The FDA recently approved lisdexamfetamine (LDF) for the treatment of the newly minted DSM-5 diagnosis of Binge Eating Disorder. This caused me some consternation and this blog will be as much about my reaction to this news as to the news itself.
The use of stimulants to curb appetite is nothing new. This was a common practice in the 60’s and 70’s and then it was shunned in respectable medical circles because we “knew” amphetamines were dangerous drugs. We also knew that their effects on dampening appetite tended to wear off over time. This is commonly cited as a reason not to be concerned about their use in youth.
I was introduced to these drugs as being addictive substances that were used to create animal models of psychosis. Yet, there has been an expansion of the use of stimulants in the past decade with very little discussion of the possible risks entailed. Their approval for the treatment of “binge eating disorder” follows the expansion of ADHD from childhood into adulthood. I doubt it is a coincidence that this happened at the time when most of the antidepressants went off patent.
In fact, the only thing that I can discern as novel about the new – still patented – stimulants on the market is that they are harder to abuse. That is what lexdexamfetamine is – a tamper proof form of amphetamine. But what is critical here is that there are clear market advantages for the manufacturer – the numbers of people who are potential consumers is greatly increased and the amount of time each person might be encouraged to take these drugs has now gone from about a decade to lifelong. What concerns me is that I do not believe – FDA approval aside- that there has been an adequate reckoning with their risks.
In January, JAMA Psychiatry published an online article, “Efficacy and Safety of Lisdexamfetamine for Treatment of Adults With Moderate to Severe Binge-Eating Disorder.” This is one of the studies that led to the FDA’s approval. In this double-blind 11-week study, about 150 individuals were randomized to receive placebo or one of three doses of LDF. They found that the two higher doses resulted in a statistically significant decrease in binge eating episodes. They report a remarkable low incidence of side effects.
So what is the problem? After all, this is not a situation where people are going to be forced into taking a drug they do not want or think they need. I happen to know how demoralizing it can be to be overweight. And we all know there are long-term health risks associated with obesity.
This is the problem. First of all, the results — although statistically significant — were not all that impressive. All groups improved; the group on the higher doses improved a bit more. Binge eating episode dropped from ~ 5 to 1/week in the placebo group and from about 5.5 to 0.5/week in the highest-dosed LDF group. On average, in the higher group, they lost about 4 kg (~9 lbs) over the course of the 11-week study. The placebo group did not lose weight.
The authors report they are doing a longer-term followup study to see if over time there is further weight loss. I think it could go either way; many people who take these drugs tend to accommodate over time to the appetite suppressant effects (although in this study appetite suppression was fairly low).
We should not lose sight of the fact that this was a drug company sponsored study and they acknowledge the assistance from professional writers. This was a multi-center study with no site having more than about 10 subjects enrolled. These kinds of studies do not have a good track record in our field.
This is the conflict of interest disclosures from this article:
“Dr McElroy is a consultant to or member of the scientific advisory boards of Alkermes, Bracket, Corcept, F. Hoffmann-LaRoche, Ltd, MedAvante, Naurex, Shire, Sunovian, and Teva; has received grant support from the Agency for Healthcare Research and Quality, Alkermes, AstraZeneca, Cephalon (now Teva), Eli Lilly and Company, Forest, Marriott Foundation, National Institute of Mental Health, Naurex, Orexigen, Pfizer, Shire, Takeda, and Transcept; is listed as an inventor on US patent 6,323,236 B2 (Use of Sulfamate Derivatives for Treating Impulse Control Disorders); and, along with the patent’s assignee, University of Cincinnati, has received payments from Johnson & Johnson, which has exclusive rights under the patent. Dr Hudson has received consulting fees from Alkermes, Genentech, HealthCore, Pfizer, Roche, and Shire and has received grant support from Eli Lilly and Company, Otsuka, and Shire. DrMitchell is a consultant to Shire and served as an investigator on a Shire-funded protocol. DrWilfley has received research support from Shire and United Health. Drs Ferreira-Cornwell, Gao, Whitaker, and Gasior hold stock and/or stock options in Shire Development, LLC. No other disclosures were reported.”
