I will not reproduce well known key facts on my blog. I will always refer to my recommended sites. Take a look at my favourite sites. I will, however, make specific comments where I feel I would like to promote discussion or warrant further explanation.

For a good brief on Motor Neurone Disease please see “What is MND?” , the Motor Neurone Disease Association website in the UK.

Top of my list for discussion and awareness are MND statistics and their use. It is the reason for the naming of this blog.

The bare numbers for MND are that about 2 in every 100,000 of population per year develop the disease.

Lets examine this statement.

  • This fact is a fact i.e. accurate.
  • However, does it tell the real story and is it the most powerful and appropriate figure that should be used when trying to raise awareness of the disease? – Answer NO.

Why?

  • What it means, is that for every 100,000 of population, every year, 2 people are diagnosed.
  • The fact is almost always incorrectly quoted and misunderstood as 2 in 100000 people will get the disease – WRONG. Take a look at Colin Pritchard’s article in the Guardian to see the mistake in action.
  • Every year, each of us unaffected still exists in the population. So our chance for a lifetime is cumulative.
  • In addition, your chances increase with age (there are peaks in your 50s and late 60s).
  • Virtually no one in their first 20 years develops the disease.
  • The population is always being fed with new born, thus lowering incidence numbers.
  • All other major diseases today are expressed as a lifetime risk and not incidence statistics.

So what is my point here?

Your lifetime risk, i.e. the real risk of developing MND in your life, is estimated at about 1 in 300!!!!

WOW that is scary!

If you want to know more and see the detail, please read on, and if you want even more dramatic stats skip straight to the UK Office of National Statistics on death causes.

The following peer reviewed papers provide the core evidence, and are developed from several population studies.

http://www.ojrd.com/content/4/1/3#B12

and

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093130/#!po=47.2222

ONS OFFICIAL STATISTICS – CAUSES OF DEATH

I first wrote this page back in 2015 and referred to the following ONS data for 2013 deaths.

http://www.ons.gov.uk/ons/rel/vsob1/mortality-statistics–deaths-registered-in-england-and-wales–series-dr-/2013/dr-table5-2013.xls

and 2014 deaths:

http://www.ons.gov.uk/ons/rel/vsob1/death-reg-sum-tables/2014/rft-deaths-summary-tables-2014.xls

Simple analysis of these datasets showed that for 2014 the chance of a death being caused by MND was 1/278 and for deaths under the age of 75 the chance was 1 in 155!

Up to date data can now be obtained from this explorable data link. It’s an interesting utility.

https://www.nomisweb.co.uk/query/construct/summary.asp?mode=construct&version=0&dataset=161

For 2017, the latest data, the death rate is about the same, 1 in 279. And the death rate under 75 is slightly higher at 1 in 147!!

The death data is probably more indicative of the real chance, ie about 1/280. But remember, death cause may even hide further cases or deaths from respiratory MND cases as they may be recorded simply as pneumonia so further understating the real risk.

For those who like graphics here are the last 8 years of data showing the deaths per age group:

6 thoughts

  1. I think there are sme other powerful comparisons you can get from this data. Transport accidents killed 1849 people in 2014 while MND killed 1,810 – so your chance of being killed every year in a train crash or car crash is the same as your chance of death from MND. We will spend a forture to avoid a fatality in a train crash, but no where near as much for MND?

    In 2014 breast cancer killed 10,158 people , so a disease we really worry about and spend a lot of effort on [only] killed 6 times as many people per year as MND – so we should worry about them both.

    I also notice, as an MS sufferer myself, that MND killed about twice as many people as MS in 2014. We consider MS a moderatley common disease and everyone I meet knows someone else who has it.

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    1. James, yes I agree entirely. Statistics are vital. If you look closely at funding in relation to some of these figures, it is breathtaking. Why is this? It’s awareness. When a disease is seen as rare purely because of the least appropriate stats being used, this is the result. Using lifetime stats, like cancer, really drives it home. Please share my blog. I try to make it entertaining. Lee

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  2. The more I’m reading your blog, the more excellent I realise it is. Where are you based? My close friend and I are doing a series of photos of people who have a connection with MND on http://twentysixmiles.co.uk/ I’m in the West Midlands and Cristian (the pro photographer) is in Cambridgeshire. We are travelling around to get the shots and interviews. We need to get them done by beginning / mid November as Cristian is running a marathon as the climax of the campaign in late November and we are “publishing” 1 portrait a day in 26 days leading to the marathon. It would be nice to include you as an example of someone blogging their experiences and educating people. Let me know if you are interested. Thanks. Miles.

    Liked by 1 person

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