United protest against grant refusal for research 19 July

[malory]

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.

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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! Let's make this an international effort

[malory]

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.



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(If we knew more about the micro-organisms causing odour problems then it could perhaps become possible to eliminate them. I know that my odour has been temporarily reduced (for 1 or 2 days only) when I've eliminated all grains and gluten. However, the effect doesn't last even if I continue to eliminate grains so the bacteria I harbour must thrive on carbohydrates but then find another food source if that becomes unavailable. Parasitic organisms such as amoeba and blastocystis will feed on the body's haemoglobin if the carbohydrate food source is removed. If we could identify the food sources of the anaerobic microorganisms invading our intestines, eliminate their food sources and then attack them with ozone or some kind of antibiotic, would we be in with a chance of reducing them? WE NEED RESEARCH TO FIND OUT!)

[deebo]

Hi Mal .

It might be helpful for us to know the grounds for their refusal to the grant .

This is very interesting idea about bacteria adapting after a few days off carbs . There are quite a few trials going on for "bacteriotherapy" ,mostly in Canada . Wonder if they'd have any correlative info to share with us for malodor issues like tmau and others . Theres a really intriguing one on 'synthetic stool' http://clinicaltrials.gov/ct2/show/NCT0 ... ce&rank=11 .


hopemovo.org

[deebo]

Sent My E-Mails out !

Folks , even if you live in the US or where ever in the world , Please join us in this emailing action . This is No only for TMAU ,but for All breath and Body odor research . Feel free to copy and paste or edit whats below in your own email .

Hello ,
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 other 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 conditions.

Thank you very much for your consideration on this important matter .
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to these email addresses
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[ThisSucks]

I will send those mails after I come back from work.