Monday, February 11, 2013

Part 2

This is Part 2. First, read Part 1.

by Zooko Wilcox-O'Hearn, written from 2013-01-11 to 2013-02-11

This was written as an outpouring of grief. Please judge it in that context. Also, these are my memories and opinions, and nobody else is responsible for any errors or offenses.

http://www.aaronsw.com/weblog/verysick

Once she was diagnosed as having bipolar disorder instead of depression, Amber started taking new meds, the ones intended to help with bipolar, and things went from bad to worse. Each new drug would seem to help for a couple of weeks or a month, and our hopes would rise, but then the despair and anger would rush back in, stronger than ever. The psychiatrists would doggedly prescribe a tweak to a dosage, or try adding in another new drug, and we would iterate the process, getting more and more desperate each time.

We were always private about this. Even our closest friends and our families saw only a part of our situation. I've never spoken about it in this degree of detail, or publicly, before today.

In 2007 Amber and I visited with Aaron and his then-lover, Quinn, in San Francisco. Quinn had a real bearskin rug, with a head attached and everything. It was white and startlingly soft. “Quinn's the worst vegetarian in the world.”, Aaron intoned. He was funny. “And I'm the worst communist in the world.”. He was wealthy from selling reddit.

I had discovered an article in a Zimbabwe newspaper blaming that miserable country's famines and disasters on unnatural and immoral acts, and citing the example of one Quinn Norton in California, USA, who had openly practiced polyamory with two men at once in previous years. Aaron said he was excited and proud to be dating the woman who was so sexy that her sexuality was actually destroying Zimbabwe. He was funny. But he also really was excited and proud. It was a pleasure to see how excited he was about her. He was 20 years old.

Quinn and Aaron visited us in Colorado that year. We went for a walk in a beautiful stony canyon and talked about all sorts of things. It was a happy moment in each of our lives. One of the four of us mentioned psychiatric treatment and psychiatric medication, but we didn't really talk about it. It would be the last time I saw Aaron in person.

In 2008, new symptoms started to appear in Amber: anxiety, insomnia, weight gain. She became obese – at 5'6" she weighed 185 pounds – and consumed with self-loathing. Dulled cognition, inability to find words, inability to feel emotion. And even more, and even scarier symptoms: “akathesia”, “brain zaps”, uncontrollable weeping, “rapid cycling”.

And always the despair, the rage, and the recurring, unshakeable urge to kill herself and get it over with. We circled lower and lower, increasingly desperate, increasingly hopeless. I traveled less frequently, participated less openly on blogs and forums. All of my net.friendships began to dry up.

And then in 2009, everything changed.

Amber read on web forums about a weight-loss diet called “zero carb”. She had often practiced a low-carb, Atkins-type diet, doing so consistently when she was young and slim, and sporadically in recent years when she was mentally unstable and fat. “Zero carb” was just a more extreme form of low-carb. On a zero-carb diet, you eat nothing but meat! She decided to try it for a month to see if she could lose some of her excess body fat.

This experiment had an unlooked-for and incredible effect: it cured her mental illness.

From my perspective, the effect was night and day. Ten days after she had begun her diet experiment, she commented to me that the diet seemed to be really helping with her mood. I sat down with her, gazed into her eyes, and spoke seriously: “Amber, you have never been stable and sane for this many days in a row in the ten years that I have known you.”.

She continued eating nothing but meat for around thirty more days, until she became pregnant with our third child. Pregnancy brought an overwhelming craving for carbohydrate and a bad case of all-day-nausea (“morning sickness”) and she reluctantly gave up on the all-meat diet for the duration of the pregnancy. She went back to being angry, depressed, and unstable for the next nine months.

A few days after our third son, Graeme, was born, she resumed the all-meat diet, and again the symptoms of her mental illness vanished within a few days.

That was in October of 2009. I'm now writing this in February of 2013. Amber has stayed consistently on her all-meat diet, and has been stable and safe since October, 2009. She has become a positive, productive woman. She takes care of family responsibilities, has healthy and active friendships, and does volunteer teaching at our elementary school and preschool. She has resumed her research in computational linguistics, reviving her dream.

