Thursday, October 11, 2007

I just don't get it

It is just shocking to me that so many people misperceive and fear family-based treatment.

I'm no dummy: I know even FBT is no panacea. It won't cure everyone. But it cures a damn sight more folks than anything else we've got. And a lot quicker, too.

So what's the problem? We don't advise against penicillin because some people are allergic to it, do we? We don't dismiss Prozac because hey, it doesn't work for everyone.

So why are people so dismissive of Maudsley? I'm talking about people who haven't worked with it, who are going only by what others say about it.

Maybe it's like a generic medication--there's no big money to be made on it, so there's no incentive to fall in love with it.

But as Daniel Le Grange said to me recently, "We're not doing very well by our children." FBT helps children and adolescents, no question about it. The statistics are very good--80 to 90 percent of those treated with it are still recovered after five years.

FBT doesn't get into cause. It doesn't have an opinion, so to speak, on psychodynamic issues. It rather neatly sidesteps them, at least for phase 1 of treatment--weight restoration.

Is there anyone out there who can truly argue with the need for someone who is severely malnourished to gain weight?

I just don't get it.

30 comments:

carrie said...

Harriet,

FBT is only shocking in comparison to all of the psychobabble about EDs out there for the last, oh, century or so.

If, in any other situation, a person allowed their child to starve, protective services would (rightly) be called in. Just because it's a disease called anorexia is no different.

I'm not saying that parents who don't use FBT are uncaring or neglectful- most parents I've met are extremely kind and loving. And I think that might be part of some personal resistance to Maudsley by parents, that eating is so distressing to their children. I hate having to give my cat pills three times a week because she fusses so, and that's over with in 30 seconds. Ditto for clipping the little dear's nails.

As well, many people with AN are otherwise high functioning. It's hard to believe they can't eat because they can get all A's. They're smart. They'll eat, right?

Wrong.

Anorexia is an illness, and the sooner we start treating it as such, the better.

Rachel said...

I don't doubt the effectiveness of FBT for adolescents with ED. In fact, in light of the often outrageously expensive inpatient treatment programs, FBT is a much-needed alternative.

So, why are people dismissive of it? I don't dismiss it, but I do have concerns, which you already summed up:

FBT doesn't get into cause. It doesn't have an opinion, so to speak, on psychodynamic issues.

Restorative nutrition and the treatment imminent physical dangers are paramount, of course. But I don't think treatment ought to end there. I know you and I differ on this, and we'll probably continue to differ, but since you asked, I'll offer my opinions.

I firmly believe there is a reason why girls and women develop these disorders, which may include social, emotional and familial phenomena, as well as physical/emotional abuse, dieting, genetic predisposition, poverty, and related disorders like ADD. EDs stem from myriad and complex causes, which we haven't fully unearthed. To dismiss these factors is to do a grave disservice to the ED patient. Yes, malnutrition exacerbates eating disordered behavior, but even in cases where disorders are brought on by dieting, I think we ought look at the reasons which led the person to begin dieting in the first place.

I'm not saying we cast blame, but an understanding of these issues is necessary to prevent re-occurrence. Have any studies been done on FBT beyond five years? Eating disorders can often lie in wait and resurface much later.

I also think the treatment plan to be problematic for adult sufferers and for those whom family issues play a role in disordered behavior. You don't have to be exceptional parents for FBT to be effective, but nor can you be an unconscious contributor to the disorder.

You mention that psycho-dynamic issues aren't addressed in Phase 1. Are they addressed in later phases?

mary said...

There are families who don't know how to say "no" to their children even if they now have a disease and need someone to tell them they can't starve.

There are lazy families, families who are so used to experts teaching and caring for their children that when something goes wrong they want it fixed by the experts.
Some might not have the confidence in their own abilities to help.

There are fragile parents, those who crumble at the thought of having to see their child suffer or be unhappy. While I know that stronger parents do not enjoy this part they know it's a necessary part of getting from here to there and they do it because they trust their instincts. They can also trust the process thanks to the parents who've gone before them.

I don't think the parents who can't do FBT are bad. Not at all. I am reminded of Helen Keller's story and how Anne Sullivan had to take her to a private place in order to teach her what she needed to know to live a full life. The parents weren't bad, they simply couldn't deal with her squawkin' and gave in to her behaviors rather than being tough. Sometimes tough is what's needed. Sometimes tough is the kindest most gentle thing a parent can do. Sometimes giving them over to another is the kindest thing as well.

I think it's wonderful that you can see that parents can do this Harriet. I agree that when FBT can be used it needs to be the first choice. We also need medicine to support this when it's possible by showing our kids no matter the age that when we are willing to support we are the best option they have. There's a lot of talk about us trusting the treatment team but where's the trust for us? It would be great to have a DR. approach this with the attitude that "your family wants to help you and you need to trust them". That's what's missing today.
I believe FBT ,or even family involved if it's IP/residential, gives the person with an ED the very best chance at regaining independence the quickest and gives them the knowledge that they can ask for help anytime they need it.
I just don't know if we can FIX them quick enough to help everyone that needs to know they can't sit on their hands and wait. We need, IMO, groups of parents wherever we can put them who will support parents through this. I know if my neighbor was in need I'd be there in a heart beat. Right now all most parents have is their Dr. so hopefully the first approach will be based on knowledge. Some people never check the internet. They put all their faith in their medical team, so it better damn well be good!

marcella said...

