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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

Scroll down and select country
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

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)

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.
Maria


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

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum








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