She also rapidly lost almost all of her excess body fat, reducing to about 135 pounds, which is nearly the ideal body weight for her. So it turns out that her original reason for trying a zero-carb diet – as a desperate attempt to combat obesity – was a success.

Our marriage, having endured, blossomed.

And safe! Safe! She reports that she has had zero occurrences of suicidal ideation (the visualization or compulsion to kill yourself) in these three-and-a-quarter years.

Of course, we didn't know this was our future when Amber resumed her diet after the birth of Graeme at the end of 2009. Through those months at the end of 2009 and the beginning of 2010, I watched with gnawing fear, and then with growing wonder, as she continued following the same diet, and didn't experience a relapse. You see, one insidious aspect of bipolar disorder is that the “up” phases (technically “mania” or “hypomania”) appear as health to the victim. This can also deceive the victim's loved ones and friends, who may mistake dangerous progression of the disease for being a healthy period of cheerfulness and high energy. In some people, the manic phase of bipolar disorder can continue for months.

So it was cautiously that I started to think, as the year 2010 progressed, that this could be a real solution, and not another false hope, like the psychiatric meds had all turned out to be.

We didn't talk about this in public, nor with friends like Aaron. Even, or especially, with those friends that we suspected suffered a similar affliction.

Why not? Well, the fact that Amber had been sick in the first place was private. But aside from that, I didn't want to give people the impression that I was being irrational.

I despise pseudoscience, hucksterism, superstition, religion, and sloppy thinking and wishful thinking of all kinds. If you search the Net for “X cured my Y”, you'll find copious personal testimonials that sound like this story. This is true for such Y's as psychiatric disorders and cancer, and for such X's as herbal supplements, UFOs, and Jesus. And diets! An infinite variety of dietary practices are credited on people's personal blogs with having delivered them from an infinite variety of ailments.

I didn't want to appear as one of those people. I hate to imagine my friends privately rolling their eyes and saying “What a shame – Zooko has fallen for some sort of quackery.”.

I also didn't want to be one of those people. Amber and I didn't understand what had happened here, and her astonished psychiatrist had little to offer.

Was it merely a coincidence that the mental illness that had gripped Amber since adolescence had vanished at the same time she started the diet? If it wasn't merely a coincidence, if the diet really had saved her life as it appeared to do, then was this effect unique to Amber, or could it also help others? So we didn't say anything to our friends at first, but we began an investigation.

Our first clue was that almost all of the drugs used to treat Bipolar Disorder are anti-convulsants, originally developed to suppress seizures in epileptics. Epilepsy and bipolar disorder are probably related.

And it turns out, a diet similar to Amber's is a powerful medical treatment for epilepsy!

A “ketogenic” diet is a dietary therapy used to treat epilepsy. It has a very low carbohydrate content and allows the patient's body to enter into a metabolic mode called “ketosis”. A ketogenic diet therefore has some important factors in common with Amber's all-meat diet (which also produces ketosis), but also significant differences. This was just the starting point of our investigation.

If epilepsy and bipolar disorder respond to some of the same drugs, could this be because they involve some of the same underlying mechanisms? It could be. There are some bits of circumstantial evidence that suggest it. For one thing, symptoms of bipolar disorder occur seven times more often among epileptics than non-epileptics. Doctors observed starting a hundred years ago that people who suffered from both depression and epilepsy would experience a temporary remission of their depression after a seizure. This led to the development of Electro-Convulsive Therapy, which is a therapy of deliberately triggering a seizure in the patient's brain, and which is an effective treatment for depression and bipolar disorder.

So it seems there are probably some common mechanisms between mood disorders and seizures.

And how effective is the ketogenic diet for epilepsy? Tremendously effective! About a third of people who suffer from epilepsy are not helped by any combination of anti-convulsant drugs. Either the drugs don't control the seizures well enough or the side-effects from the drugs are so bad as to be intolerable. There are about a million people living in this condition in the USA today.