I realise that I'm not the person you wanted to reach with this Harriet, but that's not going to stop me :-).

I thank Mary (yet again) for her wise and kind words and would agree and also assert that immediate nutrition and FBT are NOT the same thing.

Yes, immediate nutrition is the AIM of FBT, but as Mary and Carrie have said, some families (mine included) cannot deal with the distress and dangerous acting out involved so it is sometimes not the RESULT.

Immediate nutrition is also the aim of the hospital or IP placement in all of the places I've heard of in this country. Although people ARE discharged at unhealthy weights, are allowed to relapse with no useful follow up after the placement, are told "it's your choice", they are never not fed while actually IN a specialist hospital placement paid for by the NHS.

In reply to Rachel's question, yes, psycho dynamic issues are very much dealt with in the later phases of Maudsley. In my experience, one problem is that co-morbid conditions are NOT, and getting Eating Disorders Professionals and generalist psychiatric services to work together is nigh on impossible.

Probably the best bet is to look at the work of people like Walter Kaye who ARE interested in cause in order to achieve better treatments. Physically banging heads together is more tempting but it is probably not going to endear me to either side.

Tracey~ said...

Ladies,

Great points and further questions to delve into in this thread!

Another charming comment I've heard from many re the MM is "Yeah, but when do you turn Maudsley OFF?", and that question comes from two directions: one, is when does the sufferer really, (many don't believe this happens, that the family "just can't do it" but the "professionals" who have "been doing this for a LONG time"- another fave comment of mine- can!), take over his/her own eating, naturally, intuitively and normally/healthy? The other is that parents will get too entrenched and be too overbearing to make this possible for the later stages of recovery- well, hello, that's why it's so damn vital these parents get the support and coaching they need to indeed help make this happen!

Or that families that utilize, or are lucky enough to find affordable, qualified, and close MM practioners; or for those who are just flying solo without a "team" are just so much better, i.e., smarter, educated, wealthier, you know, just "perfect" parents/people... I guess, restating the "special" category you alluded to, Harriet; and that MM is so "controversial"- pleaaase!

Continuing to apply these comments and statements, without continuing to provide the statistics/facts, which I think Rachel does bring to light, and I believe LeGrange and Co are in the continued efforts to provide, etc., is needed to keep the focus, support, and validity alive and purposeful, along with effective long-term success and training.

And it also would help to decrease, or perhaps eliminate those clinicians who are truly dead-set against anything outside of IP/OP for ED's- period, continue to blame and manipulate families/carers, as well as being very antagonistic towards MM/FBT without any reason(s)/evidence other than it being threatening to their careers, arrogance, requiring drastic change in thinking/practice; and perhaps getting some retraining/licensing to make this a reality, or at the very least an option! Is this again, the issue of MM just not being financially feasible in the long run for hospitals, providers, etc.?

I guess choice would also be great in this area, since we are a country with bountiful choices abounding and overloading every inch of our lives. If there are going to continue to be these seemingly two camps of thought, theory, and practice within treatment protocol, then there should definitely be BOTH options immediately and readily available for families deciding on either one.

And I'm talking about expensive, least to show results, but clearly not a first-choice option for many, especially with younger adolescent sufferers IP/OP -residential nightmares, (pardon my bluntness), or MM-FBT.

Marcella makes a great point that we have been experiencing directly over and over with our "team" re the ED pro's and general psychiatric svcs inability to work, back, more cohesively, consistently, and TOGETHER. There is quite a bit of herky-jerky difference, and sometimes even blatant mistatements to the contrary, then disagreements with both ends that it mostly puts the family and sufferer in the middle and confuses the hell out of us even more.

What worries me incredibly as well, still is that so many of these residential centers are coining the term Maudsley within their publications and brochures- hello Rogers, and it is simply a word to entice and create a blind-trust for desperate parents who really will never know what's going to happen to their child once those doors are closed, and more often than not the folks in charge of their care have absolutely no clue what Maudsley is or even how to "utilize" it. So the idea of profitability for IP/OP programs plays front and center with their idea of what recovery means.

In addition to this is the continuing idea that involuntary group "therapy" sessions, and daily living and eating with ED patients is somehow beneficial for young adolescents vs working with the individual family support system, coaching, and continued care done on an individual patient-family basis. Not rounding them up, separating them, unless there is obvious danger and safety issues; warehousing them, and applying a one-size-fits-all-dog-retraining practice of "earning privileges", punishments, and "consequences" modality which really just dehumanizes any treatment approach. Where is the current data of success for this draconian practice these days anyway?!

Lots of things to continue thinking about... thanks for the pick-me-up this AM, Harriet!

ciao~

cq said...

I hope I do not tread on any toes by posting here.
One thing that I have not seen addressed by MM advocates, is that MM is relatively new in terms of treatment programs.
Some sufferers and families were battling with AN for some time before FBT was devised.
If health professionals have for the duration of Sufferer X's treatment focused on the "underlying issues" at the expense of weight gain, this can exhaust some families, and at the point where MM and the work it entails is suggested the family is just too exhausted.
I think that this may lie behind some people's reluctance to give MM a try.
Any thoughts?
cq x

Jane said...

