8 ms·

PANDAS revives the debate about the immune system and mental illness (2015)

137 points by dnetesn 8y ago

mavilia 8y ago
Very interesting read. I always wonder about the criticisms of new solutions that are working as magically as they seem to be in the article. The kids started taking antibiotics, and soon thereafter had obvious improvement that led to them being cured eventually. Of course you can say sample size wasn't large enough to make any conclusions, but what is their (critics of PANDAS) answer to the fact that the antibiotics worked? Is it pure coincidence? Or some other mechanism in play? If it was another mechanism in play then at the very least I would think that autoimmune treatment should be used as a backup plan in case typical OCD, ADHD, etc. drugs aren't working as shown through the article. Of course I am not a medical researcher so this may have an obvious answer, but I always wanted to know how critics go beyond the "n=1" argument to disprove new solutions that seem to work perfectly.
- maxerickson 8y ago
  They pretty much have to come up with a better explanation.
- TheSpiceIsLife 8y ago
  Someone correct me if I'm wrong, but aren't the typical ADHD medications amphetamine and methylphenidate? Shouldn't these two powerful stimulants be medications of last resort?
  - testvox 8y ago
    They are, but ADHD is particularly unresponsive to other interventions. So those drugs are usually what ends up being the only effective treatment anyways.
  - krageon 8y ago
    Giving methylphenidate to children with ADHD actually improves their symptoms later in life (even if they stop taking the medication).
- tyu100 8y ago
  This is covered in the article: these rare chidhood neurologial diseases are considered multi-factorial and antibiotics may or may not work in some cases, at some stage of disease onset. I would be extremely wary of self-reported miracle cures for chronic diseases as well. 'Liberation treatment' for MS had many fantastic reports of patients throwing away their crutches and the like but of course turned out to be totally ineffective.
simion314 8y ago
The article states as a fact that in present all mind illnesses are get blamed on the mind and not on the environment or body but we read everywhere that the causes for many such illnesses are in the body or environment. The problem IMO is that it takes a long time until correlations and later causation are found
- barking 8y ago
  AFAIK twin studies where babies were adopted suggest that schizophrenia is likely to be genetic in causation to a large degree. That doesn't rule out the common environment of the womb of course.
  - Nasrudith 8y ago
    I thought the nazis proved that it /wasn't/ genetic strongly by murdering nearly every diagnosed schizophrenic under their domain. The rates were unchanged. Maternal nutrition seems far more likely given the prevalence being lowest in wealthier countries and higher in poorer countries on maps. Granted it may technically be epigenetic.
    - krageon 8y ago
      All they proved is that murdering all people (that they could find) with schizophrenia doesn't lower the incidence rate of schizophrenia. This paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2800142/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2800142/ discusses a few of the reasons why that could be the case, but obviously it doesn't make grand claims.
      - Nasrudith 8y ago
        Interesting that sufficient complexity may also work as a reason. I would have expected some deceease in a genetic context but I suppose sickle cell anemia is another example with simpler structuring given it is partially adaptive and partially maladaptive given one means malaria resistant blood and two means concave red cells bad at their job. Even if malaria vanished a thousand years ago the trait would probably stick around today. Thanks for the link and furthering my understanding. I wonder how common "summed" traits are where a few to some are good to have while too many or too few is a bad thing. I heard of one computer example which by no means biologically proves anything apparently too high a learning rate caused some neural networks to start making increasingly bizzare associations and caused the convergence rate to plummet instead of improving past a certain point as spurious correlations resulted in incoherence. The schizophrenia thought disorder resemblance was explicitly noted.
callesgg 8y ago
I believe that most psychological "issues" arise from more rationally explainable underlying problems than our current psychological understanding is able to explain. We lack the models to analyze and research how different diagnoses are related to each other. Psychology today is a bit to obsessed with the surface structure of the mind, and the behavior that it causes. We need something like theoretical physics for the mind where we model more underlying functions not surface behavior. The mind might however be so complex that it is impossible. But on some level i think there is abstraction levels that can be modeled.
- krageon 8y ago