In those people – epilepsy sufferers who can't be helped by drugs – the ketogenic diet helps around two thirds of those who try it. In about half of those that it helps, it completely and permanently eliminates their seizures!

The fact that the ketogenic diet is such a powerful treatment for epilepsy shows that the diet is having a strong and profound effect on brain chemistry. This isn't one of those “alternative medicine” treatments whose effects are subtle and long-term, one of those treatments that might actually be doing nothing. Instead, its effect on epilepsy sufferers is usually more rapid and dramatic than any anti-convulsant medication, including those anti-convulsant medications that are used as the first-line treatment for bipolar disorder.

This means it is plausible that her diet really was the cause of Amber's mental illness suddenly letting her go.

And if it helped Amber, it might help others. Remember, the ketogenic diet helps about two thirds of the epilepsy sufferers who try it, so if it has a similar effect on bipolar sufferers, it might be effective for a lot of them.

I thought of all the hackers we know who seem to bounce between elation and despair, like Amber used to do. Among those I thought of was Aaron. He suffered from depression, but also sometimes evinced extreme enthusiasm, impulsiveness, and an ambition bordering on megalomania.

And, his diet had long been made up primarily of easily digested carbohydrate, which is in some sense the opposite of a ketogenic diet. Could this conceivably have been exacerbating a mood disorder in him?

Unfortunately, although our first clue was promising, we didn't immediately find additional evidence to follow it up. There haven't yet been any controlled experiments in treating psychiatric disorders with ketogenic diet. In the intervening two years, more scientific research that applies to this subject has been published, and we've found more evidence that weighs on this hypothesis, but in 2010 our investigation was just beginning.

That year, Aaron wrote to me asking about combining Tahoe-LAFS with Tor to make a censorship-resistant web host.:

From: Aaron Swartz <me@aaronsw.com>
To: Zooko O'Whielacronx <zooko@zooko.com>
Subject: tor2web and tahoe
Date: 2010-09-17

It strikes me that tor2web needs a good way for normal people to
upload files from it. One possibility I can imagine is a bunch of
people offering to contribute disk space on servers from behind tor
and then a way for others to publish to those servers. Is this the
kind of thing Tahoe-LAFS would be good for?

From: Zooko O'Whielacronx <zooko@zooko.com>
From: Aaron Swartz <me@aaronsw.com>
Subject: tor2web and tahoe
Date: 2010-09-17

Hi Aaron!

I don't know what tor2web is.

I believe Tahoe-LAFS storage servers operating as Tor hidden services
is architecturally sound, and we've long since committed the necessary
configuration support to Tahoe-LAFS:

https://tahoe-lafs.org/trac/tahoe-lafs/browser/git/docs/configuration.rst?rev=0d5c0862187fb726621d6293906ad8375455bc23#overall-node-configuration

However, nobody has really used it and I suspect there would be
performance problems and potentially issues with timeouts in polipo.

So, what we need now is users, bug reports, and some hackers to
investigate and tune up configuration and performance and so on.

Regards,

Zooko

Three months later he posted an idea about how to build a somewhat similar system, which he named “uncensor”.:

From: Aaron Swartz <me@aaronsw.com>
To: Zooko O'Whielacronx <zooko@zooko.com>
Subject: censorship-resistant Web
Date: 2010-12-21

I wrote up some thoughts on how a censorship-resistant Web might work.
I'd love feedback:

http://www.aaronsw.com/weblog/uncensor

Then in January of 2011 he published an idea called “Squaring The Triangle” which used ideas from Bitcoin to design a solution to The Naming Problem. (Those ideas, or similar ones, had been independently invented slightly earlier by Matthew "appamatto" Willis, which gave rise to Namecoin.) If that idea works out, it will be a fundamental concept in networking technology which will probably outlive us all.

end Part 2

17 comments:

  1. After his passing, I was disturbed to hear of Aaron's digestive troubles, and then his diet (which by some theories would be awful for anyone with intestinal problems), and then (suggested from at least one memorial speaker) that Aaron's own health issues seemed a 'blind spot' in his otherwise rigorous research habits.