Rachel,
Yes, issues ARE addressed in the later two phases of Maudsley. In the second phase control of eating is gradually returned to the recovering person. Phase 3 focuses on encouraging healthy adolescent development once the physical ED symptoms have abated. As you might imagine that is likely to vary quite a bit by individual. Making peace with cultural messages, working out strategies for managing anxiety or perfectionism, handling comorbid conditions like OCD and depression might all play a part. Some people, especially those a short course of the illness and no comorbid illness, might have an easier time than others. If "family issues play a role" FBT offers an opportunity to address them (if there are difficulties in the family it's hard for me to see how excluding them from treatment can create healthier family function.)

Harriet,
It seems to a core misconception that Maudsley is some sort of feed-em-and-forget-em approach. My sense is that this completely off-base assumption that is a main source of Maudsley objections. Well, that and reading Hilde Bruch et al.

Harriet Brown said...

Rachel,

You don't know what causes or contributes to eating disorders. Neither do I. Neither do advocates of FBT. Neither do the folks at Remuda or Renfrew or anywhere else.

And you don't need to know to treat them. In fact, it's downright criminal to make that a necessary prerequisite of treatment.

Maudsley focuses on what matters: effective treatment. And, cq, it's not exactly a brand-new treatment. It's been used in the UK for more than 20 years with very good results. Not perfect, not good for every family, but the best we've got.

You seem determined that parents cause e.d.s, or at least contribute heavily to them, consciously or otherwise. You're entitled to your opinion. But it's not based on any facts I've ever seen or heard or read.

As Jane points out, your conception of FBT is off-base. It's hard to object to something when you're not clear about what it entails. Jane has summed up Maudsley in a nutshell, but if you'd like to read more, there are lots of resources at maudsleyparents.org.

Also, I don't understand how sidestepping the "myriad and complex causes" of anorexia does ed patients a disservice. The real disservice is focusing on psychodynamics while the patient *is literally starving to death.*

cq, you may be right about the timing of when FBT is suggested. That's why I wish it were the first-line treatment rather than the treatment of last resort as it so often is.

Christine said...

I don't think anyone is arguing against the idea that someone who is severely malnourished needs to gain weight. Regardless of therapeutic orientation, almost all clinicians require that patients undergo some sort of weight restoration, deeming it the crucial first step in the recovery process (psychoanalysis may not, but psychoanalysis in its purest form is rarely practiced in the US today). Mainly, my concern is: I read the literature about FBT and then I read your site and maudsleyparents.org and I don't feel like we're reading the same literature at all.

I read the literature, which says:

"The involvement of parents in the treatment of their AN offspring appears beneficial, but conclusions can only be made provisionally. FBT encourages parents to take an active role in restoring their adolescent's weight and, for now, seems to have some advantages over the more "routine" advice to parents, which is to involve them in a way that is supportive and understanding of their child, but encourages them to step back from the eating problem. However, many aspects regarding the effectiveness of FBT remain unanswered." (La Grange 2005).

Moreover, LaGrange and other stress that FBT has a variety of definitions and applications and works best with young adolescents who have had anorexia less than three years. The studies on which the recovery rate of up to 90% is reported are based very small Ns with recovery operationalized as weight and menstruation restoration. LaGrange even concludes his seminal article by stating:

"However, further exploration in the form of randomized controlled trials to establish the true significance of the role of the family in AN treatment is sorely needed."

Then I read your site and maudsleyparents.org and it sounds like science has proven that FBT is the best thing we've got. That's patently not true. The research says that certain kinds of FBT *may be a fruitful avenue for research.*

Now, when your child is starving to death, I understand that the idea of "fruitful research" is absurd. You want your child to live. You don't have time for more studies. I understand that Maudsley has worked for you and worked for many other families. What I have a problem with is many Maudsley parents waving the banner of science saying that FBT is the best way we have. Science does not say that at all.

Jane said...

Christine,

Maudsley Parents says that "research shows promising outcomes" and cites the available research. See "What is Maudsley?" on the website if you are interested. Maudsley Parents presents the approach as an OPTION that parents may wish to learn about and choose if they think it would work for their family.

Certainly more research into eating disorders is needed. Maudsley Parents strongly supports this and is a member organization of the Eating Disorders Coalition which advocates for increasing resources for ED research. Any suggestion that Maudsley Parents isn't interested in real scientific inquiry and fruitful research is flat out wrong. And offensive. And absurd.

Science does not yet tell us enough about eating disorders because rigorous inquiry into EDs is still so new. The most comprehensive wrapup of ED treatment efficacy does not present a very cheerful picture. Given the current choices FBT looks like a pretty good option.
http://www.ahrq.gov/downloads/pub/evidence/pdf/eatingdisorders/eatdis.pdf
I hope we can all look forward to brighter days.

Indeed FBT does show good results with adolescents who have had anorexia less than three years. As I understand it the shorter the duration of illness the better the outcome in any type of AN treatment. More than anything else this suggests to me the importance of early intervention to minimize suffering. It's horrible to think that three years of anorexic misery is considered a "short duration of illness", isn't it?

Though FBT shows good results in adolescents IMO a 75% 1 year recovery and a 90% 5 year recovery really just aren't adequate IMO. I try never to forget that there are real people behind those numbers. We all need to the best we can with what we know now and do what we can to improve future treatment.

Harriet Brown said...

Um, what she said.

No one, including me, has ever said that FBT is the holy grail of anorexia treatment. It's just a damn sight better than conventional treatment. And I will stand by that.

