For years, I ate very little, and didn't really have a problem with it. I also tried to eat healthy and avoid foods that gave me indigestion, and at my most extreme, ate nothing but grass-fed meat for a while. This made me feel better at first, but in the long run it gave me even worse indigestion. And on top of that, over the decades I was getting progressively more and more run down. Very long recovery times for any novel exercise, and a tendency to burn out easily.
It turns out I was eating disordered. I am big boned and was never that thin (I once dipped down to BMI 18.4 but was usually in the 21-23 range) but was undermuscled and weak. Not surprising given I was sometimes eating less than 1000 calories a day, and generally averaging 1500-1800 calories a day, including sugar binges. My basal temperature was quite low.
I started resting and refeeding in March 2014, and joined the forums at Matt Stone's 180 degree health. When I ended up in pain after a few days, from trying to do too much during recovery, I followed a link on those forums to Your Eatopia, which is dedicated to people recovering from eating disorders.
For a long time I got a lot out of the YE forums. Having a supportive environment and lots of good information as to what to expect/what is normal in refeeding made a huge difference. However I started having problems as early as July 2014, when for some reason the site owner, Gwyneth Olwyn, posted research supporting the False Memory Syndrome Foundation (scroll down to the memory section). One paper she referred to, by RJ McNally and Elke Geraerts [2009. A new solution to the recovered memory debate. Perspectives on Psychological Science, 4(2):126-134], essentially tried to resolve the "memory wars" by suggesting that no one would ever forget serious trauma, but they might forget the minor events they weren't traumatized by that just didn't make sense at the time, like, as the site owner suggests, a creepy uncle acting weird. This theory only makes sense if you ignore the well-established existence of dissociative amnesia and recovered memories for severe traumatic experiences, in war and the Holocaust as well as on the domestic front, something that has been documented for about a century now, and has been mentioned even earlier in various texts (see email quoted below for links). What I don't get is that this issue doesn't even have anything to do with eating disorders. Her main point was that a therapist should never go digging for dissociative amnesia when someone has an eating disorder under the assumption that eating disorders are caused by traumas. They aren't. Eating disorders can be triggered by trauma, but they can also be triggered by going on a diet. I agree with the site owner that therapists should treat the eating disorder by treating the eating disorder, not by looking for forgotten trauma. I also think that it's bad therapy to go digging for forgotten trauma even if it may exist.
I was also having problems with the site owner making casual references to inaccurate and offensive stereotypes about autism in places where it was irrelevant. If you're autistic, you know the drill. For example,
. . . autism is not a condition lacking in an emotional landscape, rather it is a variation on the usual development of theory of mind.
(also quoted here)
She gets into the theory of mind stuff in more detail in an earlier post, describing the Sally-Anne test, then going on to say
Social anxiety and other forms of anxiety disorders are common for those on the autism spectrum disorder. It is understandable that those with a delayed or impaired development in theory of mind will develop social anxiety as we depend heavily on our ability to understand our thoughts and feelings as distinct from another's, in social situations. Given that most with autism spectrum disorder who interact in social situations (i.e. high-functioning) are not intellectually impaired, they can identify that they are missing something in social circumstances but are completely at a loss as to identify what it might be.
The theory of mind nonsense was debunked for autism a long time ago. I am not going to explain here, just wonder why she even mentioned it in the first place, in a blog entry about anxiety and eating disorders.
And then there was this:
. . . we certainly all register micro-facial movements and feedback to our chatter through the facial expressions of those around us (with the possible exception of those on the autism spectrum).
This is the one where I wondered why she mentioned autism and not blindness. Blind people aren't so good at facial expressions, either, though they probably aren't distracted by reading lips as autistic people may be.
I wasn't going to say anything about the autism stuff on its own because why bother? You can't stop everyone from repeating this nonsense any more than you can stop everyone from saying being fat is automatically bad. You have to choose your battles, and it wasn't worth getting into conflict with the site owner over this.
So I was having problems with some elements of Your Eatopia, but muddling along, since there was so much good information there, and so much positive energy from the other recoverers that I really wanted to be around.
