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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

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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
Showing posts with label employment / homeworking. Show all posts
Showing posts with label employment / homeworking. Show all posts

Friday, June 20, 2014

MEBO Raising Awareness Campaign: Body Odor and Halitosis

As part of MEBO's Mission to raise awareness in the medical field and community at large around the world, all sufferers are invited to use any information below to support this effort.

As the Founder and Executive Director of MEBO Research, Inc. (MEBO), an international patient-advocacy Charity, I would like to depict the psycho-social effects of living with uncontrollable or difficult to control body and breath odor conditions. MEBO's Mission is to work with laboratories from around the world to launch trimethylaminuria (TMAU) test programs, to initiate research for treatment of rare genetic metabolic diseases that result in body malodor and halitosis, and to carry out our Raising Awareness Campaign through media networks and professional medical journals.


SOCIAL ISOLATION

Chronic and difficult to control, if not impossible to control, body odor and halitosis are the result of a physical impairment that causes social isolation with significant adverse implications on quality of life, productivity and psychological health. It is a rare universal disease, which transcends national and racial boundaries, as depicted by sufferers coming together from around the world under MEBO’s flagship to proactively pursue research for treatment and a cure.

NATURAL REACTION TO OFFENSIVE ODORS

All human interaction experienced by body odor and halitosis sufferers is compromised at a most basic level, whether it is in the workplace, education, general public or indeed romantic and family life, leading to discrimination transcending the home, workplace and in the general public. Offensive odor as a stimulus for the uninitiated creates a strong aversion, an evolutionary response to potentially infectious stimuli. The evolutionary response to noxious olfactory stimuli is one of disgust. It has been suggested that this serves as a method of guarding against contact with potentially infectious and harmful substances. It is possible that the impact of these conditions on patients’ lives is great. Social relationships are one of the pillars of quality of life, and social isolation is known to correlate with psychological comorbidities, such as chronic depression and anxiety. Patients with difficult to control body odor and halitosis frequently tell a sorry tale of constant social rejection, psychosocial assaults, and as a result, usually have lives of isolation with all the associated psychological comorbidity that this entails.

BARRIERS TO OBTAINING EMPLOYMENT AT INTERVIEW

Human nature being what it is, there is likely to be discriminative and human rights issues if this malodorous medical condition is present, no matter what the qualifications, personality traits, personal appearance and demeanor of a job candidate. Few employers would be willing to recruit a malodorous person to a workforce, especially for work involving the general public, such as sales assistant or waiter/waitress. The repeated rejections are not usually openly discussed, as employers are quite careful not to incite discrimination suits against themselves.

WORKPLACE DISCRIMINATION

Those body odor and halitosis patients who manage to find employment are prone to face further discrimination and develop a deep sense of job insecurity and instability, which further contributes to chronic depression and the development of an anxiety disorder. As mentioned previously, malodor medical conditions are virtually unknown by members of the general public. The workplace becomes just another platform of compromised social interaction. There are frequent reports of unfair dismissal, sustained bullying campaigns and other inequalities such as being overlooked for promotion, etc.

Such is the stigma and social unacceptability of suffering with malodorous medical condition such as TMAU that many patients attempt to work from home. In these times of global recession however, work of this nature is difficult to come by without specific skill sets.

CHRONIC SOCIAL ANXIETY AND DEPRESSION

It is unnatural and unhealthy for an individual to exist in a state of constant social rejection. Such maltreatment all too frequently comes at a psychological cost to the patient. Chronic social anxiety and depression are especially prevalent, and these are well known issues related to decreased productivity and unemployment.

COST OF MEDICAL AND DIETARY MANAGEMENT

It will by now be readily apparent that even if the symptoms of body odor and halitosis can be controlled (not always possible for many patients), its management can become a lifestyle, demanding constant attention and research. If the patient manages to find employment that provides medical insurance benefits, few medical insurance policies cover conditions like TMAU, resulting in tremendous financial cost to the patient.

The rareness of the conditions can mean that patients must travel long distance to specialist physicians for consultation and treatment. This is costly not just financially, but in terms of time costs, which could make work difficult for sufferers.
Dietary supplements, specialist foods, soaps and antibiotics and the other products that aim to control the symptoms do not come cheap, and nonetheless, are limited in its effectiveness in controlling symptoms.

BARRIERS TO HIGHER EDUCATION AND OTHER QUALIFICATIONS

Since body odor and halitosis symptoms present at an early age, education is adversely affected, leading to restricted employment opportunities throughout the person’s potentially productive years. As such, It is a condition comprising of anxiety, depression, social maltreatment, bullying in the schools, and general discrimination, which leads the sufferer toward a reclusive life of isolation. This is particularly most damaging during the developmental stage in one’s life, in puberty, when the odor most typically worsens with hormonal changes. It is during this time, that a sufferer is bullied in school, compromising his or her normal psycho-social and psycho-sexual development. In addition, since hormonal changes trigger more severe odor symptoms just before and during menstruation, females are particularly compromised in their psycho-social and psycho-sexual development. As a result, many sufferers drop out of school, which later manifest in restricting employment options.

