This Is MS Multiple Sclerosis Knowledge & Support Community

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Bob,

Interesting, indeed!!

To prove how true that study was, Marg's death certificate stated "sepsis" as the primary cause of death and "pancreatitis" as the second. Nowhere on the certificate was MS mentioned !! Yet it was having MS for 37 years that provided the foundation for all these other problems to happen.

Thanks for posting that study.

Harry

This is all so lovely

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Are you serious that MS isn't even mentioned on her death certificate?

As serious as ever!

If that's true, and if that is a common situation, it makes me wonder how researchers are able to isolate data for studies like this one? Just compile the data from the few death certificates which do happen to mention MS as a factor, or maybe the medical field has some other way to identify MS related deaths?

Bob

I don't know if the data they acquire is all that accurate. It's only as good as the medical people write on the certificate so it makes you really wonder if another aspect of MS slips through the cracks!

Harry

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Thank you for totally depressing me

I take some comfort in the fact they don't mention treatments in any of the above.

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It's a bit of a catch 22 I guess, but if studies like this help convince people that MS research is an urgent need, then I am all for it.

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rainer wrote:It's a bit of a catch 22 I guess, but if studies like this help convince people that MS research is an urgent need, then I am all for it.

I've followed MS research over 4 decades. Because of the situation that Bob pointed out in regards to a lack of proper information about this disease, the funding for and general knowledge about MS compared to other disease groups is shockingly lacking. In the general population, MS is still felt to be a nuisance disease because it doesn't appear to kill its victims like cancer, stroke, heart attacks, etc etc. Well, many of us know differently. Trying to educate the general public is a very difficult task. And until this aspect of MS improves, the funding for research and progress in disease treatment will likely continue to be as slow as it has been for many years.

Harry

Public ignorance is truly astounding: I've lost count of the number of people who've said to me, "MS – that's a muscle wasting thing isn't it?"
The abstract itself actually seems to admit this shocking weakness of using death certificates: "… provides important information on the accuracy and utility of death certificates for epidemiological studies…"
I would have hoped that conditions like MS must be considered as a contributing factor when writing out a certificate: I mean, if someone walks unsteadily because of MS and trips and falls under a bus, the bus might be the immediate cause of death but surely the disease could not be ignored as the agency by which the accident happened? Oops, I forgot: we're talking common sense verses bureaucracy here, and we all know which one normally wins, don't we?

Although there are few doctors that list the cause of death as MS, there are probably even fewer people going through death certificates looking for causes of death.

Some people can't even get diagnosed while they are alive, let alone when they are dead.

There are over 400 neurological diseases, so I do not think the average person should be aware of exactly what MS is. I would have no clue about 95% of the diseases myself and don't care unless I know of someone with the disease.

gwa

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Hi gwa,
The public perception of science is woefully inadequate and I wouldn't expect everyone to have a detailed understanding about what MS is, but we are repeatedly told that MS is the most common cause of neurological disability in young people. As such, I feel that MS should be as high profile as cancer, Alzheimer's, stroke and Parkinson's disease, of which people seem to have at least a broad awareness.
I've moaned before about funding, suggesting that only when governments realise the vast cost of MS to a nation's coffers will they see that state funding for research will save a fortune in the long run, but many studies have been done and the cold, hard, enormous figures have been published, and even they don't seem to have had much impact,