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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
rareconnect.org TMAU

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
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Blog Archive

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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Friday, October 26, 2018

TMA producing bacteria 2009 thru 2017



Back in 2009, MEBO interviewed Nigel Manning, formerly the Principal Clinical Scientists, Dept. Clinical Chemistry Sheffield Children's Hospital (now retired) in which he told us that the TMA producing bacteria in the human gut had yet to be identified (that was 9 years ago). However, since the fishing industry is so lucrative, more research had been carried out into identifying TMA producing bacteria in fish, as opposed to humans, in order to determine how fresh the fish are to determine their market value. TMA is a chemical produced by bacteria in decomposing fish.

A more recent 2017 study (Rath et al. Microbiome (2017) 5:54, DOI 10.1 186/s40168-017-0271-9), "Uncovering the trimethylamine-producing bacteria of the human gut microbiota" developed a "diagnostic framework that enabled the quantification and comprehensive characterization of the TMA-producing potential in human fecal samples"

We now look forward to Proctor & Gamble marketing Dr. Hazen's new class of compounds that inhibits TMA=production by gut bacteria.
Unlike antibiotics, which non-specifically kill gut bacteria and can lead to adverse side effects and resistance, the new class of compounds prevents microbes from making a harmful molecule linked to heart disease without killing the microbes, which are part of the gut flora and may be beneficial to overall health......Because the compounds are structurally similar to choline (called analogues), the bacterial cells are “tricked” into taking them up as nutrients...

To our knowledge, this is the most potent therapy to date for ‘drugging’ the microbiome to alter a disease process. In addition, gut bacteria are altered but not killed by this drug, and there were no observable toxic side effects,” said Dr. Hazen. “The approach developed could potentially be used to target other gut microbial pathways. We look forward to advancing this novel therapeutic strategy into humans.”
https://newsroom.clevelandclinic.org/2018/08/06/potential-new-class-of-drugs-developed-at-cleveland-clinic-may-reduce-cardiovascular-risk-by-targeting-gut-microbes/

Even though Dr. Hazen's compound was research to prevent cardiovascular disease, the fact that it inhibits gut bacteria from producing TMA from choline would be a perfect way for sufferers of TMAU to be able to eat a healthy diet meeting the Adequate Intake (AI) for Choline as recommended in 1998 by the Food and Nutrition Board of the Institute of Medicine without gut bacteria converting choline into TMA, while still keeping TMA production down to an odorless level.



María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)


SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
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A EURORDIS and NORD Member Organization

Thursday, October 25, 2018

News agency looking for TMAU volunteer

Hi there, My name is Patricia. I'm a journalist with a media group called Talk to the Press. We write for major publications internationally including CBS InsideEdition, USAToday, Fox, ABC, New York Post, Washington Post, MailOnline and other. We pay contributors who share their experiences and stories. I am looking to speak to a Trimethylamunuria sufferer about their experience and how the condition affects their life for an article on an international scale. My email is patricia.murphy@swns.com and you can find more information on https://us.talktothepress.com/

Email campaign : NHS CEO Simon Stevens re meta-bo

Re Email Campaign to UK NHS Chief Executive SIMON STEVENS.
To inform him of METABOLIC BODY/BREATH MALODOR and how the NHS could help.

A recent email campaign to inform Simon Stevens of metabolic body/breath malodor and inform him how the England NHS could help was undertaken recently.

Mr Stevens NHS web page details have since been removed.
( NHS profile link )

Reply from :
Celia Ingham Clark (profile link ) ( twitter )
Medical Director for Clinical Effectiveness at NHS England


The emails were forwarded to Celia Ingham Clark.
Here is her reply :

Thank you for your recent correspondence addressed to Simon Stevens, concerning metabolic body/breath malodour. I am responding on Simon’s behalf. In responding I have taken advice from the Deputy Chief Scientific Officer, Fiona Carragher, and from Dr Robin Lachmann who chairs our Clinical Reference Group on Metabolic Disorders. Both of these colleagues have relevant expertise and experience in metabolic disorders.
I understand that in some patients with abnormal body odour, the odour is due to elevated levels of trimethylamine (trimethylaminuria). This can either be caused by inherited genetic variants of the FMO3 enzyme or other, poorly understood, factors which reduce FMO3 enzyme activity. FMO3 is the liver enzyme that breaks down trimethylamine that is found in food. I gather that affected individuals have a distinctive, fishy body odour that can cause significant emotional and psychological distress to them. It must be a very distressing condition to live with.
Treatment is typically with a special diet +/- antibiotics to try and reduce the amount of trimethylamine entering the body from the gut. This treatment is normally effective, but is arduous to follow. At present there is no cure, but advances in genetic testing and gene therapy may mean that in future years there is hope for definitive treatment.
The single diagnostic testing centre in Sheffield carries out hundreds of tests each year for trimethylaminuria for patients from the whole of England. They changed their assay two years ago in order to revalidate and improve it. Previously a number of patients who had a positive result on the urine test were then shown NOT to have the FMO3 enzyme abnormality when they had a genetic test. The newer urine test is much more accurate.
Although most patients who complain of abnormal body odour have normal trimethylamine levels, and hence do not have trimethylaminuria, there are currently no other validated assays available to test for other metabolites which might be responsible.
There is information about fish odour syndrome on the public-facing NHS website, and this links to patient forums, as I expect you are aware. Thank you very much for bringing the condition to my attention. It must be frustrating to have symptoms for which the underlying cause and treatment have not been identified.
I hope that you find the information above helpful.
Yours sincerely,
Celia Ingham Clark
Medical Director for Clinical Effectiveness NHS England 

Reaction to reply

1. It's nice they at least researched the condition and got (tame) advice.
2. It's not useful advice.
3. Government agencies must be bound to reply to emails.
4. Many may have got this reply. That's ok, as it shows power in numbers.

