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

When I was diagnosed with MND, the statistics presented to the public were, to put it bluntly, awful, very technical and confusing. Did they highlight the urgency of the disease? No.

The bare technical numbers for our disease are that about 2 or 3 in every 100,000 of population per year develop the disease. This is known as an incidence statistic, and as I will show it is a meaningless number, highly dangerous and should be confined to text books! It certainly should NEVER be used in the media!

Lets examine the incidence statistic…

  • 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: absolutely and categorically 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. Even professionals get it totally wrong!
  • Every year, each of us that remain unaffected still exists in the population. So our chance for a lifetime is cumulative. Tick, tick, tick…
  • In addition, your chances increase with age (there are peaks in your 50s and late 60s) – this is a staggered rise…
  • Virtually no one in their first 20 years develops the disease, but they do!
  • The population is always being fed with new born, thus lowering the yearly 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! That’s 3 children in each and every average school, sitting blissfully unaware, in the UK, that will develop the disease in their lifetime!

If you want to know more and see the detail, please read on, and if you want even more dramatic stats that emphasise the threat of this disease, skip straight to the UK Office of National Statistics section on death causes below. It’s brutal folks!

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

https://www.ncbi.nlm.nih.gov/pubmed/17219036

and

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

ONS OFFICIAL STATISTICS – England and Wales – CAUSES OF DEATH

I first wrote this page way back in 2015 and I 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 in 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 rather interesting explorable data link.

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

For 2019, the latest figures available, as of Sept 2020, the death rates are about the same, 1 in 266, with the rate under the age of 75 being 1 in 149 (slightly up on last year).

The death data is probably more indicative of the real chance of developing the disease as people are increasingly survive cancer and heart issues etc. But, even this death cause may even hide further cases or deaths from respiratory MND as they may be recorded simply as ‘pneumonia’ and so further understating the real risk.

For those who like graphics here are the last 10 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.

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