6 ms·

False hope for autism in the stem-cell underground

37 points by chc2149 8y ago

esalman 8y ago
My uncle has chronic kidney disease (CKD). On my recent visit back to my country, my aunt showed me a clip of a news segment aired in a local TV channel. It was a report on a local clinic offering stem cell treatment for CKD patients. The report included interviews from patients who've supposedly been cured through the treatment. Google reviews of the clinic says that they offer 50:50 chance of success in exchange for nearly $5000, which is a lot by South-East Asian standard. I looked into Google scholar and sure enough, found that stem cell treatment for CKD is still at it's infancy and nowhere near to being prescribed for personal treatment.
- deleted 8y ago
  [deleted]
kosma 8y ago
It's not a false hope for autism; it's a false hope for parents of autistic kids. Autism is not a mysterious affliction that takes entire families in its hold and shouldn't be portrayed as such.
- openasocket 8y ago
  I mean, it depends. Autism is a spectrum disorder. There are people with autism who are fully functional and successful members of society. And there are people with autism who are incapable of speaking or communicating. For people with very severe autism the world is a constant assault on their senses, making it nearly impossible for them to interact with others.
  - mamon 8y ago
    Yes, exactly. My friend is working as rehabilitation specialist for autistic kids, and from what she tells me life for those kids is nothing like typical HN meme 'autism is my superpower' implies.
    - deleted 8y ago
      [deleted]
  - deleted 8y ago
    [deleted]
- curious_fella_ 8y ago
  Are you a family member of a severely, dysfunctionally autistic kid? You can't act like these families don't suffer to some degree.
- pubby 8y ago
  In some, autism manifests as constant screaming, violent outbursts, or meltdowns. Many are non-verbal. Keep that in mind.
- taneq 8y ago
  This is why I feel like merging Asperger's into Autism was a mistake. When some people say Autism, they mean being slightly non-neurotypical in a way that maybe adds some challenges to the person's life, but is more of a difference than a disability. When other people say Autism they mean severe behavioural and cognitive difficulties and round-the-clock specialist care. Each of these people is speaking from their own experience and yet this one label covers an incredibly wide range of implications.
  - sgift 8y ago
    > This is why I feel like merging Asperger's into Autism was a mistake. Merging Asperger's into Autism was the natural result of finally evaluating all of his research. This shows that he always worked with persons who are at all parts of the spectrum, including the worst cases people think about when they hear autism. Historical circumstances led to him being very popular for the "light" cases (i.e. the cases which didn't lead to immediate termination of life under the Third Reich), but the body of his research shows that he always was aware of the full nature of it. Unlike people who split it in autism, high-functioning autism, Asperger and whatever "separate" things they found.
  - openasocket 8y ago
    I can understand why they changed the definitions, because both conditions have the same root cause (an issue with sensory processing) but I think it was a mistake. You've got a completely different presentation, and completely different treatments. So now any research into developing new therapies for autism will have to specify which subset of Autism spectrum disorder they are targeting, subsets which may not be well defined or consistent. I think eventually they will carve out sub-categories of autism based on which therapies they best respond to.
- PhasmaFelis 8y ago
  Except when it is. As an autistic adult, it's frustrating to me that high-functioning autistics and parents/caregivers of low-functioning autistics never seem to realize that the other kind exists. You wind up with people insisting that perfectly functional human beings need to be cured, which those same human beings insist that there's nothing wrong with a kid who can't speak or dress himself at age 10.
- kstenerud 8y ago
  No, it doesn't necessarily "take entire families in its hold", but its effects on how you coexist with the world are nontrivial. Autism is at best as much fun as being born with arthritis.
  - DanBC 8y ago
    > Autism is at best as much fun as being born with arthritis. ...for some but not all autistic people.
  - krageon 8y ago
    That's a nice, negative outlook and seeing as this is based on personal observation (ie anecdotes) and you made a grand sweeping statement: It's not hard to see that you are wrong if you've spent any time interacting with someone on the spectrum that has found a spot in society they fit into. I'd say that this is no different for neurotypical people. If you find a good place where you can work and someone can pay you for it, and you can furnish your life in such a way that it doesn't clash with you, then you will be happy. Your premise that it compares at all to something that gives someone constant low-key pain is spurious and does a disservice to the fine human beings it refers to.
