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CFS/ME needs to go viral.

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
One thing i was taught in speech class (note: my speech teacher told me to focus on writing ;) ) was that in a persuasive speech or anything of the sort, was to avoid, as much as possible, mentioning negative sterotypes, misinformation, or anything else you didn't want people to remember.

Even if you consciously correct it, and say it is wrong, people will remember wrong things. Often this is the only part they will remember (and not the good information you wanted them to know).

So while I find the idea of presenting wrong info to get people's attention intriguing, in the end I agree with those saying to avoid it.
 

Aileen

Senior Member
Messages
615
Location
Canada
I've been mulling over the whole ice bucket challenge a bit. I think some of the reasons why it caught on is because (in no particular order):

1. entertainment. It's funny seeing people's reactions to having freezing cold water dumped on them (especially celebrities or people you know.)

2. there is a challenge involved. You can put someone else in the position of having to do it -- a grown-up version of a dare but for a good cause.

3. Action oriented. It gets people to do something (other than donate).

It has the "fun factor" even though the cause is very serious.

Actually, I doubt that the particular charity even matters at all to most people who have taken part. It seems that people are bored, have an insatiable need to do something different and silly and fun and are running out of toys to play with. It's all about having fun.

In other words, it is all about them. The charity is like the fine print no one reads. A few years from now, people will remember the challenge but not charity it was for. The challenge was the focus, the little bit about ALS and where to donate was just an add-on at the end.

The key take away for me: fun, dare, social media. Forget the message, focus on the action.
 

Aileen

Senior Member
Messages
615
Location
Canada
Speaking of fun, since we need to think outside the box, why don't we try the one of following exercises to get the creative juices flowing.

a) a twist on the olympics. adapt an olympic event to mimic what an PWME feels like. For example, the 100m sprint with the athletes chest deep in mud.

b) design a "roadblock" for the tv show The Amazing Race. It has to get across how it would feel to have some symptom of ME. People really enjoy this show, and here in Canada, communities have made it into a one day local event.

With this much interest, maybe the idea of people racing to do some silly challenge, which would be filmed like the ice bucket challenge. Just add the "time" factor. Who can do it the fastest?
 

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
The 100m sprint in mud is a beautiful idea as it combines fun with a striking image. But it could be tough to organise.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
The 100m sprint in mud is a beautiful idea as it combines fun with a striking image. But it could be tough to organise.
Mmmm thinking about the point above (making it funny) perhaps we could combined the 'unexpected' and 'fun' with the mud? I am sure there has to be a good concept that combines all three very effectively....
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
mm that is one point - lack of stamina is the key issue, but what results is exhaustion, not fatigue...
Well, theoretically it would not result in exhaustion if we could pace ourselves properly. But the lack of stamina would still be there just waiting for us to try to do a little too much.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Late edit: no, the car should look perfectly normal, until it comes to operate anything like wiper, indicators, heater etc.
How about:
Driver is driving along and turns on radio. Car slows down. Driver floors the accelerator to no effect.
It starts to rain. Driver turns on windshield wipers. Radio goes off.
Windshield starts to fog. Driver turns on defogger. Wipers go off.
Driver turns on wipers again and defogger goes off. Driver uses handkerchief to clear fog from windshield as she drives.
Driver becomes cold. Driver turns on heat. Wipers go off. Driver turns on wipers. Heat goes off. Driver collapses and car sputters to a halt.
 
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Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
Instead of the mud race, I guess you could have a water race, where competitors are to run across the shallow end of a pool (6 lane? 10 lane?) in water that comes a hand's width above their waist, and where they must keep their hands above water at all time. They could post their times. Just hoping this will spark off another good idea from someone.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
How about:
Driver is driving along and turns on radio. Car slows down. Driver floors the accelerator to no effect.
It starts to rain. Driver turns on windshield wipers. Radio goes off.
Windshield starts to fog. Driver turns on defogger. Wipers go off.
Driver turns on wipers again and defogger goes off. Driver uses handkerchief to clear fog from windshield as she drives.
Driver becomes cold. Driver turns on heat. Wipers go off. Driver turns on wipers. Heat goes off. Driver collapses and car sputters to a halt.
People with ME would get what that meant, but would the general public? I like the concept for people WITH me, less sure about people who are clueless?
 

Snowdrop

Rebel without a biscuit
Messages
2,933
How about participants showing up in front of camera wearing lycra (like a racing cyclist would wear) and the ME sponsor has an outfit for them to put on in front of the camera. It would have to fit them enough so they can get into it but it could be challenging and perhaps timed. I'm thinking outrageous and layers combining a snorkel with tutu with big fuzzy bunny slippers, a wig maybe etc. Each participant gets a different outfit to keep it fresh. :woot:

Oh, and before they start they should read a brief message in support of ME.
 

