False hope for autism in the stem-cell underground | Hacker News Reader

False hope for autism in the stem-cell underground

spectrumnews.org

37 pointschc214922 comments

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.

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.

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.

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.

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.

> 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.

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.

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.

In some, autism manifests as constant screaming, violent outbursts, or meltdowns. Many are non-verbal. Keep that in mind.

Are you a family member of a severely, dysfunctionally autistic kid? You can't act like these families don't suffer to some degree.

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.

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.

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.

I just want to say that you captured the pain and suffering you feel very well here. This is very well put, it's beautiful and poetic in its own way, and it really helped me understand how you must feel.

> Autism is at best as much fun as being born with arthritis.

...for some but not all autistic people.

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.

> 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/1...

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.

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.

I'm very sorry to hear of your condition, and can't imagine what it's like to be in your situation. I have Crohn's disease - nothing equivalent to you, but it is 'something' for which if I thought stem cell treatment would help then I would give it a try.

That said, what evidence is there that any stem cell treatments actually have a beneficial effect? A lot of what you have written echos speculation or hopeful comments I've read about other non-proven treatment methods for stem cells or, if I may put if this way, other 'alternative' treatments.

With my own condition, I have a couple of specialist doctors with whom I discuss advances in treatment of my Crohn's and research efforts, but in terms of the action taken nothing has changed for some years as according to their best advice, and my separate reading, there is nothing better - yet - for me. I also tend to reject the "this diet worked for me", "this drug worked for me", "this (x) worked for me" anecdotes, as with Crohn's you are always one meal away from moving from remission to a flare-up.

Sorry for delay in responding - is difficult at times to have the motivation and focus to respond to specific things.

First thing to understand is that 99.99% of doctors everywhere are just as naive and lack knowledge or any understanding of stem cells as well consumers, and more and more they are being indoctrinated by traveling sales people selling different tissue product like amniotic tissues, or sell conferences for training for offering more common (relative) like PRP (Platelet Rich Plasma: concentrated healing factors from your blood using a centrifuge to separate it - then injecting the PRP into areas to help support healing - usually along with bone marrow stem cell concentrate), or adult stem cells from adipose derived stem cells (from your tummy fat) or adult bone marrow (the bone marrow aspirate product, most commonly taken from the Iliac crests from either or both sides of the pelvis). Adult stem cells are the only stem cells currently legal to use in the US, and they're not allowed to culture them outside of the body to have more available for re-injection - say 500 million compared to 100 billion. There is a massive difference between adult stem cells and fetal tissue stem cells as well - they aren't as multi-potent, they can't turn into any cell. There is a lot of research necessary in simply identifying stem cell differentiations and what they are most potent for, whether they can be injected through IV or perhaps needing to be injected to a specific area, and so on.

Because there's so few places in the world where fetal stem cells are being used, perhaps only one that has been doing it for decades and in a clinical/research setting, there's little distribution of first-hand experience of doctors seeing benefits - and so of course they will be skeptical. Even for using adult stem cells the population of doctors who have seen any patients who went for treatment is still low.

Many doctors are skeptical even when hearing of results first-hand. My previous family physician, even though I had successful stem cell injections - both from adipose fat derived and bone marrow, with varying levels of potency on their healing over a two year period - him being an older man, he still didn't believe and was skeptical and disbelieving the healing that happened would last. Stem cells treatments aren't cheap, and I'm not wasteful - if they didn't work and I couldn't feel the healing, the significant and permanent reduction in pain each time then I wouldn't have continued. I live in Canada and have run into a number of problems with the healthcare system. Many seem to be systemic. One main conclusion I've come to is that doctors/professionals are primarily selected for their memorization skills vs. their critical thinking skills - so them integrating new information is difficult for them.

Re: Crohn's -

I'll assume you've done the dietary changes for Crohn's - and I'll ask if you've tried purely a carnivore diet (with no plants etc in the diet)? If you haven't tried carnivore diet (without seasoning except Himalayan salt for electrolytes) then I would recommend starting it immediately; the main thing to understand with carnivore diet is you need to eat a high fat diet, don't eat only or mostly lean meat - the more fat the better, otherwise people end up with different digestive issues.

Here's the link to the free documentary of the clinic I went to - https://stemcellsmovie.com/watch-the-god-cells/ - and a recent lecture/talk he gave at a conference January 25/2019 - https://stemcellsmovie.com/2019/02/january-25-2019-exclusive...

Here's their page on Crohn's - https://www.emcell.com/en/list_of_diseases/ulcerative-coliti... - they list their research numbers (before transplant, 1 month after, 6 months after), as well as have some video testimonials of clients/patients specific for Crohn's.

I was surprised at how well done and real the documentary felt. I believe the film maker spent 5 years filming to compile film and it. He follows people around who've done treatment including even going to where they live to interview their friends.

Here's the clinics main testimonials page - https://www.emcell.com/en/testimonials.htm

To note, I have a level of skepticism too - and I prefer to not refer people to places that I haven't had a solid positive experience from myself. However with my previous positive experiences of healing with my own stem cells being used (albeit adult) and the logic relating to the biology, this is my best chance for initiating holistic healing throughout my body. It's frustrating and will be difficult to wait the 3 months they said it would take for the healing relating to my symptoms to heal, however it makes sense with the speed of the growth of fetal tissue - it does take time for all of these processes to unfold, for stem cells to duplicate and differentiate.

The fact that all that the previous doctors were doing before removing adult stem cells and the supportive bone marrow fluid from my body, and then just relocating it directly into areas of injury meant that the healing abilities were already in my body - they were just locked where they were, the healing processes not activated. It seems like fetal stem cells most activate healing processes, and have the highest multi-potent ability. There are other promising treatments like MSC (mesenchymal stem cells) that through IV will initiate the body's healing potential, the MSC being taken from medical waste product from births (Wharton's Jelly of the umbilical cord) - which are called "Zero Day MSC" - however note that MSC cells are already 9 months old - the age of a newborn baby, and so they likely aren't as multi-potent as the stem cells from 7 to 12 week old fetal tissue. MSC however are young and potent in their duplication process and signalling for healing compared to the adult stem cells of whatever age and health your own body's currently are, so they would have an improvement over your own stem cells capabilities. In the future I envision a protocol for cascading through various treatments, and with proactive/preventative medicine and practices we'll be able to avoid many of these holistic dis-ease states.

matt@engn.com is my email if you have any questions, I would be interested to know if you go to the clinic as well and followup with you.

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.

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