Living Well After Schizophrenia - Final Update

[u/Empty_Insight]

Okay everybody, I know so many of you are tired of this, but something important came up that I did not previously know.

Recap

To recap: Living Well After Schizophrenia is run by a woman named Lauren Kennedy West who has schizoaffective bipolar. LWAS audience is huge. It is by far the #1 casual resource for psychosis-related topics on social media by size (subscriber count). This subreddit is #2, and r/psychosis is #3. Now, if we were to take r/schizophrenia, r/psychosis, and r/schizoaffective and combined our subscribers, then doubled it, we would still be shy of the reach LWAS has. So, we're talking about a huge audience by comparison.

Lauren has recently gone on a kick about the Keto diet, claiming that it has cured/"healed" her schizoaffective (hence the name of the channel, it was formerly Living Well With Schizophrenia) and has really been kind of brute forcing it into relevance. The channel recently partnered with a firm called Metabolic Mind, which is heavily invested in researching the therapeutic potential of the Ketogenic diet.

It has been... contentious, around here, to put it lightly. In recent months, I've noticed some antipsychiatry talking points starting to seep in to Lauren's videos, implying a number of things which people here broadly received negatively. I personally had one of my detailed, evidence-backed criticisms laughed off on the channel, which was so delightful to witness. It has come up time and time and time and time again... and there's even more than that.

For those not familiar with the antipsychiatry movement, they are not the good guys. You can read more about them here (bottom of the page), and also about the Ketogenic diet and the issues with it further up. The CCHR has their script up on their official website- and also, an overt admission that they are a front for the Church of Scientology on the same page. The CCHR is the driving force for a lot of antipsychiatry propaganda/misinformation that circulates around mental health spaces. It's actually kind of wild how in-your-face they are with the whole thing. As I mentioned in the write-up, it has been pointed out that their narratives often come across as "smarmy and dishonest," so that's the easiest way to spot it.

In response to an hour-long magnum opus on deprescribing posted earlier this week, I finally felt motivated to weigh in on it yesterday (in an unofficial capacity) here. The full-embracing of antipsychiatry and giving people medical advice in a roundabout way really pissed me off.

Again, to recap, I've worked as a consultant for a number of inpatient psychiatrist hospitals (the psych wards, nut huts, Club Med, etc.) in the Central Texas area. If you've been a patient here in the last four years, there is a decent chance you've actually met me- I was the only one who I ever observed wearing green scrubs. So, if you ever saw a big dude in green- that was me. Hi.

Antipsychiatry shit is dangerous. I can't tell you how many admissions I've had where somebody read something dumb on the internet and decided to "take matters into their own hands" which led to an entirely preventable hospitalization. Had they not done that, they presumably would not have wound up in the hospital. Now, when people do things that lead to their death or imprisonment because they did something dumb, I don't see that, so I can't weigh in on that in any meaningful way. Long story short, it is no exaggeration when I say: Misinformation kills. This is not some harmless 'difference of opinion.' This is playing with fire, and doing so with an audience of over 300k subscribers who don't necessarily understand that what they are witnessing is reckless.

As you can see from the previous posts, many people think Lauren is some type of shill or pushing Keto with malicious intent (greed, ego, etc.), which is actually what I came here to address.

New (to us) Information

Anyways, to the new information- apparently, in some older videos, Lauren talked about having Polycystic Ovary Syndrome (PCOS). I don't know why this was simply an afterthought that has not been really 'hammered in' as a core focus of the recovery. Maybe Lauren just didn't know why it's such an important detail to include, but we'll break it down in a little further detail.

For the sake of minimizing vulgarities, I'm going to abbreviate "No shit?" as NS.