  It might be impossible to model with the technology that we have right now, but it cannot be impossible at all. Unless you believe consciousness contains some amount of magic, in which case all bets are off.
  - callesgg 8y ago
    It might be impossible in the same way that it is impossible to beak an RSA key. To many underlying components making it impossible to extract the underlying components unless you already know what they are.
montenegrohugo 8y ago
What if you grow up around insane people? What if you are daily surrounded by people with faulty reasoning and illogical, biased conclusions? Would you not adopt these neural mechanics too? You are a product of your environment, and if your environment is insane, you will be too.
- s-shellfish 8y ago
  Autonomy and self direction in chaotic environments are important. Having a strong value system as a foundation for which to make decisions on is essential. It's essential that this value system is not compromised, because loss of identity, loss of self, loss of autonomy, loss of direction. Chaotic environments comprising of selves direct the individual self when values are lost. It's important to have a soul, and a heart. It's important to avoid judgement for differentness, or sameness. Everything is important when something has been lost. There's only so much a singular self can handle from an environment that is chaotic. Insane is generally not a nice word. Social environment in relation to individual.
- WilliamEdward 8y ago
  It could just as easily be the opposite - seeing insane people could make you less likely to go insane because you see how damaged they are and avoid it as much as you can. Ultimately it still boils down to you and your own brain, not anyone else.
  - montenegrohugo 8y ago
    I am vehemently against that notion. If your only point of contact is people who speak spanish, you will never learn english. If your only point of contact is people that think that the world is flat, then most likely you will grow up believing the same. If everyone around you is insane, then it is exceedingly like you will be too. Again, my belief is that you are a product of 1. Your environment and 2. Your genetic programming. And humans are social creatures, if the people that surround you are all in a certain way, you will probably tend that way too.
    - 8y ago
sergioisidoro 8y ago
This is nothing new, and I have a hunch we're going to find more subtle mental changes associated with external infections (not just extreme dementia, paranoia, and seizures). Things that people currently associate with innate personality traits. One example is the personality changes that toxoplasmosis can induce to humans, even when being latent. And I would guess that these will go undiagnosed for most people. https://www.scientificamerican.com/article/common-parasite-linked-to-personality-changes/ https://www.scientificamerican.com/article/common-parasite-l...
- somebodythere 8y ago
  There is evidence that before you develop symptoms, people with the flu are more likely to have social interactions: https://www.psychologytoday.com/us/blog/darwins-subterranean-world/201801/does-the-flu-trick-people-being-sociable https://www.psychologytoday.com/us/blog/darwins-subterranean...
TheSpiceIsLife 8y ago
> Today Singer says that ... Treatments and medications for OCD and ADHD already exist, they say, and should be enough. Is this true? Treatments and medications, yes, but do any of the mainstream treatments or medications do anything to actually cure these conditions?
- krageon 8y ago
  Children that receive methylphenidate suffer from less severe ADHD symptoms later in life, supposedly. If you look at it through this lens it becomes ethically problematic to deny them the medication, especially because it will not do this in adults (obviously it still treats the symptoms in adults, it just doesn't make them less bad over time).
tomhoward 8y ago
I have an n=1 anecdata report on this topic, that some might be interested to know about. I'd long experienced mild/moderate mental illness, including anxiety, depression, obsessiveness, sluggish cognition, possibly some ASD symptoms and possibly some personality disorder symptoms. After my research led me to a possible link between inflammation/immunity/chronic infections and mental illness, I started attempting to influence this by adopting anti-inflammatory diets (paleo etc) and other approaches to supporting the immune system and fighting off chronic infection. I found that at certain points, my physiological symptoms of inflammation/infection (most notably gum/tongue inflammation, digestive symptoms and tinnitus, all of which I'd had since early adolescence) would rapidly resolve, and this would be accompanied by a profound change in my mental health and sense of wellbeing: anxiety/depression would be replaced by confidence and optimism; lethargy and mental sluggishness would be replaced by physical energy, creativity, productivity and accomplishment; anger and resentment towards people in my life would be replaced by kindness and compassion; my