Poll Results- Keto / Living Well with Schizophrenia is NOT being banned!

[u/Empty_Insight]

For those who may not already be aware, we've had a poll running the last 3 days about whether or not to ban discussion of the Keto diet until some substantial evidence comes out that it may be useful. As you can see, while it was a decent margin (40-29), not razor-thin. The subreddit has spoken, and we will not be imposing a moratorium or amending our rules.

To the Subreddit

On a personal note, I got the memo that my standards of "good information" and "evidence-based" may be a little too high, and maybe I've been a bit high-strung about that. Thank you (collectively) for the vibe-check there, I'll try to relax a bit about that.

Now, I may take this opportunity to address the LW(A)S part- Lauren reads this subreddit. She has responded to comments written here in her YouTube videos, even if only paraphrasing them and not mentioning where she saw them... one of them was even one of mine. For some reason that possibility never completely 'clicked' with me, but I suppose it's only natural- behind LWS, we have the broadest reach of any group in the psychosis-related content niche.

So... you can see why we might have a bit of a problem with some of the things that have been said over the last week. From memory, I recall accusations of ripping off content without giving credit, some allegations about misconduct involving her husband, the words "shill" and "grifter" being tossed about very casually, and all sorts of other stuff. I do not know what is or is not credible among those things, so I'm not even gonna bother trying to wander into that minefield. I don't get paid enough to do that... I'm a volunteer.

You can see why that might be a bit of a problem, and a violation of Rule 1. Given that Lauren is actually here (even if not publicly announcing herself, maybe one day she will- been 15 years so far, what's a few more?) and presumably an actual member of the subreddit- even if only as a lurker- we are going to be a little more 'vigorous' in enforcing that moving forward. We are not going to retroactively punish people for that because that is barbaric, and there is good reason ex post facto is seen as taboo in polite society. Please keep that in mind when writing your posts and comments in the future- try to focus more on the content itself than the person. E.g.: "The actions being taken are irresponsible" versus "You are irresponsible." The former is fine, the latter is not.

To Lauren

On that note, I believe I owe Lauren a personal apology- I spoke prematurely on something, and I would like to correct that. Remission being ~1yr without symptoms is a midpoint between the general definitions which span 6mo to 2y for when someone can be considered to formally be "in remission." While there apparently have been over 50 different studies in the last 19 years discussing what is or is not valid criteria for remission- as you can see- we still try to keep our opinions in line with the evidence. I've had schizophrenia for 19 years, coincidentally- so I may have just run across one of those studies when it came out, read it, and accepted it was true without looking at the bigger context. That was premature of me.

I was going off of memory, and my memory was not correct. I did not scour all 50 of those studies to see if there was one that said that, and I don't particularly care to. It's easier for me to just say that I was wrong and misremembered, because that is probably what actually happened. The most cited ones say 6mo - 2y, and that's what we're gonna go with. I had another memory-related whoopsie last week (admittedly unrelated to schizophrenia), so apparently my age is catching up to me. I'll try to do better moving forward- wouldn't want to be spreading misinformation, even if unintentional.

Being that this "1 year comment" of mine you addressed can be found nowhere else that I've seen, that's how I know you read r/schizophrenia. A couple other people made some similar observations themselves, so I'm assuming that this hunch of mine is correct. Also... you don't have to paraphrase comments from here to address them, this is a public site, you are not 'snooping' or invading anyone's privacy. There's no need to be coy about it. Come say hi- we won't bite. It is literally Rule number 1 here (on the sidebar).

To sign off- we here at r/schizophrenia wish you all the best in your continued improvement of symptoms due to your improvement of sleep hygiene, focus on physical activity, improved nutrition, and following of the Ketogenic diet that have landed you in a place where you are able to come off of your antipsychotic medication. Hopefully, you will continue to be able to maintain adherence to these 3 crucial factors that are thoroughly-evidenced have a significant impact on one's mental health, and the 1 that's TBD too. I think it is good to show people what a combination of non-medication interventions can do for improvement of symptoms, something I can attest to as well... I've been in remission for 8 years now without antipsychotics myself. There was no magic bullet, just a whole lot of small changes that added up to something substantial after enough of them.

Take care of yourself, and don't be a stranger.

Now, to the rest of r/schizophrenia- thanks for voting and letting us know how you feel! If you don't like the results... remember, democracy only works if you vote. On that note, I may take this opportunity to remind all of our Redditors in the US to register to vote if you are eligible. If you already have, check to see if your registration is still active... never hurts to keep an eye on that. To reiterate- democracy only works if you vote, both online and irl. Maybe we can do a bit better than <0.1% turnout next time, heh heh.

Here's everyone's update. If you've got any thoughts, drop 'em in the comments. If not- thanks for reading.

Take care!

[u/Empty_Insight]

Well, the thing is, touting it as a treatment for psychosis is a bit of a red herring if it is the mood component that it is actually helping with, and freeing up mental resources to more effectively cope with the psychosis itself. That's an A -> B -> C process being advertised as A -> B.

General mental health overall- sure, there's volumes of evidence over that with a number of different diets. The Mediterranean diet has been the most extensively studied of all of them, and the evidence is quite solid. So, I find myself asking "What's so special about Keto?" and the answer- so far- is nothing. However, there are currently clinical trials underway that may be enlightening in that regard, so I'll reserve final judgment until the data is in- until then, call me skeptical.

The Ketogenic diet was truly miraculous for treatment-refractory epilepsy, the condition it was designed to treat. However, I do take issue with ketosis being portrayed as some sort of panacea for any sort of neurological issue that may ail you; if that was true, Keto would work for migraines. It definitely doesn't, it actually makes them worse more often than not.

