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Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.
who is the survey intended for ?
UK residents who identify with TMAU
Living with TMAU study
We invite you to participate in a research project entitled ‘Living with TMAU’.
click to visit survey
survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/
Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.
For individuals with TMAU over the age of 18
For a parent or guardian of a child with TMAU.
The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.
To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.
The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.
4 comments:
After all these years I dont understand why their isn’t better treatment options laid out on the table. This condition is destroying people’s llives, people I hear and talk to daily are contemplating suicide as the only way out. There has to be better treatments that’s not being discussed at this time. People are suffering in silence and no one seems to care because it’s not life threatening, but so many people wants to end thei lives because of it...We definitely need help, and we need it fast.
I have been taking resveratrol from Mega Resveratrol after trying everything else. Recently Dermetel, a student organization in the United States, offered pure DMB for sale on Amazon. I thought, if DMB is available to them, why not see if Mega Resveratrol could add extra DMB to some of its product, and offer it for sale to TMAU sufferers? (They have already offered resveratrol enhancers, so they might be interested in this.)
Other potentially interested companies might be Yerba Buena, producers of Odor Cleanse, and Dermetel, who might want to try again. I think they found that pure DMB is too volatile to be sent by mail, but perhaps if it is mixed with pure resveratrol, it would be acceptable to the post office.
This would be an avenue to pursue, wouldn't it?
Still no update yet ?
A new update post will be done.
It will be an approved version of the update.
Also, new news ... they have applied for a grant from the trust, but it probably won't be until February until the request is reviewed.