Things didn't come to a head until a thread in the private forums in late January 2015, in which I suggested that if another poster were going to take a self-defense course, she might be better off going with a brief intensive course designed for women's self-defense rather than a more conventional martial art with classes going on ad infinitum. Or at least that's what I was trying to say. (People vulnerable to eating disorders are also vulnerable to overexercising and crashing that way, so we do need to be careful. I've done it so many times myself.) The site owner deleted my comment on the grounds I was recommending a treatment for something without referring to peer-reviewed published research. When I tried to start a different thread asking if anyone else was also having problems dealing with other conditions not really related to eating disorders, the site owner locked the thread and told me to contact her privately.
I am including my email to her below, and will summarize her reply (she might object to my quoting her directly given it was not a public reply). However, I must say I am disappointed by the lack of transparency on her part and that is the main reason why I am posting here.
I should point out that this email is different from what I would have said on the forums. I was going to wait and see what other people had to say before deciding what to say, but I was not looking for a fight, more a set of guidelines. Once restricted to an email, I decided to say everything up front. Might as well.
Here is my email.
I posted publicly in case others had also been having problems. But I have no problems discussing this privately either.
1. For the record, Model Mugging is not a combat sport. It is a short course in self defense primarily designed to help women recover from sexual assault and prevent future assaults. And I did find one paper looking at the effectiveness of a similar course (undoubtedly based on model mugging) which I cited later in the same thread. Here it is again: David WS, Simpson TL, Cotton AJ. Taking Charge: A pilot curriculum of self-defense and personal safety training for female veterans with PTSD because of military sexual trauma. Journal of Interpersonal Violence. 2006;21:555-565.
It is unfortunate that so little research has been done in this area.
Also, there is a world of difference between saying PTSD is "best treated with" CBT and EMDR, implying that there are no other treatments worth looking at, and saying that CBT and EMDR are the best treatments available among those that have been researched, implying that there may or may not be other effective treatments, but the research hasn't always been done.
2. My problems on YourEatopia began last summer when you posted inaccurate information about dissociative amnesia on this blog post: http://www.youreatopia.com/blog/2014/7/29/whether-you-ever-want-kids-or-not-or-already-have-them-repro.html
I felt like I'd been punched in the gut. I was unable to do a literature review at the time because of the stress. It wasn't until December that I was able to do an online literature review (you can google "spoon theory" if you don't understand why it might take so long). It took very little time to find information documenting the existence of dissociative amnesia for serious trauma. By then of course it was far too late to post a comment on that thread, even if such a comment had been welcome.
See also Jennifer Freyd's articles on trauma and memory - she wrote quite a lot in the '90s on this subject.
Freyd, Jennifer J. (1994). Betrayal trauma: Traumatic amnesia as an adaptive response to childhood abuse. Ethics & Behavior 4 (4) 307-329.
Freyd, J. J. (1998). Science in the Memory Debate. Ethics & Behavior, 8 (2), 101-113.
Middleton, W. Cromer, L. & Freyd, J.J. (2005). Remembering the past: Anticipating a future, Australasian Psychiatry, 13(3), 223-233.
I'm sure there's lots more. That's just what I found online that I was able to get through.
I am still upset that you chose to cite a paper (a theoretical paper, too) that is favoured by the False Memory Syndrome Foundation, and that you kept the reference in even when I protested. You said "Elke Gehaerts and colleagues I think have happened upon a novel framework for the discussion of memory retrieval of childhood sexual abuse. Rather than circling the drain with false memory proponents on the one hand, or repressed memory proponents on the other . . . " Um, no. The memory wars ended in the '90s, with the vast majority of researchers accepting the existence of dissociative amnesia, even if the mechanisms involved may not be understood yet.
Normally, when someone cites research favoured by the FMSF, I get the message that they are simply not willing to believe in amnesia for serious trauma. I understand that. It's a stressful issue. But it's not science. And it makes it a lot harder for trauma victims to be around that person.
So I was triggered by that last summer, and revisited the issue this winter when I finally did the lit review, and was still thinking of it when the Krav Maga post went up. Which is why I misread the original post and assumed trauma. *Which is why it might be nice to have forum guidelines for discussing of comorbids. Because I may have gone too far, regardless of whether or not I discussed a treatment that worked well for me.*
3. This is less important, but you have made many small side comments on autism in your blog posts that have been inaccurate. It is not your area of expertise, obviously, and equally obviously, no one can be an expert on everything, but it riles me that you add in these little inaccurate comments about autism when it isn't even relevant. One comment that was accurate was the observation that autistic people have a harder time reading people's faces. True. But so do blind people. So? Why mention it?
