Another call to arms

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Another call to arms

Postby malory » Sat Nov 05, 2011 2:25 pm

Thank you to all those who support initiatives, however small, to raise awareness. Sometimes we are disappointed and rebuffed but we should never give up. We have had encouraging news from the DUETS so now we're ready for the next step.

Our next venture will be to target the British NPSA led by Sir Liam Donaldson (former Chief Medical Officer in the UK) who, Kitty kindly pointed out, has expressed concern at the overuse of antibiotics.
The NPSA consists of:

National Research Ethics Service which protects the wellbeing of research patients within the NHS and
National Reporting and Learning Service which aims to reduce risks to patients receiving NHS care.

With this in mind, our slant should be about concerns regarding the TMAU treatment protocol itself and the need for further research to be carried out. Obviously, we are not criticising the doctors who treat us or expressing distrust in them. We are merely raising questions about the treatment with a view to instigating further research.

Even if you manage your symptoms safely, consider the young child/teenager who:
a) will wander around undiagnosed for who knows how long, thus risking their mental health
b) when/if diagnosed with TMAU, will be more susceptible to restricting their diet to an exaggerated degree thus causing damage to the body.
c) will need to take repeated antibiotics for the duration of his/her life (70+ years!!)

Knowing that Sir Liam will be sympathetic to our overusing strong antibiotics such as flagyl/metronidazole and Neomycin, I suggest we raise these concerns. I also think we should mention the risk of suicide/mental illness in those individuals whose doctors are unaware of bloodbourne/systemic breath/body odour conditions and, not only fail to diagnose TMAU, but insist their patients have halitophobia/olfactory reference syndrome etc..I also think we should mention the fact that restricted choline intake can lead to a nutritionally deficient diet which can cause irreversible damage to people's bodies - osteoporosis and the like.
SO, ON 28TH NOVEMBER, AS WE ENTER THE SEASON OF GOODWILL TO ALL, LET'S E-MAIL OUR CONCERNS ABOUT THE TMAU TREATMENT PROTOCOL AND EXPRESS THE NEED FOR FURTHER RESEARCH AND AWARENESS.

The address is: queries@nres.npsa.nhs.uk
Letters to : Sir Liam Donaldson, NPSA, 4-8 Maple street, London W1T 5HD.

(Anyone is welcome to join the campaign, regardless of tmau diagnosis or not. We use the TMAU treatment protocol as a starting point but any research/awareness which results will affect all malodour sufferers.)
If you would like me to send your letter together with some I already have, as a group, please PM me for e-mail address.
malory
 
Posts: 197
Joined: Fri Nov 26, 2010 1:16 pm
Location: London -west

Re: Another call to arms

Postby malory » Thu Nov 24, 2011 3:01 pm

thank you to all those of you who e-mailed me to tell me of your support for this initiative.
a collective effort always has a greater effect! :D

Remember to watch Food hospital on Tuesday 29th channel 4 at 8pm. well done El for your frankness. i saw the episode this week with a snippet of you. Can't wait to see the full programme.
malory
 
Posts: 197
Joined: Fri Nov 26, 2010 1:16 pm
Location: London -west

Re: Another call to arms

Postby malory » Wed Nov 30, 2011 11:04 am

I have spent all morning writing about you on more than one site, Ellie and I never tire of it. Fantastic job. thank you and you were well worth waiting for. My mum has recorded the programme for me and I'm sure some clever person will be able to put a link to it on the sites (sorry, that clever person is not me but I will try!) so that all odour sufferers everywhere can appreciate how you have made incredible progress for our cause with your tv appearance.
malory
 
Posts: 197
Joined: Fri Nov 26, 2010 1:16 pm
Location: London -west


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