So we have an 11-week study that leads to FDA approval and the only impact this has – for after all this drug is already available – is that the drug company can now market it for this indication. In real life, this will not be used for 11 weeks; it will be used for much longer, maybe indefinitely. The study excluded people who have a history of substance abuse although they report one death in someone who abused methamphetamine. The authors acknowledge that there is a high rate of substance use among people who also meet the criteria for binge eating disorder. Undoubtedly, this drug will find its way to people who have problems with addiction. Stimulants are popular drugs for diversion – that is the entire raison d’etre for LDF. In a study published around the same time, researchers surveyed college students on their “non-medical” use of stimulants for weight loss. This means using the drugs when they are not prescribed. The incidence was about 4% in this population but it correlated with other risky behaviors including self-induced vomiting, laxative and diuretic abuse. Common sense and clinical experience tells me that it will be nearly impossible to know who is combining the use of these drugs with other risky behaviors. We already have a diversion problem with stimulants; widening their approved indications will only exacerbate that problem.
And these drugs can cause psychosis. I know this will likely be minimized in the studies. But as noted above, amphetamines have long been used to create animal “models” for psychosis. I am stupefied when colleagues play down this risk; I see at least one student a year who developed psychosis after using stimulants; sometimes after convincing a doctor (often at their college health service) that they have ADHD.
The authors of this study see this as a promising new development for our field. They see as an unmet need the fact that “no pharmacologic treatments for binge eating disorder are approved by the FDA. Additional clinical trials are needed to identify effective pharmacotherapies.” The lead author of this study is Susan L. McElroy, a well-known psychopharmacologist. I have written before about an encounter she and I had many years ago that foreshadowed — more than I could have ever imagined — the future paths of our careers. She was one of the psychiatrists who helped to shepherd in an early blockbuster drug, divalproex sodium, and along with it the expansion of the Bipolar franchise (rapid cycling, irritable mania, Bipolar type II).
I will take it at face value that from her perspective, she has been working to improve the welfare of others and she views her work for drug companies as a noble effort to bring much-needed treatments to people who are ill. She is now working at what looks to be a well-endowed hospital and research center, and I suspect her benefactors believe as strongly in her mission as some of us believe it is misguided.
Jeffrey Lieberman recently published a bit of a rant against those who he characterizes as anti-psychiatry. As I was reading and thinking about this study and my core distaste for it, I wondered whether I am anti-psychiatry. Maybe this is what psychiatry is – a race to find new drugs and new markets. It is hard for me to garner enthusiasm for this. I truly do not understand how psychiatrists of my generation could still be so enthusiastic about approaches that do not seem to have panned out. I do not understand why they seem loathe to question our basic paradigms or why they consider those who do question them to be suspect. I have a strong opinion that our first order of business should be that we put the brakes on. We do not know enough about what we are doing – particularly with regard to the long-term use and discontinuation of these drugs – to allow me to support forging ahead in the way we have done over the past 60 years.
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I have just been working with someone and helping her as she tapered off of vyvanse for binge eating. She had taken part in one of these studies to determine its “effectiveness”. It certainly helped curb her appetite and to lose weight. I asked her what she was eating and she said she snacked here and there. She described feeling very anxious a lot of the time and had difficulty in sleeping.
When I explained that vyvanse is essentially a form of amphetamine and that it is likely to have long term repercussions as well as these side effects she tapered off.
I’m wondering why I had to be the one to tell her. I guess I should no longer be shocked that doctors are now willing to prescribe speed for weight loss and appetite control.
I think it’s interesting to note that there is a new disorder that some are bandying about called orthorexia…essentially focusing on eating “healthy food” to the point of malnutrition. Perhaps they will have a drug for this too?
thanks for reading and commenting.
So much for rigorous informed consent.
I subscribe to Michael Pollan who suggests that due to our disordered food systems, we are all a little eating disordered. We have lost the rituals of eating and cooking food and this has had dire consequences for many. I am fascinated by this topic and was going to write more but it ended up being too off topic for today.
I wrote about this when I started blogging:
People who market these drugs are afraid to let the general public know they are amphetamines. I remember I was shunned many times by NAMI mom-like types on various fora that I am “stigmatizing people who struggle with ADHD” when I quoted the drugs’ own leaflets and let everyone know their chemical names. Apparently telling the truth is “stigmatizing”.