I am really tired of autism being the metaphor-du-jour of modern life and wish you would leave mention of it out unless it matters. The part where there is no correlation between autism and eating disorders is relevant. Any relationship between autism and ARFID is interesting. The rest? Completely irrelevant.
What really bugs me about all this is that if you took most references to autism out of your blog posts, and also any discussion of recovered memories (other than obviously no therapist should treat eating disorders by trying to recovery memories of abuse, since there is no relationship between trauma and eating disorders, but even if there were, that's bad therapy), it would not take anything away from the blog posts. And it would not alienate or trigger readers.
I sincerely hope you do leave these out of the book I hope you write.
What is the procedure for discussing disagreement over comorbids? I can't do a lit review every time you say something wrong (that matters) in a blog post, and don't want to be the bad guy going after you either. AND, I do not want to be the person who keeps letting her personal issues intrude on someone else's forum post.
I also do not want to have to leave YourEatopia, but if this continues to derail my recovery, I may have no choice. Disordered eating is far from the worst problem I have right now, but it matters, and I do want to recover. Even if that means leaving the internet for a while to avoid triggers.
Her reply was, essentially, "my way or the highway". She said she put a lot of thought into choosing the FMSF-favoured paper on amnesia and recovered memories, and that the research I cited was a fringe view by a small group of people. (Huh? Reminder: the theory she cited only works if you ignore an entire class of well-documented data. It's possible a significant proportion of scientists who do not specialize in trauma do not believe in recovered memories, but I think it is impossible to do good work in trauma research while ignoring so much data. The "small group of people" specialize in trauma research.) She wondered why I didn't just leave back in July. (I needed the support? I wasn't sure what to do? All the reasons people don't leave unsupportive environments right away?) She offered to refund me the $5 I paid to rejoin in October (a new fee to keep out unsupportive people). I haven't taken her up on it - it's only $5. She objected to taking out references to both recovered memories and autism, even though I pointed out that neither subject was relevant and would cost her nothing in terms of getting her points across. She also said if I objected to something in particular she said about autism, I was to cite peer-reviewed published scientific research. Well, I did that already, with respect to recovered memory. I spent quite a bit of time reading research to make sure I was informed, and it didn't work this time, so why would it work in the future? Also, anyone who knows anything about autism research/politics knows that there's a lot of peer-reviewed published research containing negative inaccurate stereotypes about autism.
We did not discuss this, but more recently I discovered that Elke Gehaerts, the second author on the recovered memory paper, has had a related research article from 2008 retracted, at the instigation of her co-authors. The data was too tidy and there was concern that something had gone wrong in the data analysis. Unfortunately her original data is not available to other researchers (it's either long gone or she's withholding it - I'm not sure which) so there's no way to be sure what happened. This retraction casts a shadow on some of her other research since the same data pattern appears in some of it. (Save your original data at all times! And share it freely with other researchers! Including your co-authors!)
I would like to say that as far as I know, the basic tenets of eating disorder recovery in Gwyneth Olwyn's MinnieMaud model seem to be ok. They're probably over-simplified in places, but I can live with that. I haven't read much of the research yet, and may change my mind later, but for now, I support MinnieMaud, and the existence of a site where it's agreed that all participants accept the basic tenets in order to facilitate healing. It's the other stuff I have a problem with. And the lack of opportunity to actually discuss the science, instead of just having to take her word for everything.
Science generally does much better with open discussion than with authoritarian control.
Your Eatopia blog library (most posts, grouped by topic)
Junk Food Science (scroll down for links on right for obesity paradox posts)
Another article on set point, plus some more links at the bottom
Update, May 2015.
I went back to YourEatopia this afternoon while bored, and found this reply to my concerns. Basically she's saying that she thinks I'm not desensitizing to past trauma enough. She missed the point. I'm more worried about future problems. The kinds of problems I am likely to have when people use misinformation like the kind she posted against people like me, as they will, often (e.g. with inaccurate stereotypes about autistic people) thinking they're doing the right thing. Problems like not being believed when I'm telling the truth. Like being denied access to resources. Possibly even having resources I already have taken away from me. This is not an unrealistic concern.
Must be so nice to be so oblivious.