
Benefit of Microbiota Transfer Therapy on autism symptoms and gut microbiota - blockmarker
https://www.nature.com/articles/s41598-019-42183-0
======
arkades
(1) This isn't Nature, it's SciRep. Don't get distracted by the URL.

(2) Nature is an extremely high impact factor journal. However, it's ... not
really a medical journal. Nor a psych journal. Nor a developmental peds
journal. It's a basic sciences journal. What I mean to say is, even if this
were Nature, it'd be a super high-impact journal that isn't actually read by
clinicians who would be best positioned to criticize the study.

(2a) For instance, their bowel transfer prep involved a clean-out with a two
week course of vanco. The only bowel bugs it's used for are c. diff colitis
and staph aureus enterocolitis. The reason it's really only used for that is
because it really doesn't touch any other common bowel inhabitants. It's
useful for those because it doesn't absorbed very effectively, so if you've
got C Diff sitting in the bowel lumen, great, send a wash of vanco down the
pipe. But, uh, for any other bugs in the gut? It's not even second line. So,
how weird that it would be used to knock out pre-existing gut flora and
"suppress pathogenic bacteria." C Diff and MRSA are not the leading pathogenic
gut bacteria. The pre-existing flora are predominantly anaerobes.

(3) An unblinded, uncontrolled trial of a disease whose symptoms are highly
subjective in measure? Excellent. I'm sure they took measures to ensure they
weren't influenced in their subjective analys-

(3a) Oh. The senior author has a bunch of patents out trying to commercialize
probiotics for autism.

(3b) Oh, they used the PGI3, CARS, SRS, and ABC scores. I guess if you fill
out enough bubbles you can overcome the fact that those are still subjective
enough that they're shit for an open-label trial. Whoops.

I don't mean to be overly dismissive. It's a fine pilot. The results are
interesting enough that I'd want to see a real study tackle this. My comments
are mostly aimed at the prevailing sentiment here taking this at face value.

~~~
kosma
(0) There's no control group. This isn't science.

~~~
linuxftw
Perhaps this paper is the 'observation of a phenomenon' which may lead (or has
lead) to the formulation of a hypothesis.

Thus, this paper is saying what the scientific method should test next.

~~~
chiefalchemist
That was my impression as well. The tone seemed to be "we turned over a couple
rocks and we think we noticed a couple things. We want to share that hike in
the Autism woods."

The number of subjects was small. They even added: "We note that due to the
open-label nature of this initial trial, all of the assessments are subject to
placebo effect..."

~~~
gus_massa
The problem is that this kind of studies should be discussed only inside
medical centers where the next more reliable studies are designed. The
discussion with general public degenerates because most people don't
understand the difference between a preliminary study and a good clinical
study. You will see in a few days a press article in a major newspaper with
the title " _Fecal transplant cure definitively autism forever, scientist say_
" and I will cry.

~~~
kosma
This has already happened, and quack doctors are already using this to peddle
fecal transplant cures on local autism groups.

------
pimmen
I have a very mild form of autism but I would say that I suffer from autism.
I'm very sensitive to which environment I can be productive in and I need very
clear protocols for human interaction. It's fine for engineering but I want to
work more with people too (that's generally how you advance career-wise) and I
have big problems knowing when to keep quiet in meetings and what topics for
discussion are poor choices, even though I'm close to 30 years old now. If I
could just be "normal" I think my life would improve immensely.

I say "I think" because I'm not sure if I would like losing the things that
make me "me". A friday night just reading all kinds of odd books to learn new
things is totally fine by me right now and even though I have problems
regulating my emotions I can now, after decades of coping, channel them into
passion to get stuff done. I do however think my childhood would've been much
easier if I was somehow treated as a young child; the years of being bullied
and not making friends have taken its toll on me, something I struggle with to
this day in business settings when I have to deal with unfamiliar people.

