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Tuesday, December 6, 2016

2nd UCL TMAU group session : official summary

2nd UCL TMAU group session
Summary of TMAU group session given by  psychologist Dr Monique Cloherty

On 22nd October 2016, the London NHS Adult Metabolism Unit (Charles Dent Metabolic Unit, UCL National Hospital for Neurology and Neurosurgery, London) held its second TMAU Group Meeting. This follows similar meetings this year at free healthcare Adult Metabolism Units in Dublin and NHS Birmingham, a breakthrough for the TMAU community.

Perhaps others can see if their regional Adult Metabolic Disorder Units might start TMAU group meetings.

Clinical Psychologist Dr Monique Cloherty hosted the session. The Charles Dent Metabolic Unit has kindly given this summary of the session  with Dr Cloherty for public release. :

Summary of TMAU session given by  psychologist Dr Monique Cloherty
The Charles Dent Metabolic Unit, London
22 Oct 2016


We got to know each other in small groups and shared our
experiences of TMAU.

We shared out stories of isolation. TMAU is very much a social
problem. A secret that we are constantly trying to hide. We told of
difficult events; name calling, bullying and not being believed that
have happened. People rarely spoke about a single event but a
sequence of events linked through time. We shared how TMAU made
us feel about ourselves, we can feel alone at times and paranoid.

We also heard about initiatives and steps that people have taken to
address the problems that TMAU can cause. We identified resources
and skills that made it possible:

Use of knowledge and being fearless
Assertiveness
Planning ahead
Having a supportive friend and family
Not putting up with it. Knowing which battles to fight, which
comments to let go.

Key messages to remember from the session were:

We are sharing this experience
Its been a relief to share it
We are not the only ones
We want to live a normal life
We are not going to be defeated
We want to be ‘in’ it.

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1 comments:

Anonymous said...

I know this question is geting bit boring now but I really would like to know if the uk researchers managed to get hold of the grants that they need yet or if there's anything us sufferers can do to speed things along?

Dec 18, 2016, 5:40:00 PM
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