At NEDA I heard family members with recovered children--*grown* children, by that time--talk about the 10, 12, 14 years their child was sick. As Jane says, we're talking about real people with real lives. We're talking about young women who spent *14 years* suffering. Who didn't have real adolescences, because they were so consumed, literally and otherwise, with this terrible illness. Families whose lives were torn apart forever by dealing with more than a decade of anorexia.

This is not acceptable. I'm all for more research, more funding, more investigation into other treatments and ways. Maybe we'll find something that works for 95 or 100% of people with anorexia. And I will embrace with my whole heart.

Until then, I think FBT is a fantastic option and I want parents to know about it as one of the options--a very good one, in my opinion, but still one of the options.

Jane said...

Sorry for the bad link in my comment above. The report I was referring to was Management of Eating Disorders prepared for Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services. It's worthwhile reading for anyone wishing to understand what we know (and how much we don't know) about eating disorders.

Christine said...

Jane,

Well, it seems we certainly agree that 1) Maudsley is a potential option for some families and 2) much more research about eating disorders is desperately needed.

That said, I don't think you really addressed the points I raised. My problem is that the available research that is cited both on the Maudsley Parents site and Harriet's blog is inconclusive from a scientific point of view. I assume many parents, Maudsely parents included, desire more research. I never suggested otherwise.

I agree that the Management of Eating Disorders book is fantastic and a must read for anyone interested in eating disorder research. It highlights better than I did the problems I have with family-based therapy. First and foremost, the authors couldn't even do a pooled meta-analysis because the studies (of all interventions, not just family-based) operationalized and measured the concepts in very different way. As the authors say about all the AN studies:

"Inadequate statistical power was a common problem among the behavioral interventions in AN, and power calculations were rarely reported. No studies had a pure no-treatment condition, which is appropriate given the gravity of the illness, although “usual” treatment took various forms. Many of these studies had adequate power to detect pre-post within-group differences or differences between no treatment and an active treatment, but few were adequately powered to detect differences across two or more treatment groups."

In terms of family theory, they say:

"Five studies evaluated family therapy in adolescents with AN. Overall, family therapy based on principles of parental control of initial refeeding leads to clinically meaningful weight gain and psychological change. However, the majority of family therapy studies compares one form of family therapy to another form and were underpowered to detect significant differences between active similar treatments."

It goes back to my earlier post: the sample size (Ns), methods, which variables are controlled, etc. What statistical model are they using? What is the comparison group? All of these are crucial questions to ask when evaluating the research. Fortunately, the authors of Management of Eating Disorders did much of that, so we don't need to reinvent the wheel. I can re-state their conclusions: the jury is still out about effective therapies for anorexia.

Does that mean we should throw in the towel? Absolutely not. Does that mean that the Maudsley method doesn't work? Absolutely not. My problem is that several components of Maudsley Parents web site (but not all) and most of what I read on Harriet's blog keep referring to scientific research without giving the audience the full picture of what the research says.

As for me, I *can't* forget that real people are behind those numbers. I want to give those real people the respect they deserve by disclosing all the relevant scientific and anecdotal information so people can make informed decisions about treatment.

BTW, here's a good link to the book:

http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=hstat1b.chapter.14937

Christine

Christine said...

Harriet,
You write in your comment that "I think FBT is a fantastic option and I want parents to know about it as one of the options--a very good one, in my opinion, but still one of the options." I guess I don't read your web site that way. I've read for posts as saying, "I've done my research. FBT is the best treatment for anorexics." I'm countering with "Research doesn't say that FBT is the best treatment for anorexics."

> Maybe we'll find something that works for 95 or 100% of people with anorexia.

But we haven't even found something that systematically works for even a mediocre percentage! I don't agree which the way the studies that purport a 80% plus recovery rate define recovery, but I suspect we don't see eye to eye on the definition of recovery so we will probably just have to agree to disagree.

As I said above, I am very, very aware we are talking about real people. That is why having conversations, not misinformation, is absolutely crucial to me.

Jane said...
This comment has been removed by the author.
Jane said...

Sure, all ED research (not just FBT) is difficult. It's hard to compare studies when there is not even a uniformly agreed upon definition of physical and psychological recovery. There are larger randomized controlled studies going on and I look forward to seeing the results.

That said I think it's worthwhile to consider the available information no matter how small the study. If you want to email me at anorexiasucks@yahoo.com I'd be interested to hear which specific parts of the Maudsley Parents website trouble you.

Harriet Brown said...

Especially *because* each an every one of those case studies, whether they're in a large randomized double blind controlled study or not, represents a real person who is suffering.

Christine, how would you define recovery? You seem to think we would not agree, but I'm not sure why.

I have no scientific definition of recovery to offer. But I recognize it when I see it, especially when I remember my daughter two years ago, and then see her now. Two years ago she was emaciated, depressed, anxious, obsessed with food but unable to eat, OCDish, and seemingly possessed by a demon. She had no friends, no life, couldn't sleep, could barely survive each day. Today she is a happy, healthy, active teenager who's passionate about the things she loves, has friends, does well in school, eats with pleasure and gusto, and loves her life.

If your point is about duration, then no, I don't know if this recovery of hers is permanent. I don't know if that's a meaningful way to think about it. I'll take it for now and for each day at a time from here.

