try MPs again

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try MPs again

Postby malory » Sat Nov 03, 2018 12:58 pm

IF YOU'VE TRIED YOUR LOCAL MP WITHOUT SUCCESS,PLEASE TRY THE FOLLOWING. THESS MPs WON'T RESPOND IF YOU'RE NOT RESIDENT IN THEIR AREA, BUT THESE MPs ARE SYMPATHETIC TO CFS AND SO MAY LISTEN TO US.

nicky.morgan.mp@parliament.uk

carol.monaghan.mp@parliament.uk

example email:

I'm writing to bring your attention to a largely ignored, yet increasingly prevalent, group of disorders: metabolic body and breath odours. These disorders, which include Trimethylaminuria (TMAU), devastate all areas of a sufferer's life, and yet they are mostly ignored/trivialised by the medical profession.

METABOLIC BODY ODOUR/HALITOSIS HAS A NEGATIVE IMPACT ON THE ECONOMY The intensity of the repellent fecal/sewage/rotten egg/stale fish/sanitary bin odours emitted by the malodour suffer vary and can be transient in some people. In most cases, the odours (which are always totally unrelated to personal hygiene!!) cannot be controlled. This results in the malodour sufferer underachieving in education and the workplace and frequently having to rely on state benefits. Also, as nearly all GPs are unaware of metabolic odour disorders, odour sufferers have a multitude of inappropriate investigative procedures which waste time and money. Mental health interventions are also employed to help odour sufferers, but it would be more cost effective to find a real solution to their physical problems!

NHS AND METABOLIC ODOUR DISORDERS The NHS only recognise TMAU, and the provision/support for TMAU sufferers is very poor. Research is non-existent and the treatment protocol for TMAU (low choline diet and supplements) is frequently ineffective. The TMAU urine testing service at Sheffield Children's Hospital is no longer producing many positive diagnoses. This is not because the number of sufferers has decreased. The contrary is true: our numbers are ever-increasing. The parameters of the test have recently been altered - perhaps to deny the existence of the 'malodour problem' and so reduce the burden on NHS services. As malodour sufferers are prone to suicide, we find this situation disgraceful to say the least.

WHAT WE WANT Our community would be very happy to meet with you to discuss these issues. There are many of us based in London who would like to discuss some of the issues we face. We would like to find a source to test other metabolites (METHANETHIOL , DIMETHYLSULFIDE).
We would like a MP to raise a question in Parliament. We would like the NHS to hold a conference where the current provision for our disorders is discussed properly and in consultation with community representatives.
malory
 
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Location: London -west

Re: try MPs again

Postby idealist » Tue Nov 06, 2018 12:59 pm

Will do ;)
idealist
 
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Joined: Tue Sep 29, 2009 8:26 pm


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