    - kstenerud 8y ago
      I'm talking about falling into the uncanny valley of appearing almost human, and creeping people out. I'm talking about getting blindsided by some bad noise or light or thing moving wrong, and having to leave right in the middle of something. I'm talking about remembering to actively suppress your urge to rock or fidget, because otherwise people will start treating you like you're nuts. I'm talking about not knowing that people are pissed off at you, for weeks, even years, even though everyone around you knows it, but won't say anything because you're expected to know. I'm talking about not being able to look in someone's eyes, but knowing you're expected to, and some days it's especially hard. I'm talking about the room suddenly becoming silent, again, and you're left wondering what you fucked up this time. I'm talking about relationships slowly going off the rails because you can't seem to express yourself properly, and the other person, though trying to be understanding, is losing patience. Like arthritis, it creeps and moves, and some things are painful one day, not painful the next. But it's ever present, and catches you unaware.
- SmellyGeekBoy 8y ago
  I honestly can't believe this is the top voted comment. There's a world of difference between HNers who've self-diagnosed themselves as autistic because they're a bit socially awkward and people like my severely autistic friend who needs specialist care and for whom life is a constant struggle. It's incredibly insulting, actually.
otakucode 8y ago
The way this woman approaches the medical care of her child is one of the most terrifying and heartbreaking things I have read in a long time. Any parent who uses their emotions as the primary (if not sole) driver of what medical care their child receives should not be permitted to have guardianship over a child and should probably be in assisted living themselves. She "didn't like that it required sedation". She "didn't want to overload his system". She "felt more comfortable with" the surgeon. Those emotions are trained responses. They can be, and aggressively are, manipulated in underhanded and unexpected ways. They are an outgrowth of an intuition that grows out of the way the brain functions in the absence of conscious guidance - a functioning that evolved just to keep human beings alive while living in small tribes on an African savannah. It has no place in modern society, and is almost always wrong. That a parent would care so little about their child that they are not willing to engage in some critical thinking and analysis that ignores their own emotion is disgusting.
loceng 8y ago
There is a lot of misinformation related to stem cells, and a lot of uneducated and desperate people being taken advantage of by doctors - whether there's malice or not is another question. I have been struggling with and problem solving chronic pain for many years now. Stem cells have been the only thing to help heal the sources of injury, and so I have done plenty of research over the years, followed and understood where research is at, what treatments are available, and how limited the availability for best treatments actually are. It has been very difficult to find a clinic willing to treat my fairly unique case, as for me, aside from severe post-LASIK eye pain from corrective eye surgeries 5 years ago that seems to have triggered the cascade of chronic pain-related problems I've had, I have many minor but significant pains throughout my body. Injuries from high school football, I dislocated jaw 2 years ago, whiplash from a bicycle collision around 2 years ago, and so on. In total the amount of pain leads to something called Central Sensitization - and that disrupts my executive function, decision making, and emotional processing. The protocol I had started doing was from bone marrow aspiration (pulling out your own bone marrow as stem cell source), doing post-processing, and then re-injecting at sources of pain for healing. It was working, however each treatment they have limited fluid and could only treat so many of the injuries - and there's no treatment or cure for post-LASIK neuropathic known yet, which seems to be the largest offender/contributor to my nervous system being overwhelmed. The problem with this route is the clinic requires 4 to 6 months between treatments, so at that rate it would take 3+ years to try to target all of the sources of injuries with injections, and once again not being able to attempt to heal the post-LASIK surgery corneal pain. I had been trying to find a holistic option or better protocol that would initiate healing throughout my body or provide more bone marrow, my own stem cells, via culturing them outside the body - or an IV or "zero day"/day-old MSC cells taken and cultured from umbilical cord waste tissue of births - however the two clinics I asked about it denied