The widespread suppression of nursing in the 50s and 60s was also most likely a contributor to obesity and eating disorders, possibly due to the baby learning to self-regulate food intake early rather than having to wait for someone else to decide when and how much to feed them:
Great article, Sandra! Love to hear your passion coming out!
I’d also add that getting food from the breast is more tiring for the baby than bottle so it has to put some effort into getting it. Plus it eats as much as it needs (unless mother has some lactation problems) while babies who are bottle fed can be easily overfed.
The new focus on orthorexia has been fascinating to me. I get that deeply unhealthy eating patterns, whether it’s junk or “health” food can cause severe mental and emotional concerns.
At the same time, I am surprised there is a desire to label people who eat “too healthy” as having a mental disorder. Should we label a diabetic who continues to eat junk food with a disorder? Should we label people who eat a lot of fast food with a disorder?
Where does it stop? And is it simply a convenient way to market yet another drug for yet another “mental illness”?
Like you said in the article, we’ve already done this in the 60s…uppers for weight control, downers for anxiety, often caused by the “pep pills.”
How does a Big Pharma 11week study equate to “science” and evidence based practice?
I think this gets into a topic that I have a sense of but probably will not do justice to here. I think it arises out of a complex interaction in our culture related to food, culture and body image. But the category of binge eating disorder will capture many – some who will perceive themselves to be disordered and others who do not.
Zyprexa can give you an awesome binge eating disorder (been there, done that). Maybe unhealthy obese “schizophrenics” and “bipolars” will be put on amphetamines to combat their “co-morbid” overeating. Sorry for sounding cynical but I feel like there’s no end to this madness.
And we are the ones called crazy…
Remeron made me ravenously hungry. Normally I have meals on a saucer. On Remeron I would eat plates full of food, four times my normal amount and still feel hungry as I was overeating. It was perverse. I had to stop it.
And it stopped helping me sleep within a week. I trust if this Binge Eating Disorder was around at the time, that I would have rejected it, but often, drugs have the spell-binding effect that leads people to think that the drug isn’t responsible for new symptoms. I really do think that the idea that the last drug started or stopped should be the first thing to consider when new issues come up, and that EVERYONE should know that. All these “comorbid” conditions are hinky.
There’s a great movie illustrating this: “Requiem for a dream”. The story of the mum is pretty heartbreaking.
Btw, their argument for using narcotics for ADHD kids was that people who “have ADHD” react to this drug differently than anyone else. I wonder if they will start to look for imaging studies on obese people to justify that they too have a mental disorder. Sandra optimistically states:
“After all, this is not a situation where people are going to be forced into taking a drug they do not want or think they need”
but I will not be surprised if a few years down the road we won’t have forced treatment of obese and overweight people who “lack insight” and resist treatment. Call me crazy but I’ve seen this movie before.
Doctor, do you think someday, someone will tell the world that indeed some people do receive an enormous benefit from the drugs prescribed by psychiatrists? Do you mention in the articles you write, ever, examples of the wonders, the truly incredible, even breathtaking way drugs have made possible for a person to live a full life, when that proved impossible before the drug was used?
Thank you for commenting. I think many people have written about the benefits of psychoactive drugs. They are widely touted by psychiatrists and they are heavily promoted on TV. Right now, I believe that it is a psychoactive drug, Abilify, that is the highest selling drug in the US. I do prescribe these drugs and I have written about why I do this in other posts. At the same time, I believe that we do not understand the full degree of problems that can be associated wit these drugs. Studies usually focus on short term effects but people are often on them for long periods of time. We are not good at distinguishing between withdrawal effects and relapse.
Thank you very much for your response doctor. It was honest, fair and without any agenda. To mention that you occasionally prescribe psychoactive drugs took courage. Before I posted anything to you, i looked at some of your other posts and articles wondering if you might be one who would. I didn’t find them with a cursory look, but I am not surprised.
Doctor Steinhardt, why do some M.D.s insist that no one can have a trait or disorder or a set of characteristics at the far end of a continuum of attentional capabilities that is called ADHD, when they never examined me or others who have been diagnosed with it by Harvard educated M.D.s? How can a medical doctor say with absolute certainty that I don’t have what I have without an examination?
