MEBO Private Facebook Group
to join : contact
maria.delatorre@meboresearch.org

MEBO Map Testing & Meetups


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

MEBO TMAU urine test

MEBO Research
TMAU Urine Test
United States only
PROGRAM IS PERMANENTLY SUSPENDED AS OF 2 MAY 2017

Click here for
REQUISITION FORM
Incomplete applications
will NOT be processed

SEE UPDATES HERE

1
test
$150 plus
shipping costs
2
tests
$250 plus
shipping costs

TWO PAYMENT PLAN OPTION
Send email to maria.delatorre@meboresearch.org to arrange, AFTER filling out Requisition Form, please.

Test analysis performed in batches of 20 or more

DATE: 2 MAY 2017
Currently on : PROGRAM IS TEMPORARILY SUSPENDED

Samples analyzed since June 2012 :
352
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
BannerFans.com
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

Your currency will be automatically converted to USD or GBP by PayPal.

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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

Subscribe to Blog

Enter your email address:

Delivered by FeedBurner

You will be sent a verification email

Subscribe in a reader

Blog Archive

Thursday, October 27, 2016

New London TMAU Patient Support Group. Karen writes.

London Metabolic Unit TMAU Patient Support Group.
Started in July 2016 by the Adult Metabolic Unit Staff.
Expected to meet 3-4 times a year.

Karen attended the recently started TMAU patient support group started by UCLH adult metabolic unit. So far the group has met twice (July and October).
This is the 3rd known  Adult Metabolic Unit to start a TMAU patient support group. The other 2 known groups also started this year, at the metabolic units in Dublin (Ireland) and Birmingham (UK).

Karen.is MEBO Research UK Public Relations Director (volunteer).
karen.james@meboresearch.org

Message from Karen about the recently started TMAU patient support group started by UCLH this July. So far has met twice.

Summary of TMAU Patient Group Meeting on 21.10.16 at University College London Hospital 3-5pm

The TMAU patient group at UCLH was set up in July 2016 by members of Dr Lachmann’s staff team. At the current time, it is open to those patients of Dr. Lachmann who have received a positive diagnosis of TMAU at his clinic. It is hoped, however, that the group will be able to expand to include other sufferers of malodour in the future.

The main activity of the session, led by a clinical psychologist, involved group members analysing the skills/attitudes they adopted in order to challenge a particular difficulty brought on by having TMAU. A few people described the initiatives they took in specific situations, for example, their actions during incidents of workplace bullying, or their preparations to improve confidence prior to attending a social event. Other group members identified, and then discussed, the empowering language used to describe these actions.

The group discussed the issue of NHS GPs refusing to refer patients for TMAU testing even when the patient has presented a page of information (printed from TMAU.org.uk  ‘how to get tested’) during the consultation. It was decided that further raising awareness is needed, and it was agreed that an information leaflet should be designed for this purpose. The leaflet will be displayed in the Charles Dent Metabolic Unit of the National Hospital for Neurology and Neurosurgery and can also be distributed to GP practices.

Subsequent discussions were cut short by time, but they included: sharing strategies to deal with bullying at work/school/college and comparing the efficacy of various supplements such as chlorophyll, Body Mint, charcoal, riboflavin.

Finally, it was agreed that the patient group needs to be led and managed by its own members and that volunteers from our own community can take part in organising the content of sessions.

So we need a logo!
Our task is to create a very succinct, informative TMAU leaflet which features a simple logo. The graphic could be designed to identify the group as a strong, united community, which will support fellow sufferers. If you would like to contribute a logo/graphic for this leaflet, please let us know.

If you would like to contribute to the wording of the leaflet, make corrections/improvements, or make suggestions as to what should be included on it, please contact karen.james@meboresearch.org. At present, we have these ideas for information:

TMAU (Trimethylaminuria) is a metabolic disorder in which the sufferer’s body emits the malodorous gas trimethylamine via the skin, hair, and/or breath.
Although the disorder is not yet curable, patients take many measures (dietary restrictions etc.) to try to diminish the pungent odours they produce.
Diagnosis of the disorder in the UK is available via the NHS through a GP referral to a metabolic specialist such as Dr. R. Lachmann. See tmau.org.co.uk :   http://tmau.org.uk/index.php/getting-tested for further details.

If you would like to help find a solution for this disorder, please go to international charity MEBO Research :
MEBO Research website
MEBO blog (this site)


get New Posts by EMAIL : Enter your email address :



A EURORDIS and NORD Member Organization

0 comments:

Post a Comment