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MEBO - UBIOME study 2018

NCT03582826
ClinicalTrials.gov
MEBO Gut Microbiome Study
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
Ubiome Gut EXPLORER : 10% OFF
Join/Watch the weekly
TMAU UP Podcasts

Videos : TMAU stories

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact map@meboresearch.org
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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RESEARCH DETAILS

DONATIONS THRU 31-NOV-2016:
£ 943.03/GBP
$ 568.00/USD

TOTAL at today's ROE
£0.80/GBP = $1.00/USD

£1,398.07 = $1,745.14

MEBO UK PAYPAL FOR TRINZYME

********
MEBO US PAYPAL FOR TRINZYME

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Option: pay with your credit card instead of PayPal account by clicking on either Donate button above.

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Blog Archive

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 October Mental Health Column, Crissan 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 to establish and maintain:

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.
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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.

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Wednesday, September 26, 2018

TMAU and MTO Test in Holland

Holland has a lab that tests for TMAU (urine and DNA),
and also last year started a test for :

SELENBP1 gene (DNA test)
Urine test for 2 or 3 volatiles (not known yet). Seems to be METHANETHIOL and DIMETHYLSULFIDE and possibly others.

MEBO Mental Health Director Crissan has been in touch with the lab, and got these details about their metabolic malodor tests.

Crissan writes : 

The following information was provided by the head of the genome lab at
Radboud UMC:

The good news is that the lab does offer the Trimethylaminuria and
malodour test. Both tests are available for local and international
patients. The TMAU test (genetic and urine) can be ordered online. The
malodour syndromes test (urine and plasma) through a form.

In addition:

- The lab has verified that a referral from a physician is always
necessary.
- Payment should be completed beforehand, the physician will receive an
invoice with instructions and the patient has to complete the payment
before the test can be processed. - It will vary per country and
insurance policies if the expenses are covered or not.
- Patients should get all of the information about the tests from their
referring physicians. This includes all questions with regards to test,
instructions, sending materials and the test results.

- Herewith the lab contact information. ( patients can provide their
physician with this information):

Postal address:
Radboudumc
Genome Diagnostics, route 815
Head laboratory: Dr. H. Yntema
Postbus 9101
6500 HB Nijmegen
The Netherlands
Tel: +31(0)24 3613799
Fax: +31(0)24 3616658
email : gen@radboudumc.nl
https://order.radboudumc.nl/en/genetics


- It's advisable that the physician consult other physicians/ metabolic
specialist with knowledge of TMAU if they have questions with regards to
test, interpretations of the results etc. The laboratory will not be
able to provide any information with regards to these matters.

Herewith the test instructions mentioned in the Request form (see
attachment), these corresponds with the test instructions I have also
received.

I Fish odour syndrome or trimethylaminuria diagnosis
Deficiency of the Flavin-containing Mono-Oxygenase 3 (=FMO₃) is
responsible for fish odour syndrome or trimethylaminuria (OMIM 602079).
First line
diagnostics is the mutation analysis of the FMO₃ gene (requires
uncentrifuged EDTA blood or isolated DNA). In case of variants of
unknown significance
in the FMO₃ gene we will advise second line testing using a fish meal
loading test (a fish meal with preferably 300 grams of fresh fish). In
the pre- and
post load urine samples we measure trimethylamine (TMA) and the ratio
TMA/TMAO using NMR spectroscopy.

NMR spectroscopy also will confirm or exclude dimethylglycine
dehydrogenase deficiency as a cause of a fish like malodour.
We prefer to obtain two samples:
1. Urine (>2ml) on normal diet (=pre-load sample)
2. Urine collected during 12 hours after a fish meal with preferably 300
grams of fresh fish. From this volume >2ml should be sent frozen on dry
ice (=post-load sample).

II Other malodour syndromes
For other non-fish like malodour syndromes we advise NMR spectroscopy of
urine and heparinised plasma (2 ml of each to be sent frozen on dry
ice).

For DNA analysis:
EDTA 5 ml – do not centrifuge
EDTA plasma for DNA analysis (or isolated DNA) can be sent at room
temperature to Radboudumc, Laboratory for Diagnostics, PO Box 9101,
Internal Post 815, 6500
HB, Nijmegen, The Netherlands and to the attention of the Translational
Metabolic Laboratory.

Urine and heparinized plasma for NMR analysis should be sent well-capped
and frozen on sufficient dry ice to Radboudumc, Laboratory for
Diagnostics, PO Box 9101,
Internal Post 815, 6500 HB, Nijmegen, The Netherlands and to the
attention of the Translational Metabolic Laboratory.
For NMR spectroscopy minimal volumes required are:
- Urine; 1 ml
- Heparinized plasma or serum; 1 ml
- Cerebrospinal fluid; 1 ml

Herewith all of the links:

Request form Trimethylaminuria and Malodour syndromes:
https://issuu.com/radboudumc/docs/request_form_nmr_body_fluid?e=28355229/47517668

Link to order the test online (physician has to do this):
https://order.radboudumc.nl/en/products/conditions/metabolic-disorders/trimethylaminuria

The malodour test can't be ordered online, so I suggest patients to ask
their physician to fill out the request form, if they specifically want
this test or a combination of TMAU and malodour test. (see attachment).

-  Fill out Request form Malodour syndrome and select option II other
malodour syndromes

Turnaround times are mentioned in the table.

link:
https://order.radboudumc.nl/RadboudEAS/media/EAS/EASBlancoENGNijmegen_versie_09-2018.pdf

Prices:

- Trimethylaminuria test 400 Euro's, approximately 480 USD
- Malodour syndromes test 327 Euro's, approximately 381 USD

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