Aileen

Senior Member
Messages
615
Location
Canada
How about participants showing up in front of camera wearing lycra (like a racing cyclist would wear) and the ME sponsor has an outfit for them to put on in front of the camera.

Oh, and before they start they should read a brief message in support of ME.
The problem with this is that it is the ME patients who would be the participants. That may be a great concept for a small local event. Very creative and could be a lot of fun. Something kids might have a good time with?

If you want a campaign to go viral though, you need to have something very simple that the general public can do without much preparation. We want donations from outside the ME/FM community.

I think the Ice Bucket Challenge worked well because:
-simple concept
-necessary materials cost-free and readily available (any large container, water, ice cubes)
-little preparation required
-could be done in many places (yard, beach, parking lot etc)

As we say in marketing: KISS -- Keep It Simple Stupid!
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Why would ME patients be the participants?
I haven't watched the ice bucket challenge and know nothing about it.
I thought that the organisers were an ALS charity and that the found people to participate.
 

Aileen

Senior Member
Messages
615
Location
Canada
Why would ME patients be the participants?
I haven't watched the ice bucket challenge and know nothing about it.
I thought that the organisers were an ALS charity and that the found people to participate.
I forget just how the ice bucket challenge got started. Maybe someone else remembers. The point is, it went viral. People all over the world found out about it and started doing it. Everyone from celebrities to politicians to athletes to everyday people are participating. I've seen it on the tv newscasts on at least 4 different days.

You get a bucket of ice water. You or someone else pours it over your head. Someone takes a video of it and puts it on youtube (to prove you did it and for entertainment value). You give a small donation to the ALS charity and challenge someone else to do it.

It has raised gobs of money because ordinary people who know little or nothing about ALS, and don't really care about it, are participating.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Some people have are just doing the ice bucket challenge for CFS/ME! Maybe we should all just do this?

https://www.facebook.com/microbediscovery/posts/709636092438761

At this point, anyone might as well (though if you have ME, I'm not sure I'd recommend stressing your adrenals out like that). People in general who are receiving the challenge are now often choosing to do it for their own charities rather than ALS (or its local national equivalent) but there's no guarantee that anyone you challenge is going to do it for ME. Essentially, you might be just chucking a bucket of water over your head and donating money that you would have anyway...:cool:
 

Leopardtail

Senior Member
Messages
1,151
Location
England
At this point, anyone might as well (though if you have ME, I'm not sure I'd recommend stressing your adrenals out like that). People in general who are receiving the challenge are now often choosing to do it for their own charities rather than ALS (or its local national equivalent) but there's no guarantee that anyone you challenge is going to do it for ME. Essentially, you might be just chucking a bucket of water over your head and donating money that you would have anyway...:cool:
Nice to see you here Sasha...

More to the point: we need ME to go viral, not the stunt....
Tat requires us to be both original and entertaining... We need every teenager to laugh so hard they can't wait to email it one, but also deliver the message....
 

Leopardtail

Senior Member
Messages
1,151
Location
England
I forget just how the ice bucket challenge got started. Maybe someone else remembers. The point is, it went viral. People all over the world found out about it and started doing it. Everyone from celebrities to politicians to athletes to everyday people are participating. I've seen it on the tv newscasts on at least 4 different days.

You get a bucket of ice water. You or someone else pours it over your head. Someone takes a video of it and puts it on youtube (to prove you did it and for entertainment value). You give a small donation to the ALS charity and challenge someone else to do it.

It has raised gobs of money because ordinary people who know little or nothing about ALS, and don't really care about it, are participating.
Funnily enough I was talking to an American Guy about it this morning. The idea behind the stunt was that the ice causes the muscles to go sleep, giving people an internal view of ALS....
 

Leopardtail

Senior Member
Messages
1,151
Location
England
The 100m sprint in mud is a beautiful idea as it combines fun with a striking image. But it could be tough to organise.
good thought Graham, I wonder if we could script some 'surprise' into that idea to make people laugh and generate that 'viral seed'?
Also I wonder if a flash animation might do the job?
 

Leopardtail

Senior Member
Messages
1,151
Location
England
Instead of the mud race, I guess you could have a water race, where competitors are to run across the shallow end of a pool (6 lane? 10 lane?) in water that comes a hand's width above their waist, and where they must keep their hands above water at all time. They could post their times. Just hoping this will spark off another good idea from someone.
if we had healthy competitor ankle deep, and ME patient waste deep, that might illustrate the point...
how do we make this funny / entertaining????