TMAU UCL Support Group Meetings

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TMAU UCL Support Group Meetings

Postby sweatybetty » Thu Feb 15, 2018 3:00 pm

The next TMAU support group meeting for patients of UCL/Dr Lachmann is Thursday 1st March 2018 from 4-6pm at UCL.

This is an important meeting for the patient group as the Sheffield scientists who run the TMAU testing will be attending.

I have sent an email (body text copied below) to the dieticians with a few of the questions I would like to ask the Sheffield scientists.

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Many thanks to the UCL dieticians team for organising the TMAU patient support group meeting. I look forward to being able to discuss the revised TMAU test with Joanne Croft and Edwin Smith.

I have sent through a few prospective questions I plan to ask at the meeting. Would you mind forwarding my email to the scientists as it may be more helpful for them to see the questions in advance rather than my asking something they couldn’t answer on the day.

1. What proportion/numbers of urine tests for TMAU are now returning a negative result compared to the proportion testing negative on the previous test used by Nigel Manning? Based on “annecdata” /discussion within the forum and TMAU groups many people who tested positive are now testing negative. What might be the explanation for this if other factors remain the same?

2. Was there any parallel testing of the new test with the old test to ensure that patients testing positive under the old test were also being captured (ceteris paribus) as TMAU positive tests under the new system? Based on the information from Sheffield on the introduction of the new test it was my understanding that the TMAU thresholds were being set more conservatively and should therefore be capturing more TMAU positive results. Again based on “annecdata” this does not seem to be the case and fewer of us are receiving positive results.

3. Are samples from old tests stored? If so, given that there are some concerns from the patient group about the anecdotally high number of negative tests would it be possible to re-run old samples of specific cases, i.e. individuals who may have a few years of positive tests under the Manning test system, through the new test to see how the tests results compare? Conversely would it be possible to test a sample of the post 2017 tests using the old style Nigel Manning test?

4. Are the samples and tests benchmarked to other European /International laboratories? If so, would it be possible to send a certain number of urine samples to labs in the US and Europe and see whether they return the same/similar TMAU result as the new Sheffield test?

My personal experience is that even reaching the point of a diagnosis for odour issues is challenging: most GPs have never heard of the condition and some are dismissive. Even if you are offered a test there is the complication that it is a fluctuating condition and you may test at a point where the odour is not so significant. The diagnosis was devastating for me but at least I had answers and an explanation. I had eight abnormal tests pre 2017.

I would volunteer my own results as a trial sample should the Sheffield scientists wish to consider parallel testing a case sample that previously had a track record of positive results.

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I hope it is a good turnout and a focussed discussion as would really like to understand why the new test is now saying I don't have TMAU when as far as I personally experience it and based on over two years of previous test I do have TMAU. :roll:
Last edited by sweatybetty on Thu Aug 23, 2018 9:55 am, edited 1 time in total.
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Re: TMAU UCL Support Group Meetings

Postby dave » Sat Feb 17, 2018 8:40 pm

I do hope an explanation will be provided by the scientist attending the meeting. I am one of the unfortunate ones who haven't struggle to get tested only for it to return normal. I shared the result with a forum membe on rareconnect, who is quite familiar with the old test system and the new. Even this person had to admit hat the test result does not make any sense when compared to the previous test format.
The challenge for people like myself who have only recently discovered we are dealing with this debilitating disease is that the normal test result means we cannot access any help. Even Dr. Lachmann and his team will only see those with a positive test result.
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Re: TMAU UCL Support Group Meetings

Postby malory » Wed Mar 21, 2018 11:24 pm

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