Steingard–sorry. I didn’t edit that post. I wrote your name correctly but my machine entered the wrong spelling
I am not able to comment on what other physicians did or did not say to you.
You sound remarkably similar to Excedrin, asking the same questions s/he has already had answered many times by me and others on this forum. Makes me wonder…
No one can say with absolute certainty that you do or do not have “ADHD” or any other psychiatric diagnosis, because the criteria are not objective, but are based on clinical judgment and opinion. Hence, two professionals can freely disagree in a way they could not about whether your blood sugar is too high or whether your leg is broken or whether you have congestive heart failure or cancer. Until there is some objective way to test for these “mental disorders” that allows a repeatable measurement that is not subject to personal bias or whim, the diagnosis of mental disorders will remain the collection of voodoo and sleight of hand that it is today. Which means any 5 doctors can diagnose you with any of 5 “disorders” based on exactly the same symptoms, and not a one of them will be “wrong.” Sadly, there is no examination they can do to answer your question with even a modicum of certainty.
“We do not know enough about what we are doing – particularly with regard to the long-term use and discontinuation of these drugs – to allow me to support forging ahead in the way we have done over the past 60 years.”
But of course you seem to care if what you do brings harm to people. I’m quite sure that most psychiatrists couldn’t care less, especially when they realize how much of their money and career are dependent on the drugs. If anything they’ll just blame drug companies for not giving them better drugs, but then go on feeling good about themselves anyway by turning a blind eye to their victims and just focusing on the patients they think are doing “better” on the drugs.
So, patients do better on drugs. That is quite a statement. Shall we talk about them? Does any one on this website discuss those patients and what it means to them to be helped by drugs? Let’s spend the next 3 years digging into their stories and telling everyone about all the ways their psychiatrist’s prescriptions have improved each phase of their lives.
Or, let’s detail the sums of money Whitaker, Corrigan and Berezin to name just 3, profit from each book they sell. Lot’s of free advertising from your donations to this website. Do you think that it is only the dirty, rotten, greedy, corrupt doctors of medicine in psychiatry who ride the wave of this cash killing albatross? It is egregious, morally perverse and disgusting to indict an entire profession for what some may have done. I am related to an outstanding psychiatrist. He wouldn’t hurt a soul knowingly for a million bucks.
When asked to name a doctor who hands out Ritalin like candy, the person who accused doctors of doing this didn’t name one. Most don’t care you claim. Name them.
Ah, so now I KNOW you are Excedrin! I have reported you for your hostile remarks.
I cannot name a Dr but I can say that my local CMHT has refused more than one child treatment because thier parent has refused to give them ritalin.
I’d say that was something akin to handing it out like candy.
Contrast that with another clinic where no diagnosis and no drugs are used for all new patients. Old ones who already on drugs and have diagnosis are offered a choice as to whether continue with the drugs and diagnosis or discontinue. They get help in either case.
Hey ho, this is very off topic of the article though so I will post no more about this.
I didn’t make that statement, but I can tell you that kids in foster care, clearly trauma victims one and all, are diagnosed with “ADHD” at a rate around 4 times higher than in the community. Many I have seen are first diagnosed with “ADHD,” given stimulants, react by becoming aggressive, are then diagnosed with “bipolar disorder,” are put on antipsychotics, and so forth, so that some have 5 or more psych drugs and are breaking windows and beating people up and are being removed from care and put into residential treatment facilities and so on and so on. And it is rare that ANYONE (least of all their various psychiatrists) appears to recognize that stimulants were the starting point for this deterioration and advocate their discontinuation.
Kids in foster care are generally given psych drugs at a rate 4-5 times the general population. This is clearly not because they are “genetically determined” to develop “mental disorders,” but because they are traumatized and the adults don’t know how to deal with their predictably challenging behavior.
When over half of all the teens in Massachusetts’ foster care system are on psychiatric drugs, I’d say they are being “given out like candy,” at least in this population, and continue to be given out like candy, even when they have proven ineffective or even harmful to the youth taking them.
