Be a part of the new MEBO EMAIL CAMPAIGN UK NHS

A NEW MEBO 2018 EMAIL CAMPAIGN IN THE UK
NEEDS YOUR PARTICIPATION
PLEASE HELP TO MAKE A DIFFERENCE!

Please support our MEBO Public Relations Director in the UK, Karen James, who has been representing MEBO to the UK National Health Services (NHS) through the years. Karen has spearheaded numerous MEBO Email Campaigns in the past, which have been very instrumental in bringing to light the medical condition, Trimethylaminuria, and has helped many sufferers.

MEBO rallies behind TMAU as our poster odor-condition because it's the only one that has been given recognition by some scientific/medical institutions. However, MEBO's intentions have always been to represent all other Malodor condition, including PATM, yet to be researched and better understood.

MEBO rallies behind TMAU as our poster odor-condition because it's the only one that has been given recognition by some scientific/medical institutions. However, MEBO's intentions have always been to represent all other Malodor condition, including PATM, yet to be researched and better understood. No matter what odor condition type you have, this is your opportunity to attempt to get NHS to look our way to develop the proper testing and treatment our community desperately needs.

A MESSAGE FROM KAREN:

University College London Hospital hosted another TMAU patient group meeting on 1st March. It involved the scientists from Sheffield Children's Hospital describing their new testing method in detail. However, UK sufferers have noticed that the SCH testing method (adopted since 2017) isn't detecting many of our odour problems. Failure to diagnose new patients will result in our 'official numbers' falling even further (and they already do not accurately reflect the true extent of malodour conditions!!). The implications affect all of us: TMAU services and NHS provision could gradually be withdrawn; malodour conditions could become even less significant in the eyes of the medical institutions, and GPs could have even greater power to refuse patients for NHS testing as, according to Sheffield Children's Hospital statistics, TMAU is now a very rare condition in the UK.

We suspect that the new SCH methodology is just not capturing most of the malodour cases. It is no longer fit for purpose, so let's take this opportunity to move on from the concept of ‘TMAU negative’ diagnoses and insist on a new test, which reflects our numbers more accurately. It is paramount that we:

a) establish a better test, which could hopefully include more volatiles - not just TMA.

b) encourage other laboratories (namely UCLH) to take on the test as well.

Basically we need a National Programme, and the test is the starting point. Following on from the establishment of a test which is fit for purpose, we can then ask for a webpage on the hospital sites (Sheffield Children's Hospital, UCLH website, for example) which informs people about the numbers of tests requested etc. We could also request an annual TMAU/malodour conference to discuss the progress of research in the area. We could also request that people be able to pay to test directly with the lab when GPs don't cooperate.

What we can do

Email all the labs and departments that refer people for testing such as UCL. The contact details are:

CONTACTS:

E: Contact Prof Simon Heales

helena.kemp@nbt.nhs.uk

gst-tr.ELCHAdultMetabolicReferrals@nhs.net

peter.galloway@ggc.scot.nhs.uk

chris.hendriksz@srft.nhs.uk

Tarek.Hiwot@uhb.nhs.uk

debbie.mann@uclh.nhs.uk

E: Contact Dr. Amanda Lam

E: Contact Mr. Nana Ghansah

E: Contact Ms. Leila Cornes

E: Contact Dr. M. Henderson

E: Contact Mr. Robert Barski

E: Contact Dr Paul Cook

E: Contact Ms Nicola Merrett

E: Contact Dr Peter Prinsloo

E: Contact Dr Donna Fullerton

Ideas for e-mail:

One of the key elements of the UK Strategy for Rare Diseases is better education/training for health professionals to ensure earlier diagnosis and access to treatment. Another key element is the promotion of the UK as a world leader in research and development in this field. Page 31 of the strategy also advocates that patients have a say in decisions about treatment and in the planning, evaluation and monitoring of services.

As regards Trimethylaminuria and metabolic malodour disorders, we have much to do to even come close to these objectives.

Past and current testing procedures

Currently, the NHS recognises the condition of TMAU but offers an inadequate testing option. The urine test offered to diagnose the disorder has become unreliable and unfit for purpose. Testing, which occurs at Sheffield Children’s Hospital, now involves a new method, and positive test results have plummeted. The TMAU community are not criticising either Sheffield’s new method or Nigel Mannings’s method (used from 1997 to 2016), but we are adamant that a new test urgently needs to be put in place if we are to detect the many cases of malodour disorder which do not appear in official statistics. The consistent under-reporting of malodour sufferers on the TMAU/malodour spectrum over the years has resulted in there being a very haphazard approach to this disorder. The most significant consequence is that those who test negative are not given any support. As malodour sufferers are more prone to suicide in cases where there is increased isolation, the community feels a National TMAU/Malodour Programme should be in place which should not only ensure more accurate methods of testing but also offer a coordinated approach to supporting patients.

Future testing procedures

We are, therefore, demanding that a new test is devised and that it takes into account the work of Professor Ron Wevers and includes tests for other volatiles (hydrogen sulfide, methanethiol, cysteamine, dimethyl sulfide):http://www.ru.nl/english/people/wevers-r-a/

PubMed summary:https://www.ncbi.nlm.nih.gov/pubmed/29255262

Additional laboratories to offer testing

We believe that more laboratories, not just Sheffield Children’s Hospital, should be taking on responsibility for the testing service, and we would like the clinical scientists at UCL and other laboratories to consider our proposals.

Full article: LINK

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In 2011, Karen's Email Campaign have been successful in registering and publishing 10 body odor related uncertainties / questions, for potential research by UK Duets, NHS Evidence, National Institutes for Health and Clinical Excellence presented by MEBO, now found in the Library of NHS UK database, about the effects of treatment for TMAU.

Karen has also published her own testimonial article, My body produces an offensively pungent chemical, was published in the Royal College of General Practitioners (RCGP), InnovAiT, Oxford University Press. InnovAiT 2012; doi: 10.1093/innovait/ins093 in the Oxford Journals of the Oxford University Press, InnovAiT.

An excerpt from this article:

The GP perspective
It is challenging when faced with a patient that you do not know how to help. The curriculum is vast and reflects the level of knowledge GPs have to acquire, and maintain, over their careers. It is inevitable that you will experience patients from time to time with problems that will stretch your knowledge to its limits. As Karen has alluded to throughout this article, it is important to listen to patient concerns, be open-minded, and be prepared to look things up and/or take advice from both primary care and specialist colleagues if you feel that you are treading on uncertain ground.

We profoundly thank Karen for her work and dedication to our community throughout the years. She has most certainly spearheaded many programs/campaigns that have truly made a difference!

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María

María de la Torre
Founder and Executive Director

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

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