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

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MEBO Karen
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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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 :

current participants : 113 (update 18dec20)

Monday, January 17, 2011

Do they smell me or not?

One of the main conflicts caused by having an unusual and difficult to control odor is that not everyone can detect it. It appears that all persons that have been diagnosed with trimethylaminuria (TMAU) have gone through the unfortunate experience of a family member or health professional having told them that “it’s all in your head” or that they are suffering from delusions. But it is most probable that these individuals don’t detect the odor because not everyone has the same olfactory sensitivity.

The chemoreceptors of the olfactory system: The amount of chemoreceptors that an animal possess in its olfactory mucosa is indicative of its olfactory sensitivity. Odor produces tolerance, that is, after perceiving certain odors for a certain period of time, we stop detecting it, since the receptors are impregnated and saturated with that substance, and stop sending the signal to the brain. [Translated from Spanish into English by Maria de la Torre]

The main turmoil produced by these contradictions after being exposed to those who do smell the odor and those who don’t, is result of the tendency for a sufferer to develop an intense, oppressive, and paralyzing state of anxiety and depression. It is the current mental health opinion that mental health treatment should be focused on reducing this anxiety, obsessive-compulsive behavior, and depression, as opposed to not in trying to convince the patient the he or she does not have discernment abilities to interpret reality. It is important that the professionals and family members understand that not everyone has the same olfactory sensitivity, thus not everyone can detect an odor that others may detect and react towards.

John Gever, Senior Editor, MedPage Today sums up in his article "DSM-5 What's In, What's Out" (May 10, 2012) the results of the debate of whether Olfactory Reference Syndrome should be included in the DSM-5 edition of the American psychiatry's diagnostic guide. ORS is in the "What didn't make it" category, and furthermore, it "will be placed in Section III with hope of attracting more research."

Olfactory sensitivity is similar in children and young adults, but there is a decline starting in the thirties…For this reason, the age for optimum olfactory capacity is around 33-34 years, since it is at this time that the olfactory sensitivity is still sufficiently intact, and the learning process combine to render the maximum olfactory perception (Cainet et. al., 1994)[Translated from Spanish into English by Maria de la Torre]

Many persons affected with body odor manifest an intermittent strong odor and alternate between mild and strong odor, influenced by diet, hormonal changes, stress, metabolic enzymes deficiencies, etc. The odor may very well be triggered from time to time and then suddenly disappear (or at least is not detected as easily), and appears to not be constant. At the same time, the odor itself changes, for example, according to, trimethylamine (TMA) in low concentration emits a rotten fish odor, and at high concentration it is more like ammonia, since TMAU is a strong base. Therefore it is possible that one person’s olfactory system perceives a fish odor and not ammonia due to saturation and tolerance.
The social reactions against sufferers and the inconsistent triggers of odor are the two most potent factors in creating a state of anxiety and chronic and acute social phobia.

  1. Over the past decade we have encountered many patients who have odour problems on a mild, transient, and periodic basis… it “is not merely a rare recessive disorder but rather a spectrum of phenotypes of transient or mild malodour…” 1999 letter in the Lancet, about ‘periodic’ trimethylaminuria by Dr. Stephen C Mitchell.
  2. Only 7% of a group has anosmia to trimethylamine (TMA) 1975 paper, Specific anosmia to trimethylamine: The fishy primary odor
  3. Dr. José Martínez Vidal, Head of Otolaryngologist Services of the Complexo Hospitalario Universitario de A Coruña (CHUAC) (university of Coruña, Santiago de Compostela, Spain), states that throughout his career he has had frequent cases of patients who have lost their sense of smell (develop anosmia) with age, the same as with other senses such as sight or hearing. He also talks about persons who suffer from hyperosmia, a disorder of the nervous system that involves an increased exaggerated sensitivity toward odors.
  4. Trimethylamine (TMA) in low concentration has a fishy odor and ammonia like odor in high concentration. Human Metabolome Database.

Original post in Spanish
María de la Torre
President and Executive Director


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