My completely unscientific hunch is that if she can sustain this recovery for the next few crucial years, she will be far less at risk of a relapse later on. But that's just my gut feeling, and who knows?

But I do know that had we gone the traditional route, she would not be where she is today. She would be suffering. And so I am grateful for FBT. And I've seen many other young women (and men) find this kind of recovery, relatively quickly, through FBT.

As my grandmother would have said, what's not to like?

Tara said...

I'd just like to point out that, at least in the U.S., a lot of treatment centers and outpatient therapists do NOT require the patient to eat. They want the patient to, of course, but there is NOT an emphasis on it. They constantly say the patient will choose to eat as soon as the underlying issues are worked through. Meanwhile, the patient slowly continues to die, because: a) it is next to impossible to work through any issues when severely malnourished; b) even if the issues could be worked through before nourishment, that typically does not enable one to choose to eat when they're in an anorexic state; and/or c) there may be NO underlying issues.

This is most commonly happening in outpatient, but also happens in very well known treatment facilities as well, such as the Ridgeview Institute in Atlanta, GA and ... (I hesitate to state because I really do feel like this place helped me a lot, but ...) Remuda Ranch in AZ.

Sometimes, in these type of treatment centers, patients get on track with eating because they want to GO HOME, they're sick of the illness, have the support there they need in order to eat better. But they're doing it in a fake environment and their families have usually learned nothing about helping them at home. Plus, those that are only eating because they want out, typically share a lot of "tips" w/ one another.
For those that never get on track, they're told they're treatment resistant and chronic. And, sometimes, they're even kicked out of treatment. Imagine that - being kicked out of treatment for anorexia because you won't eat! But, of course, only after you've spent several thousands dollars on the treatment center.

Even for the programs that are run better, and for therapists that are insistent the patient gain weight --- the objective is to be able to eat at home. If they're in the hospital, they're not learning that. If they're in the doctor's office, there aren't even meals served (unless it's one of the very rare therapists that does eat w/ their patients on occassion).
Maudsley teaches the parents to do what the staff in (good) hospitals do to get patients to eat.

I spent YEARS learning how to eat in treatment centers. I did it either because I wanted out, didn't like the consequences they gave for not eating, was tired of the illness, had the amount of support I needed in order to be able to, didn't want the treatment team to be mad at me, etc., etc. The problem was ... the second I left the hospital, none of those reasons existed anymore, so I stopped eating again. Then was put back in the hospital again. This went on for over 20 yrs. until some amazing people I work with helped me stop the cycle. I had to go to treatment again, but I think it was the people I work with becoming more educated on how to help/support me (as well as my family learning more - though they haven't taken a real active role - partly, I think, because they were told for too many years they were the ones at fault) that stopped me from relapsing again. I still have some minor struggles, but I've been eating well for over a year now.

My point, I suppose, is that if the whole objective is for the individual to be able to eat at home, then why not start there --- and with the people that will be there with them. Not including the family just makes no sense at all. UNLESS it has been assessed that the family is too dysfunctional.

FBT makes SO much sense, it escapes me why it has taken so long to even begin catching on.

Harriet Brown said...

Tara,

Thanks for posting. I appreciate your perspective.

Christine, I'd like to know what your interest is in all this. Are you a recovered sufferer? Family member? Or, maybe, treatment provider? We've all made our point of view known; I'd like to know where you're coming from.

Christine said...

Jane,

I look forward to those studies as well. While information of any kind is worthwhile to consider, it's also important to look at how that information was gathered and evaluated. That goes for all studies, of course.

You're more than welcome to email me as well at forward_bound AT yahoo DOT com. I hate when people just leave drive-by, anonymous comments so I wanted to put my contact information out there.

Tracey~ said...

Salut,

I don't think there is a parent out there caring for their child in the throws of an ED that doesn't want to continue seeing the push for more studies, research, and improved treatment protocols.

And that includes full access to these options vs being drowned by uncovered/expensive and f/u care that does nothing week to week/month to month, then the only alternative "experts" give is the mantra-option of IP/OP facilities; further confusing, and sometimes deliberately manipulating sufferers and families since the shortfall lies in the fact that there is still no consensus,clear agreed upon data, and consistency within care and treatment on their end.

It's in many instances, the passing-of-the-buck, in this case a human being- again to remphasize that "real person" behind the numbers. More often, than not, too many sufferers and families are slipping through the cracks of clinics, treatments centers, and "professionals" who clearly are fummbling their way through the dark, yet still get paid, carry on starkly outdated and ineffective "treatment" with such blatant recidivism that in any other area of healthcare, ethics protocol, and research there would be clearly a red-flag for redress.

The data, research, and studies are all very vital towards improved and effective care and treatment- no one would ague against that. But I think what is also slowing the progress is this snag in meanings and literal interpretations of "science" and pure analysis, etc. that researchers do keep the focus upon for the obvious reasons- we need the data collected, the studies carried out, to prove or debunk. And my guess is that for somone who is so interested in the pure numbers only is not perhaps dealing with the real, live human being on the other end.

A sufferer is not a number, or a percentage- and yes, it's crucial for those of you within the research, data collection field to keep the statistics, test them rigorously, and peer-review those findings for overall management and continuation of improved quality of care, etc. But not use this "evidence" without continuing to remember human care and healing require a human touch and sensibility.

