United protest against grant refusal 19 July

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United protest against grant refusal 19 July

Postby malory » Fri Jul 13, 2012 12:52 pm

The UK specialists had their grant application turned down by the Medical Research Council. The grant was to fund research into the specific intestinal bacteria found in TMAU/odour suffering patients and would have encouraged greater interest in the possibility of fecal bacteriotherapy/human probiotic infusion as a treatment for odour disorders. (We know fecal bacteriotherapy is already being used for clostridium difficil and ulcerative colitis. I was interested to learn about the Scottish doctor on Embarrassing Illnesses).

Anyway, the MRC did show some former interest in TMAU/odour during a former UK raising awareness campaign. It is about time then that we remind them of our presence and object to their denying us a grant.

ON 19th July (or near to that date) can everyone e-mail


I will write something like the following and also send a written letter:
I was very disappointed to learn that the grant application for research into the intestinal bacteria of TMAU patients and patient with foul-odour-producing metabolic disorders was refused. As you are aware from former raising awareness campaigns, TMAU and odour disorders are incredibly distressing conditions with no effective treatment available. The number of sufferers is ever-increasing and the number of children being diagnosed is also increasing. I would like to urge you to reconsider this erroneous decision and to allow the specialists to research into the condition.

linda.willmott@headoffice.mrc.ac.uk

corporate@headoffice.mrc.ac.uk

felicia.rodriguez@headoffice.mrc.ac.uk

PLEASE PARTICIPATE! It will take a few minutes. Some people from the Italian odour forum have already pledged their support. If they can manage to take the time to write in English, then I'm sure we can! :)
malory
 
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Location: London -west

Re: United protest against grant refusal 19 July

Postby malory » Fri Jul 13, 2012 3:26 pm

I've found some new contacts at the MRC; it is important to e-mail as many people as possible in the same organisation. I'll send a slightly different message to these new contacts. If anyone would like to send an attachment with their e-mail with an account of their experiences living with an odour disorder then that would be very effective.

I was extremely disappointed to learn that the grant application for research into the intestinal bacteria of TMAU (Trimethylaminuria) patients and patients with foul-odour-producing metabolic disorders was turned down by the Medical Research Council. This research could have led to the identification of the specific types of bacteria present in the guts of odour sufferers and to the possibility of using fecal bacteriotheraphy/human probiotic infusion as a treatment therapy.

TMAU and other foul-odour-producing disorders are incredibly distressing conditions and, for many, there are no truly effective treatments available. The number of sufferers is ever-increasing and the number of children being diagnosed is also increasing. I would like to urge you to reconsider this erroneous decision and to allow the specialists to research into potential cures and treatments for the condition of Trimethylaminuria as a matter of urgency.



GPSD@headoffice.mrc.ac.uk
GrantsPostAward@ssc.rcuk.ac.uk
grants@headoffice.mrc.ac.uk
GrantsMRC@ssc.rcuk.ac.uk
Claire.Wyllie@headoffice.mrc.ac.uk
Rebecca.Hodges@headoffice.mrc.ac.uk

grants@headoffice.mrc.ac.uk

amt@headoffice.mrc.ac.uk
malory
 
Posts: 197
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Location: London -west

Re: United protest against grant refusal 19 July

Postby kittycat » Wed Jul 18, 2012 6:18 pm

Hi Malory...I thought you might not feel so alone, if you knew that sufferers on the Facebook site are intending to join you in this important emailing campaign 8-) ... and a poster on the yahoo site was wondering what other people are writing....I thought I'd post my letter to encourage anyone on this site.....It doesn't have to be long, or perfectly written... :?

I ask you to please reconsider your decision, to refuse the grant, funding research of intestinal bacteria found in Tmau/odour conditions.
This research is vital to find a cure for these life destroying conditions, which cause much personal under-achievement, psychological suffering, and social rejection.
NHS funds would be better used to research a cure, than being used on GP visits, specialist referrals, CBT, regular antibiotic therapy, and supporting sufferers unable to work, or study...
The information collected could also be added to that already known about the importance of gut flora to good health.

I will also be attaching my own testimonial of the effect that Tmau has had on my life...

If anyone wants any help with this campaign, please contact me...We need research, and a cure... kittycatx
kittycat
 
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