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MEBO - UBIOME study 2018



MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


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TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

Saturday, October 25, 2008

Anthology : Richard's fictional story : The End and The Beginning


Richard R. Cook Jr.

Sixteen-year-old Billy Bulldagger sat with his stocky frame bowed over a writing pad on his bedroom desk, a glowing lamp at his side. This whole weird thing, he wrote, started a week ago. It was Monday.

Billy dropped the pen onto the desk and shut his eyes. He raised one hand to the back of his head, stroked the ends of his braids at the nape of his neck. With gritted teeth he thought, Damn! Going back over all this is gonna be harder than I thought.

He opened his eyes and grabbed the pen. He wrote, I was in the school lunchroom with my best friend, Steve. While we walked with our trays in-hand we spotted this little freshman kid sitting by himself again. For the third school day in a row, me and Steve sat at the table next to his. And again we snickered and made fun of him. I know him from my study hall room. I think his name is Kwame (pronounced Kwommy). Kwame something-or-other. He’s got this really bad body odor, probably the smelliest kid in all of Columbus, maybe even in all of Ohio. Nobody wants anything to do with him. He’s always by himself. He sat there under a burned out light bulb. I knew he could barely see the words in the opened book on his lap as he periodically looked up to take a bite of his hamburger. At one point, as he looked up through his eyeglasses, he had tears in his eyes.

All of a sudden my friend grew a bleeding heart. He said, “Let’s just eat, man.” Steve is short and chubby (a roly-poly), always needing a haircut and some new shoes.
"I can’t believe you’re feeling sorry for that skunk,” I told him.
“I’m not feeling sorry for him. I just wanna eat.”
“So who’s stopping you, jerkoff?”

Steve crinkled the corners of his lips and continued to eat his lunch.

For some reason when I got home that day I couldn’t get that stinking kid off my mind. I wanted to taunt him and laugh at him until he broke down and cried. I wanted him to feel so bad for the rest of his life for having a problem like he had, even if it wasn’t his own fault. I don’t know why I felt that way; after all, I didn’t know the guy. So it wasn’t like he had killed my dog or anything. But still I felt that way.

I don’t know if you know what it’s like to experience a kind of traumatic event when everything that came before it was your old life and everything that comes afterward is your new one. But that’s exactly what happened to me when I woke up the next morning. The previous day and all the days before it was now my old life. I got out of bed and I smelled that damn boy in my own room. It was like rotting fish mixed with pee. But he couldn’t have been in there. Shrugging it off as being only my mind playing tricks on me because of how much I had been thinking about that kid the day before, I stepped into the bathroom and did all the usual morning crap.

When I got back to my bedroom the smell was gone. Relieved, I jumped into my clothes and skipped down the stairs for a quick breakfast.

Before I got to the bottom step, there that damn smell was again. Where was it coming from? I thought. Was that kid somewhere in my house?

“Billy,” my unseen mother bellowed from the kitchen, “I heard you stumbling down the stairs. You better get in here before you’re late for school.”

In case you haven’t already guessed it, the worst possible thing that could’ve happened, happened! That damn kid’s smell was on me! All over me. But how? I had just taken a shower.

“Billy, get in here. Now!”

My mind had a nervous breakdown. It was going a thousand miles an hour down a bumpy road. God almighty! I couldn’t go to school that day—maybe not ever! How could I even go into the kitchen to eat?

I yelled to my mother that I was sick. I forget what exactly I told her was wrong with me, but I said I couldn’t go to school that day. Before she answered me, I turned and bolted up the stairs.

When she came up to my room I was forced to tell her the truth. She was skeptical at first, telling me things like: it’s just temporary, and maybe you didn’t shower long enough, and more crap like that. She got this real concerned look on her face when I mentioned seeing a doctor, because she knows how much I hate going to clinics or hospitals. So we went that very day.

They took some tests. While we waited a few days for the results, I stayed at home, away from school, away from my friends, away from the world. The same questions kept exploding in my head: What was happening to my body? What if this is permanent? How could I live? How could I go back to school—especially after making fun of that kid for having the same problem? And what are those damn test results gonna show?!

I guess my mother felt sorry for me or something, because she told me she was finally going to get me a computer. It’s funny how nicer parents are to you when they know you’re buried under a mountain of do-do—in my case, literally.

Finally on Thursday we went back to see the doctor. She told us I got this damn disease I can’t even pronounce called Trimethylaminuria (or Fish-Malodor Syndrome), which is the cause of my body odor. There are certain foods like meat, fish and eggs I can’t eat too much of because of my body’s sudden inability to break them down and eliminate them properly. They don’t know the cause of it. The disease is also called TMAU. There is no known cure. She also told us about this thing called Bromhidrosis, which is another type of odor condition that some people have.

I called my best friend, Steve, when I got home that day. It was the first time I had spoken to him since Monday: the last day of my old life. I told him everything. And we talked about Kwame. I told Steve I didn’t know how that kid could go to school every day like that, with nobody wanting to be his friend, nobody wanting to eat with him.

Steve quickly added, “And people making him feel worse by bullying him about it.”

“I know,” I said. “And I’m ashamed of that. But you’re not all that innocent either, y’know.”

“At least I stopped, Billy, remember?”

He had a point.

I told him I didn’t know how I would be able to do that: to concentrate on my classes, to get up every morning knowing I would be going right back into combat. I told him how I thought about killing myself.