    Some suicidal mood episodes are reported to have a sudden onset -- almost like an emotional seizure -- and other links between diet and mood are strong. So your research and sharing (including of personal experience and provisional theories) is important.

    Thanks for this, and also the previous post.

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  2. I don't remember if it was my N.D. or the book she gives to new patients who said it, but the biggest insight I've ever heard about diet is "It's essentially impossible to lose weight while you're eating something you're allergic to."

    I've learned that food and mood are connected in a way that's far less intuitive to us than food and physical sickness. If we eat a bunch of clams and then throw up the next day, we blame the clams. But if we eat a bunch of bread and then feel mopey the next day, we don't instinctively blame the bread.

    When I stopped eating dairy products 20 years ago, I had an immediate (well, over a month) improvement in both mood and focus. I wasn't anything resembling bipolar, but I would often get pretty depressed about things. I attempted suicide by dehydration (a method which allows one to back out at any time). I frequently stayed home from school because I was just feeling "bleh." If one detail of a homework assignment didn't make sense, I might end up lying on the floor for hours crying about it. I'd start all sorts of passive aggressive fights with my brother.

    Once milk was out of the picture, I became vastly more productive. I hardly missed any school. I rarely got upset. The pain and suffering in the world didn't make me want to kill myself. I stopped fighting with my brother. I got elected vice president of student council. I don't think my carbohydrate balance changed significantly, then or now. I eat a lot of whole grains and a mild amount of sweets.

    My ex had a similar experience when she found out she was allergic to corn. She stopped picking fights about stuff that didn't matter. She was able to focus on reading. She didn't let things like a messy kitchen bother her. She stopped having bowel issues. She didn't have super-painful periods (and stopped taking pain relievers with corn as the inert ingredient). She spent a lot less time being sick in bed. She lost some weight. In recent years she's lost a lot more weight, possibly from cutting wheat from her diet. She still eats plenty of carbs; she's just picky about which.

    For a subculture that loves delving deep into complex systems, a lot of us nerds and hackers don't know a lot about our own bodies. We've each got an amazing personalized work of distributed engineering with very limited documentation.

    I don't know if Aaron had problems with too many carbs, like Amber. Or if he had problems with dairy, like me. Or if he had problems with wheat, like so many in the Venn diagram of Asperger's Syndrome and Geek Focus. Or if his brain didn't play well with some pervasive modern food additive. Nonetheless, there may be something to the theory that Aaron's gut-brain network was compromised.

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    2. Hi, Trevor. Thank you for sharing your stories.

      Food intolerances are immensely important. Even in my story, while a keto diet helped me, I continued to decline until I eliminated essentially all plants from my diet.

      Dr. Georgia Ede has an excellent site devoted to dietary causes of disease. The Paleo movement is at root an evolutionarily motivated theory of intolerances. A lot of the gut-brain theories that are being developed are also based on this paradigm, and I think it is very promising.

      However, there is a problem with the intolerance lens when it comes to understanding ketogenic diets. From that perspective, ketogenic diets are criticized for coarsely lumping together a class of foods, some of which many people are unlikely to tolerate, and others of which likely to be benign for most people, in terms of having aggressive foreign biochemicals.

      However, the point that is being missed is that carbohydrate foods reduce to sugar in the body, and this is a fundamental problem for the following reason. Mitochondria can use glucose or fat for fuel, but in many people, there is system-wide mitochodrial damage that impairs glucose use. This is connected with many modern diseases, and I suspect it is causal.

      Ketogenic diets make a qualitative change in the way fuel is partitioned, and in what energy mitochondria primarily rely on. This means that people with mitochodrial damage can shift their metabolisms to stop using the broken system, and start using the one that works and doesn't handicap them.

      So the problem of "too many carbs" is probably orthogonal to intolerances, and can potentially help a wide variety of diseases.

