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

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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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


Participation info : LINK English

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BO Sufferers Podcasts



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) :
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
NORD Member Organization
See RareConnect TMAU

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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, August 30, 2008

Guidelines for writing your odor-related essay for our anthology

*Notice to Readers - Anthology for social awareness and fundraising efforts!
By Richard R. Cook Jr. (Reginald908 on MSN groups body odor forum)

It would be great if everyone involved in these odor support groups would write a personal story about an event in your life involving your odor condition. We want the world to know how misunderstood we are and of how painful this problem is to live with. The proceeds from the anthology can go to research for a cure and better medical treatment for our condition. If you are interested in writing a brief, personal story, please follow these guidelines. The anthology must be uniform before it can be submitted to a publisher.

  1. Indent paragraphs 7 spaces
  2. Use 12 pt. Arial font
  3. Double space entire essay
  4. Spell out all numbers except for years. Examples: 3:00 a.m. would be written three o’clock a.m.; June 1, 2008 would be written June first, 2008.
  5. Do not separate your story into chapters.
  6. When giving your story a title, do not use the word nightmare, in order to avoid too many titles sounding alike.
  7. If you mention any names in your essay, let us know right away who these people are. Example: My aunt Doris said to me…(as opposed to: Doris said to me…)
  8. There is no page limit, but no less than 2 double-spaced, typed pages, please.
  9. On page one, center and type your title a little more than 5 inches down from the top. Two lines below the title, type the word by. Two lines below that, type your full name. Four lines below that, start your story.
  10. There should be 7 lines of your story on page one and 21 lines on all other pages but not necessarily the last page.
  11. Starting with page two, the upper left-hand corner of each page should look like this: your last name in small letters/essay. This should be typed one inch down from the top, with one-inch margins all around.
  12. Place the page number in the upper right-hand corner of each page starting with page two as far to the right margin as possible.
  13. Also on each page starting with page two, start your text 4 lines below your name.
  14. Give some idea as to how long ago this personal event happened.
  15. It may be a good idea to write your essay in longhand first so that it would be easier to rewrite before typing it, or whatever works for you.
  16. At the bottom of your last page, type your email address and MSN nickname.
  17. After typing your essay in Word, send it as an attachment to: (Please do not paste it in the email text box.) If you want, you can also post it in the Poetry/Stories section for everyone to read.
Your essay does not have to be perfect. Needless to say, this is not school; you will not be graded. It will be proofread by a writer member of the group, to correct grammar, punctuation, etc., if necessary. Rewrite your essay at least once before sending it in.

While you’re writing, keep in mind that people who don’t have a clue as to what we go through will read your personal story. This is our primary audience. It would be nice for this anthology to teach other people to treat us with the respect we deserve. Be honest in your writing; avoid exaggerations or embellishments.

If you have any questions or ideas for the anthology, please do not hesitate to email me (Richard). In some cases your question or idea will be posted with a reply for everyone to see.

Update :

Update 2:


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