me as being a candidate. I've been desperate, was desperate and out of options and out hope until a few weeks ago. I flew to the Europe a few days ago. Yesterday I did my first fetal stem cell treatment at the clinic here that I only found out existed 2.5 weeks ago - randomly through a regular patron at a cafe I would frequent and shared my story with - to which he told me about a documentary on the clinic that his friend went to and raved about. The word fetal stem cells isn't uttered at any clinics in the US due to the political and religious backlash - and they aren't legal or available to use in the US, however they are the most multi-potent stem cells there are. The age and potency (multi-potency capability) of the stem cells used matter. Your own stem cells being the age you are with their slower duplication rate and limited as to what cells they can differentiate into, and the fetal tissue being used being 7 to 12 weeks of age - after 9 months these fetal stem cells would otherwise form a whole human, a baby, and with their multi-potent capability differentiate into every cell possible - with extremely fast cell duplication time. The clinic uses legally aborted fetuses (donated and tested). The healing, autoimmune regulation, tissue regeneration, etc take different amounts of time depending on what's going on and how progressed a dis-ease state is. Later today I go back to the clinic for the second round of treatment. The first was liver fetal stem cell tissue injected through IV, and today they will inject into tummy adipose (fat) a variety of other specific fetal tissues to allow them to culture there; the most stable body temperature is there, and is best for growth. This clinic has been using and doing research with fetal stem cells for 25+ years now. Autism isn't one-solution-fits-all, the right stem cells seem to be able to greatly reverse symptoms - at least it seems if the autism is autoimmune related. A common problem that exists is the phrase "stem cells" is used in a non-specific way all the time, likewise the "wow" factor and language used to describe benefits seems to overlay a lot - whether that is malicious, greed, carelessness or a combination - I'm sure it varies based on each person's integrity who's able or looking to earn revenue or make profit. It does however take pioneers, likely people who are desperate who are willing to try different treatment options - who then will create the positive stories and trustworthy referrals. Regulation and educating the population about the differences, along with research to evolve our understanding, knowledge, and treatments further are needed. There is also the status quo medical industrial complex that has their eggs in some baskets that aren't required anymore with how stem cells can heal. It's too early for me to feel comfortable giving an update of how I feel after the first IV treatment, and I'll want to wait and see after the treatment today goes today before commenting publicly. In paraphrasing, I was told whatever healing would happen would happen by 3 months - specific for how I described the pain. The doctor believed it should help as well, seeing as I had previously done bone marrow derived stem cell treatments that were healing the sources of pain that were injected. If or once the pain is low enough then I will have to go through physical rehabilitation to get proper realignment again, strengthen muscles properly. It will take time for my brain and reactions to adjust too to the pain, and with reduced impact my executive function will be less impacted - and so there should be a cascade of shifts there as well in how capable I feel and my overall quality of life. It's too soon to say, however the fetal stem cells are the absolute best chance I have for quickly healing - based on my previous experiences with stem cell and my research. The logic of it has me hopeful.
bbrian 8y ago
There is a class of drugs called SARMs which are effectively used in bodybuilding but are not FDA approved. Consider too the numerous psychoactive drugs that have been subjectively reported as benign and beneficial, yet are banned. I have no doubt there are many medicines that have been discovered but never brought to market. Why not is the big question: that data isn't generally available. If I am ever struck by chronic illness, I will not be waiting for the FDA to tell me what does and does not work.
- deleted 8y ago
  [deleted]
spraak 8y ago
> Preclinical models have shown that umbilical cord blood contains effector cells that, through paracrine signaling, suppress inflammation and alter brain connectivity 32, 33. We have reported significant improvements in behavior, including increased social functioning, improved communication abilities, and decreased clinical symptoms, following treatment with a single infusion of autologous cord blood in a phase I open‐label trial for children with ASD [1] [1] https://stemcellsjournals.onlinelibrary.wiley.com/doi/full/10.1002/sctm.18-0251 https://stemcellsjournals.onlinelibrary.wiley.com/doi/full/1...

