Karen's UK MP Campaign for Metabolic Malodor

A Message from Karen about a UK Campaign.
Karen is a long-time MEBO volunteer who often arranges London meetups.
In this post she tells of a UK Campaign to make politicians aware of Metabolic Body/Breath Malodor and what the Health System can do to help.
Perhaps it will encourage similar campaigns in other countries.

Campaign Message from Karen

UK TMAU Testing

We think it’s time for a new test and we also need more labs to take on the role of TMAU testing

Progress may be slow, but that just means we need to try even harder to get heard. Please support this effort by continuing our pressure on the NHS via members of parliament.  The testing issue is really crucial to ALL malodour sufferers and is the starting point for everything else - treatments, research etc. so please make the effort to send a few emails!!!

Below is a contact list of health MPs to write to + (below that) ideas for an e-mail to send so, if you don't have much time free, please feel free to use that e-mail as a starting point to make your own.

Who to contact:

Caroline Dinenage  Ian.Potter@dh.gsi.gov.uk
House of Commons, London, SW1A 0AA
Tel: 020 7219 7078; Email: caroline.dinenage.mp@parliament.uk

Jeremy Hunt  https://contactus.dh.gov.uk/?openform

Steve Brine  https://contactus.dh.gov.uk/?openform
steve.brine.mp@parliament.uk

Stephen Barclay, House of Commons, London, SW1A 0AA
Tel: 020 7219 7117
Email: stephen.barclay.mp@parliament.uk

Tracey Crouch, minister for loneliness  tracey.crouch.mp@parliament.uk

Lord O'Shaughnessy  oshaughnessyj@parliament.uk

Contacts for APPG :  link to page

The All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions was re-established in October 2017. The aims of the group, agreed by members, are to increase awareness of rare, genetic and undiagnosed conditions in parliament and help ensure that patients and families affected by these conditions have access to appropriate care and support.

Stephen Twigg   stephen.twigg.mp@parliament.uk

Proposed letter for mps:

 Dear ...

Although the concept of metabolic body odour is not a recent one, Trimethylaminuria remains the only named malodour disorder and the only malodour condition which is diagnosable by means of a urine test. The disorder is incurable, not linked to hygiene practices, and causes the sufferer to emit odours so pungent that people around them can feel nauseous and suffer symptoms similar to an allergic reaction. Producing fecal, sewage, rotten egg or fish odours has a devastating impact on all aspects of the odour sufferer’s life. In spite of this, metabolic malodour disorders are regarded as trivial by some medical practitioners because they are diseases without a death end point.

·         For decades, a large group of people with Trimethylaminuria symptoms have stated that their symptoms do not improve at all with the standard treatment protocol.

·         For decades, another large group of people have stated that their Trimethylaminuria (TMAU) test results are negative but that they have symptoms of bloodborne halitosis and/or metabolic body odour.

The NHS has consistently ignored all of this feedback and left these ostracised, bullied, vulnerable people without support and, therefore, at risk of suicide. Rare Disease UK strategy cites the:  Promotion of the UK as a world leader in research and development in this field. However, our community has yet to see evidence of this.

Recent changes in the TMAU testing methodology used at Sheffield Children’s Hospital, the sole testing centre for TMAU, have brought to light issues with the test which have worsened the situation for odour sufferers. This is ironic given that The UK Strategy for Rare Diseases (Page 15) claims: The Government is committed to shortening and improving the quality of the diagnostic journey for rare disease patients.

Analysis of the Sheffield Children’s Hospital test results of people with demonstrable symptoms show huge fluctuations in readings: negative results are produced on one occasion and positive readings on another. The test is no longer fit for purpose and we insist that a new test, which encompasses other volatile compounds known to cause malodour, should be brought into effect immediately.

An effective diagnostic test is a necessity:

It could help people pinpoint the main odorous chemicals they are producing and therefore guide them towards a more appropriate treatment (specific dietary measures, for example).

It could allow them to present a lucid explanation of their condition to educational establishments and employers. This could, in turn, reduce the bullying they suffer because educators and employers could then regard the validated metabolic malodour as a hidden disability  (https://invisibledisabilities.org/what-is-an-invisible-disability/) and reinforce the British values of tolerance, individual liberty and mutual respect through emphasising that discrimination against disabled people is unlawful. Metabolic malodour patients have a right to education, a right to work, and a right to live their lives free of harassment and discrimination, yet current provision does not address these issues.

The UK malodour community demands that a policy is put in place:  .

·         To ensure 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

·         To ensure that such a test is set up in various laboratories around the country and not just in Sheffield Children’s Hospital.

·         To encourage the sharing of NHS statistics regarding the amount of tests requested by patients and the number of positive diagnoses per annum. The Freedom of Information Act 2000 provides a right of access to a wide range of information held by public authorities, including the NHS. https://www.england.nhs.uk/contact-us/foi/

·         To establish a National TMAU/Malodour Programme which should not only ensure access to more accurate methods of testing via GP referral but also offer a coordinated approach to supporting patients, including a webpage dedicated to the disorder on the Sheffield Children’s Hospital  website plus an annual conference to discuss research opportunities and potential therapies.

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