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    3. Dr. H. L. Newbold wrote several books about how obesity is one of the possible results of ingesting foods we are allergic to. In The Type A/ Type B Weight Loss Book, he has a case history of a woman who was morbidly addicted to milk. She drank it by the gallon, all day, every day. She was completely not functional in her life. She still lived with her parents. She was unable to support herself. She was unable to think clearly. Newbold put her on an all beef diet. Her transformation stunned even Newbold. She became a totally different person. Eventually, she married and had a child. This idea of allergies causing mental illness actually originated with Dr. Theron Randolph. Ralph Moss wrote a book about his work, which I also highly recommend, titled An alternative Approach to Allergies. He had a whole wing of a hospital in Chicago where he put mental patients on a 4 day water-only fast, then introduced foods one at a time until he identified the culprits. There are some fascinating case histories in this book as well. One woman was a tea and sugar drinker. She drank about a cup every hour she was awake. She was depressed, but functional. When he reintroduce whole beets into her diet, she had a psychotic break and had to be placed in a straight jacket to keep her from harming herself. It took another short water fast to clear it from her body. Itturned out that the sugar she was using in her tea came from beets.

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  3. Thank you for your comments, gojomo and Trevor. I especially appreciate your transparency about your (former) mood troubles, Trevor.

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  4. These blog posts are incredible to read and I want to thank you for synthesizing your knowledge of health and technology communities, Zooko. This new blog inspired me to search for research on ketogenic diets and mood. Maybe you already came across these studies, but I think they're fascinating. One shows improvement of mood in humans and one shows fewer depressive symptoms in rats. Both involve ketogenic diets.

    http://onlinelibrary.wiley.com/doi/10.1038/oby.2007.516/full

    http://www.sciencedirect.com/science/article/pii/S0006322304010066

    GABA also has a very important role in treating depression, bipolar, and epilepsy. I have been taking GABA agonists along with practicing mindfulness meditation (associated with increases in GABA) to deal with my severe anxiety and have noticed improvements in mood as well.

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  5. Hi Sam! Thanks for the note. I have indeed already seen those two papers that you posted, but thank you for sharing them and please share any more that you find. I intend to post more about the relevant research papers that I've found.

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  6. Thank you for sharing this.

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  7. These posts remain powerful, terrible and wonderful. There's much to be sad about, but also much we have done and will yet do. Thank you both for telling these very personal stories.

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  8. THank you for your encouragement, mbp and schmonz!

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  9. Thank you for pointing me to this little hidden egg. These are touching and cathartic posts, and amazing. So much here resonates for me. I live in constant fear of someone thinking I have fallen for "some sort of quackery" and pitying me for it. And in fear of actually falling for quackery and not knowing it! The things I google sometimes, scare me. I, too, have personal experience in relationships with aspects of mental health and watching someone you love go through something like this is so difficult, and too often I think, secretive. I will be reading both parts of this again. Thank you.

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  10. This is beautiful man. Thanks. I read this a few days ago and decided I had to come back and comment.

    Just earlier today, as I'm working at the Green Grind -- perhaps you know it from your Toronto days -- a couple was sitting directly across from me at the big oak table that dominates the cafe. I was trying not to eavesdrop, but couldn't help myself from listening as the German guy talked about his stresses with his Canadian work visa expiring, and how the Centre for Social Innovation no longer allows them to work there with the dog, and finally how his brother was struggling and on 3 different anti-depressants and anti-psychotics during 8 years of manic depression (or "ups and downs in mood", as he called it, since he didn't know the English word).

    I had no idea who this guys was, but I totally felt for him. He didn't sound totally defeated, but he sounded stressed. Anyhow, I really wanted to just jump in and point him to your post, but I obviously felt it was too forward of me. It's funny, because I'm not normally one to shy from conversation. Perhaps blame it on the fact that I'd already self-evidently eavesdropped, offering a laptop charger when he mentioned he left his at home. It felt silly to jump in again, especially for something so flimsy as dietary advice for his brother's mental illness. For one, I don't know how common your story was among manic depressives, nor how well-known the "remedy" is. And like you, I'm a skeptic by nature, and was concerned how it would sound if this guy was also a skeptic. I wanted to say something, but froze.