37 points by chc2149 8y ago

My uncle has chronic kidney disease (CKD). On my recent visit back to my country, my aunt showed me a clip of a news segment aired in a local TV channel. It was a report on a local clinic offering stem cell treatment for CKD patients. The report included interviews from patients who've supposedly been cured through the treatment. Google reviews of the clinic says that they offer 50:50 chance of success in exchange for nearly $5000, which is a lot by South-East Asian standard. I looked into Google scholar and sure enough, found that stem cell treatment for CKD is still at it's infancy and nowhere near to being prescribed for personal treatment.

deleted 8y ago
[deleted]

kosma 8y ago

It's not a false hope for autism; it's a false hope for parents of autistic kids. Autism is not a mysterious affliction that takes entire families in its hold and shouldn't be portrayed as such.

openasocket 8y ago
I mean, it depends. Autism is a spectrum disorder. There are people with autism who are fully functional and successful members of society. And there are people with autism who are incapable of speaking or communicating. For people with very severe autism the world is a constant assault on their senses, making it nearly impossible for them to interact with others.
- mamon 8y ago
  Yes, exactly. My friend is working as rehabilitation specialist for autistic kids, and from what she tells me life for those kids is nothing like typical HN meme 'autism is my superpower' implies.
  - deleted 8y ago
    [deleted]
- deleted 8y ago
  [deleted]
curious_fella_ 8y ago
Are you a family member of a severely, dysfunctionally autistic kid? You can't act like these families don't suffer to some degree.
pubby 8y ago
In some, autism manifests as constant screaming, violent outbursts, or meltdowns. Many are non-verbal. Keep that in mind.
taneq 8y ago
This is why I feel like merging Asperger's into Autism was a mistake. When some people say Autism, they mean being slightly non-neurotypical in a way that maybe adds some challenges to the person's life, but is more of a difference than a disability. When other people say Autism they mean severe behavioural and cognitive difficulties and round-the-clock specialist care. Each of these people is speaking from their own experience and yet this one label covers an incredibly wide range of implications.
- sgift 8y ago
  > This is why I feel like merging Asperger's into Autism was a mistake. Merging Asperger's into Autism was the natural result of finally evaluating all of his research. This shows that he always worked with persons who are at all parts of the spectrum, including the worst cases people think about when they hear autism. Historical circumstances led to him being very popular for the "light" cases (i.e. the cases which didn't lead to immediate termination of life under the Third Reich), but the body of his research shows that he always was aware of the full nature of it. Unlike people who split it in autism, high-functioning autism, Asperger and whatever "separate" things they found.
- openasocket 8y ago
  I can understand why they changed the definitions, because both conditions have the same root cause (an issue with sensory processing) but I think it was a mistake. You've got a completely different presentation, and completely different treatments. So now any research into developing new therapies for autism will have to specify which subset of Autism spectrum disorder they are targeting, subsets which may not be well defined or consistent. I think eventually they will carve out sub-categories of autism based on which therapies they best respond to.
PhasmaFelis 8y ago
Except when it is. As an autistic adult, it's frustrating to me that high-functioning autistics and parents/caregivers of low-functioning autistics never seem to realize that the other kind exists. You wind up with people insisting that perfectly functional human beings need to be cured, which those same human beings insist that there's nothing wrong with a kid who can't speak or dress himself at age 10.
kstenerud 8y ago
No, it doesn't necessarily "take entire families in its hold", but its effects on how you coexist with the world are nontrivial. Autism is at best as much fun as being born with arthritis.
- DanBC 8y ago
  > Autism is at best as much fun as being born with arthritis. ...for some but not all autistic people.
- krageon 8y ago
  That's a nice, negative outlook and seeing as this is based on personal observation (ie anecdotes) and you made a grand sweeping statement: It's not hard to see that you are wrong if you've spent any time interacting with someone on the spectrum that has found a spot in society they fit into. I'd say that this is no different for neurotypical people. If you find a good place where you can work and someone can pay you for it, and you can furnish your life in such a way that it doesn't clash with you, then you will be happy. Your premise that it compares at all to something that gives someone constant low-key pain is spurious and does a disservice to the fine human beings it refers to.
  - kstenerud 8y ago
    I'm talking about falling into the uncanny valley of appearing almost human, and creeping people out. I'm talking about getting blindsided by some bad noise or light or thing moving wrong, and having to leave right in the middle of something. I'm talking about remembering to actively suppress your urge to rock or fidget, because otherwise people will start treating you like you're nuts. I'm talking about not knowing that people are pissed off at you, for weeks, even years, even though everyone around you knows it, but won't say anything because you're expected to know. I'm talking about not being able to look in someone's eyes, but knowing you're expected to, and some days it's especially hard. I'm talking about the room suddenly becoming silent, again, and you're left wondering what you fucked up this time. I'm talking about relationships slowly going off the rails because you can't seem to express yourself properly, and the other person, though trying to be understanding, is losing patience. Like arthritis, it creeps and moves, and some things are painful one day, not painful the next. But it's ever present, and catches you unaware.
SmellyGeekBoy 8y ago
I honestly can't believe this is the top voted comment. There's a world of difference between HNers who've self-diagnosed themselves as autistic because they're a bit socially awkward and people like my severely autistic friend who needs specialist care and for whom life is a constant struggle. It's incredibly insulting, actually.

