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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

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)

Friday, March 2, 2018

Mental Health Support

In addition to pursuing appropriate protocols to help sufferers control odor symptoms, there is a very very strong need for guidance and counseling to help cope with living with this condition. We are most fortunate that Crissan Rosalia has been available to us throughout the years reaching out to us in our online private support groups.

Crissan has the following message for us at this time:
The psychological consequences of coping with Trimethylaminuria, malodor conditions or PATM can be extensive. Some people are in so much emotional pain that they feel that they are not able to cope anymore. A lot of members feel hesitant to seek psychological help because they do not think the root (cause) of the problem is of psychological origin. Even physical illnesses can have such an impact on our lives that they can lead to stress, emotional dysregulation, depression, anxiety, eating disorders or other mental or emotional disorders.

Other reasons might be:
  • Some people are afraid of the stigma of seeing a therapist because of their cultural or religious beliefs.
  • Lastly, some people say they don’t have the money, insurance or finances to pay for treatment.
Please don’t let doubt, lack of finances, beliefs about the cause of the condition, cultural beliefs about mental illness, keep you from seeking help. There is always a fitting option for you. You can get the necessary support you need.
If you want to talk to someone or If you feel that you need help, for example with stress management, emotion regulation, depression, anxiety or thoughts about suicide.

Please consider the following steps:

  1. Talk to your family and close friends about your thoughts and feelings
  2. Talk or reach out to people in the support group MEBO, TMAU/PATM and Rare connect
  3. Talk to people in support groups for people with Anxiety, Depression or other psychological conditions
  4. Talk to your doctor/ general practitioner
  5. Seek help from a professional, for example, a coach, counselor, psychologist or psychiatrist
  6. If you’re spiritual and need prayer, there is a group of members that are willing to pray for you, the group is called TMAU overcomers. You can also talk to your pastor, church elders or spiritual counselors.
  7. As a sufferer and psychologist, I offer online counseling services to all members with malodor conditions. If you are interested and want more information, please send me an email at takecharge@re-charge.org.
If you’re having suicidal thoughts or feeling suicidal:
  1. Call a suicide hotline
  2. Call 911 or the helpline in your country (see the list of international phone numbers beneath)
  3. http://togetherweare-strong.tumblr.com/helpline
  4. https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines
Crissan Rosalia, Psychologist
Coach/Counselor at Compass Holistic
Coach at Re-Charge Coaching & Counseling
March 1, 2018



María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
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2 comments:

Ánonimo said...

Me siento triste porqué es tan difícil dar respuesta a una enfermedad que parece tan sencilla. Aqui en colombia toda una ciudad estaba contaminada de malos olores a causa de unas fabricas que queman desechos de res inmediatamente lo resovieron crearon un producto

Mar 3, 2018, 9:19:00 AM
Ánonimo said...

Crearon un producto para todo el ambiente de una ciudad completa que neutralizaba el mal olor. Porqué es tan difícil entonces para nosotros no se si seguir teniendo esperanzas con lo que nunca podra tener solucion ni respuesta a nosotros los enfermos.

Mar 3, 2018, 9:22:00 AM
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