TB Meningitis Research Question: Hi all This... - Meningitis Now

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TB Meningitis Research Question

Mads1975 profile image
4 Replies

Hi all

This afternoon I travelled to London to meet a researcher from Liverpool University who wished to interview me in relation to a new pair being written in relation to TB meningitis.

I was already in London for a hospital appointment at St Mary's so was able to kill two birds with one stone.

The interview was essentially finding out about the symptoms that appeared, the timeline and the medical professionals that I saw in the period before I was diagnosed.

At the end the researcher asked me if I had a budget of £1 million to spend on TB meningitis research how would I spend it.

My first thought was that a non invasive, accurate test with fast results would be the optimal choice but would cost far in excess of £1m to achieve. Therefore I said that it should be spent on setting up a system whereby people that are diagnosed are signposted to appropriate services, that in turn are actually available!

I wondered if anybody else has any other thoughts on what they feel is the priorities for spending? I could forward peoples views on to the researcher to aid with the research.

Many thanks

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Mads1975 profile image
Mads1975
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4 Replies
ingridm profile image
ingridm

I think that GP's should be trained more on the symptoms.. If I had listened to my Dr my daughter would have died... She contraced Bacterial Meningitis and I visited the GP on more than once concerned about her being Ill they turned me away twice and the third time the GP were not taking any more appointments so I eventually drove her to A&E myself... I am not a mother who lives at the Dr if my children are sick.... I was not listened to or looked after at the GP and I eventually got help but if I had waited 12 hours more she would have died.... If a mother goes to the Dr and say's she needs help her daughter is sick SOMEONE should take notice...

daddysadvocate profile image
daddysadvocate

This is a very interesting question. I would like to see funds allocated toward three goals: 1) a test that can provide a rapid diagnosis, 2) general education, and 3) new medicines that respond faster than the current regimen with less toxicity. One of the scariest things about TB Meningitis is that the initial symptoms can be attributed to several other non-serious conditions. My father went to several doctors complaining of his symptoms, and each time, he was given a "band-aid" solution and sent home. Because timeliness is a huge factor in combating this diagnosis, physicians need a quick testing method that provides an accurate result, and both physicians and the general public should be made aware of the symptoms of TB Meningitis.

Mads1975 profile image
Mads1975 in reply todaddysadvocate

The study that I have been invited is looking at creating a way of being able to diagnose TBM as soon as a patient is admitted to hospital. I was at a meeting on Monday in which an algorithm has been created that defines TBM if a certain score is achieved against a number of markers. This I believe, would provide doctors with a greater confidence in diagnosing TBM as opposed to the quandary they find themselves in today.

daddysadvocate profile image
daddysadvocate

Sounds promising! Considering that time is indeed of the essence when it comes to diagnosing TBM, this would be a huge leap in the right direction!

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