Sheffield Test Result Survey

help with getting a diagnosis

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Sheffield Test Result Survey

Postby PoetFire » Thu Feb 01, 2018 3:37 pm

I created a quick google survey

Anyone who has TMAU tested via SHEFFIELD can submit.
UK or any country (as long as SHEFFIELD).
This will be testers via UCL, any UK NHS service, any who bought privately in UK (please check).

https://goo.gl/FeBLaZ
(will redirect to longform url)

Aim is to see if there is a stark trend difference between :
Old test results : pre-2017 ?
New test results : post 2016

Hope to create some charts and stuff (if I can)
PoetFire
 
Posts: 322
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Re: Sheffield Test Result Survey

Postby sweatybetty » Wed Feb 14, 2018 1:06 pm

Hi Poetfire

I will log my results in shortly. I am also going to assign myself a random code number as I think it is important to see the evolution of the test results in particular cases: in my case I had 8 abnormal tests under the old testing regime. Under the new testing regime my 2 tests thus far have come back within normal range although my diet has been less relaxed. It could, of course be that my FMO3 function has improved but I doubt that.

It is so confusing as the initial guidance re the test was that the measurement was being set lower, i.e. it should be capturing more of those who previously presented with TMAU readings that didn't quite meet the baseline set by Nigel Manning. On the anecdata so far the experience of many of the existing patient group (the best comparator of the validity of the revised test) is that they are testing normal even though under the old style test they had a TMAU diagnosis.

I think it is essential to understand what is being done differently about this revised test and to get the data to establish that there is an issue with the test. Whilst for this patient group a test is better than no test as it gives access to help it is a worry if, based on the group experience many TMAU + people are now testing normal, it may mean that new referrrals are being incorrectly screened out.


sweatybetty
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Re: Sheffield Test Result Survey

Postby PoetFire » Wed Feb 14, 2018 6:39 pm

thanks

I have 15 responses so far.
Might be a bit trickier to make graphs than I thought.
The new test doesn't seem to be the same style of layout.
I will give it a go later.
PoetFire
 
Posts: 322
Joined: Fri Jan 15, 2010 10:23 am

Re: Sheffield Test Result Survey

Postby sweatybetty » Thu Feb 15, 2018 12:41 pm

PoetFire wrote:thanks

I have 15 responses so far.
Might be a bit trickier to make graphs than I thought.
The new test doesn't seem to be the same style of layout.
I will give it a go later.



My 8 results should be in now - I completely understand that it will be tricky trying to graph to different measurement systems. Possibly just graph the old style tests and then have a qualititative comment box saying these cases are now receiving normal results???

sweatybetty
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Re: Sheffield Test Result Survey

Postby PoetFire » Fri Feb 16, 2018 8:58 am

Thanks.
I guess your results are the best evidence as all your 'Nigel' results were +ve, and the new test -ve.

I thought I could 'auto' make graphs with the data,
but I will need to look around for a 3rd party app and type the data in.
Also some may not have put the data in as I hoped (nobodies fault), so could be a bit of a math task :)
PoetFire
 
Posts: 322
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Re: Sheffield Test Result Survey

Postby sweatybetty » Fri Feb 16, 2018 9:30 am

Hi Poetfire

I'm probably old school and have calculated and graphed my TMAU analysis in an excel spreadsheet. :geek:

There is very little data available - the most rigorous analysis was Nigel's plot analysis of over 7 years ago. I have posted on the "Read it Here" board about hoping the scientists coming to the meeting provide some answers and data on what is going on with the test.

This lack of evidence /data is frustrating: this condition is a difficult one both in the challenges for people to arrive at a point of diagnosis and then for people to treat the condition with the awareness, sensitivity and understanding those impacted deserve. I used to work as a senior Big 4 consultant so my approach is very much getting the robust and evidenced data to support statements. Like others I have been raising the lack of data both in the context of the *revised* test and also in trying to build awarenss for quite a long time.

Very concerning that new referrals may be left without help if the *revised* test for some reason is finding most people to be negative.
sweatybetty
 
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Re: Sheffield Test Result Survey

Postby PoetFire » Fri Feb 16, 2018 9:44 am

Yes I'm amazed that the data is not public already for many years.
I wonder if its the same for all gene disorders ?
I presume e.g. cystic fibrosis, they make the data public (but maybe not).
It would seem natural for a country to know whats going on.
Or perhaps we could be a template for all disorders.
By no public info, it keeps it in the dark.

metbio seems to be their (voluntary) UK union.
I have wrote them previous but not very receptive.
http://www.metbio.net/metbioHome.asp
PoetFire
 
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Re: Sheffield Test Result Survey

Postby PoetFire » Fri Feb 16, 2018 8:45 pm

Hi Betty

Are you sure your last 2 results were the new test ?
I think the machine broke around Nov 2016.
Anything earlier would be the old test.

edit : I see now you said you tested 10 times.
so the survey must be your 8 'old' tests.
PoetFire
 
Posts: 322
Joined: Fri Jan 15, 2010 10:23 am

Re: Sheffield Test Result Survey

Postby PoetFire » Sat Feb 17, 2018 10:23 am

currently I have only 1 viable NEW test result.
so I need to wait til I get some NEW test results to show a difference (if any)
PoetFire
 
Posts: 322
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Re: Sheffield Test Result Survey

Postby dave » Sat Feb 17, 2018 8:47 pm

I recently shared my test result with one of the moderators on rareconnect.
I was tested in September 2017 and finally got a copy of the result two weeks ago, so I'm definitely in the new test category. My test came back "Normal".
I only wish "Normal" can describe what I go through on a daily basis.
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