chaotic, shambolic lifestyle would be replaced by orderliness. However, these states of wellbeing would be accompanied by a nagging sense of fear and dread, that this version of myself wasn't the "real me", that it was unsafe for me to be in this state of health, and that I needed to go back to being my anxious, depressed, sluggish old self. Sure enough, every time, within a few days I was back to where I was before. It was a cycle that repeated several times over several years, during which I was torn between frustration and optimism, knowing that it was possible for me to get into a really good state of physical and mental health, but not knowing how to stay there long term. The turning point came when I discovered and adopted a set of emotional healing practices that seek to identify and resolve deeply-held traumas and fears. I've been undertaking these practices consistently for about 6 years, and slowly but surely, my mental and physiological symptoms are steadily resolving, and all in a way that makes me feel very comfortable at every step of the process. They're not all fully resolved yet; many of the symptoms I described above are still there to some degree, but with much less severity than when I was at my worst, and there's been a consistent enough improvement since I started this approach, that it feels like it's just a matter of time. I'm well aware that it will take for me to achieve that state - for all symptoms of inflammation AND all symptoms of mental illness to be resolved - for my experience to be evidence of anything meaningful. The hypothesis (which is not my own, it is from the scientist and writer whose ideas inspired me to try this approach) is that the immune system is heavily influenced by chronically held, unresolved emotions and unprocessed bad experiences. Thus, if one is chronically stuck in a state of trauma, fear, or other negative emotion, the immune system will function in such a way that allows chronic infections to develop, leading to inflammation, which then leads to cascading effects on bodily systems including the nervous system, the hormonal system (particularly the HPA axis), the mitochondrial system and many others. It may be because the body is devoting resources to being in a fight-or-flight state, and leaving immunity as a lower-order priority. Or it may be that the mind/body deliberately lowers the immune system and allows these effects to happen, as a form of self-punishment (in the case of profound guilt) or to keep the self out of harm's way (a kind of trauma-induced hibernation). I'd be unsurprised to find that either mechanism could apply depending on the preconditions, as could many others. I raise it in the context of this article as I think it's relevant to the question of causality with respect to infections and mental health. Given what I've experienced, it's no surprise to me to read the story of Isak McCune at the beginning of the article, in which the contraction of an infection seemed to be a trigger for serious mental illness. But one still needs to explain why only some people who contract this infection end up with the mental illness (in Isak's case, there's no mention that the brother who'd had four bouts of strep infections had any comparable mental illness symptoms). Equally, for many people who end up in a state of mental illness, it comes after a severe trauma or a sequence of traumatic events (one can find many studies linking PTSD with infections and inflammation). There's no need to postulate an infection as a primary cause, as we can observe the events that led the person into their state of mental illness It makes sense to me, in theory and based on my own experience-to-date, that it is a combination of genetic preconditions, experiences, emotional states, infection exposures, immune/inflammatory responses and others, that can all conspire to result in a state of mental illness.
wpasc 8y ago
As a person who has an autoimmune illness (so I'm biased), I believe that immune system research is woefully underfunded. I lot of literature I've been reading recently is showing it's involvement in a whole host of "non-immune" diseases and many autoimmune illnesses (MS, Lupus, CFS, etc.) are shrouded in mystery. I think that given the immune system's involvement in so many other diseases, basic research into its workings is really underfunded when compared to many other diseases that might derive benefit from more immune system research.
Lxr 8y ago
The reverse question is equally interesting - to what extent can we influence the activity of our immune system by controlling stress levels, practicing mindfulness, and the like? I think there is a lot still to be discovered about this.
DubiousPusher 8y ago
Just to be clear, PANDAS is not just "controversial". Widely, it is not accepted as a specific condition. The sudden onset of childhood psychosis is a recognized syndrome but including any mention of autoimmune or strep in naming the syndrome is getting way ahead of ourselves. https://sciencebasedmedicine.org/a-pandas-story/ https://sciencebasedmedicine.org/a-pandas-story/