Steve being Steve, he doesn’t always say the right thing at the right time. But this time he was right on target. I remember him saying, “Everybody’s got some kinda war to fight, man. It’s just that, some wars are tougher than others. I mean, I go to shool every day hoping nobody’ll find out I’m gay. Oops.”

Like I said, Steve being Steve.

The following Monday, which is today, I went back to school for the first time in a week. I don’t have to tell you I was shaking in my “boots,” do I? I just thank God I had a friend for support on this first day of school in my new life.

I thought about that kid all the way to lunch time. And there he was again, sitting alone at that same shadowy table with the burned out light bulb above it. Me and Steve had our trays, walking in his direction. It was like I was seeing that kid with new eyes. Needless to say, I didn’t have the same feelings about him. He was no longer one of them: one of those kids who deserve to be pushed around and made to feel bad—or to feel worse. I can’t see anybody in that way anymore. He was me and I was him. I now walked in his shoes. And boy did my feet hurt!

With Steve right behind me, I stopped at the dark table. I looked down at the little hunched-over kid pretending to be so involved in the book on his lap. A hamburger sat in his lunch tray with a single bite taken out of it; the fries looked to be untouched. I sat down in front of him, Steve at my side. Sensing a hundred eyes suddenly focus like laser beams on the three of us, I noticed the boisterous yapping at surrounding tables fall to a soft chatter.

The kid glanced up at me through his black-rimmed eyeglasses and back down to his lap. He silently blew out a breath and closed his book. He opened his backpack,which sat atop the table beside his tray, and began to slip his book into it until I spoke:

“You don’t have to go.”

He glanced at me again, then completed his task. He started to rise.

“I’m sorry,” I said quickly. “I didn’t mean all those things I said before.”

“Me too,” said Steve.

Still sitting, he gazed at both of us with wide eyes, his mouth open a little.

Voices around us rose again, as nosy laser beams left us alone.

I stretched my hand over our trays at him. “I hope you can forgive me, man.”

A tiny smile flashed across his face and then it was gone. I remember every single detail of that moment this afternoon. He just sat there staring at us.

I asked, “You gonna leave my hand hanging here?”

“What kinda game is this?” he asked.


“What do you two want from me?”

“Want?” I withdrew my hand. “We just want you to know that we’re sorry and we want to be your friend.”

“You think saying you’re sorry makes everything okay after how you treated me?”

Steve is the only person on the planet who would ask this: “What do you want us to do? Kiss your big toe?”

The kid stood up.

I told him, “I got the same skin problem that you do.”

He grabbed his backpack and tray. “Congratulations,” he said. He took a few steps away from the table and stopped. He stood there a couple of seconds looking down at his tray. Without lifting his eyes, he turned around and inched his way back. He gently placed his tray onto the table in front of mine and sat down.

We talked as we ate our lunch. I learned that he was no where near the weak little kid I thought he was. He had courage of steel. He taught me ways of how to get out of bed and on to school every day, in spite of all the inevitable negative reactions from people.

“You have to push yourself,” he said.

“Oh, is that all? It can’t be that simple, man.”

“Are you joking? The loneliness, isolation, coughing, stares, whispers, ain’t nothing simple or easy about living with odor. But life’s not supposed to be easy, anyway, is it?”

“Yeah, but it’s easier for some people than it is for others. I guess, that’s why life’s so unfair, huh?”

“What I do every morning,” said Kwame, “is imagine myself in a cockpit flying hundreds of people to where they want to go. I know the only way I can make that come true is to get through high school first, then the next hurdle, and the next until I’m in the air. Just think of where you are between 1 and 10, and 10 is where you wanna end up.”

Saying these things to me, he was more alive than at any other time I’d seen him. His eyes were wider. His head was up for a change.

I asked him, “Where are you between 1 and 10?”

“I’m at 5 right now.”

“So you’re halfway there?”


I said, “But cockpits are pretty confining, man. What if nobody wanted to be in there with you, on account of your odor?”

“I like to believe I’ll have the right kind of treatment by then and have it more under control.”

“Yeah, but what if—“

“I don’t like what ifs. I like I cans.”

Like I said, courage of steel.

He looked at me with this open-mouthed smile, like he had just seen something for the first time. I asked, “What are you smiling about?”

“The irony.”


“Yeah,” he said. “Now that you got this problem, you’re a nicer person than you were before.”

Lightning struck my soul! The kid was right. I really had changed, wrote Billy.

He concluded his writing: (When we got to study hall afterward, Kwame helped me write down that whole lunch conversation we had.)

I don’t know if I can ever be as strong as he. I don’t even know if I would’ve forgiven me if I were him. It’s scary as hell to think I might have to go through the rest of my life with this smell on me. But just knowing that somebody like my new friend, Kwame, has such an upbeat attitude about it all, gives me a whole lot of hope that I can still live my life. It’ll just be different from how I imagined it would be—more challenging.

He also told me about an online odor support group. I’m writing all this to give this group my story. And he said if I didn’t have access to a computer, to talk to a relative—to somebody—about how I’m coping with everything.

Suddenly I’m traveling down the kind of bumpy road I never knew existed. But it’s still a road.

Billy Bulldagger put down his pen, turned on his new computer and said, “And now, on to my new life.”


Di said...

Love this short story. Was reading this when i was on my placement experience and it was truly touching. I love it!! It makes me more determined to fight this!!

Thankyou x100

Hope you continue to write more :)

Jul 26, 2010, 12:13:00 AM
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