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

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at UK Findacure conf 2020

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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

Thursday, April 7, 2011

Cognitive Behavior Therapy : An overview

CBT Concepts (brief overview)

The focus of CBT should NOT be to convince the body odor sufferer that he/she is delusional, since sufficient scientific testing has not become available to diagnose ALL body odor conditions; but rather, the appropriate focus of Cognitive Behavior Therapy specific to these conditions should be to assist in controlling anxiety and obsessive compulsive thoughts and behavior, in pursuit of a happier and less stressful life.

View more presentations from meboresearch
As opposed to mental health therapy being focused on trying to convince the sufferer that he/she is delusional and told to take psychotrophic drugs normally used to treat patients suffering from psychosis, there are some experts in the mental health field that are shifting toward a Cognitive Behavior Therapeutic approach that helps the patient learn to discern and interpret social situations in a manner which both the therapist and the sufferer explore together, and helps the patient modify behavior based on the revised and improved cognitive thoughts.

It is important to keep in mind that all sufferers who have tested positive for TMAU, have at one point or another been told by their family and physicians that it is all in their heads.
It is the opinion of the author of this blog post, who is a sufferer and not an expert, that since not all human beings can detect certain degrees of odor while others can, a sufferer can lead a happier, more productive life by overcoming the common "generalization" process some tend to develop. To better explain myself, I would like to give a analogy. Let's take the case of a baby in a crib who feels something furry next to her and it feels nice and soft, so she pets it and it feels good. But all of a sudden, it bites her. For a couple of nights in a row, not knowing it's a rat, the same happens, until the baby begins to fear the furry creature. Then one day, the mom who's wearing a fur coat goes to carry her and when the baby feels the soft fur, she becomes highly anxious and downright panicked with fear of the mom's fur coat, and pushes the mother away. Under no circumstances does the baby relax enough to let her mother come close to her to nurture and care for her as long as she has that evil fur around her. She may also generalize this emotional reaction to a friendly dog or cat, or any other furry creature. Well, the same tends to happen to sufferer.
Even though not everyone may detect the odor a sufferer may be giving off, as discussed in a previous post in this blog, Do they smell me or not?, the fact that 2 or 3 different people reacted adversely to the sufferer's odor does not mean that everyone detected it. However, it is so profoundly upsetting to the sufferer to become aware of having this seemingly uncontrollable condition, that when this happens a few more times, generalization takes over. The sufferer eventually becomes recluse, as he or she is completely convinced that everyone at all times detect the odor, when perhaps it is not the case.

Cognitive Behavior Therapy for body odor conditions should address the generalization process and the consequent self-depriving behavior the sufferer resorts to in terms of employment and social life.

This 8 slide PowerPoint presentation in no way could even begin to replace actual therapy, which instead is an experiential process that takes time and is under the direction of a trained expert. Nonetheless, since so many sufferers have been traumatized with being given unfounded diagnosis with Olfactory Reference Syndrome (ORS), who later test positive for Trimethylaminuria (TMAU), I have decided to portray the more effective alternative treatment that some sufferers are beginning to tell us has been working for them, slowly but surely, as long as they stick to the therapy.

It is important to keep in mind that all sufferers who have tested positive for TMAU, have at one point or another been told by their family and physicians that it is all in their heads. And TMAU is only one of the FMO3 metabolic deficiencies that produces odor, experts believe there are more that need to be further researched, and this is what MEBO Research is initiating. As determined by the American Psychiatric Association [APA], who is planning to list ORS in the "Appendix for Further Research” as opposed to the more serious classification originally sought by some in the mental health field, more tests need to be done to rule out other causes as well before one can arrive at the Olfactory Reference Syndrome.

I hope this brief powerpoint encourages sufferers to seek mental health therapy, and each one has the right to discuss with one's therapist before treatment begins on the first visit about whether he or she will use this treatment plan. Best of luck to all.


María de la Torre
Founder and Executive Director

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