otakucode 8y ago

The way this woman approaches the medical care of her child is one of the most terrifying and heartbreaking things I have read in a long time. Any parent who uses their emotions as the primary (if not sole) driver of what medical care their child receives should not be permitted to have guardianship over a child and should probably be in assisted living themselves. She "didn't like that it required sedation". She "didn't want to overload his system". She "felt more comfortable with" the surgeon. Those emotions are trained responses. They can be, and aggressively are, manipulated in underhanded and unexpected ways. They are an outgrowth of an intuition that grows out of the way the brain functions in the absence of conscious guidance - a functioning that evolved just to keep human beings alive while living in small tribes on an African savannah. It has no place in modern society, and is almost always wrong. That a parent would care so little about their child that they are not willing to engage in some critical thinking and analysis that ignores their own emotion is disgusting.

loceng 8y ago

There is a lot of misinformation related to stem cells, and a lot of uneducated and desperate people being taken advantage of by doctors - whether there's malice or not is another question. I have been struggling with and problem solving chronic pain for many years now. Stem cells have been the only thing to help heal the sources of injury, and so I have done plenty of research over the years, followed and understood where research is at, what treatments are available, and how limited the availability for best treatments actually are. It has been very difficult to find a clinic willing to treat my fairly unique case, as for me, aside from severe post-LASIK eye pain from corrective eye surgeries 5 years ago that seems to have triggered the cascade of chronic pain-related problems I've had, I have many minor but significant pains throughout my body. Injuries from high school football, I dislocated jaw 2 years ago, whiplash from a bicycle collision around 2 years ago, and so on. In total the amount of pain leads to something called Central Sensitization - and that disrupts my executive function, decision making, and emotional processing. The protocol I had started doing was from bone marrow aspiration (pulling out your own bone marrow as stem cell source), doing post-processing, and then re-injecting at sources of pain for healing. It was working, however each treatment they have limited fluid and could only treat so many of the injuries - and there's no treatment or cure for post-LASIK neuropathic known yet, which seems to be the largest offender/contributor to my nervous system being overwhelmed. The problem with this route is the clinic requires 4 to 6 months between treatments, so at that rate it would take 3+ years to try to target all of the sources of injuries with injections, and once again not being able to attempt to heal the post-LASIK surgery corneal pain. I had been trying to find a holistic option or better protocol that would initiate healing throughout my body or provide more bone marrow, my own stem cells, via culturing them outside the body - or an IV or "zero day"/day-old MSC cells taken and cultured from umbilical cord waste tissue of births - however the two clinics I asked about it denied me as being a candidate. I've been desperate, was desperate and out of options and out hope until a few weeks ago. I flew to the Europe a few days ago. Yesterday I did my first fetal stem cell treatment at the clinic here that I only found out existed 2.5 weeks ago - randomly through a regular patron at a cafe I would frequent and shared my story with - to which he told me about a documentary on the clinic that his friend went to and raved about. The word fetal stem cells isn't uttered at any clinics in the US due to the political and religious backlash - and they aren't legal or available to use in the US, however they are the most multi-potent stem cells there are. The age and potency (multi-potency capability) of the stem cells used matter. Your own stem cells being the age you are with their slower duplication rate and limited as to what