Carrie has posted what I believe needs to be a rallying call for us all.
The eating disorder world's dirty little secret
It is time for us to call "bullshit" on the certainty that so many are peddling and ask some serious questions. After all, when we choose treatment or participate in treatment we're assuming that those offering services believe in them and that they have good reason. We're operating on faith that there is some basis, some grounding to a recommendation.
That's why it is so terrifying when we visit two different clinicians - sometimes even on the same team - and hear completely different things. How can we believe one and not the other? We're not shooting craps or buying a lottery ticket. We can't split the difference or use an average, here.
One of the goals I set for our 2011 F.E.A.S.T. conference was that we call out the fact that the "Map" is mostly uncharted. This was not just the usual statement of "the data suggest" this was us trying to convey to families the truly scary truth that so little is known and most of what we're offered is based on nothing but good intentions. To me this isn't a pessimistic view of research but a rallying call: we need to AT LEAST use what data we have to help guide us and we have to DEMAND more data and we have to HOLD ACCOUNTABLE those who resist that sort of questioning.
As much as I like to drone on about things like the data to support Family-Based Maudsley Treatment, for example, it is only great data as compared to the NOTHING ELSE out there. Same with CBT. I'm ready to harangue you any day of the week on the role of weight restoration but there's so little research to help guide that so even if I told you what the top ten clinics in the world are I would have to also tell you that no three of them do the same things when it comes to weight restoration. If there were clear answers it would stand to reason that the top clinics would agree on them, right?
And yet the biggest problem isn't the lack of clarity at the top, it is the fact that most patients don't get treatment guided by ANYTHING. That is why people like me are so frustrated and, yes, angry at the pushback against evidence. We're not trying to clean the slate, we're pointing out that the slate is largely empty.
I want to thank Carrie for raising her voice to tell the truth. I'm cheering.
Like Carrie and Laura - I'm jumping up and down about the 'rubbish', 'crap', whatever you want to call it, being fed to families and sufferers in the name of 'treatment'. For early intervention of AN, and even BN, the evidence-based answer is Maudsley FBT. The alternative? Nothing. Nothing. That is all you need to remember. But even when parents know their child needs Maudsley FBT they get fobbed off by 'health professionals', like this Canberra know-it-all beauty to a loving step-mum this past week: 'oh we do this maudsley approach but we thought it will not suit your family as 'J' is with ther mum and not in a family unit with her dad and you.' Just in case that health professional reads this - let it be known that Maudsley FBT works in divorced families, single parent families, all sorts of families. Oh, oh, so much to do. So looking forward to our 'At Home with Eating Disorders' conference in Brisbane next May ...ReplyDelete
There is absolutely NO WAY that FBT would ever have worked for me and my family, and so I remain somewhat ambivalent.. This is not because my family are/were abusive or 'enmeshed' in any way... I come from a lovely, loving family. However, my anorexia nervosa (AN) manifested atypically and there are shared family traits that would have made understanding one-anothers' points of view very difficult. It was very difficult for everyone to remain calm.ReplyDelete
As a scientist I am, of course, in favour of evidence-based treatment of disease. But in terms of the evidence base for FBT, the major caveat is the way that ‘treatment efficacy’ has been measured: using EDE. There are limitations to the use of EDE as a measure of treatment efficacy in treatments where patients are under strict surveillance (as in FBT) and EDE is not a helpful tool for assessing recovery from AN, and in particular, restricting AN without significant body image issues (as I had). EDE is biased towards fat-phobic EDs. To recover long term, a person needs to be able to manage their ED on their own, which means identifying triggers, recognising and acknowledging that one has an ED, and actually desiring recovery.
What I ultimately found helpful was to be treated by a professional who viewed me as a whole person and with whom I established a strong therapeutic relationship. I didn’t have just AN alone, but co-morbidities that fed into the illness. Re-feeding was a vital first step, of course, but what has been most helpful has been longstanding follow-up therapy - for co-morbidities and to teach me how to live in the world without fear.
Some families clearly do benefit from FBT, but many don't. This is no 'fault' of the family, including the patients with the ED. I am not aversed to treatments that involve an eclectic mix of (non-evidence-based) therapies. I know that some people are negatively critical of the idea of (e.g.) equine therapy, but I actually think it would be a great way of focusing the patient's mind on something else other than themselves and their difficulties. One of the most helpful things I did in my own recovery was to get a couple of rescue kittens. I knew I had to be well to look after them, even though I didn't care much about myself. Raising these sweet babies gave me a role. And they were such fun! I actually started to find some pleasure in life after years of depression. I was able to see the 'bigger picture' of life.
I agree with ELT. The best thing for my recovery, is focusing on everything else in my life and trying to develop my life outside of my eating disorder.ReplyDelete
There's no one medicine or treatment that works for everyone. The best drugs work for ~60-70% of people. And that's for fairly straightforward things, like statins for cholesterol. There's absolutely no way FBT would work for everyone. Absolutely no way. It is foolish to think it will, and it is also not helpful for those of us who would have never benefited from it.
CBT also is not something I'm interested in. Regardless, no treatment studies are perfect. The metrics they use to assess what works and what doesn't doesn't give us a complete picture. Moreover, I think the biggest limiting factor is the sub-population used in these studies.
