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UK Members' Meeting 19.10.19

PostPosted: Fri Aug 09, 2019 5:49 pm
by malory
St Mary's Hospital Meeting in London, UK

SATURDAY 19TH OCTOBER from 11am until 1pm. Please keep this date free if you can be in London because some specialists, including Dr Elizabeth Shephard, http://www.meboblog.com/search/label/Shephard and Dr Azara Janmohamed have agreed to give up their Saturday morning to have a meeting with us at: St Mary's Hospital, Praed St, Paddington, London W2 1NY. One focus of the meeting may be discussing the need for a more comprehensive, useful test. I hope that many odour sufferers will be able to attend this meeting as large numbers of us would demonstrate our commitment to moving things forward.

While you're here, why not sign this petition:
https://www.change.org/p/ministerio-de- ... 39bf2bcd20

Re: UK Members' Meeting 19.10.19

PostPosted: Tue Sep 10, 2019 9:40 am
by admin
Thanks Malory

Re: UK Members' Meeting 19.10.19

PostPosted: Thu Oct 10, 2019 11:18 am
by malory
SATURDAY 19TH OCTOBER from 11am until 1pm.

St Mary's Hospital SMCA Clinical Lecture Theatre, Level 2, Cambridge Wing,
Praed Street, London W2 1NY

It would be useful to have an idea of who is attending via email: karen.james@meboresearch.org.
Everybody is welcome to come to the meeting.
Please call if you can't find us: 07505 590972
At 11am, however, I will turn the phone off.

Please note that no recording (audio or visual) is permitted. I will write a summary of main points for those who can't attend.

Re: UK Members' Meeting 19.10.19

PostPosted: Mon Oct 14, 2019 9:37 am
by malory
REMINDER:
Dr Elizabeth Shephard http://www.meboblog.com/search/label/Shephard
and Dr Azara Janmohamed are giving up their Saturday morning to have a meeting with us. We only have 2 hours to demonstrate that our community need help, so it would be good if a large group of us could attend at:
St Mary's Hospital, SMCA Clinical Lecture Theatre, Level 2, Cambridge Wing, Praed St, Paddington, London W2 1NY from 11am to 1pm.

Any odour sufferer is welcome to attend. An email to confirm attendance would be much appreciated:
karen.james@meboresearch.org

CONTENT OF MEETING
As stated in my original message, one focus of this short meeting will be discussing the need for a more comprehensive, useful test. For this reason, it would be good to have lots of people whose TMAU tests came back negative attend the meeting.

Dr Shephard will also be talking about a potential project. As always, nobody wants to make people hopeful, only to have them let down by a failed bid for funding, but the potential project involves an application for funding with the Halley Stewart Trust for a social project regarding tmau/metabolic body odour. http://www.sirhalleystewart.org.uk/what ... t-we-fund/
www.sirhalleystewart.org.uk

The aim is to get the backing of this Trust to fund a social research project into the effects of living with TMAU. The Trust will fund a post for a research associate who will, professionally and ethically, conduct interviews (audio, via skype perhaps) with our community and carry out surveys. 20+ face to face interviews and 100+ written surveys are needed.

With this evidence of discrimination in the workplace and social inequality etc, the backing of Halley Stewart Trust, and support from UCL, Liz Shephard hopes to establish an All Party Parliamentary Group which can then effect change at government level regarding disability etc. Her UCL colleagues/advisors have said that our individual efforts to contact MPs will always have minimal impact and that backing from UCL and from a Trust like Halley Stewart will have more impact. Let's hope that once the government realise how much it costs to keep odour sufferers sick (via welfare benefits, counselling etc), they may then decide it's cheaper to cure us!!!

Re: UK Members' Meeting 19.10.19

PostPosted: Mon Nov 04, 2019 9:47 pm
by crystal
hello :)

I would be very interested to know the outcome of this recent meeting held in London.

I am a long-term sufferer and recently have been finding it very difficult to manage my symptoms and is becoming an immense struggle to cope more than ever with everything this condition brings us.

I would appreciate any information you could share with us for those who were not able to attend in person.

crystal x

Re: UK Members' Meeting 19.10.19

PostPosted: Sat Nov 09, 2019 8:29 pm
by PoetFire
Prof Shephard approved summary of the meeting :) ...

https://www.meboblog.com/2019/10/prof-s ... eting.html