It shows PERSONAL EMAILs to influential people, EMAIL CAMPAIGNS, and PETITIONS are worthwhile though may not feel like it.

It is vital that the community make INFLUENTIAL PEOPLE ./ AGENCIES aware of METABOLIC BODY/BREATH MALODOR, as they will not have heard of it and are the ones who make changes happen. EXTERNAL networking is the way forward.

A follow up email has been sent to Celia, including asking for a meeting.
We will keep you updated.

Other links :
Fiona Carragher NHS profile
Dr Robin Lachmann NHS profile

META-BO Help ratings :

Simon Stevens :
Will pass to another dept.
Hides email address.

Celia Ingham Clark :
Nice standard reply.
Looked into it.
But very limited help this time.
Maybe will see us in meeting ?

Fiona Carragher :
Unknown.
Has 'metabolic testing' background.

Dr Robin Lachmann :
Ptobably happy with status quo and new 'stricter' TMAU test ?


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A EURORDIS and NORD Member Organization

Sunday, October 21, 2018

Crissan's Mental Health Column: Starting and Maintaining Meaningful Relationships

Starting and maintaining
meaningful Relationships




OCTOBER 2018

MEBO Mental Health Monthly Column
MEBO Mental Health Director


RELATIONSHIPS
Starting and Maintaining
Meaningful Relationships

In her July, August and September posts, Crissan offers us an indepth discussion on Anxiety management. Now in her October Mental Health Column post, she shares her insightful perspective and professional views on how sufferers can enrich their lives with meaningful relationships. She points out that there are many potential sources of fulfilling relationships that we can tap into. Now in her November Mental Health Column post, she focuses our attention on stress management, the effects it has on the body and mind, and techniques for stress management.

Thus there are several types of relationships. A positive relationship is based on balance, support, mutual understanding, respect, honesty and openness...Many malodor sufferers lead very isolated lives due to the devastating and socially-impairing symptoms.

Crissan's indepth article covers the following topics from the perspective of a sufferer and Mental Health Professional:

  1. What are the consequences of not having positive and meaningful relationships?
  2. Isolation
  3. The hormone of love and connection
  4. Different types of relationships
  5. How can you meet and maintain friendships?
  6. To tell or not to tell about malodor conditions?
  7. Benefits of having friends when you have a malodor condition
  8. Dating with a malodor condition
  9. Online dating and online relationships
  10. Dealing with long term romantic relationships and marriage
  11. Raising children
  12. Harmful relationships
  13. Other ways to form meaningful connections,

and many more topics of significance for persons suffering from uncontrollable malodor conditions.


Our most sincere gratitude goes out to Crissan, our MEBO Mental Health Director, for her ongoing dedication to our community. She gives her heart and soul to lift up our community so that each has the wherewithal to find happiness and peace in life. Thank you, Crissan!




María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)


SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

get New Posts by EMAIL : Enter your email address :



A EURORDIS and NORD Member Organization

Monday, October 8, 2018

No longer recruiting participants MEBO Gut Microbiome Study



MEBO Research is most grateful to the hundreds of applicants who answered the pre-screening questions below in an effort to become participants in the uBiome funded MEBO Gut Microbiome Study, "Microbial Basis of Systemic Malodor and PATM Conditions (PATM)" registered with ClinicalTrials.gov.

We are no longer recruiting participants for this study
All 100 applicants from around the world have been selected and have received their kits for sample collection. We are no longer recruiting participants for this study, though anyone interested in being considered for future research and/or testing participation opportunities with MEBO may send me a private email with the answers to the questions  (click on icon below) to be placed in the MEBO Master Database. Answers to the questions may be sent to maria.delatorre@meboresearch.org .

Click on icon for questions


The following is a timeline of this research study:

May 8, 2018

MEBO awarded a study grant from UBIOME


June 10, 2018
Fundraiser to support international shipments to participants (Customs fees, return shipping cost)

Donations "Gut Microbiota in Idiopathic Malodor Production" Research



June 27, 2018

Q&A RE: MEBO Gut Microbiome Study funded by a uBiome Grant


July 2, 2018

Consent, Procedure & Life Quality Test Forms MEBO Microbiome Study


Much gratitude goes to all who applied to participate in any and all MEBO test and/or research program.

María


María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)


SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

get New Posts by EMAIL : Enter your email address :



A EURORDIS and NORD Member Organization