MEBO Director spearheads email campaign reinstate UK TMAU test

MEBO's Public Relations Director, Karen, spearheads an email campaign to reinstate the UK NHS TMAU urine test program founded by Nigel Manning in 1997. This TMAU urine test program carried out at the Sheffield Children's Hospital looked for indications of Primary TMAU as well as Secondary TMAU. Not only had Nigel's TMAU urine test been available to sufferers through their physicians in the UK, but many labs from the United States, Canada, and other European countries would also send samples for analysis to this lab. Unfortunately, due to Nigel Manning's recent retirement, this TMAU test program has been suspended indefinitely; and as a result, the TMAU specialists who treats TMAU patients, Dr. Robin Lachmann, M.D., and Unit nutritionists will not be accepting new patients to their program.

MEBO asks all sufferers from around the world to please join Karen in the email, mass-mailout, and telephone campaign she's organizing to ask NHS to reinstate this program immediately.

This is a totally unacceptable turn of events. Therefore, MEBO asks all sufferers from around the world to please join Karen in the email, mass-mailout, and telephone campaign she's organizing to ask NHS to reinstate this program immediately. See Karen's message and instructions below.

On March 2011, in her effort to set the groundwork for future potential TMAU research programs, Karen spearheaded the very successful email campaign to raise awareness in the UK General Medical Research Counsel. The results was successful, and after MEBO much work with the , 10 body odor concerns were published in the Database of Uncertainties about the Effects of Treatments (UK DUETs).

A WORD FROM KAREN:

Whether you have a positive diagnosis of TMAU or not, the withdrawal of the UK’s NHS testing service is relevant to everyone in the malodour community and will have a very negative impact on all people who suffer from malodour conditions, regardless of the cause of that condition. This is because the TMAU urine test – however flawed or limited it may be – is ALL we have to convince medical institutions to take odour conditions seriously. For this reason, we must all protest about what has happened and try – yet again – to convince the ministers of health to take malodour conditions seriously. Please take the time to write a brief letter of protest to the contacts below. This is not a time for waiting for somebody else to make the effort. Neither is it acceptable to say that you don’t want to share your e-mail address because you want to remain anonymous: you can post a handwritten letter or make a telephone call instead!


For several years, the community of sufferers of metabolic disorder Trimethylaminuria have been struggling to raise awareness of the condition and to convey the severity of the symptoms to health professionals and the general public alike. Trimthylaminuria (TMAU) causes the sufferer to emit repellent, pungent odours, which render the sufferer a social misfit. The TMAU sufferer usually struggles at school and in the workplace and often suffers financial loss as a consequence. Although TMAU is a disorder recognised by the NHS, and various consultants help patients to try to manage symptoms, our community has now been hit by a retrograde decision: the current testing facility to be diagnosed for this disorder has been withdrawn from us.

Reasons to reinstate the Trimethylaminuria testing service:
It is unacceptable for the UK not to have a reliable test source for a recognised metabolic illness which has, for several years, been acknowledged and managed by the NHS.

TMAU sufferers are often unemployed or under-employed because of their socially alienating conditions. The resultant loss of income means that TMAU sufferers will find it extremely difficult to fund private testing options.

The number of people, especially young people, with suspected TMAU has steadily increased over recent years. These people need to be tested to ascertain exactly what the source of their odours are. In this way, they can, at least, follow the right treatment protocol in an attempt to control their symptoms.

Link to graphs : http://www.meboblog.com/2012/09/tmau-result-stats-from-sheffield-uk.html
The person without a diagnosis will have no access to any support networks offered by the NHS (dieticians, specialist consultants, counsellors etc) and will be more susceptible to bullying, social isolation and suicide as a result.

Contact:

English Health Secretary:
The Rt Hon Jeremy Hunt MP
Via e-mail: https://www.jeremyhunt.org/contact

Paste the address into your browser: https://contactus.dh.gov.uk/?openform
Via telephone: 0207 210 4850
Via post: 2 Royal Parade, Tilford Road, Hindhead, Surrey GU26 6TD

The Welsh Cabinet Secretary for Health, Well-being and Sport:
Vaughan Gething
Via email at: Correspondence.Vaughan.Gething@gov.wales
http://gov.wales/about/cabinet/cabinetm/vaughan-gething/?lang=en

Scottish Cabinet Secretary for Health and Sport:
Shona Robison MSP
Via e-mail: scottish.ministers@gov.scot
Postal address: St. Andrew's House, Regent Road, Edinburgh, EH1 3DG

Your help in this matter is very much needed. Just copy and paste the 3 paragraphs above and email them to the 3 organizations. PLEASE HELP!

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
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