There are, of course, people who feel these drugs have benefited them. They have discussion boards all over the web, many of them partly or totally sponsored by their friendly pharmaceutical company representatives. The kind of stories we tell here are generally unwelcome on such discussion boards. This is a place for people to explore alternatives. If you don’t want to do that, please, find one of the pro-medication boards where you will feel more at home. But don’t come here insulting our writers and posters and demanding that we give your views “equal time.” We’ve been more than patient with you, and you got a lot of very calm, rational, research-based responses to your queries, most of which you seem to have ignored completely or dismissed out of hand. If you’re expecting us to agree with your viewpoint regardless of your presentation, you’ve come to the wrong place. Please, feel free to share references to support your views, but it is less than helpful to have such an accusatory attitude toward people who are just as dedicated as your psychiatrist friend to trying to help people get better, even if you don’t personally agree with their conclusions.
So stimulants screw up peoples nervous systems so much they won’t want to eat or can’t get their brains executive function on track to eat.
Sandra, you said, “I do not understand why they seem loathe to question our basic paradigms or why they consider those who do question them to be suspect”
Actually, as I keep saying on this blog, many problems transcend psychiatry and are entrenched in medicine in general. As one who has been questioning doctors about suspect paradigms, I feel I am looked at with great suspicion. It is extremely frustrating but I can’t give up because my health depends on my being able to do this successfully.
Back to the topic – I have been sharing my experiences with various people about how twenty years ago, I read a book my Carol Munter and Jane Hirshman, called “When Women Stop Hating Their Bodies. ” Basically, their philosophy was that binge eaters should stock up their favorite foods with more than than they could ever hope to eat in one week. The theory was knowing you would never be deprived of your favorite food again would greatly decrease the binging. It seemed radical but it cured my binge eating problem.
Quite a contrast to using stimulants as the solution. A big fat sigh.
Anyway Sandra, I thank you profusely for having the courage to practice in the manner that you do even though it doesn’t make you the most popular person in your profession. It is greatly appreciated.
Many people eat when they are stressed. Fortunately I’m not one of them (else I’d be morbidly obese by now) but I’ve seen it in my own family. Add to that that we live sedentary lifestyles and eat crappy food (most often not by choice but necessity: good food is expensive and sometimes inaccessible: google “food deserts” – it’s stunning).
There are few people who clearly have some genetic deficiency linked to obesity (leptin mutation for instance) but they are extremely rare and can be often “cured” by targetted treatments (e.g. leptin supplementation). Some people have hormonal problems too but that can also be treated with targeting the underlying illness. Everyone else should be helped with promoting and aiding a lifestyle change.
The answer to obesity is not drugs, the answer is healthier lifestyles.
Dr. Steingard, How can a doctor insist someone cannot have a condition when he’s never ecamined the individual?
I don’t believe he can. It is not sound medical practice to do so. As this website says over and over, each of us is an individual who deserves respect and the best that medicine can offer.
As someone who suffered terribly from the inability to focus, and who found help through speed, which has not produced any dangerous side-effects in me, what should I do, deny my experience? It has been life saving. I know many others who say the same kinds of things. Yet, coming to this website where support is offered unconditionally to the bruised and damaged, there is no support, no willingness to debate or discuss ADHD from my perspective. Lots of insults. Lots of mocking and baiting and avoidance. How can that be good?
It seems so odd and at the same time so typical to get kicked in the teeth when I can find no justification for it. I don’t want anyone to be injured by drugs. If anyone has adverse reactions, stop. If a brain is made functional through a drug, without the dangerous side-effects, why not really listen to him and his ultimate triumph to find help?
I think we are talking risks here. Some people drink alcohol in large ammounts everyday and seem to suffer no ill effects. Some of these later on develop liver disease or other problems.
Some people take speed everyday and seem to suffer no ill effects. Some seem to suffer no ill effects as far as they are concerned but those around them find them tiring to be around. Then suddenly they become ill and some die.
That someone has no ill effect in the present does not mean they will not in the future.