Many of us as parents don't have time to wait for the "science" to catch up, most of us have had to confront a horrendously draconian medical system that continues to treat ED's much the way things were way back when. Our children don't have time to wait for the rest of the medical "experts" to come to agreement and work for the best options towards recovery doing the least amount of harm to the sufferer- most of us as parents have been-there-done-that and have the battlewounds to prove it.

We're basically waiting while refeeding our children for those of you in this field of study to do your job now, collect the evidence, carry out the studies; and better help, support, coach, educate the rest of the society and the ED profession, and drastically change outdated and useless protocols that keep sufferers and families suffering.

I believe compassionate and driven parents such as Harriet, Laura, and the many, many others who have opened themselves up to sharp criticism, over-judgment, raging nay-sayers deserve our backing and continued support. Without the efforts of these amazing individuals who have started forums, websites, shared their stories, vital information, and continue to do so despite being sometimes misunderstood, justly or injustly challenged, (and I think neither one of these ladies turns away from a good challenge!), they have provided what many in the "profession" clearly continue to NOT provide- HOPE.

We haven't given up on our children, we love them and want them to persevere through this devastating illness, live happy and full lives, and find their path towards full recovery, no matter what- even when the jury is still out on what is the "right", scientifically proven modality towards treatment. I value, respect, and support the work you continue to delve into in advancing improved treatment options for ED sufferers and their families, Harriet. Whether your "facts" are all in order, perfectly outlined, collected, tested, and categorized at this time is not going to affect why we, as parents continue to move forward, going with our instincts, and fighting for better advancements and access to care for FBT/MM applications and support- we know this is the best option for our loved ones.

Peace & Strength~

Christine said...

Harriet,

re: my point of view.

Certainly! Hmm, in a very quick nutshell. I became anorexic at age 10. At the advice of my medical doctors at age 14, my parents were advised to sit with me at meals, encourage me to eat, work with a therapist, etc. I wouldn't necessarily call it Maudsley or FBT; it was before the Maudlsey manual or much information about Maudsley was available in the US.

I gained weight. A lot of my physical symptoms subsided, but the psychological and cognitive issues remained. I learned what I needed to eat and how much weight I needed to maintain in order for my parents to be satisfied that I was recovered. I still restricted, took laxatives and exercised but very secretively. Anorexia is a very very good liar. It lies to your family. It lies to your therapists. It lies to yourself. To root it out takes a very very long time. I became severely ill at 18 and was hospitalized at a small psychiatric hospital that provided treatment for a wide range of illnesses. Had I received the intervention I needed where my family was involved but the treatment focused on me as whole person (and preferably away from my parents for a chunk of time), perhaps I would not have gotten so sick later on. You can do a lot more damage as a 18 year old at college as compared to being a 12 year old kid.

I am in my 30s now. I consider myself, on the spectrum of recovery, close to recovered. For about 20 years, I've been pretty voracious about reading eating disorder literature from autobiographies to clinical study. Currently I'm en route to a doctorate where statistical analysis plays a big role. Hence, I am very interested in the science, specifically methodology, of it all.

I've never been to a hospital specifically for eating disorders (Renfew, Remunda ... all the Rs.) so I can't speak about re-feeding or parental involvement at those places.

Christine said...

Harriet,

>Especially *because* each an every one of those case studies, whether they're in a large randomized double blind controlled study or not, represents a real person who is suffering.

Obviously. That is why I am committed to thorough science to make sure that their stories and voices are heard accurately.

>Christine, how would you define recovery? You seem to think we would not agree, but I'm not sure >why.

I define recovery as being an integrated, whole person. Recovery is transforming your perfectionist, black-or-white, rigid mindset. Recovery is being able to listen to your body, to eat all foods, not ones off a "safe" list. Recovery is where the eating disorder voices are caged, not the sufferer his or herself. Recovery is where you do not engaged in self-injury, binge-purge cycles, drugs etc. Recovery is where you have a viable, evolving self-concept, one where you look in the mirror and you can truly see yourself.

These definitions are experienced on a continuum, of course, and perhaps not even a linear one at that. My problem is that many scientific definitions of recovery define it as weight restoration and/or menses return only. That doesn't even begin to address recovery in my opinion.

I'm not sure what to say about your daughter. You know her intimately. I don't know her at all. All I can do is speak from my experience and that is my own mother would have described me that way at many points during my teenage years and I was far, far from recovered.

There is plenty "not to like" with FBT. I thought I raised some of those points earlier, expressing my hesitation about embracing this kind of therapy.

To encapsulate my hesitation:

1) Maudlsey seems to me about empowering the parent, making sure their voices are heard in the treatment process. I know the third stage is about returning power to the child regarding food decisions and establishing a healthy adolescent identity. That does not equate to empowerment, though.

2) Maudlsey approach seemed to think that once weight has been restored and malnutrition reversed, that the obsessive-compulsive, depression and anxiety is quelled. While starvation does exacerbate, it doesn't always cause those symptoms. For so many people, the weight is restored and all those thoughts are still there. To me, the behavior (starvation) is the last step. To address mainly the behavior seems to be a band aid to me.

3) The deep roots of anorexia are often planted long before starvation occurs. Parents or others stepping in once significant weight loss has occurred can sometimes be far too late, in my opinion.

