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

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
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

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

Sunday, September 29, 2013

USAJobs - Federal Government Official Job Site

USAJOBS - The Federal Government’s Official Jobs Site
This is a United States Office of Personnel Management website. USAJOBS is the Federal Government’s ...

Employment Resources

Unemployment is one of the most profound issues facing the disability community. NOD is committed to increasing the employment rate of people with disabilities. To help job seekers with disabilities, NOD offers resources specifically addressing employment needs.

Resources and Information

America’s Service Locator
America’s Service Locator connects individuals to employment and training opportunities available at local One-Stop Career Centers. The Website provides contact information for a range of local work-related services, including unemployment benefits, career development, and educational opportunities.

Visit America’s Service Locator. is a private sector initiative helping to close the employment participation gap for people with disabilities while helping employers meet the challenge of finding qualified workers. It is the largest national employment and networking portal connecting talented job seekers who happen to have disabilities, employers and jobs, agencies providing services to the community of people with disabilities, college and university disability and career services departments, veterans groups and disability advocacy groups.


Hire Heroes USA
Hire Heroes USA provides career placement assistance to returning service men and women, specializing in the career placement of those injured or with any level of disability. Hire Heroes USA has a wide range of employment opportunities available nationwide, ranging from entry level to senior positions.

Visit Hire Heroes USA.

HirePotential specializes in employing people with disabilities, mature workers, and veterans, working with businesses that actively support diversity. You can send your resume using their online tool, or view current job openings on their database.

View the HirePotential Employment Resources.

Job Accommodation Network
The Job Accommodation Network (JAN) provides free consulting services for individuals with physical or intellectual limitations that affect employment. Services include one-on-one consultation about job accommodation ideas, requesting and negotiating accommodations, and rights under the Americans with Disabilities Act (ADA) and related laws.

Visit the Job Accommodation Network.

National Business and Disability Council
The National Business and Disability Council (NBDC) offers resources for career-seekers with disabilities, including links to local resources and webcasts on resume writing and disclosure. You can post your resume in their national resume database or search through job listings.

Visit the National Business and Disability Council.

Office of Disability Employment Policy
The Office of Disability Employment Policy (ODEP) provides national leadership on disability employment policy by developing and influencing the use of evidence-based disability employment policies and practices, building collaborative partnerships, and delivering authoritative and credible data on employment of people with disabilities.

Visit the Office of Disability Employment Policy.

Project Vision
The Project Vision Website is part of the World Institute on Disability's Proyecto Vision, the first National Technical Assistance Center for US Latinos with disabilities. The bi-lingual site offers job listings, success stories, and resource links.

Visit Project Vision.

USA Jobs
The USA jobs website lists positions available within the US government, and individuals with disabilities can use it in conjunction with the Selective Placement Program Coordinator (SPPC) directory. The directory lists the SPPC contact, who helps to recruit, hire and accommodate people with disabilities within each government agency.

Search for Jobs

There are a number of national websites that aggregate job listings, allowing users to search for jobs posted around the country. Two examples are and

Cheryl Fields, MBA, Ph.D., (ABD)/(c)
Community Outreach Director

A Public Charity (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

A EURORDIS and NORD Member Organization 


Anonymous said...

It seems nearly impossible to get on disability .

Sep 29, 2013, 6:08:00 PM
Maria de la Torre said...


You are absolutely correct. It is impossible to be accepted for Social Security Disability unless you are close to qualifying for Hospice Service, and pretty much on your death bed. In fact, a person who has worked filling out disability applications for Social Security told me that this is the case. She said that any other disability case is denied, and a much larger group is accepted ONLY if they appeal. She went on to say that if the appeal is denied, then you have the right to take it to court, and then these cases are mostly approved. To go to court, you would probably need an attorney. All this process does take months. It's designed to drive people back to work.

This is why NORD tries to work with the Social Security Commissioner to get rare diseases in the Compassionate list, but TMAU was rejected last time. Of course, we can apply again, as it seems the way one has to approach everything that has to do with Social Security.

Another thing this Soc Sec employee told me is that you have a stronger case if you file for benefits with more than one condition. TMAU or any other body/breath odor condition won't cut it. But if you declare other conditions as well, including long-term medical or mental conditions (the more the better), then you stand a chance of qualifying on the Appeal or court trial.

Sep 29, 2013, 7:52:00 PM
Anonymous said...

i know several people approved the first time around, no even close to needing hospice care, i believe the problem is odor conditions are not respected. so you would need a diagnosis of severe in another condition, mental illness wont work unless severe usually requiring paranoid, delusional, extreme mood swings, the doctor has to witness real mood swings, you cant claim depression and anxiety and be approved. odor conditions are not respected.