137 points by dnetesn 8y ago

Very interesting read. I always wonder about the criticisms of new solutions that are working as magically as they seem to be in the article. The kids started taking antibiotics, and soon thereafter had obvious improvement that led to them being cured eventually. Of course you can say sample size wasn't large enough to make any conclusions, but what is their (critics of PANDAS) answer to the fact that the antibiotics worked? Is it pure coincidence? Or some other mechanism in play? If it was another mechanism in play then at the very least I would think that autoimmune treatment should be used as a backup plan in case typical OCD, ADHD, etc. drugs aren't working as shown through the article. Of course I am not a medical researcher so this may have an obvious answer, but I always wanted to know how critics go beyond the "n=1" argument to disprove new solutions that seem to work perfectly.

maxerickson 8y ago
They pretty much have to come up with a better explanation.
TheSpiceIsLife 8y ago
Someone correct me if I'm wrong, but aren't the typical ADHD medications amphetamine and methylphenidate? Shouldn't these two powerful stimulants be medications of last resort?
- testvox 8y ago
  They are, but ADHD is particularly unresponsive to other interventions. So those drugs are usually what ends up being the only effective treatment anyways.
- krageon 8y ago
  Giving methylphenidate to children with ADHD actually improves their symptoms later in life (even if they stop taking the medication).
tyu100 8y ago
This is covered in the article: these rare chidhood neurologial diseases are considered multi-factorial and antibiotics may or may not work in some cases, at some stage of disease onset. I would be extremely wary of self-reported miracle cures for chronic diseases as well. 'Liberation treatment' for MS had many fantastic reports of patients throwing away their crutches and the like but of course turned out to be totally ineffective.

simion314 8y ago

The article states as a fact that in present all mind illnesses are get blamed on the mind and not on the environment or body but we read everywhere that the causes for many such illnesses are in the body or environment. The problem IMO is that it takes a long time until correlations and later causation are found

barking 8y ago
AFAIK twin studies where babies were adopted suggest that schizophrenia is likely to be genetic in causation to a large degree. That doesn't rule out the common environment of the womb of course.
- Nasrudith 8y ago
  I thought the nazis proved that it /wasn't/ genetic strongly by murdering nearly every diagnosed schizophrenic under their domain. The rates were unchanged. Maternal nutrition seems far more likely given the prevalence being lowest in wealthier countries and higher in poorer countries on maps. Granted it may technically be epigenetic.
  - krageon 8y ago
    All they proved is that murdering all people (that they could find) with schizophrenia doesn't lower the incidence rate of schizophrenia. This paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2800142/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2800142/ discusses a few of the reasons why that could be the case, but obviously it doesn't make grand claims.
    - Nasrudith 8y ago
      Interesting that sufficient complexity may also work as a reason. I would have expected some deceease in a genetic context but I suppose sickle cell anemia is another example with simpler structuring given it is partially adaptive and partially maladaptive given one means malaria resistant blood and two means concave red cells bad at their job. Even if malaria vanished a thousand years ago the trait would probably stick around today. Thanks for the link and furthering my understanding. I wonder how common "summed" traits are where a few to some are good to have while too many or too few is a bad thing. I heard of one computer example which by no means biologically proves anything apparently too high a learning rate caused some neural networks to start making increasingly bizzare associations and caused the convergence rate to plummet instead of improving past a certain point as spurious correlations resulted in incoherence. The schizophrenia thought disorder resemblance was explicitly noted.

callesgg 8y ago

I believe that most psychological "issues" arise from more rationally explainable underlying problems than our current psychological understanding is able to explain. We lack the models to analyze and research how different diagnoses are related to each other. Psychology today is a bit to obsessed with the surface structure of the mind, and the behavior that it causes. We need something like theoretical physics for the mind where we model more underlying functions not surface behavior. The mind might however be so complex that it is impossible. But on some level i think there is abstraction levels that can be modeled.