There maybe other ways of helping someone with their problems without drugs. Certainly there are for binge eating. There maybe for other problems such as problems focusing. Having helped someone with extreme dissociation, where he went for long walks to get somewhere and could not remember how he got there a lot of the time, and where he could hardly attend to anything anyone said a lot of the time and now he hardly has that problem, I think it is likley that there are other ways of helping people who find it hard to pay attention. I am not an expert in this area though so I could not say for sure. I do know that drug free approaches are not common in psyhciatry and drug approaches are much more common.
The same person who was in a fog a lot of the time tried a kind of speed that he got from the internet, found it great, and then hallucinated a raven in his back garden and had to go to hospital as an emergency to get some major tranquilisor pretty damn quick.
I am not sure why you are on this site as you seem to have found what you want from your Dr’s. This site has almost no influence on people who seek treatment from Dr’s for mental distress, it merely informs them of the opinions of people who find limitations and dangers in the most common psychiatric approaches and treatments.
No one is suggesting that your experience is invalid. You clearly found stimulants helpful with minimal side effects – more power to you! My problem with the tenor of your posts is that you seem to assume that everyone has your experience, or that difficulties are rare and easily resolved by simply “talking to your doctor.” This is not most people’s experience who are posting here.
When you get “kicked in the teeth” is when you make unsupportable statements, like that brain scans can be used to diagnose “ADHD,” and that kids who attend “open classrooms” don’t learn anything, and that you can tell if someone has “ADHD” because they respond differently to stimulants than someone who doesn’t have that diagnosis. None of these things have scientific backing, and people have taken the time to show you the science 0r shared anecdotes refuting your claims. If you want your own anecdotal evidence respected, then you need to do the same with others’ stories, which are all just as valid as yours. When I tell you my kids had full “ADHD” characteristics as kids and were raised using alternative schooling and turned out to be functional adults, I expect you to recognize that there are at least exceptions to your way of thinking. When I give you references documenting that kids who receive stimulant treatment don’t turn out better on the average than those who don’t, I expect you to acknowledge that as factual. When I or Jonathan acknowledge that stimulants do have a short term positive effect on “ADHD” symptoms, I expect you to remember and give us credit for that rather than claiming we said something else.
You seek respect from others, but you are not respectful of others’ viewpoints. We have lots of heated debates here from people seeing things differently than each other. You can do that, too, but not when you dismiss or ignore or invalidate or intentionally misrepresent what other people are saying.
I’d add that although you may have mimimal side effects at present there are long term risks. I do not know how big these risks are but I know that some of them are serious.
The other day I found some kind of advertisement at the top of a page I was visiting that told me “binge eating disorder” was a “real” “mental illness”. Needless to say, I didn’t click on it. I’d like to tell the mental health industry, if I’m going to “binge” anything, spare me your lectures. People are gullible, and the more gullible they are, the more they need counseling. Yeah, right.
On a similar subject, we had a discussion on a Facebook page recently about “healthy eating disorder”. I don’t think it’s in the DSM yet, as is “binge eating disorder”, but it’s been in discussion for a few decades now. If the mental illness industry can make money off it, I imagine they will make a “disease” out of it. On the positive side, if they happen to find a “cure” for life, some of us can manage to keep it in abeyance.
FDA is a joke. I’m beginning to think there has to be a revolution :/.
“We also knew that their effects on dampening appetite tended to wear off over time. This is commonly cited as a reason not to be concerned about their use in youth.”
Btw, that’s an excellent point. So use of amphetamines in kids is OK because the effects on appetite and growth are temporary (supposedly) but it’s also a OK in adults with eating problems because it will teat their “disorder” long-term? Psychiatric logic at work…
Btw, what’s the point of placebo group studying the effect of AMPHETAMINE?
Two excellent points and a very funny cartoon. In a serious way, Irving Kirsch addresses this problem of the “pseudo” blinding of many studies in his work and his book.
Carol Munter and Jane Hirschmann wrote a great book years ago called “Overcoming Overeating” that helped me with my difficult binging and dieting patterns at the time. I have also found Geneen Roth’s books very helpful…I am glad that I stayed away from meds.
Thank you for your sincere, honest reflections Sandra. I wish we had more psychiatrists like you:)
I can’t remember if we had this discussion previously due to my bad memory but I also loved Carol Munter and Jane Hirshmann’s book. Many years, I went to one of their retreats and it was one of the highlights of my life which definitely helped cure my binge eating.
