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PRESSURE GROUP

Posted: Fri Apr 29, 2011 3:45 pm
by malory
A group of us in the UK have started a kind of pressure group. We have begun to alert GPs to the nature of our condition and to the fact that we are often misdiagnosed/fobbed off by the medical community. Some of us have TMAU, others have some other condition (see MEBO research) but we all have odour conditions.
It is important that our conditions are taken seriously so that people get appropriate help and are geared towards doing the right tests etc.

Make your voices heard! Write and e-mail the people who could start to change things.

I've sent off the testimonials of our experiences to:
Clare Gerada at Royal College General Practitioners, RCGP HEadquarters, I Bow Churchyard, London EC4M 9DQ, as this seems to be the most important source of info for GPs.

Could everyone in the UK also try to e-mail the RCGP contacts with their testimonials/experiences on Tuesday 3rd May or some time near that date as this will be a good way of spreading the word to different people in same organisation.

CONTACTS:
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]

PLUS:
Meet ups in London will be:
The Tattershall Castle Boat near Embankment tube from 1pm onwards on the following days:
4th June, 10th September, 11th September.