cells they can differentiate into, and the fetal tissue being used being 7 to 12 weeks of age - after 9 months these fetal stem cells would otherwise form a whole human, a baby, and with their multi-potent capability differentiate into every cell possible - with extremely fast cell duplication time. The clinic uses legally aborted fetuses (donated and tested). The healing, autoimmune regulation, tissue regeneration, etc take different amounts of time depending on what's going on and how progressed a dis-ease state is. Later today I go back to the clinic for the second round of treatment. The first was liver fetal stem cell tissue injected through IV, and today they will inject into tummy adipose (fat) a variety of other specific fetal tissues to allow them to culture there; the most stable body temperature is there, and is best for growth. This clinic has been using and doing research with fetal stem cells for 25+ years now. Autism isn't one-solution-fits-all, the right stem cells seem to be able to greatly reverse symptoms - at least it seems if the autism is autoimmune related. A common problem that exists is the phrase "stem cells" is used in a non-specific way all the time, likewise the "wow" factor and language used to describe benefits seems to overlay a lot - whether that is malicious, greed, carelessness or a combination - I'm sure it varies based on each person's integrity who's able or looking to earn revenue or make profit. It does however take pioneers, likely people who are desperate who are willing to try different treatment options - who then will create the positive stories and trustworthy referrals. Regulation and educating the population about the differences, along with research to evolve our understanding, knowledge, and treatments further are needed. There is also the status quo medical industrial complex that has their eggs in some baskets that aren't required anymore with how stem cells can heal. It's too early for me to feel comfortable giving an update of how I feel after the first IV treatment, and I'll want to wait and see after the treatment today goes today before commenting publicly. In paraphrasing, I was told whatever healing would happen would happen by 3 months - specific for how I described the pain. The doctor believed it should help as well, seeing as I had previously done bone marrow derived stem cell treatments that were healing the sources of pain that were injected. If or once the pain is low enough then I will have to go through physical rehabilitation to get proper realignment again, strengthen muscles properly. It will take time for my brain and reactions to adjust too to the pain, and with reduced impact my executive function will be less impacted - and so there should be a cascade of shifts there as well in how capable I feel and my overall quality of life. It's too soon to say, however the fetal stem cells are the absolute best chance I have for quickly healing - based on my previous experiences with stem cell and my research. The logic of it has me hopeful.

bbrian 8y ago

There is a class of drugs called SARMs which are effectively used in bodybuilding but are not FDA approved. Consider too the numerous psychoactive drugs that have been subjectively reported as benign and beneficial, yet are banned. I have no doubt there are many medicines that have been discovered but never brought to market. Why not is the big question: that data isn't generally available. If I am ever struck by chronic illness, I will not be waiting for the FDA to tell me what does and does not work.

deleted 8y ago
[deleted]

spraak 8y ago

> Preclinical models have shown that umbilical cord blood contains effector cells that, through paracrine signaling, suppress inflammation and alter brain connectivity 32, 33. We have reported significant improvements in behavior, including increased social functioning, improved communication abilities, and decreased clinical symptoms, following treatment with a single infusion of autologous cord blood in a phase I open‐label trial for children with ASD [1] [1] https://stemcellsjournals.onlinelibrary.wiley.com/doi/full/10.1002/sctm.18-0251 https://stemcellsjournals.onlinelibrary.wiley.com/doi/full/1...