Sadly, you don’t hear much about them or Geneen Roth, whom I am also liked, these days in the era of “drugs being the answer for everything.”
You just know, in your heart, don’t you that this is wrong; that no medicine will take away whatever pain lies within these people; that the knock on consequences of these stimulants will be disasterous; that this is exactly what has been predicited vis a vie the DSM V and creation of catergories; That psychiatry remains in a mess; and that Jeffery Lieberman is either in denial or stupid: perhaps both at once. 🙂
I am a person who has suffered both from severe binge eating and from anorexia, both for over three decades. I first went to a therapist because I wanted help stopping binge eating. It was 1981 and no one had heard of eating disorders. After that all the mental health providers I went to told me they didn’t know how to treat ED, so they’d treat me for something else instead, was that okay? I went along with it.
But all I wanted was some answer, some way to stop the crazy eating. Therapy had no answers at all. I learned this problem that had ruined my life had little do with “poor coping.” I tried to kill myself in utter despair. After that, they gave me pills at random until one worked.
Not what anyone expected. The drug was lithium. Later, I found that Topamax worked pretty well. I tried Imipramine but it gave me the “black box warning” effect, the one that almost kills you. Lithium destroyed my thyroid and kidneys. Topamax seems benign by comparison.
I finally got off all the drugs, includng all the antipschotics they made me take. I never needed any of them. I am left with the one thing I went to therapy for and remains unsolved: I have an eating disorder, a kid disease that should have departed decades ago. It’s been 35 years now.
I don’t have any weight to lose. I have nightmares about dying in the middle of a binge. Or of quitting eating altogether, all over again. Needless to say, neither has happened.
I’ve read the critique you wrote of the McElroy study and that by Roy Poses on Health Care Renewal. I looked at the abstract of the McElroy study and the clinical trial information available on clinicaltrials.gov (https://clinicaltrials.gov/show/NCT01291173). But I don’t see anything that says whether the placebo in the study was an inert or active placebo. I’d guess it was an inert placebo.
If it was, then it would have been easy for the study’s participants to distinguish whether or not they were in one of the drug groups or the placebo group because of the drug effect, especially with the higher dose groups. If that is the case, then the closeness of the results is even more concerning—the double-blind methodology would be broken and still there was only .8 binge day difference between the placebo group and the 70 mg group of Vyanase.
I also assume it was an inert placebo. Thanks for reading and sharing this perspective.
Somehow, I missed a bunch of comments on here. I can look back and recall thinking the drugs were great and that I had no ill effects. Then, I found out otherwise. I’m lucky to be alive.
I think “stimulants” don’t have to be pharmaceuticals. They can be food. Many foods provide a stimulating effect, and others slow us down. When you look at a person’s food likes and dislikes you might see a person has ended up choosing stimulating foods, while other people choose more calming ones. By “stimulating” this might stimulate a particular body process, such as mustard, which stimulates saliva and gastric juices, and there are those that give us more mental pep, or improve athletic performance. Or simply wake us up in the morning. I find that paying attention to these things helps ED more than any drug ever did. Since my eating disorder was ignored by shrinkage for 30 years (even though at times it was damn obvious cuz I was too thin) I was left on my own to deal with it. Now that I am off drugs and completely away from doctors, I can experiment and see what works, without “doctor” influence. It’s amazing what I’ve found. I’ve been able to reduce binge eating down to nearly nil, to the point where I can say I am not suffering from it. I do have very strange eating habits and also low weight, but no way does this interfere with my life significantly anymore. I found that making strategic use of stimulant foods (ones that give you mental pep) and also foods that suppress the appetite, in careful combination, will eradicate binge eating. I try to avoid vitamin supplements and get what I need from food whenever I can. Economics is a huge factor since I have no money to speak of. A lot of me wishes those three decades spent in MH care never happened.
I’m trying very hard to organize with other survivors of ED who are also demanding alternatives to ED care. ED care is a horror story.
Julie Greene, survivor
My first assumption is that binge eating disorder is simply the first new epidemic prompted by DSM 5. Does anyone know how many of the binge eating disorder committee have financial ties to Shire pharmaceuticals?
