
False hope for autism in the stem-cell underground - chc2149
https://www.spectrumnews.org/features/deep-dive/false-hope-autism-stem-cell-underground/
======
kosma
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
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
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.

------
esalman
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.

------
spraak
> 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...](https://stemcellsjournals.onlinelibrary.wiley.com/doi/full/10.1002/sctm.18-0251)

------
bbrian
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.

------
loceng
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.

~~~
mb_72
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.

~~~
loceng
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/](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...](https://stemcellsmovie.com/2019/02/january-25-2019-exclusive-
fetal-stem-cell-lecture/)

Here's their page on Crohn's -
[https://www.emcell.com/en/list_of_diseases/ulcerative-
coliti...](https://www.emcell.com/en/list_of_diseases/ulcerative-colitis.htm)
\- 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](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.

------
otakucode
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.