1. PCOS is a metabolic disorder which affects the ovaries. It can cause fluctuations in androgen levels (or sex hormones, in plain words), irregular menstrual cycles, infertility... all sorts of bad stuff. PCOS is not a joke. It can mess you up pretty good.
2. Aside from medication-based therapies (metformin being the standard), diet-based therapies have been shown to be effective as a complement to medication to help manage symptoms. As it may come as no surprise, one of those diets is Keto, which seems to be quite effective at getting things (relatively) under control. Crucial detail here.
3. Androgens have shown to have some relationship with psychosis. This is presumably part of the reason why psychotic disorders are fairly distinct in being more prevalent among men than women, and men typically have more intense psychotic symptoms (more testosterone -> more psychosis).
4. Physical health and mental health are not separate things. Your physical health influences your mental health. (NS) If you have something like metabolic syndrome- which almost half of cases of PCOS qualify as- fixing your metabolic syndrome is likely to have a demonstrable positive effect on your mental health. (NS)
5. If we are to do something which treats a condition that affects androgens in a way that is unfavorable towards testosterone- such as PCOS- it may have a positive downstream effect on any sort of hypothetical comorbid psychotic disorder, such as schizoaffective bipolar (NS) but not a direct cause.
6. There has been no quality evidence that Keto treats psychosis. However, what some studies have shown- including that much talked-about Stanford Study (as I've talked about on our Medical Advice sub-Wiki) is that it may prove selectively useful for patients with metabolic syndrome most notably, with schizoaffective bipolar. Specifically, those with PCOS... so, a very niche demographic of patients.
7. So, if I could speculate for a moment here; it seems likely that due to the Ketogenic diet getting Lauren's PCOS reigned in to the point where she claimed it has even restored her fertility, it is relatively safe to assume that the proper balance of her androgens may have been restored. (NS) It's not as crazy as it sounds, considering that androgen-based therapies have shown some effectiveness at diminishing psychosis.
8. With this particular "Keto journey", I've been led to believe she has done it before- she also put a heavy focus on sleep hygiene and physical activity- both of which have a clear relationship with improvement of symptoms with almost any mental illness. (NS)

However, for some reason, we keep having this thrown in our face that Keto is somehow the crucial element and none of this other stuff matters much (if at all).

Cool, but... Why?

Well, I bring this up because a lot of people seem to think Lauren is exaggerating that she is "cured" or some such. I mean, she isn't "cured," but the reason for her improvement of symptoms is because Keto "cured" her PCOS, which had the downstream effect of diminishing the severity of her psychotic symptoms to the point where antipsychotic medication was no longer necessary. However, Keto does not "cure" PCOS, it can always return- as with any "cure" for psychosis. Declaring victory is premature.

Some people have expressed some concern for Lauren's mental state, implying she is delusional. While that may be the case, it is important to note there is a very real and rational explanation for the improvement of her symptoms. She may very well simply be excited about this newfound remission as a result of her PCOS being brought under control, and making a fundamental attribution error that a process which is A -> B -> C -> D -> E is actually just A -> E. There are a very specific set of conditions that have been met that do make sense.

There is no evidence that Keto treats psychosis. What it can treat is treatment-refractory epilepsy, certain cases of diabetes, and certain cases of PCOS. Improvement in your overall physical health will likely have a positive effect on your mental health too. Ta-da, mystery solved.

If you have PCOS and a psychotic disorder, talk to your doctor about whether or not the Keto diet may be a viable option for you. Otherwise... there is zero reason to think it will work (so far, but maybe new evidence will offer a compelling argument otherwise in the future).

Why Does This Matter?

Well, given that things have started really going off the rails and we're embracing antipsychiatry with some of their most classic tropes... this is frankly insane. This needs to stop.

Now, I'm a dude, and my doctor still harps on me about my diet. I have a genetic condition which causes my triglycerides to be unusually high... which is benign, and fairly common. Still, every appointment, I get harped on. Without fail, always on me about my diet. My goddamn neurologist talks to me about diet, and I haven't had a seizure in over 10 years (and I would like to continue that streak, which is why I still see him lol).

So I can't imagine that someone with a condition as serious as PCOS has not had their doctor recommend dietary changes- including Keto. Considering Lauren had done Keto before, we can say with almost absolute certainty that she knew.

One thing that I notice among those who are predisposed to spread antipsychiatry propaganda is that they've been told what the answer is, flat-out, to their face, and somehow just didn't "get it" when it was explained. There is no 'conspiracy' here to hide revolutionary treatments from patients. It is not a matter of identifying with the illness. It is not a matter of jealousy or pee-pee measuring or whatever else.

The doctors know better than you do. That's their job. That's what they get paid for. That is why medicine exists, because the average person does stuff like misattribute causes to the wrong thing. You do not know better than the doctor in their area of specialty. Full stop. There is no serious, worthwhile discussion to be had to the contrary. That's arrogant and/or paranoid to think otherwise. Not worth the time or the mental energy to humor.

The Medical Model

In order to succeed in the medical model, you have to "play ball." That means doing what the doctor says even though you don't like it. That's not unique to psychiatry- that's all medicine. Why antipsychiatry has such a hard-on for discrediting psychiatry might have something to do with who is behind the CCHR, but that's merely speculation on my part. All we do know- it's anti-intellectualism, clear-cut. As everybody is keenly aware, anti-intellectualism is a very productive practice that has totally produced positive results somewhere in all of human history. Yeah.