It may also be largely iatrogenic. Zyprexa can cause amazing binge eating.
Michael, I know that among ED sufferers and various others active in the field that this has been a huge debate. First of all, in these ED “treatment” centers, what they do is to fatten people up. This is the main goal, and it is done indiscriminately. Patients are even tied down and force fed, or bullied, or denied basic privacy, including privacy while defecating, showering, and other very private activities. In most facilites, bathroom monitoring is the norm, even if it is known that the patient doesn’t self-induce vomiting. They use a “rewards” system and you have to earn bathroom privacy. Irregardless, your urine and feces will be “inspected,” even if you have your period. Or you are forced to sing the alphabet while in the bathroom, which is humiliating. Many facilities watch patients in the shower. Low-paid workers are told to eyeball the patient nonstop, and if they feel that doing so is disrespectful, they are admonished and threatened with firing.
The emphasis is on force-feeding, then seeing to it that the patient doesn’t puke. There’s no treatment for binge eating. In fact, they don’t even give a shit. While monitored, patients don’t binge, since this is done in private. I’ve called at least 20 facilities to ask if they even treat binge eating. I had to keep asking. They don’t. They don’t even know how.
I also have mixed feelings about the label. On one hand, more recognition of this problem and more attention to it may occur, but at what cost? Binge eating in itself is far more dangerous than science wants to admit. Conventional MH “care” has completely disregarded it because they have no answers. Any “therapy” is ineffective or inhumane. In over 30 years I never found answers in MH care. I was terrified that I would die in a binge and my story would be lost forever.
One of the problems with the classification is that there’s no distinction between “perceived binge” and an actual binge that is in itself a danger. The literature states that the danger is “overweight.” I cannot more strongly disagree. The statement makes the problem seem trivial, since overeating, which is entirely different, more often is the cause of overweight.
I only know these things because as a sufferer of this for over three decades, I found binge eating IN ITSELF so disabling that I couldn’t work or go to school. Can you imagine shoving down 15,000 calories all at once, and then not even being able to puke it up? A person might eat between 1,500 calories a day, which is sparse, and nearly 3,000, if you are taller, more muscular, and athletic. 15,000 is five times the amount a very large person might eat in a day. It’s quite a feat, especially for a teensy five foot one person like me. Never mind the expense, which can ruin individuals and families. I found no pleasure whatsoever in the activity, either. I regarded it with dread and terror.
I was totally desperate when I first went to therapy. I’d do anything, and I’d have gladly taken a pill. I wish I’d known there were other answers, but none were ever offered. Now that I’m off drugs, away from therapy, and free to experiment on myself, I’ve found a way to stop the madness. This is a real problem, a nutritional problem, where psychiatry and its cohorts has no business treading.
This is a good one, Sandy! I was just about to watch a Russell Brand video on youtube when this commercial popped up and I immediately started researching. Glad to see that you are others (including the NY Times!) are on top of it!
I’d love to see someone do a parody video reframing binge eating disorder and suggesting Meth or Cocaine or something like that.
Also, I’m curious about NEDA’s role in this….do you know anything about that?
Yes, I know about NEDA. They mostly push traditional treatment for eating disorders. By traditional treatment, I mean forced weigh-ins (weekly or twice a week), therapy twice a week, and meds. They usually require a nutritionist as well, but it’s not necessarily covered by insurance. Most nutritionists trained in the traditional manner don’t know much about ED and will just put someone on a diabetic diet. The kids are told that traditional treatment is the ONLY option they have, otherwise they will die. In general, they are never referred to a natuopath or herbalist, or to acupuncture. Funny, these are far more effective, but I have so much trouble convincing these kids. Treatment becomes their lives, sadly. They go in and out of lockup joints. If anyone out there thinks psych lockup is bad, ED lockup is ten times worse, and no one’s talking. Except a few stragglers like me. I am always hoping to get people united on this, but it’s turning out to be a lonely road.
If anyone out there thinks an eating disorder happens to rich, spoiled kids who go to fancy horse farms, that’s a huge myth. ED has nothing to do with vanity.
Apologies to anyone offended by my use of “disorder” but this is the common term, and i have yet to find a good one as substitute when it comes to ED.