Alarming statistics - I'd like to talk through them

[gillebro]

Hi everyone,

Like many with HA on NMP, MND is probably my greatest fear. One thing that's provided me with great comfort since I found NMP is the statistic on that faithful sticky note, saying that incidences of ALS are roughly 2 in 100,000. I often chant to myself when I'm worried "1 in 50,000".

However an article popped up on my news feed last night about there being a link between vigorous exercise and MND (something I've suspected for years), and the article said that the lifetime risk of developing MND is roughly 1 in 400.

That... can't be true, right? MND is a devastating illness, probably one of the worst there is, and a 1 in 400 risk suggests it's twice as likely you'll get it as you will MS, and 3-4 times as likely you'll get it as Parkinson's. I know MND is talked about a lot more than these illnesses (or maybe I just notice it more, because Health Anxiety) but that doesn't mean it's more prevalent, surely?

What I'm hoping this stat is talking about is the lifetime risk of getting any sort of motor neuron issue, including non-fatal stuff (which would, logically, be more prevalent, right?), while the stat on the "ALS and why you DON'T have it" sticky refers specifically to the ALS that we all fear. Does anybody know more about these stats that is willing to share some of their knowledge? I know 1 in 400 still makes it pretty unlikely that I'll ever get it, but still... 1 in 50,000 sounds way better to me.

[Mikeyofboro]

Hi gillebro. I was thinking exactly the same thing this morning. As a fellow Brit that article on the BBC news is probably the last thing you want to read as I am suffering with HA. 1 in 400 freaked me out especially given at the moment I’m suffering from things like heavy and stiff legs. As someone who has played a huge amount of sport since a boy it was definitely something I didn’t want to read also . I clicked on the main publication but in all honestly couldn’t make head nor tail of it . If we have 70m people in the U.K. then does that mean that any one time there is 175k people living with mnd? A statistician or scientist would be most welcome here as I’m thinking of giving up exercising and enjoying a life of pizza and beer !😀

[gillebro]

Hey Mikey,

Yep yep, you know the article. I was reading it on the Guardian, but you know how they swap articles with each other sometimes.

The article also said 5000 or so people have it at the moment... so if you do the Maths that does equate to a lifetime risk of about 1 in 400. But it said MND, which I believe refers to a range of illnesses affecting the motor neurons, while ALS is more specifically what people like that ex rugby player, Rob something, have.

I must admit I'm currently a bit pleased that the only form of exercise I do is jogging several times a week... but I know that's also my HA talking.

[gillebro]

Also, if it helps at all, heavy and stiff legs are not an MND symptom. You can feel heaviness and stiffness, which is a good sign. With MND your legs would feel perfectly fine... you just wouldn't be able to lift one. You're ok.

[NoraB]

However an article popped up on my news feed last night about there being a link between vigorous exercise and MND (something I've suspected for years), and the article said that the lifetime risk of developing MND is roughly 1 in 400.

That... can't be true, right? MND is a devastating illness, probably one of the worst there is, and a 1 in 400 risk suggests it's twice as likely you'll get it as you will MS, and 3-4 times as likely you'll get it as Parkinson's. I know MND is talked about a lot more than these illnesses (or maybe I just notice it more, because Health Anxiety) but that doesn't mean it's more prevalent, surely?

Did you read the entire article?

They're saying that frequent strenuous exercise increases the risk of developing MND in some people who are genetically predisposed to developing the condition.

[gillebro]

Did you read the entire article?

They're saying that frequent strenuous exercise increases the risk of developing MND in some people who are genetically predisposed to developing the condition.

Yes, I did. And that part I understood. I'm certainly not going to drop my exercise routine or anything.

The bit that concerns me is the 1 in 400 stat. I suppose another question to ask is, does that stat just refer to people who are genetically predisposed?

[Kramze]

Yes, I did. And that part I understood. I'm certainly not going to drop my exercise routine or anything.

The bit that concerns me is the 1 in 400 stat. I suppose another question to ask is, does that stat just refer to people who are genetically predisposed?

Even if it weren't people who were genetically disposed we're talking 1 in 400 in a lifetime. I'm not sure what the average life expectancy is in Britain, but 1 in 400 is just 0,25%... And that's a lifetime, like 80 years? The chance of getting cancer during a lifetime much much higher... In fact, accounting for some types of cancer and adding up a whole human life of time, the chance of developing some type of cancer is more than 40% for males and 38 for females.

https://www.cancer.org/cancer/cancer...om-cancer.html

Results might vary based on environmental factors and 1000 of other factors of course, but the chances of getting MND is insanely low.

[gillebro]

Very true, Kramze. My partner pointed out that 1 in 400 are the stats for the worst formula 1 driver winning a race. Basically, not going to happen.

[NoraB]

Yes, I did. And that part I understood. I'm certainly not going to drop my exercise routine or anything.

The bit that concerns me is the 1 in 400 stat. I suppose another question to ask is, does that stat just refer to people who are genetically predisposed?

When it comes to stats, if that's the way you want to go - you just need to remember that 1 in 400 means uncommon.

All I know is that heart disease is the UK's leading cause of death. Unfortunately, many 'MND' HAers will misinterpret the article and stop exercising so I'm glad to hear that you are adopting a more sensible response!

You doing anything nice this weekend?

[gillebro]

I am a bit of a stats person, yeah. And I do hear "uncommon", but I was definitely far happier thinking "ultra-rare".

I think the reason why a lot of HA sufferers, myself included, aren't as bothered by the idea of heart disease is that it can, theoretically, be prevented and treated. ALS can't, really. At least, not yet.

As for the weekend, yes! I'm doing a test thing for a possible work promotion, then going for a run and spending time with my partner. Yourself?