caromawer 27/03/18
Last reply 3 weeks ago
People with MS dying on average age 66

What does Shift MS think about this weeks BMJ report that people with MS die, on average, age 66?
See : Figure 5 in https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/683998/Deaths_associated_with_neurological_conditions_data_briefing.pdf
I had been told that death occurred ‘a few years earlier’ than in the general population.
66 is not ‘a few years’ earlier!
This is much worse than for other neurological conditions : “The mean age of death among people with a neurological disorder was 74—four years less than the mean age of death from all causes”
I’m going to read the full report – its at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/683860/Deaths_associated_with_neurological_conditions_data_analysis_report.pdf
I especially want to see if there is any time trend data
But this does raise very significant issues for me
Including about the DMARDs – which I’ve avoided taking for 30 years.
Are they disease modifying, but not death modifying?
Or would it be / is it even worse without them?

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stumbler
3 weeks ago

@caromawer , It’s said, there are “lies, bloody lies and statistics” and this is just another statistic.

Yes, it does quote the “mean” age of death of someone with MS is 66. But it also says that that the percentage of deaths of someone with MS under the age of 75 is 73%. So, a quarter of us are still going to be here after 75.

And, this is all historical data. What’s happened before may not be what will happen tomorrow. The human race is constantly evolving, learning more and living better (if we avoid obesity!).

Back 20 years ago, being diagnosed with HIV was a death sentence. I know someone affected by that and he’s just picked up his State Pension last year!

Am I worried? Not in the slightest, and I’ve only got four years left! Well, I won’t have to worry what I’m going to spend my State Pension on! You can use it to help pay off the UK’s deficit. 😉


edmontonalberta
3 weeks ago

Thanks for my morning chuckle Caroline.

In Britain, the average age of death for those born in 1981 is “expected to be” 80+ for women & 76 for men. Your first link shows the mean age of death for those with “traumatic brain and spine injury” is 75. Those with Parkinson’s is 82.

As stumber suggested, “Lies, Damn lies and statistics”…


sciencegeek
3 weeks ago

The most recent research suggests that MS reduces life expencatncy by 6-12 years. But like Stumbler said, this is based on a cohort who did not have access to the treatments that we now have and who were, on average, diagnosed later and supported less well through life.

Current thinking is that MS shouldn’t limit your lifespan by more than a few years, but it can limit your healthspan more dramatically.

Time to put your life into perspective and look to the future with an attitude of seizing the day. Do stuff now if it’s important to you, in case putting it off means never doing it at all.

Onwards and upwards!


hank
3 weeks ago

well said stumbler , especially as i am 66 this year !!


potter
3 weeks ago

I am also turning 66 this year, I am still walking and talking. It is a good thing I planned our vacation to Yellowstone National Park this year in September not October when I turn 66. One of my aunts who had MS died a couple of years ago at the age of 75. She died of cancer not MS. Potter


merfield
3 weeks ago

I’ll be 79 this year….. Xx


affibelle
3 weeks ago

I’m with @stumbler on this one! We could get run over by a bus tomorrow etc so why worry? My take on life is “only take what you need & look after what you’ve been given”. If you live life by excesses & don’t look after your body then an early grave is what we all have coming whether we have MS or not. Go outside, spend more time with nature, eat healthily & exercise. Reduce your stress by mindfulness/meditation. Also like Billy Connelly said ” You’ll extend your life by a fortnight if you eat brown bread instead of white but those 2 weeks aren’t when you’re at your most virile in yr 20s…it’s when your on your last legs in a nursing home and someone else is wiping your a**e!” LOL Its not worth stressing about X


californiadreamin
3 weeks ago

There are three things that skew the averages on MS lifespans and they are largely avoidable.

1) One is a sad fact on suicide. The rates are higher then one would expect and its possibly related to depression left untreated. This if included in the

2) Other “normal” health problems often left ignored. Everyone with MS will eventually have something else that happens to them like anyone else. The question is if it will be attributed to MS and ignored longer then someone without MS.

3) Disability limits exercise which has been demonstrated to have a very large impact on both lifespan and healthspan. The amazing thing on exercise is not how much you do, but that you do something. One reason is because exercise essentially damages the body and the healing process helps rebuild it. Its triggering that process that results in the most benefit and thats why its important to push yourself at whatever capability you are at.


tracyd
3 weeks ago

Statistics can be made to represent pretty much any version of events you want them too.

In my immediate family my Dad died at 62, my Mum died at 66, my younger brother died at 40 – that could say the average age of death in my family is 56 ….. – so in all likelihood I have a decade left

Mum and Dad both died of cancers, my brother from multiple organ failures – so 66% chance of cancer too then

Nobody had MS …. so adding me into the mix the likelihood of MS is 25% in our family – expended family blood relatives – all of them and I’m the only one – if I include the 200 or so I’m aware of in Canada that brings it down to 0.5%

Stats can be made to represent whatever story you want to tell

100% of statisticians are manipulators of data 🙂 xxx

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