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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

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

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect

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Blog Archive

UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Tuesday, March 10, 2009

Impromptu Miami Beach Meet-Up 2009

We held an impromptu Meet-Up at Miami Beach on Saturday and Sunday, February 28 - March 1, 2009, when Glenna flew from Dallas to Tampa, Florida, and drove to Miami Beach. The same magical feeling I had experienced in the Thames Festival Meet-up crept in and possessed me all over again. The sense of retreating to a pilgrimage overcame us both.

Glenna and I spent Saturday night at South Beach where all the action was ‘til the wee hours of the morning. The night was full of music and dancing under the neon lights that adorned the art deco structures of another era. We sat at a sidewalk café with the cool ocean breeze that swayed the palm trees as the music resounded nearby and people strolled along as if not wanting to miss a thing.

My parents had been kind enough to offer us their condo on the beach, and the following morning we sat on the sand and watched the people, the boats, the jet skiers, and the birds, as we talked our hearts out. Time stood still as the hours passed, and our past, present, and our future dreams engulfed us.

We then met with Jess and Lu for an early dinner, which added yet another dimension to our meet-up. We talked for hours over good food and drinks, and none of us wanted the moment to end. We stretched it out as long as we could, but unfortunately, all good things must come to an end. Yet, the high we got from this encounter lingered for some time to come.

Here is Glenna’s version of the story. I hope you enjoy the video.







Impromptu Meet-Up in Miami By Glenna Gonzalez

It was a rush to get to Florida, with only about three days to make plans, but I got there. I was scheduled to attend a training in Tampa, Florida, but I felt heart-sick when I thought I would not be able to make it to Miami to meet Maria, Jessica, and Lucille, the only people that I know of in that area from our group. Maria is such a sweet woman that I could not fathom being any place in Florida without attempting to see her.

After completing my travel plans for the training class in Tampa, I pondered just how I could get to Miami, because I already had flight plans that led to my arrival in Tampa, not Miami. Well, the road runner that I am, I decided to drive. Driving has always been a pleasure of mine because it gives me the opportunity to clear my head and observe the scenery on those long road trips.

Here, the adventure begins. I rented a car at the Tampa airport and began my four and a half hour drive to Miami. It was nearly 6pm when I began driving, so soon there was only darkness, as I continued my trip to southern Florida. Anyway, as usual, I got lost within 15 minutes shy of Maria’s condo. This has happened to me often, in that I am usually only 10 or 15 minutes away from my destination when I somehow end up taking the wrong road (HmHm, there must be a lesson in that somewhere).

Now comes the funny part. I tried to call Maria, but the battery on my phone was low and it kept cutting off, thus I could not even finish a short conversation with her. As things would go, while driving to Miami, I had a very long conversation with my Dad. We tend to keep each other company on long drives, via our cell phones. Well, when I noticed my battery was getting low, I tried to get off the phone, but he kept going on and on. Eventually, I forgot my battery was low.

After realizing that I was lost, I pulled into the parking lot of a small strip mall. There was a cab parked there. I began to thank my lucky stars, because by now, it is nearly 12 midnight, and it is getting quite creepy (I think I was in a bad section of town). I pull up near the cabbie and he tells me that I am very far from my destination. Well, I am thinking that I either need to leave my car and catch a ride or pay him to lead me, since I think I will only get more lost. Of course, fear was setting in. By now, I have a cramp in my right leg (the one I need to push the accelerator to drive), the battery is low on my phone, I am exhausted, and some dude keeps circling me in the parking lot, like he is going to rob me or something.

Well, to my dismay, the cabbie had a very thick African accent, and was impatient as I tried to make up my mind about what I was going to do. I did talk to Maria long enough at that point to hear her say not to pay the cabbie and to try to find my way. Well, he was so mad when I told him that I would drive myself that he almost drove over my foot to leave, as I was standing near the passenger window talking to him.

So, I followed Maria’s advice. There was a car parked in front of a bank, and the driver of the car was at the ATM machine. Well, I noticed that there was a passenger in the car, so I pulled up to the right side of it to speak to the passenger, not wanting to startle the person at the ATM, for fear he might think I was going to try to rob him or something. HaHa. I pulled to the passenger’s right and began waving frantically to get his attention, and I could not figure out why he didn’t see me, when he was looking in my direction. Well, the driver walked up to me and apologized for his friend. He was blind, which is why he didn’t see me waving or trying to get his attention. I felt like a fool- one for being lost in the first place, and then second for waving at the blind passenger, who had no idea that I was even trying to get his attention. Well, anyway they gave me directions and I was on my way. They gave me excellent directions, and I was at Maria’s within 15 minutes.

I had no idea what was waiting for me. Maria was so totally hospitable and welcoming. She made me feel so comfortable. I knew that was going to be the case, because she was so excited when I called her from Dallas to let her know that I was coming to see her. We went “out on the town” of South Miami Beach until nearly 5am. We had a blast! We walked around with all the teenagers and club hoppers, taking in the beauty that is South Miami Beach during the wee hours of the morning. We went to a really cool café and had a great meal on the sidewalk, as we took in the sights. The food was totally awesome, and so was the atmosphere. Well, when we tired ourselves out, we got back to Maria’s beautiful condo, right on the beach. Maria was the perfect host and I slept so good and got up to a great breakfast.

After breakfast, we decided to hang out on the beach until we met with Jessica and Lucille. The water was the most beautiful water that I have ever seen on any beach. It was crystal clear and diamond blue. We had a great time walking on the beach, looking at the multi-million dollar condos right there, and seeing these beautiful yachts- sailing all around the area. Later, we met Jessica and Lucille at a restaurant called Flanigan’s. It was such a joy meeting Jessica, whom I have spent countless hours on the phone with, and Lucille, who has the most beautiful green eyes. We had lunch and enjoyed each other’s company, in the most spiritual way. There is nothing that I can say to explain how great that was, sitting with a group of people who could understand my deepest and utmost pain. When it was time to leave, no one wanted to. We all sat there, dreading the separation. Eventually, we did leave, but the effects of such an experience will always be with me.




Oh, how I am looking forward to the next meet-up in Miami!


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