Now that is something that should be done more often - especially in science journalism, but not only. We cruelly lack long-term vision - not only forward but backwards too.
Now that is something that should be done more often - especially in science journalism, but not only. We cruelly lack long-term vision - not only forward but backwards too.
There’s a subtext here that isn’t immediately obvious without reading more from the company trying to commercialize this formula: Their small phase 2 trial is underway but results haven’t fully been released as far as I can tell. It appears they’re trying to do a PR push based on their early claims of positive results, before publishing everything. If anyone can find more details please correct me if I’m wrong.
This can be a little suspicious when companies do this because before the full results are available because it’s usually associated with a rushed push to drive investor interest at the time they think it’s most optimal. When the optimal PR push timing is before full results are released, it’s not a good signal that the results are on track to be great.
It isn't a good one.
When I looked at preclinical for one of their competitors, that was the exact same thing, the issue was study design. Specifically, you are shoving something up an autistic kid's butt once a day or twice a day. They only did this to the placebo arm for 3 days, and only to healthy kids, whereas the treatment arm did this for 8 weeks.
If I punched you in the chest as hard as I could once or twice a day, do you think you'd have a behavioral change? That's their endpoint. If I called it a "medical" punch, does that change anything?
Can an autistic kid learn how to answer a test to get the thing to stop being shoved up their butt? I think so. By all means though, I encourage people to make this risky investment if they think this treatment pathway is real. It sort of is! If you want a behavioral change, we have a good idea of a way to get that from defenseless kids. But not for a good reason.
They’re always followed by thousands of self-experimenters where nobody can reproduce the result.
The explanation is almost always placebo effect. A parent or doctor is so convinced that they’ve found a cure that they change assume it worked, change their behavior toward the autistic person, and believe that a dramatic change has occurred.
This is also why the placebo arm of every autism study also shows improvement.
I don’t even think I understand your proposed mechanism here. So these kids have this treatment multiple times a day, for eight weeks, and nothing they do during that time changes it, but then suddenly it stops, but they modulate their behavior for many months, what, just in case it happens again? When their behavior changes during the treatment had no effect on whether they keep getting the treatment? How does that make any sense?
While I'm dubious about this specific case, the basic dynamic you're describing there is the core controversy around ABA "therapy", which is effectively conditioning autistic children to act "normal" [1], sometimes through social pressure, sometimes through physical punishment that rises to a level legally recognized as torture [2]. It generally results in immediate behavioral changes, but also results in long-term PTSD [2].
[1]: https://whyy.org/segments/how-a-therapy-once-seen-as-a-victo...
[2]: https://en.wikipedia.org/wiki/Judge_Rotenberg_Center#Condemn...
[3]: https://www.academia.edu/35842784/Evidence_of_increased_PTSD...
You can read their current study, its primary endpoint is severely treatment resistant GI symptoms, not "autism". That means they are trying to get a liquid FMT with two hero laxative doses per day approved for ASD kids who have failed two other standard of care GI treatments.
But then why not get it approved for adults without ASD? It's a simple question. As you are not very familiar with the therapeutics startup business, you wouldn't know that it's all about commercialization. They are gambling that parents will buy this drug anyway, for its secondary endpoint, which is supposed to be "less disobedient behavior while ASD" (my characterization of the evaluation they receive).
Look... parents can also punch their kids, and I'm sure it'll modify their behavior. Do you see? It's not complicated, there's no conspiracy, there's barely any science.
Maybe science journalism should just adopt a wiki-model instead, where there is one article per "subject" then any new (confirmed?) information/data goes into that, and interested people can subscribe to updates there instead.
Wikis generally have much better long-term maintenance given the right individuals running it, compared to a "publication journal" where things tend to get out of date eventually, with no way of actually seeing when old articles get updated.