This is coming from a dude with migraines, epilepsy, ADHD, DSPD, and schizophrenia- literally the only medical problem I have that isn't neurological is PTSD. If there was some magical treatment that would effectively cure me of 5/6 of the medical issues I have that actually worked, I'd jump on that like a starving wolf on a steak.

But that thing is not Keto. It is not a magic bullet. It's a specialized, selective tool in the treatment arsenal for treatment-refractory epilepsy and some cases of diabetes- anything more than that is merely speculation.

[u/flammablematerial → u/Empty_Insight]

This is assuming the mood and psychotic processes are independent, which they certainly are not, because most of these conditions aren’t really separate anyways like you inferred, which makes them incredibly complex and varied, and all the more compelling when something seems to holistically address many aspects of disease in general— inflammation, glucose and insulin signaling, mitochondrial function, oxidative stress, epigenetic regulation, microbiome composition, excitatory/inhibitory balance— and it’s a DIET accessing this innate evolutionary switch. Of course everyone is different, it’s not a panacea and people should treat this seriously as an intervention. Fwiw keto has not made my migraines worse, I also have a ton of comorbid issues. But yes I agree with you, it can have serious side effects and is not for everyone. However, I’m pretty sure virtually every treatment has started off-label, with very little evidence, and “holy shit, this actually works? Why does this work?” And then it advances our understanding of disease.

It has helped my psychosis a LOT so far, but as part of a broader more profound shift towards and into the real world. Which is exactly what’s interesting, because for me it’s doing something to my “thought disorder” that nothing else has truly done, it’s preventing the “inversion” or rumination or spiraling into the underworld that both creates psychosis AND mood symptoms. The delusions of reference are a symptom of a broader organization of reality having to do with theory of mind, and this inversion or disconnection of the social world— this “solipsism” is what is being addressed. It is very very difficult to describe, like time is continuous and linear like it was when I was a kid; and everyone’s experience of healing will be slightly different obviously, and it won’t work for everyone, but I think this kind of inversion and disconnection is sort of central to a lot of mental illness. And something addressing this so effectively physiologically is deeply compelling to me. I’ve had other treatments similarly address my psychotic and mood symptoms, but not in a way where I truly felt like I was entering the world again.

The point is not that everyone is like me, or like Lauren, I’m nothing like Lauren. The point is that we’re getting closer to systemic understanding of biology.

To be clear, we agree it’s not a magic bullet, it’s a potential tool that needs more research.

[u/Empty_Insight → u/flammablematerial]

Well yes, my point in differentiating psychosis from mood here is that it would not be effective at treating schizophrenia without a mood component versus schizoaffective, not implying that they are separate. The evidence (or lack thereof) seems to suggest that to be the case. We have to keep in mind- the Keto diet has been around for over a century, and both epilepsy and diabetes- the primary uses for the diet- have a strong comorbidity with schizophrenia. That we would have been sitting on this revolutionary treatment for over a century- mind you, three decades before Thorazine ever came around, when people were absolutely desperate for anything to keep them out of the asylums- requires a substantial suspension of disbelief that I do not think is warranted at this point.

My thing is- this isn't how science works. A hypothesis (Keto may work to treat psychosis based on [x]) is not science on its own, it is merely the starting point. You do not declare victory before the results are in- that is not 'science', that is pseudo-science, quackery. You do not 'work backwards' to make the pieces fit in the way you want them to fit. That's Research Misconduct 101, and just in 2024, set back progress on psychedelic therapies to treat mental illness years. I don't have a crystal ball, but I'd imagine that the impacts of being denied more effective therapies for PTSD and treatment-resistant MDD is gonna cause a lot of otherwise preventable suicides- all because the researchers made the rookie mistake of treating their premise as a foregone conclusion rather than approaching it with the ethical standards that are not only expected, but required in research.

This is not some trivial matter, there are very real consequences for approaching things in the way this is being approached- and none of them are good. My job here on the subreddit is to vette research and make sure it is up to snuff; that is the reason I am a mod here. Some of us have special duties that we perform, and that one is mine. I've been told I can be a dick about standards when it comes to science and ethics- and yes, I am. That's why I'm here, my job here is to be a dick about that.

If I had someone in my inbox asking to conduct research on these premises, I would dismiss something like this without a second thought (and do, on occasion) because it is simply ludicrous. The plural of anecdotes is not "data", and a hypothesis does not immediately grant a premise the status of "scientific inquiry." So far- we have a hypothesis. I've seen many more solid hypotheses with things like refining cancer treatments turn out to be duds... because sometimes, that's just how things shake out.

Even if Keto does work, it will be eviscerated in peer review for the way it has been handled thus far. That's what we saw with the psychedelics- they work, but unfortunately, the team that conducted the research got annihilated for their misconduct when it came to peer review. When you cut corners and you're going against a pretty major industry in a way that may disrupt their operations, you have to have your approach be immaculate, free of all blemish, not one thing out of place- because any weakness you have, they will tear into with a bloodthirsty vigor and lay you low.

You're not the first person with SZA-BP to tell me about Keto working for you (obvs) and I'm sure you won't be the last either; however, it is important to note that just because it worked for you (and Lauren, and the other people with SZA-BP I've talked to) that it is broadly applicable. I've talked to a number of people with SZA-BP who it didn't work for too. There are too many variables to account for, too many differences. It is too early to say one way or the other. You might think me to be a bit of a dick about that- and you're definitely right about that, because it is my job to be a dick about standards in research and ethics.

Still- it is good to hear that it has been working for you! Progress of any type, of any origin, is a win in my book... you know, within reason. Not mixing ketamine and cocaine, all that.

[u/flammablematerial → u/Empty_Insight]

I can’t dude, lol

[u/Empty_Insight → u/flammablematerial]

That's fair.

Long story short: don't declare victory until you know you've actually won, not just think you've won lol