krageon 8y ago
It might be impossible to model with the technology that we have right now, but it cannot be impossible at all. Unless you believe consciousness contains some amount of magic, in which case all bets are off.
- callesgg 8y ago
  It might be impossible in the same way that it is impossible to beak an RSA key. To many underlying components making it impossible to extract the underlying components unless you already know what they are.

montenegrohugo 8y ago

What if you grow up around insane people? What if you are daily surrounded by people with faulty reasoning and illogical, biased conclusions? Would you not adopt these neural mechanics too? You are a product of your environment, and if your environment is insane, you will be too.

s-shellfish 8y ago
Autonomy and self direction in chaotic environments are important. Having a strong value system as a foundation for which to make decisions on is essential. It's essential that this value system is not compromised, because loss of identity, loss of self, loss of autonomy, loss of direction. Chaotic environments comprising of selves direct the individual self when values are lost. It's important to have a soul, and a heart. It's important to avoid judgement for differentness, or sameness. Everything is important when something has been lost. There's only so much a singular self can handle from an environment that is chaotic. Insane is generally not a nice word. Social environment in relation to individual.
WilliamEdward 8y ago
It could just as easily be the opposite - seeing insane people could make you less likely to go insane because you see how damaged they are and avoid it as much as you can. Ultimately it still boils down to you and your own brain, not anyone else.
- montenegrohugo 8y ago
  I am vehemently against that notion. If your only point of contact is people who speak spanish, you will never learn english. If your only point of contact is people that think that the world is flat, then most likely you will grow up believing the same. If everyone around you is insane, then it is exceedingly like you will be too. Again, my belief is that you are a product of 1. Your environment and 2. Your genetic programming. And humans are social creatures, if the people that surround you are all in a certain way, you will probably tend that way too.
  - 8y ago

sergioisidoro 8y ago

This is nothing new, and I have a hunch we're going to find more subtle mental changes associated with external infections (not just extreme dementia, paranoia, and seizures). Things that people currently associate with innate personality traits. One example is the personality changes that toxoplasmosis can induce to humans, even when being latent. And I would guess that these will go undiagnosed for most people. https://www.scientificamerican.com/article/common-parasite-linked-to-personality-changes/ https://www.scientificamerican.com/article/common-parasite-l...

somebodythere 8y ago
There is evidence that before you develop symptoms, people with the flu are more likely to have social interactions: https://www.psychologytoday.com/us/blog/darwins-subterranean-world/201801/does-the-flu-trick-people-being-sociable https://www.psychologytoday.com/us/blog/darwins-subterranean...

TheSpiceIsLife 8y ago

> Today Singer says that ... Treatments and medications for OCD and ADHD already exist, they say, and should be enough. Is this true? Treatments and medications, yes, but do any of the mainstream treatments or medications do anything to actually cure these conditions?

krageon 8y ago
Children that receive methylphenidate suffer from less severe ADHD symptoms later in life, supposedly. If you look at it through this lens it becomes ethically problematic to deny them the medication, especially because it will not do this in adults (obviously it still treats the symptoms in adults, it just doesn't make them less bad over time).