OTHER YET-TO-BE DIAGNOSED BODY AND BREATH ODOR CONDITIONS

In addition to TMAU, there are other yet-to-be diagnosed systemic body odor conditions not related to well-known physical illnesses that may also cause uncontrollable body odor, halitosis and bromhidrosis. It is most unfortunate that not all body odor sufferers can financially afford to pay for a TMAU test in the United States in light of the employment difficulties these conditions produce, and thus, the uncontrollable odor condition remains undiagnosed. Additionally, not all who test positive for TMAU are able to control their odor with the recommended TMAU Odor-Management Protocol, thus implying that there may also be additional causes of odor that still need to be researched and identified.

For all of the above-mentioned reasons, I would like to ask you to consider Minerve Jacques for SSI benefits. These benefits will assist her in receiving the much needed help to provide a fundamental financial support while she undergoes mental health therapy to assist her in coping with living with this condition. Your assistance in this matter will be greatly appreciated.

Additional Testimonials:
Anthology
How to use this blog for beginners

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)


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.


Please use your credit card to make your donation to MEBO.


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Friday, October 4, 2013

Webinar #7: "Seeking Employment" by Cheryl Fields

7th WEBINAR

"SEEKING EMPLOYMENT"

by
Cheryl L. Fields, MBA, Ph.D. (ABD)
Human Resources Consultant
MEBO US Community Outreach Director


POSTPONED

HOSTED BY RARE CONNECT


You are most cordially invited to attend the 7th Webinar hosted by RareConnect on Sunday, October 20th. Our dear friend and MEBO Community Outreach Director, Cheryl Fields, also known in our community as Dr. StillStanding, gave a very interesting and thought-provoking presentation on "Seeking Employment" at the MEBO Annual Meetup and Conference held at Miami Beach on June 23, 2012. She touched upon the dos and don'ts of job seeking, from writing a résumé 21st century style, to the job interview experience, to on-the-job and work environment issues for sufferers of body and breath odor conditions. Her presentation aroused a very lively group discussion that captivated the full attention of everyone present. Due to popular demand, the presentation went beyond the allotted programmed time, as more and more questions were raised.

We are most grateful to Cheryl for consenting to give us another presentation on this topic on the 7th Webinar hosted by RareConnect on Sunday, October 20, 2013.


DATE: Sunday, October 20, 2013

TIME: 1700h/5:00pm UTC (To determine your local time, click here, http://www.timeanddate.com/worldclock/)

TIME ZONE CONVERTER (Click here)

HOW TO JOIN THE WEBINAR:
  1. To enter the webinar meeting room, click here, https://eurordis.adobeconnect.com/
  2. Register as Guest (invited) with your name or username. No password is necessary.
  3. Connect your headphones.

  • See MEBO Community Blog for information on Community Outreach and Public Relations projects.
  • See previous WEBINARS (Scroll down to see all posts).
I look forward to seeing everyone at the webinar.

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)






A EURORDIS and NORD Member Organization 

Sunday, September 29, 2013

USAJobs - Federal Government Official Job Site

USAJOBS - The Federal Government’s Official Jobs Site
www.usajobs.gov
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.

GettingHired.com
GettingHired.com 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.

Visit GettingHired.com.

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
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.

http://www.usajobs.gov/
http://apps.opm.gov/sppc_directory/

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 Indeed.com and SimplyHired.com.

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

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
cheryl.fields@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)




A EURORDIS and NORD Member Organization 

Tuesday, June 4, 2013

Dealing with Rare Diseases in workplace


Allie Freitas, Moderator of the RareConnect.org site and Online Patient Communities Coordinator at NORD, wrote a very interesting post in the RareConnect.org site called,

"Supportive advice for both employers and employees when dealing with rare diseases."


She makes reference and links to articles in the New York Times and HCRP Georgetown and Ask Jan.org, as well as other legal sites.


Click on icon below to see her post.



María


María de la Torre
Founder and Executive Director

  A Public Charity
A EURORDIS and NORD Member Organization
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

Friday, March 15, 2013

Work-at-Home Jobs FAQ: "Telework" jobs

NTI provides Quality Virtual Staffing



What kinds of work-at-home jobs does NTI develop for people with disabilities?


About 85% of the jobs NTI develops are for customer service agents for federal agencies or commercial companies operating telephone call centers. Individuals hired as customer service agents use personal computers, high-speed Internet connections, phone lines, and telephone headsets to answer telephone calls from their homes.

Depending upon the organization the agents work for, they might do any of the following:

  • Accept orders for federal publications,
  • Answer questions about store products,
  • Handle billing questions for a cell phone company
  • Provide technical support for Internet service providers

The remaining 15% of the jobs NTI develops are in medical transcription, quality control monitoring, government survey work, business-to-business telemarketing, or miscellaneous areas.