    As they got up to leave a few minutes ago, I even got up, went to the glass door, and watched them cross the street, before sitting back down. I'm pretty sure the barista thought I was checking out his girlfriend's butt. I sat down for maybe 30 seconds, and then realized "This is ridiculous that I'm worried about my own pride when maybe -- just maybe -- something big and good might come out of my making the comment." So I ran out the door and down the street. But I couldn't find the couple anywhere.

    Hopefully experiences like yours are more commonly shared among those treating manic depression. Hopefully I can speak more easily next time, and maybe share a link to your story.

    Anyhow, just wanted to let you know that a little post you wrote a few years ago actually affected me. So again, thanks :)

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    1. Dear Pat: thank you very much for writing. I enjoyed your story, and it encouraged me to write more. :-)

      As to whether other victims of bipolar disorder are aware of the possible therapeutic value of a ketogenic diet, you can find a few comments on this blog post:

      http://www.neurorexia.com/2014/02/06/quieting-the-bipolar-mind-can-a-ketogenic-diet-stabilize-mood/

      And perhaps in the discussion on this forum that has been set up by Amber and me: http://ketotic.discoursehosting.net/


      But unfortunately, the vast majority of people suffering from bipolar disorder have never heard of this idea.

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  11. I can not begin to imagine what you guys have gone through. I feel deep sadness, and a joy that you have stumbled upon a solution. So whatever I say here can't compare. Still I wanted to bring up one more ingredient of our mental health. We all have a strange ability to move our point of identity. As we assume a different slant of an identity, we start thinking about the world in a different way. Mindfulness meditation mentioned by Sam is one of the ways to move that point. There are other ways. But most people do not have the map on what these points are and training to move the point and keep it there. I never had a mental illness, but had experienced deep despair that lasted for months and months. It was caused in my case by a long and bumpy road of spiritual seeking. It ended when I found and trained myself to consciously use our ability to shift the 'I' point.

    As I move between the 'I' points more freely I never seize to be amazed at how real the problem felt to me just a second ago. I believed it with all my heart, mind and emotions. And in another 'I' point the problem just does not exist.

    As you said Zooko, Aaron's belief system caused him to experience life in a more contrasted way. The contrasts of politics bring to the surface the animal human in us, I agree with you. And so are any systems of beliefs. We can actually swap our system of beliefs and replace it with the another one, that is less tormenting. But shifting the 'I' point is much more powerful. We can actually watch from that point how a strong emotion shakes the body and quickly dissipates. Powerful and less known remedy.

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  12. Thank you for telling these stories with such depth and clarity. I have received such an intimate experience through your reflections.
    I found my way to ketogenic dieting by the same inference from epilepsy/bipolar meds being similar. I have bipolar 1 and had a decades-long serious eating disorder, between which I never fulfilled any of my brilliant potentials for lack of follow through/functionality in society.
    I found it when anorexia had given way to bulimia (perhaps partly triggered by medications) and I'd gone from extremely low weight (comfort) to relatively normal weight (anathema). I have severe gut issues and allergies, and a lot of gut damage from the eating disorder, so binge/purge meant unbelievable pain as well as shame.
    Ketosis took out the binge/purge completely--it just doesn't happen. And for a while, I thought the bipolar was cured as well--I felt stable, productive, happy; I went off my meds. But I caught myself ratcheting up toward mania and went back at least on lithium, which helps me navigate the world better. If I go out of ketosis, my moods become obviously dysregulated and some tics and other seizy-type things (my bipolar is distinctly seizure like) come back.
    I haven't tried meat-only (yet?) -- eating meat at all is still remarkable to me, having been vegan so many years. Coconut does me such obvious good too, I'm loath to give it up.
    Thank you thank you thank you. You were a good friend to Aaron in the world of net.friendship. Strange world. I'm sorry all that happened (still weird to me that meanwhile _I_ am still alive).

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    1. I strongly encourage you to try meat only. We have a Facebook group dedicated to those of us who eat meat only. The name of the group is Principia Carnivora. And here is the recent interview I did with Amber for my blog:

      https://zerocarbzen.com/2016/10/04/zero-carb-interview-amber-ohearn/

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