tomhoward 8y ago

I have an n=1 anecdata report on this topic, that some might be interested to know about. I'd long experienced mild/moderate mental illness, including anxiety, depression, obsessiveness, sluggish cognition, possibly some ASD symptoms and possibly some personality disorder symptoms. After my research led me to a possible link between inflammation/immunity/chronic infections and mental illness, I started attempting to influence this by adopting anti-inflammatory diets (paleo etc) and other approaches to supporting the immune system and fighting off chronic infection. I found that at certain points, my physiological symptoms of inflammation/infection (most notably gum/tongue inflammation, digestive symptoms and tinnitus, all of which I'd had since early adolescence) would rapidly resolve, and this would be accompanied by a profound change in my mental health and sense of wellbeing: anxiety/depression would be replaced by confidence and optimism; lethargy and mental sluggishness would be replaced by physical energy, creativity, productivity and accomplishment; anger and resentment towards people in my life would be replaced by kindness and compassion; my chaotic, shambolic lifestyle would be replaced by orderliness. However, these states of wellbeing would be accompanied by a nagging sense of fear and dread, that this version of myself wasn't the "real me", that it was unsafe for me to be in this state of health, and that I needed to go back to being my anxious, depressed, sluggish old self. Sure enough, every time, within a few days I was back to where I was before. It was a cycle that repeated several times over several years, during which I was torn between frustration and optimism, knowing that it was possible for me to get into a really good state of physical and mental health, but not knowing how to stay there long term. The turning point came when I discovered and adopted a set of emotional healing practices that seek to identify and resolve deeply-held traumas and fears. I've been undertaking these practices consistently for about 6 years, and slowly but surely, my mental and physiological symptoms are steadily resolving, and all in a way that makes me feel very comfortable at every step of the process. They're not all fully resolved yet; many of the symptoms I described above are still there to some degree, but with much less severity than when I was at my worst, and there's been a consistent enough improvement since I started this approach, that it feels like it's just a matter of time. I'm well aware that it will take for me to achieve that state - for all symptoms of inflammation AND all symptoms of mental illness to be resolved - for my experience to be evidence of anything meaningful. The hypothesis (which is not my own, it is from the scientist and writer whose ideas inspired me to try this approach) is that the immune system is heavily influenced by chronically held, unresolved emotions and unprocessed bad experiences. Thus, if one is chronically stuck in a state of trauma, fear, or other negative emotion, the immune system will function in such a way that allows chronic infections to develop, leading to inflammation, which then leads to cascading effects on bodily systems including the nervous system, the hormonal system (particularly the HPA axis), the mitochondrial system and many others. It may be because the body is devoting resources to being in a fight-or-flight state, and leaving immunity as a lower-order priority. Or it may be that the mind/body deliberately lowers the immune system and allows these effects to happen, as a form of self-punishment (in the case of profound guilt) or to keep the self out of harm's way (a kind of trauma-induced hibernation). I'd be unsurprised to find that either mechanism could apply depending on the preconditions, as could many others. I raise it in the context of this article as I think it's relevant to the question of causality with respect to infections and mental health. Given what I've experienced, it's no surprise to me to read the story of Isak McCune at the beginning of the article, in which the contraction of an infection seemed to be a trigger for serious mental illness. But one still needs to explain why only some people who contract this infection end up with the mental illness (in Isak's case, there's no mention that the brother who'd had four bouts of strep infections had any comparable mental illness symptoms). Equally, for many people who end up in a state of mental illness, it comes after a severe trauma or a sequence of traumatic events (one can find many studies linking PTSD with infections and inflammation). There's no need to postulate an infection as a primary cause, as we can observe the events that led the person into their state of mental illness It makes sense to me, in theory and based on my own experience-to-date, that it is a combination of genetic preconditions, experiences, emotional states, infection exposures, immune/inflammatory responses and others, that can all conspire to result in a state of mental illness.

wpasc 8y ago

As a person who has an autoimmune illness (so I'm biased), I believe that immune system research is woefully underfunded. I lot of literature I've been reading recently is showing it's involvement in a whole host of "non-immune" diseases and many autoimmune illnesses (MS, Lupus, CFS, etc.) are shrouded in mystery. I think that given the immune system's involvement in so many other diseases, basic research into its workings is really underfunded when compared to many other diseases that might derive benefit from more immune system research.

Lxr 8y ago

The reverse question is equally interesting - to what extent can we influence the activity of our immune system by controlling stress levels, practicing mindfulness, and the like? I think there is a lot still to be discovered about this.

DubiousPusher 8y ago

Just to be clear, PANDAS is not just "controversial". Widely, it is not accepted as a specific condition. The sudden onset of childhood psychosis is a recognized syndrome but including any mention of autoimmune or strep in naming the syndrome is getting way ahead of ourselves. https://sciencebasedmedicine.org/a-pandas-story/ https://sciencebasedmedicine.org/a-pandas-story/