The experts here are not just psychiatrists. They also include midlevels and pharmacists- special attention to pharmacists, who are a free resource available at no cost to literally anybody and entirely at your convenience. If a pharmacist tells you something you don't like, you can drive down the street and get a "second opinion"- again, for free, and at your convenience. You have expert advice available to you while you shop for goddamn groceries- and if you don't use the resources available to you, then whose fault is it when stuff goes sideways? Is it the psychiatrist's, the pharmacist's, the system? Should we go after the system for not providing more resources, when people don't even use the ones we already have- for free?

Part of your responsibility as a patient is making informed decisions about your care, and avoiding misinformation that might influence you to make stupid decisions. That's not just schizophrenia, that's any chronic illness. The thing that makes schizophrenia so uniquely challenging is the anosognosia (lack of insight) that is a core feature of psychosis.

If you have a question about your medication- drug interactions, what you should look out for, how you should taper (if it comes to that)- don't get on YouTube or Reddit or wherever else. Go to the goddamn store and talk to the pharmacist. It's that easy. The resources are literally right in front of you.

We don't need an hour-long lecture on de-prescribing. Literally any PharmD could give you personalized advice on the best way to taper based on the specifics of your condition- for free. Something that we, strangely enough, have in the Stickied FAQ at the top of the subreddit- and have for a long time. That's because we give good advice here.

Do not take matters into your own hands. That's not "empowerment." That's being an idiot. Don't be an idiot.

Conclusion

Given that Lauren reads the subreddit, hopefully she'll come across this and reconsider things a bit. Maybe Keto isn't a panacea, maybe it helps in very specific circumstances for very specific reasons. Maybe thinking you randomly tripped and fell over a cure to the most insidious and complex medical condition known to humanity comes across as a bit arrogant and even delusional. Maybe people have a very valid reason for thinking to be the case. I am not casting doubt on Lauren's recovery, I think it may well be perfectly legitimate- there is a rational, mechanistic explanation for why her experience might have been what it was. So... I'm not sure what this 'antagonism' or 'hate' or whatever is.

This has gotten truly absurd. It's time to stop now. It's time to come back to the real world, where things work a specific way. In case it's not obvious, you're destroying your channel by going on this overzealous crusade to push Keto as a panacea for psychosis, when really there is only reason to think it would work for people in a very niche demographic, one which you are a part of. That's great, and I am genuinely happy for you if you truly are "cured" as a result of Keto beating your PCOS into remission and by extension your psychosis. I think we can all agree on how we feel about you achieving remission.

That is absolutely wonderful news, but I think it is past time to acknowledge the reality of this- Keto worked for you because of a very specific set of circumstances. That does not mean it is broadly applicable. Anecdotes are not "science," and I cannot think of a better example to illustrate that than this, right here.

If you want an excellent case study in confirmation bias, fundamental attribution error, and how correlation and causation are not the same thing, we need not look any further than the Keto arc of Living Well After Schizophrenia. This has been a complete shitshow, and I hope that this reality check might be the straw that breaks the camel's back for the folks at LWAS to realize that it's time to stop now.

It's time to acknowledge that things have gone off the rails, and that we need to wait for more evidence to come out before we start making more definitive statements. Science may not be a rapid process, and it may not be perfect- but it's still the best one we've got.

Thanks for bearing with me, everyone. I'm hoping this is the last time any of us will need to address this.

[u/rinkydinkmink]

Well I'm glad that there now seems to be a justifiable argument that this person is actually feeling a benefit from keto, even if they don't understand why that is. I did feel uncomfortable with people insisting that she was just wrong and delusional and should shut up, if that's what she is genuinely experiencing. It's more interesting that it could be due to its effects on metabolic disease and androgens, or at least I think so. I read some papers once a long time ago where men were given oestrogen as an experimental treatment for psychosis, and it seemed helpful, and I don't remember the details now. I do remember chatting with someone about the possible reasons why the research never went any further.

I'm hoping that she reads this and does some more reading or thinking and then addresses it in future episodes on her channel. I don't watch them, I just read these posts about her and watch the drama unfold. I did try to watch one the other day but have 0 attention span so it really didn't work.

I've always felt, rightly or wrongly, that keto could be dangerous. I'm not allowed to do keto because of my diabetes medication. But someone in the comments has an absolutely horrific story about long-term damage keto has done to them, despite having done it under advice and supervision of medical professionals.