To be honest, I thought the questions raised in your original post were not rhetorical but a genuine interest in exploring the concerns of those who don't embrace FBT. None of this feels to be a dialogue. I have read your and Maudsley Parents site for many months now. I've learned a lot. I moved from being very anti-Maudsley to being open that in some cases it may be warranted and that the method is ripe for more research. I am sure my thoughts will continue to evolve. You have a very specific position on FBT, on eating disorder prevention, cause and treatment. This is your blog and you can do whatever you like, obviously. But the discussions don't appear to be fruitful exchanges or debates.

Tara said...

Christine,

I'm sorry the experience you had with your parent's help wasn't very beneficial. I'm glad the hospital experience seemed to help you.
This is why research doesn't use personal experience and prefers not to use case studies. It's all so subjective. Both of us struggled for years and years, and are close to the same age as one another. Yet, what you found helpful, nearly killed me on several occasions. I was incapable of addressing underlying issues, and attempting that in the absence of food had me on cardiac units and ICU multiple times.
I'm glad research is still continuing to take place.

I think you may have a misconception about FBT though. Or perhaps I do. But it's my understanding that families using an FBT approach do realize that some of their children experience anxiety, depression, perfectionism prior to the development of AN. And some of them incorporate outpatient therapy, even in Stage 1.
I don't believe treatment centers should be done away with and outpatient therapists for AN all retire. BUT I believe the FBT should be understood and offered just as much as other types of therapy. Actually, in all honesty, I think it should be offered more often, especially for children.

I don't particularly agree w/ your definition of recovery though, and also see it as nearly impossible to analyze in a study. How does one decide if an individual is a "whole person" again, for instance? That's pretty subjective. As is listening to your body and looking in the mirror and truly seeing yourself. Also, your description means anorexics actually have to surpass everybody else in society in order to meet criteria for recovery. There are a lot of people w/out EDs that don't meet that criteria, but that doesn't mean they need to go see an ED specialist. And, there are many w/ EDs that have never used drugs or binged/purged, but that doesn't mean, even before eating a bite of food or getting any type of therapy, that they are well on their way to recovery because they have that aspect taken care of.

This is why it's so difficult to define recovery, and why researchers keep the definition to observable behavior.

However, researchers aren't saying that once somebody no longer falls into the diagnostic criteria of AN that they are a whole person or that they're cured of any personal conflict and fine to go about their way. They're just saying they're not clinically anorexic anymore. That's a GOOD thing. That's a step towards going on with life. It's disturbing that so many anorexics feel invalidated about no longer having the diagnosis.

There are definitely down falls in studies, DEFINITELY ways to improve them, and DEFINITELY, DEFINITELY a need for more of them. But, I think, for those of us recovering from an ED, it sometimes hits too close to home for us to be completely open minded about all of it.

Just my views/opinion/thoughts.

Take care.

Jane said...

Re you hesitations:

1. The voice of the patient is always heard as well. Maudsley is in no way about dismissing the concerns of the patient. Parents temporarily assume control of assuring adequate food intake but the patient continues to have the same freedoms they had before. There is no green light to criticize the patient. Compassionate non-critical support is central to the approach. As my d's doctor put it "We respect your suffering, we don't respect starvation." Where you got this idea about what Maudsley "seems" to be I have no idea. Phase two empowers the patient. Phase three addresses issues that get in the way of healthy adolescent development.

2. No idea where you got the idea that Maudsley says that the first phase of refeeding is enough to insure recovery. Restoring physical health is important for both mind and body but it's merely the first step. Nutrition takes care of the problems caused by malnutrition (and they are very significant problems). Phase 3 might include any number of issues depending on the individual. Maudsley does NOT "mainly address behavior." I can't stress strongly enough that it is not a feed-em-and-forget-em approach. Indeed Maudsley does focus first on nutritional restoration. Since you feel addressing starvation is the last step I can see why the approach doesn't sit well with you. But given the exacerbating effect of starvation of psychological symptoms I think addressing them first makes a lot of sense. In any case I don't think there needs to be an either/or choice between addressing physical/psychological symptoms. Kids who are ill need both--Maudsley doesn't force a choice.

3. AN ought to be treated as soon as it is recognized no matter what what form of treatment. There's nothing about FBT that suggests delaying intervention. Quite the opposite.

Best of luck with your studies.

Christine said...

Jane,

1 &2. I don't think the voice of the patient is always heard, but that remains true regardless of the approach. To me, based on what I have read on the parents site, Harriet's site and by talking to those who have been been through this treatment, I either a) don't generally hear the patient; I hear the parents (with some exceptions, of course.) and b) when I do hear from the patients they have very mixed things to say about Maudsley and the role of empowerment and recovery. I don't necessarily hold that against Maudsley approach, however. Different approaches work for different people for different reasons. Honestly, the theory of Maudsley and how it is actually implemented can be fractured, which I one of the reasons I brought up the need for research.
I used to think that Maudsley was "feed 'em and forget 'em." Through reading Maudsley Parents, I learned that was not the case. That caused me to rethink my position and prompted me to seek out other literature about the approach. I have learned a lot. I am still learning. As for Maudsely *not* mainly addressing behaviors, that may be true, but I don't see it when I read Harriet's site or Parents or other sites. The way the information is presented tells a different story.

I don't think addressing starvation is the last step. I think starvation is the last step in developing an eating disorder. Once starvation does occur, however, it is crucial for re-nourishment to happen immediately so the person can thrive and begin to heal. I think we're in agreement there. I don't know anyone who doesn't want early invention. What I am saying is that one does not need to "wait" for starvation or malnutrition to occur to intervene.

