment – to avoid doing homework 🙂

      Best,
      Holly

  13. Write more, thats all I have to say. Literally, itt swems aas though you relied on the video to make your point.

    You definitely know what youre talking about, why throw away your intelligence on just posting videos tto your
    site when you could be giving us something informative to read?

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