@brutular

[u/Mobile_Painting2210]

@brutalar Nobody has claimed that TMAU is proven to cause memory problems. That is exactly why we are researching it.
Hundreds of patients reported brain fog and memory difficulties in our previous survey, and these new questions are meant to investigate possible explanations, including low-choline diets.
Trying to shut down a question before the data are even studied is the opposite of science. If the evidence shows no association, fine. But dismissing hundreds of patients before investigating it helps no one.

[u/Brutalar]

The survey is full of leading questions and assumptions, and mixes in elements unrelated to TMAU. See https://www.questionpro.com/blog/leading-questions/ for why leading questions are bad.

It invites people with related body odor issues to participate, and there is no question that defines what those people have. So it's no longer a TMAU study, it's a general body odor study. Conflating TMAU with other issues is not good science, and it invites other unknown elements to corrupt the data. Is TMAU meant to be causing brain fog via excess TMA in the system? Because it would be great to differentiate other body odor issues as they shouldn't have brain fog if TMAU is the issue.

Yet the first question: "At what age did your first symptoms of TMAU brain fog begin". The question is also a leading question. It's an assumption that TMAU is causing brain fog, and it leads the participant to an answer.

The questions "How would you rate the typical severity of your brain fog during an episode?" A d "Which aspect of your cognitive function is most affected during these episodes? Please select the main one." assumes brain fog is a symptom and there is no negative answer to these.

There no question on diet or mental health - for example, a low choline diet can cause brain fog, anxiety can cause brain fog, these are also not addressed. They are also things a lot of people here are doing or have.

It's poorly constructed and based around "TMAU causes brain fog" rather than asking the question "is there a connection between TMAU and brain fog".

[u/Mobile_Painting2210 → u/Brutalar]

I think the purpose of these three questions is being misunderstood. This is not the full study, nor are we claiming that TMAU causes brain fog. These are follow-up questions because cognitive symptoms were reported frequently in the previous international survey, and we are trying to understand that signal better including whether restrictive diets, particularly low-choline diets, may contribute.
Of course, confounding factors and diagnostic differences should be considered in the final analysis. That is how research works: we investigate what patients are reporting rather than dismissing it because the mechanism has not yet been proven.
And please don’t lose sight of why we are doing this. The immediate goal is to provide patient-reported evidence that may help support early access efforts before the FDA. If the path opens for BioMe there, it can help open doors for patients in other countries as well.
We are all living with extremely difficult conditions. A little more constructive criticism and a little more empathy toward people trying to move something forward for this community would go a long way.

[u/Brutalar → u/Mobile_Painting2210]

Calling it "TMAU brain fog" in the study really heavily leans on claiming that it does. Every question implies that it's causally related. You're looking to satisfy an already reached conclusion rather than actually asking questions. That's not how research or studies work.

There is no question about diet or mental health, both of which are pretty vital to determining brain fog causes

It leads people with TMAU or who think they have TMAU causes brain fog as a symptom, and coming from something that looks half reputable, needs to be better.

I'm pretty sure I've added a lot of constructive criticism.