Thursday, July 26, 2012

Why difficulty obtaining employment



MEBO Research's Community Outreach Director, Cheryl Fields, recommends sufferers to read this article in Workopolis entitled, "Why nobody wants to hire you", by Elizabeth Bromstein.



Can't get a job, even though you look in the mirror and what you see looking back is pure awesome?

Here are 15 reasons why people don't want to hire you.
  1. You're not a magical renaissance machine willing to work for less than what you're worth.
  2. You don't already have a job
  3. You're not getting past the bots
  4. You aren't qualified
  5. You have a stupid email address
  6. You're late
  7. You lied
  8. You're not passionate
  9. You look like a jerk online
  10. You're lazy about your LinkedIn
  11. You lack confidence
  12. You're just a bad interview
  13. You don't follow up
  14. You're inarticulate
  15. You're just not likable


Each one of these reasons has a discussion paragraph that is very interesting, that Cheryl and I recommend as a 'must read' to anyone seeking employment. Thanks Cheryl for the heads up.

María

Submitted by:

Cheryl Fields
a.k.a. Dr. StillStanding
Community Outreach Director


A Public Charity
(785)-286-7005 Home/Voice-Mail
www.meboresearch.org
cheryl.fields@meboresearch.org

Tuesday, July 10, 2012

Cheryl Fields' Miami Beach Conference Presentation: Seeking Employment


SEEKING EMPLOYMENT

by
Cheryl L. Fields, MBA, Ph.D. (ABD)
Human Resources Consultant
Founder of The Diversity Project
MEBO's Community Outreach Director


Our dear friend, Cheryl Fields, also known as Dr. StillStanding, gave a very interesting presentation at the our Miami Beach Meetup Conference held on June 23, 2012. Her presentation ignited a very lively group discussion that captivated the full attention of everyone present. The discussion and presentation seemed to potentially go on indefinitely, as it continued well passed the allotted time-frame per popular demand.


Cheryl touched upon the dos and don'ts of job seeking, from writing a résumé 21st century style, to the job interview, to on-the-job and work environment issues. We lightly touched upon employment discrimination law, but Cheryl's 20-page paper that she gives us for our perusal goes into more indepth detail.

We thank Cheryl for her very thought-provoking presentation, and hope she will someday do a video presentation on this topic. A heart-felt thank you goes to all attendees who participated in such a lively discussion. Thank you for sharing this special moment with us.

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@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.


Please use your credit card to make your donation to MEBO.


Subscribe for latest posts : Enter your email address:

Delivered by FeedBurner


A EURORDIS and NORD Member Organization

Sunday, March 11, 2012

Good homeworking blog : workfromhomeme.com

workfromhomeme.com
Homeworking is always a topic of interest for people with odor conditions. workfromhomeme.com is a blog run by Marie Bock that updates frequently about possible homweworking vacancies. It may be worth signing up for a daily update

body odor petition
MEBO Research

Tuesday, March 6, 2012

Work from home leads

An amazing woman who has been suffering from a body malodor condition called me in December with the most refreshing and inspiring approach to life in spite of her condition. We have spoken numerous times since then, and even though she is experiencing the same emotional pain all sufferers go through, she has an inner drive to find solutions and to help our community. She asks to be referred to as MS only to not disclose her name, but rest assured she is doing a great deal of groundwork behind the scenes to find some assistance to all sufferers. She is a true inspiration to me. While she pursues ways to help all sufferers, MS sent me this email with employment information that we hope will be helpful.

Employment


Go to any of these 11 websites, hopefully, you should be able to get a job.
  1. Sykes.com is currently hiring for Work From Home Customer Service Representative

    https://workathomeassess-sykes-home.icims.com/jobs/1174/job?hub=12
  2. Apprenbutlerhill.com is currently hiring for Web Search Evaluators Work From Home

    http://tbe.taleo.net/NA5/ats/careers/requisition.jsp?org=BUTLERHILL&cws=4&rid=213
  3. U Haul.com is currently hiring several Work From Home position in the Phoeniz AZ

    http://jobs.uhaul.com/contact_center.aspx?jobtype=workfromhome
  4. www.theladders.com (Salary start at 40K to 125K)
  5. www.Craigslist.org
    Always put these words in Work from Home or Work at Home, or Telecommute then put customer service position as example.
  6. www.WAHM.com
    On the left hand side Scroll down Click on Work at home job
  7. www.Wahjobleads.com
  8. www.Ziprecruiter.com
    Excellent website for Work from Home or any job.
  9. www.Juju.com
  10. www.newcorp.com (Work at home customer service representation)
  11. www.jobfox.com
  12. www.indeed.com

Thank you to this lovely lady for caring about others in such a loving way.

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@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.


Please use your credit card to make your donation to MEBO.


Subscribe for latest posts : Enter your email address:

Delivered by FeedBurner


A EURORDIS and NORD Member Organization