Sep 29, 2013, 9:55:00 PM
Anonymous said...

i have odor, it is not mild, but i am employed and i work with people, lots of people, there are lots of jobs if we dont want to work with people, job training programs, work outside jobs etc, delivery driver, tractor trailor truck driver etc etc, so tmau may never be accepted by ssdi. toll booth worker, outside very little contact with people, landscaper, etc etc.....we need to accept ssdi may never accept odor as a disability and figure out how to live life, i accept that help may never come in my lifetime and i live and i work. there are enough jobs in this country that allow limited close indoor contact with other people, i think that is how ssdi determines odor is not a 100 percent crippling guard at an outdoor beach, working at an outdoor park, zoo, etc etc.....

Sep 29, 2013, 10:14:00 PM
Anonymous said...

ssdi is for when you can not function, for when you can not function to complete a job. when hallucinating, and delusional you can not function making mental illness a disability, extreme mood swings of bipolar qualify with hallucinations and delusional paranoid thinking, depression and anxiety alone rarely ever qualify for ssdi. bipolar disorder that affects memory, logical thought, concentration etc may qualify, odor conditions do not affect our ability to function, they put us in challenging conditions that we need make an effort to overcome, so ssdi may never accept odor conditions as a disability. someone can try compsing a letter stating why odor conditions are disabling, help ssdi see why odor conditions do disable your ability to function.... we can waste our life waiting for help that may never come, or make an effort to advocate for help, or accept our situations and chose to live, or advocate and live...

Sep 30, 2013, 6:37:00 AM
Maria de la Torre said...

You're right, anonymous, severe mental or physical conditions would be accepted, even if not in a life-threatening immediate danger.

I think that being accepted or not may also have to do with the city one lives in and the degree of fraud cases in that city. Miami is notorious for having a very high rate of fraud, not only with Social Security, but Medicare, and other criminal activities. So perhaps a lower-crime area would get approval of benefits much more easily than other, though I wonder if that would be publicly declared...

The odds are very much against body odor sufferers to ever get approved for this condition alone. It is really not a problem of the sufferer not being able to perform tasks, but rather the odor's influence in creating challenging work environment conditions. This is not a condition Social Security Disability benefits would apply to. It would be very detrimental to a sufferer to sit at home in isolation waiting for a treatment or a cure that may not come for many years as their productive years pass by. Social Security will not support putting a sufferer in that condition when in fact, the person is capable of functioning well to maintain employment.

Another argument that would deter Soc Sec from accepting an application due to having an odor condition is that there are many sufferers who have established long-term employment, in spite of their symptoms.

My personal believe is that we should focus our attention more on qualifying having an odor condition for Vocational Rehabilitation services. Vocational Rehab offers financial assistance for training in a field that better fits the needs of the patient and assists them in obtaining proper employment after the training. At the present time, one can qualify for Vocational Rehab without necessarily qualifying for Social Security Disability benefits. I don't know whether having an odor condition would qualify a sufferer for Vocational Rehab. Maybe someone can look into this and let us know.

Sep 30, 2013, 11:05:00 AM
Anonymous said...

Its 2013. I'm in a tech field which rarely requires I work onsite, yet I STILL cannot find enough resources to locate a job offsite. Offsite jobs need to become a much, much larger focus- technology expands every day and almost anything done in an office can be done from home. Yet, the "work from home" market remains severely underdeveloped. A full time job at home is almost impossible at any decent wage. I say this after 2 years of searching for something stable. Its not there yet and more organizations need to support it. It has enough benefits such as low overhead cost of being in the office and other employer perks. Yet, still, with all the listings out there, its nearly impossible to compete with the limited pool of positions. This is the reality of the current "work at home" situation. This sector needs radical and quick development, and it can be easily accomplished. The old models still prevail. - JT

Sep 30, 2013, 11:44:00 AM
Anonymous said...

There will always be people that accept us and people that will put us down and people that will support us and people that won't. We should NOT be depressed, we need to find situations and jobs of interest for us, and seek out people who will support us....I think it is possible. I do it, I have full time, long term stable employment with employers who support me, and a job that I love. I think another issue is that some of us have a large support group of family and friends and some of us do not have a support group at all, and a lack of support causes depression, and anxiety. I think there are many factors involved. Me I would be depressed if I stayed home alone all the time. social security may see that as the reason why a person who is claiming to be depressed is depressed, SSDI may view it as leave your house engage in activities and your level of depression may decrease. roller blading in the park will decrease depression, and you are not in close contact with other people and so you should not feel such anxiety about your odor, and it is free. go for a bike ride or run. outdoor sports are the best way to relieve depression and anxiety and not be in close contact with other people.

Oct 2, 2013, 7:32:00 AM
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