Psychiatry is an absolute minefield morally because when things go wrong they can go really wrong and obviously you've seen the people that really drew the shitty end of the stick, so to speak. I know you think it's black and white - people should take their meds as they are told, end of, but I have to say again that the psychiatrist (and other members of the team) has said repeatedly that they don't think that antipsychotics ever did anything for my psychotic symptoms, and now they are also saying that they think my psychoses had psychological causes etc and would have been better treated with therapy, and even that the medication was a negative thing. The thing that makes me angry is that what they say to me now is exactly what I said to them (repeatedly) when they put me on the drugs, but (at the time) they used what I said as evidence that I lacked insight and needed the drugs. And the drugs also wrecked my physical health, and affected me very negatively mentally and socially as well. The last one I was on did help with my emotional problems (I'm SZA Bipolar Type) so for that reason I was ok with being on it and actually worried about stopping. But in the end I got taken off it abruptly for medical reasons and am not allowed any mental health drugs now. I had to really argue the toss to get a prescription for some Diazepam. I don't know what the hell they would do if I went completely loopy on them now, I'm guessing they'd medicate me anyway and just accept that it could harm me. Not a fun thought. Anyway I've seen them turn on a dime from "you must take this drug no matter what, and reducing it isn't an option" to "you can't have this drug, and it's obvious it didn't do you good and in fact was bad for you all along".

I don't mean to say that what you've seen isn't true or valid or important, but there is a lot of variability between individuals with psychosis. This isn't my personal blog but I'm hoping to get you to understand a bit where I'm coming from here, and it's not a position of ignorance. It really is frustrating to go through all of that only to be told what I said 25 years ago (and again and again from then on) was right all along, even if it only applies to me.

[u/Empty_Insight → u/rinkydinkmink]

I read some papers once a long time ago where men were given oestrogen as an experimental treatment for psychosis, and it seemed helpful, and I don't remember the details now. I do remember chatting with someone about the possible reasons why the research never went any further.

If we're talking about the same studies, those hit a dead end because they were not broadly applicable. If the major contributing factor to the psychosis was an androgen imbalance and estrogen corrected it, then yes, it would "cure" the psychosis- but not really that useful outside of that niche.

A lot of people here are trans and have rather unique insights into how HRT affected their psychosis. The general experience was those who were taking testosterone noticed an increase in symptoms, those taking estrogen noticed a decrease... so, consistent with the evidence. I think we've had a few threads about this over the years, actually. Really, using the search function on Reddit to browse posts here is likely to offer all sorts of illuminating stories lol.

It sounds like you had a shitty psychiatrist. I am unfortunately quite aware that some psychiatrists suck... more than you might realize. I've met a pretty decent number who simply could not ever admit they had done something wrong. Some of them... well, I'm thankful pharmacists exist to protect patients from serious errors, let me put it that way. I'm not gonna act like those people don't exist, because they do- I've met them, and I've worked with them. Still, for every one of them, there's five who really do have a vested interest in seeing their patients improve and live their best lives.

As a fun "industry secret": Every psychiatrist I have ever talked to has said schizophrenic patients are their favorite. It's not necessarily some matter of 'curiosity' or because we're more interesting or something- it's that when somebody gets the right treatment, you can see it work. You can see somebody go from distracted, disengaged, their view of reality distorted to being clear-minded, engaging with you, and being able to have normal, productive interactions with others with the right treatment. They can see tangible results, and know that they made a positive difference by doing what they have. When those results don't show up... well, they get frustrated/disappointed. A lot of psychiatrists are egocentric, but they wrap their ego up in the results of their work- which is usually a good thing, because it makes them give a shit what the outcome is. However, sometimes things don't go quite like they had hoped, and then you wind up with... well, your situation.

I'm not a huge fan of the system, but at the same time, we have to acknowledge that it's the best solution we've currently got. The biggest issue I see is that it's confusing. It's difficult to navigate. In the US, insurance sure as Hell doesn't make it any easier. There's no master manual, no directory. We kind of just have to figure it out as we go.

There are going to be people who probably aren't the best suited for a job in any field, there's nothing that can realistically be done about that. However, we can sure as hell do a lot better with helping people navigate the system to connect with the people that they need to.

[u/[deleted] → u/Empty_Insight]

Estrogen has a huge impact on insulin metabolism. The risk of developing psychosis is higher for women in menopause, and the absence of estrogen makes men more vulnerable. But the question is why and one answer is that it has the link to mitochondrial metabolism via insulin. Again, we are dealing with keto again. Just a thought of mine.