~~~
pault
My story is pretty much the same as yours, but I have an extra ten years on
you. I've been able to get it under control (my career is really taking off
now at the age of 39) by practicing it like any other skill. Mostly it's the
art of omission; I consciously suppress my impulse to interrupt people in
meetings and conversation by preparing a response in my head until they
finish. This has the effect of making people think of me as a good listener,
and also gives me time to cut their argument to shreds if they are spewing
nonsense (the old maxim "don't interrupt your enemy while they are making a
mistake"). Also, it's good to be thought of as the quiet smart guy. On the
topic of inappropriate topics, I just don't say anything that isn't related to
work in public conversations. Once you start getting close to people in a
company you can usually talk about anything in private. All the "acting
normal" can take a toll on you, though.

~~~
pimmen
I know I have to get it under control like you, but it's super hard and it
looks so effortless for other people. They can just sit there, take in all the
nonsense people are spewing with a straight face and then send an email to the
appropriate people about it. It takes me all the efforts in the world to do
something like that, and it would exhaust me for hours afterwards.

It is easier doing it now at 29 than it was at 19, though. Maybe 10 more years
of practice is all I need.

------
aussieguy1234
Prior to the study, 83 percent of participants had "severe" autism. Now, only
17 percent are rated as severe, 39 percent as mild or moderate, and
incredibly, 44 percent are below the cut-off for mild ASD.
[https://newatlas.com/fecal-transplants-autism-symptoms-
reduc...](https://newatlas.com/fecal-transplants-autism-symptoms-
reduction/59278/)

~~~
arkades
Prior to the 18 patient study of rapidly growing teenagers, with subjective
rating scales performed by unblinded investigators, 83 percent of participants
had "severe" autism. Now, only 17 percent are rated as severe, 39 percent as
mild or moderate, and incredibly, 44 percent are below the cut-off for mild
ASD.

Just adding context.

~~~
candiodari
How many would have been expected to get cured without any action at all ?
(because Autism does mostly resolve itself, either "for real" or because the
patients learn to mask it well enough to "not have symptoms")

~~~
folkrav
> Autism does mostly resolve itself, either "for real" or because the patients
> learn to mask it well enough to "not have symptoms"

Having worked with autistic youth before, that's simply not true. First,
autism is not a disorder that can be cured but worked with. Second, it doesn't
do it by itself, but _can_ get better, with different approaches, and most of
them involve hard and persistent education work. Lastly, the part of the
spectrum that can look as if they were "normal" is a rather small proportion
of the whole ASD.

~~~
candiodari
Ah come on, be fair. Every psychiatric disorder has a pretty high chance of
getting resolved without any action from outside. Very few people actually
succumb to them.

Furthermore, especially with psychiatric disorders, there is a high percentage
of patients that aren't helped, but exactly the opposite, by treatment. That
systematically get worse because of treatment.

(I do _not_ claim this is easy or pleasant for the patient, merely that it
happens. Furthermore in the more common cases where treatment makes the
patient worse it is also _incredibly_ unpleasant, unfair and entirely terrible
for the patient)

(and of course you could correctly claim that this is even true for cancer,
and it is. However for cancer the percentage of patients that get better
without treatment is something like 0.2% up to 4% depending on the cancer,
whereas for psychiatric disorders the amount of people that recover without
treatment is easily > 90%)

~~~
jacksnipe
Source for any of this? 90% is a number you should be getting from somewhere,
and it sounds unbelievably high.

~~~
jschwartzi
I would go even further and call it "dismissively" high.

------
pieter_mj
Gut microbiome diversity has been declining for years in the general
population.

Could this be an additional factor (next to better diagnostics) in the
increasing prevalence of ASD?

------
gameswithgo
when i read this i saw no mention of a control group?

~~~
strainer
But the results are very strong. In the treatment group, almost 1 in 5
patients went from severe autistic symptoms to normal (clear). And almost 2 in
5 patients went from severe to mild.

This begs the question, is any other treatment known to produce such strong
results?

~~~
gameswithgo
Given the method of measuring the results I'm not sure we can know anything
about how strong the results are without a control group. It seems there is a
deal of subjectivity in interpreting the results, and when this is the case
crazy stuff can and does happen, regularly.

