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Reply from MeBO

Reply from MeBO,

"I viewed some minutes of your suggested video and those reactions look pretty familiar to me, so I think I got an understanding for your situation. And yes, that’s a typical sign body odor patients encounter in reactions of people in their environments. Some close friends of patients describe the situations sometimes even in a way, that there is no actual real recognizable typical odor, but kind of a biting environment smell, which makes it hard to breathe."

So it would seem we are within the 3 groups but which one. I can only guess. I think it’s the Bromhidrosis group. If so, we are expected to have:
1. degradation failures of certain amino acids
2. malregulation of the tight junctions (leakygut)

One PATM member is joining the pilot exome analysis. This is basically getting a genetic sequencing of the area of the DNA supposedly holding the genes to the dysfunctional enzymes. If those genes show alteration from the normal documented gene then they’re right, if it doesn’t then they’ll look at other areas of possibilities.
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Avatar universal
Everyone may have a different cause of the odor. Therefore in addition to the reasons we need to study the properties of this stuffiness. As the smell of the stuffiness and  heat effect on the cells, receptors and the body. As stuffiness smell effects on the cells, receptors and the body. What changes occur in an atmosphere of air. What changes occur in the body of other people when the smell of stuffiness appears. If we can't resolve the cause, then maybe we will be able to resolve the investigation. It can be especially useful for those who have problems due to genes. And for those who have not found out the reason.
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Avatar universal
First glance reading it I didn't quite get it but now I do.

It doesn't matter if MeBO thinks PATMers give off an odor or not. If the people in 1 of the 3 groups are actual PATMers, then any results that reflect them will reflect us. Even if they identify themselves as Bromhidrosis/TMAU2, we'll know that they're actually PATMers and have the same thing as us. It's basically a case of having different labels for the same thing.

Now the question becomes, which of these 3 groups includes the PATM subjects?
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10 Comments
Precisely, because the outcome isn't determined by what volunteers say or what MeBO think they are, it is determined only by objective data i.e. blood, urine etc.

Another thing, if they had different causes i.e. 5 groups with 5 completely different causes then we'd be in trouble. But here we only have 2 causes and they related closely.
I'm hoping this aromatic amino-acid problem doesn't apply to us. It will make the problem easier to manage. I'm getting the 4 AAs soon.
I need this clarified, how do we know that MeBO is right at all on their theory/hypothesis? There's a chance that they're wrong, am I correct?
"but kind of a biting environment smell, which makes it hard to breathe."

What does hard to breath mean exactly?
I don’t really know...lol…but it must be a German description of some kind. Remember English is a second language in Germany, but initially I was thinking he meant the irritating feeling. I sometimes had people explain their pin poking feeling within their lungs. But if he’s not referring to that, I don’t know.

Although, I can understand the heavy, stuffy unbreathable air description as I always get that explanation from everyone.
@Smellyorus
“I need this clarified, how do we know that MeBO is right at all on their theory/hypothesis?”

If they publish their paper which they claim they’re going to do soon, it will provide proof. But they still have to continue with the gene sequencing to prove the genetic connection.
Leakygut? That’s already proven. We are only concerned with the amino-acid degradation which I will prove when I get those amino-acids to try.

“There's a chance that they're wrong, am I correct?”

Yup, that’s right. There’s always a chance they could be wrong. No one in this existence can prove anything 100%, scientifically and philosophical it is simply impossible. Their chance of being correct is usually 95% or more. This is what they mean by “scientifically significant”. That’s the highest accuracy level you can get in our existence in this reality, and it’s the same reason the scientific approach was adopted instead of religion or some kind of voodoo method. For example, any of our forum hypothesis wouldn’t even pass 0.005% of accuracy. That’s how low other standards of fact finding is. So in reality we don’t trust science because it’s perfect e.g. 100%, but because it’s the best fact finding method known in the existence of human kind.

If they find a better approach in the future, the current scientific method will go out the window immediately.
I tried pitching the Bromohidrosis state to my doctor since i anyways sweat profusely. He claimed that it could be due to anxiety or an overactive thyroid or just the way my sweat glands are.

If they decide to take it the Bromhidrosis way then im afraid theyll be seeking out answers for something different than our condition. It could be an overlapping condition but i honestly hope the subjects they get are the worst of their kind. This is the perhaps the only time, then the worst would be the best for us.

Don’t worry Jon, most of us know about PATM than most doctors. The reason why we are pushing for PH.D level researchers to find the cause of PATM is because all medical doctors don’t know anything about it. They can keep their opinions to themselves while more educated scientists track down the problem. After that, researchers will document everything then doctors can come and use that to diagnose future patients. Unfortunately, now we are the Guinee pigs to help future PATMers in 20 years from now.

Bromhidrosis currently is as mysterious as PATM. The whole MeBO research was original designed to find more about it. How our volunteers ended up there is another question but nevertheless they got something great out of it.

Doctors can’t know what they don’t know. Most doctors today still don’t know about TMAU1 is and keep sending patients home or the psychiatric ward. TMAU1 is well documented so how on earth would they know about unknown diseases or those which aren’t documented.
Another 20 years, haha. Well, i honestly hope someone is already cooking up a treatment in some lab buried in the woods. the last 20 years were a waste for me, i feel similar to a disabled patient.

On another note, did you look up the russian web StuffySmell posted? f o e t o r . r u
They've outlined some blood tests that are needed as proof for registration to their forum.
“Another 20 years, haha. Well, i honestly hope someone is already cooking up a treatment in some lab buried in the woods. the last 20 years were a waste for me, i feel similar to a disabled patient.”

Hahaha! Don’t worry my friend. I think it’s going to be sooner.
Avatar universal
I'd believe this amino acids thing apply to us only after I try them and see for myself.
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