Try doing FBT/Maudsley in ethnic minorities, for example, or immigrant-families (like mine). I'm willing to best that the efficacy would drop dramatically.
I'm *all* for evidence-based treatment (my favourite blog is www.sciencebasedmedicine.org). But, it doesn't help anyone, to push forward an agenda that just one way of doing things is the right way, or that, in the face of anything better, it should be the thing we all do.
I really hate when people tell me what recovery is and isn't. It is whatever the hell I want it to be, for me. I never cared about weighing myself, and never had an obsession with it. But I still like calorie counting, for example. I don't even think of it as an ED thing, I just like numbers and keeping track of things. I love data you can graph, and look at trends, and do stats (probably why I'm in science). But I've often been told, to properly "recover", I need to stop doing that. What? Why? I usually count after I've eaten, it never determines what I eat, it helps me with knowing if I've eaten enough, and often motivates me to eat more, as I realize I haven't, etc.. But, for the most part, I just love seeing different trends, co-relating it with different times in my life, etc. It is fun. I don't need someone telling me that means I'm still very sick. Things are disorders and problems when they negatively impact one's life. This doesn't.
Likewise, it is not helpful for those of us who would've never been able to do FBT or CBT (this is not covered by OHIP, but psychodynamic therapy, which has benefited me tremendously, has). The thing with complex psychiatric problems is that it is useless to study a large, heterogenous sample, to figure out what works what doesn't: different subgroups need different things, and benefit from different treatment modalities. Let's not forget that.
Tetyana, you are, quite simply, misunderstanding me.ReplyDelete
No one is saying that everyone should do FBT. No one is trying to prescribe it to everyone in any situation. ALL I am saying, all ANYONE is saying, is that when considering options look at the data to support the options. If there is no data, you need to know that. Not that you can't still choose that, not that our health systems shouldn't supply them, not that they should be done in a rigid way.
For a certain population, FBT appears to work not just better but MUCH better than the norm. It should be considered.
Just like penicillin saved countless lives, it was just one tool. It didn't work for everyone and some had a poor reaction to it. Its availability led to some other problems. But we still need to consider it against the options.
We DO need to define recovery. We DO need to research efficacy. We DO need to call out the fact that most treatment is based on nothing but good intentions. People are dying, needlessly. We need to call this out.
My understanding is that there ARE groups who are working on those individuals who do not respond well to therapies such as FBT and whose illness carries over into adulthood; for example, Prof Janet Treasure's group at IoP in London. A lot of their research is attempting to determine the characteristics of such individuals and to develop more effective therapies. This is good news.ReplyDelete
With all due respect I don't think you can know if FBT works in a family unless you try it. A good FBT therapist looks at the family and cultural dynamics. No two families are alike. My daughter's pediatrician told me that FBT would be too hard to do-how did she know? She didn't interview my family and knew very little about us-she had met only myself and my daughter for 10 minutes. I can't even imagine where we'd be if I had listened to her.ReplyDelete
Tetyna, I know of ethnic family minorities who are using FBT succssully-I have met them.
I think we need to be open to all possibilities.
To Anonymous, I don't doubt that it works for some families. But it wouldn't work in cases with severe mental illness on the parental side, for example. I'm glad FBT worked for you.ReplyDelete
Laura: I think my reaction was a bit knee-jerky, because I'm kind of tired of being told that, well, unless I tried it, I don't know FBT doesn't work. (Believe me, it wouldn't have, I'd go into detail but I'm not anonymous and I don't want to give out personal details about my family.) I agree that if there's no research, it should be known. Particularly if people are paying big bucks for it.
I think researchers should define "recovery" for their studies, that would make it much easier to compare from study to study, but, of course, recovery is different for different people.
I'm still not sure where these super convincing studies are, though. I'll look, of course, but everything I've come across seems to suggest it sometimes works a bit better. I'm not convinced about CBT working spectacularly for anyone with very restrictive eating disorders.
I do think we need to be open to all possibilities. But, and I guess this might be difficult to accept from a parent's perspective (I am guessing), harm reduction is also an approach that works for some. It works for me.
Tetyana, I agree with you. The evidence for FBT and CBT don't tell us everything we need to know. They only tell us all we DO know. And you should look up the evidence: it's startlingly good compared to "treatment as usual."ReplyDelete
No one - or at least no one I know - would say that FBT works for everyone or works out of the manual without clinical skill. Not all families are in a place to do it. What we know is that on a population level based on the evidence it has double the chance of bringing about remission in the population studied. Even double isn't great, frankly. But this is a terrible illness and given the choice I'll take double.
And yes, harm reduction is not something I am prepared to accept. This is not just a parent view, though, I know many clinicians, researchers, and especially fully recovered people who were once told harm reduction was the only choice left feel the same way. It may be the only option an ill patient may be able to choose, but I think it is a failure of law and custom and clinicians and families to choose it. But this is my opinion and not one based on having been in this position as a mom, so my perspective is limited.
I believe every patient can recover. I believe YOU can recover. I don't blame you for making that choice, I just wonder that it might not be the one you would make if we could magically deliver you to one week free of your eating disorder.