Thanks for the luck! I wish you the best of luck with your continued advocacy. Eating disorders are horrible diseases and it takes many perspectives, including Maudsley, to fight against these illnesses.

Christine said...

Tara,

I apologize. I thought I had posted, but it seems the Internet swallowed it! Unfortunately, my work calls and I can't go into the detail I would like. Suffice to say, most importantly, I am glad that you are doing so well today and I wish you the very best on your journey.

The tricky, horrible thing about eating disorder treatment is that what helps one may kill another. That's why I - and I think you do, too - advocate in presenting sufferers with an array of options, not simply IP here and IP there.

Mainly, my definition of recovery doesn't need to nor should it be any scientific definition. My problem with the scientific definitions is that they operationalized recovery based on physical characteristics. I would like to see recovery measured multi-dimensionally, using depression, self-esteem, self-concept scales, etc. Again, that would not be perfect or even ideal, but it would give us more information.

I'm not sure what you mean by it hitting too close to home. I assumed everyone posting here was here because eating disorders hit close to home. I'm not in psychology or psychiatry, and my research has nothing at all to do with eating disorders. My conclusions about Maudsley are based on information I read and hear.

All the best for continued, sustained recovery.

Harriet Brown said...

Christine,

You keep coming back to objections based on things you read on my site. So why don't you just put my site and its contents aside, and continue your exploration with maudsleyparents.org, with the university of chicago e.d. program site, and with other wonderful resources online and elsewhere. Clearly I rub you the wrong way--maybe it's only because I am a parent who's fairly vocal--and whatever the issue is, I'd hate for it to get in the way of your intellectual understanding of FBT. Because really, none of the things you ascribe to me and my site, over and over, are here in reality, so it's an interpretation/communication issue at this point.

I would also suggest talking to someone, a couple someones, who have recovered using Maudsley. I wish you could talk to my daughter. We went through the whole year of re-feeding with my husband and me on tenterhooks, wondering if in fact she would hate us forever, resent what we'd done, etc. Then a friend of hers developed AN, and I spent weeks on the phone with her mom, explaining about maudsley, which she was reluctant to use. At some point my daughter said, "Please give me the phone, Mom," and proceeded to tell this mom, "You need to do with your daughter what my parents did with me. It's the greatest gift they ever gave me."

Regarding measures of recovery, they are tough to pin down, but what I tried to describe to you is that my daughter is a whole person now. She did not have preexisting anxiety or OCD issues, though some people clearly do, so she didn't have to deal with them afterward.

My hunch about why she is truly recovered and you were not is that maybe you never actually got up to a high enough weight, maybe you didn't eat regularly enough for long enough, maybe your BMI never got up to where it needs to be to promote psychological recovery. This, alas, is a very common story in the world of EDs. You can't "recover" when you're at the lowest possible end of "healthy weight." A starved brain needs more nutrition and more regularly, to reinforce the new neural pathways around food and eating.

I am sorry for your suffering.

Christine said...

Harriet,

I have talked to people, parents and patients, who have undergone FBT. Some believed it saved their lives. Others thought it was dangerous and believe it caused their anorexia to worsen. Others are ambivalent. I am very, very glad that this treatment worked well for your and other families.

As for my own experience, thank you for your kind words. I don't believe the issue was that my BMI wasn't high enough or that the eating wasn't sustained. But that's just my own experience.

I love that you are outspoken. The world needs outspoken women. More information and an open mind need to come with that outspokenness, and I certainly include myself in that camp. I know I often dig in my heels at what feels right, therefore blocking myself from new information and allowing myself to change.

For whatever reason, we are just talking past each other, so I think I will bow out.

I wish you and your family all the best, and I hope all of us continue to fight against eating disorders.

Jane said...

Re measures for recovery I think this is a good start:

Int J Eat Disord. 2006 Nov;39(7):550-5. Links
What is recovery in adolescent anorexia nervosa?

Couturier J, Lock J.
Department of Psychiatry, University of Western Ontario, London, Ontario, Canada. jcouturi@uwo.ca
OBJECTIVE: The principal aim of this study is to describe the types of problems faced in defining recovery from anorexia nervosa (AN) as well as to illustrate the magnitude that various definitions have on recovery rates for AN. METHOD: Comparative rates of recovery from AN using a range of definitions (percent ideal body weight, psychological recovery, and combinations of these variables) were calculated using long-term outcome data from a study of adolescents treated for AN. In addition, a Kaplan-Meier survival analysis was used to model recovery over the long-term follow-up period. RESULTS: Recovery rates varied highly, depending on the definition used, from 57.1% to 94.4%. Using survival analysis, the mean time to remission for weight (>85% ideal body weight) was 11.3 months, significantly shorter than for Eating Disorder Examination score recovery at 22.6 months (log rank = 16.1, p = 0.0001). CONCLUSION: Agreement of definitions of recovery may be dependent on specific goals of a particular study or treatment; however, in order to compare and contrast categorical outcomes, a consistent definition of recovery is needed in the literature. Both weight and psychological symptoms appear to be important in a definition of recovery. (c) 2006 by Wiley Periodicals, Inc.
PMID: 16791851 [PubMed - indexed for MEDLINE]