~~~
strainer
Can you clarify what you are saying about the method of measuring results?

~~~
teraflop
The study evaluated the severity of autism symptoms (using subjective
questionnaires) before and after the treatment, but didn't compare those
results to a control group of people who weren't treated the same way.

It's like finding a couple dozen people with the flu, feeding them chicken
soup, and then reporting that a month later they feel healthier, so the soup
must have helped. Maybe it did, maybe it didn't, but _you didn 't measure that
so you don't know._

~~~
strainer
I asked as an aside to the matter of control group - what is considered
"given" about "the method of measurement" ?

According to this professional medical trial, the recorded ASD scores are
"based on the Childhood Autism Rating Scale (CARS) rated by a professional
evaluator"

You should have specific knowledge of that evaluation in order to criticize it
as relying on "subjective questionnaires" and shouldn't introduce doubt by
simply stating something as "given".

------
fasteo
Maybe offtopic, but reinforces the gut-brain connection: The purported
benefits of the ketogenic diet [1] to some epilepsy patients seems to be
mediated by the gut bacteria [2].

[1] [https://www.epilepsy.com/learn/treating-seizures-and-
epileps...](https://www.epilepsy.com/learn/treating-seizures-and-
epilepsy/dietary-therapies/ketogenic-diet)

[2]
[https://www.cell.com/cell/fulltext/S0092-8674(18)30520-8](https://www.cell.com/cell/fulltext/S0092-8674\(18\)30520-8)

~~~
pieter_mj
Also, schizophrenia : [https://bigthink.com/surprising-science/schizophrenias-
link-...](https://bigthink.com/surprising-science/schizophrenias-link-to-the-
gut)

------
gwbas1c
I wonder if there's any relation to taking oral antibiotics at a particular
age, or mothers taking antibiotics?

~~~
charlieflowers
I very much wonder that too.

------
Nasrudith
I can't help but eyeroll at that dumb trope of people unwilling to accept the
genetic link as someone actually autistic but it brings to mind a socratically
trolling joke.

"Doesn't this imply that being neurotypical is the actual disease and we have
the means to deploy a cure for it?" Not a serious position but one to
hopefully get people thinking about norms.

~~~
gwbas1c
> the genetic link

Don't jump to conclusions so quickly.

Things that appear genetic could be related to family traditions that children
follow when parents, environmental issues that are common along family lines,
bacteria shared among parents and their children, ect.

~~~
Nasrudith
It is more something highlighted by the psychology of popular "theories".
There ino consistency in blaming autism on "refrigerator mothers", heavy
metals, vaccines, and diet except for what they are not - environmental
instead of genetic. It is reaching and in a frenzied, hysterical denial like
Continuum Magazine ending after all involved died of AIDS complications.

That sort of behavior suggests that they already know the answer is more
likely than not genetic but they refuse to accept it because they don't like
the implications. There are many things which should have broken said links
but haven't - otherwise they would have played out already.

------
tapland
As my autistic SO said:

> Can't wait to see hysterical autism moms doing home enemas with feces,
> hopefully some anti-vaxxers stories as well trying to mitigate having to get
> their kid vaccinated for kindergarden.

Not fun for the children, but any case like this would bring it over the top
and hopefully create a bigger uproar.

~~~
rangibaby
It’s an improvement on bleach enemas

------
robinanil
All they needed was some good shit.

Jokes aside there has been plenty of research around insulin spike and how it
is dependent on the gut bacteria and food you eat.

------
thinkingemote
I've been pondering that the term "anally retentive" to describe a pattern of
behaviour (totally unconnected to Autism) associated with strong disgust
reflexes might itself be a symptom which happens due to poo retention,
orderliness and extreme clensiness which reduces the diversity in gut
bacteria.

~~~
plutonorm
I always figured this was to do with stress levels. More stress = higher
muscle tone, more retention and less bowel motion. But yeah, you could be
right, I see there could be a feedback there.

