CFS/ME needs to go viral.

[Graham]

Or healthy competitors waist deep (or waste deep if you can get enough slurry!), and ME competitors ankle deep, with the title "levelling the playing field".

 

[Aileen]

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?

Well, videos with cute animals tend to get people's attention. Maybe have a very slow moving animal on dry ground "racing" side-by-side with a big, burly, muscular guy in the mud, pool etc ... Of course, the animal has to be doing something cute at the finish line while the man tries to get there.

 

[Aileen]

Here's a funny animal video. [here] As an example, it would be fun to have that turtle pushing his ball down the side of the pool, playing with it at the finish line, while the man in the pool it is "racing" against tries to get to the end. In addition to the pool, maybe add ankle weights. Of course we can't use this video but it gives you the general idea, I hope!

 

[Leopardtail]

Well, videos with cute animals tend to get people's attention. Maybe have a very slow moving animal on dry ground "racing" side-by-side with a big, burly, muscular guy in the mud, pool etc ... Of course, the animal has to be doing something cute at the finish line while the man tries to get there.

any ideas for a cute slow moving animal?

 

[Leopardtail]

could we do something like a khoala climbing a tree, stopping after a very short distance voice over "Jesus Nigel, what was in those steroid pills you gave me. I've lost all my stamina you ceatin' swine. Response: "They were ME pills you Bill/Jenny sucker.. might wear off in six months, might never"

daft idea but hoping someone could make it funny......

 

[helperofearth123]

Maybe if we're talking about a viral video rather than a challenge, maybe some statistics presented in an easily understandable way would be good to include.

I've read that the total number of CFS/ME sufferers is thought to be around 17 million worldwide and 1 in 4 sufferers are severely effected. The population of London is approximately 8 million. So its as if 2 London's are filled with only CFS/ME patients. Imagine if half the population of London were bedridden with CFS/ME, and the other half very were ill too, and then, next to london there was *another* entire 8 million people, another London, all of whom are very ill people too. That would be headline news all over the world, and that is the situation we have, only the sufferers are spread out around the world and too ill and exhausted to speak up for themselves. That's what it would look like if we put all the CFS/ME sufferers together in one group. Wouldn't that be a serious crisis? Worthy of lots media attention and a large amount of funding. etc

Then it could go into statistics comparing the total worldwide research funding compared to other similar diseases such as MS, revealing CFS to be desperately underfunded.

It would need to be presented in a visually appealing way with colourful cartoon versions of the London (or whichever city) and a cartoony voice perhaps to make it friendly and not scary.

 

[Leopardtail]

Maybe if we're talking about a viral video rather than a challenge, maybe some statistics presented in an easily understandable way would be good to include.

I've read that the total number of CFS/ME sufferers is thought to be around 17 million worldwide and 1 in 4 sufferers are severely effected. The population of London is approximately 8 million. So its as if 2 London's are filled with only CFS/ME patients. Imagine if half the population of London were bedridden with CFS/ME, and the other half very were ill too, and then, next to london there was *another* entire 8 million people, another London, all of whom are very ill people too. That would be headline news all over the world, and that is the situation we have, only the sufferers are spread out around the world and too ill and exhausted to speak up for themselves. That's what it would look like if we put all the CFS/ME sufferers together in one group. Wouldn't that be a serious crisis? Worthy of lots media attention and a large amount of funding. etc

Then it could go into statistics comparing the total worldwide research funding compared to other similar diseases such as MS, revealing CFS to be desperately underfunded.

It would need to be presented visually with pictures of the London (or whichever city) and a cartoony voice perhaps to make it friendly and not scary.

I understand the concept as a conventional ad, how would we make it viral?

 

[helperofearth123]

I understand the concept as a conventional ad, how would we make it viral?

How about, Zombies. We feel so exhausted we are like zombies, the waking dead, we don't (usually) die from our disease, we just keep shuffling like a braindead monstrosity (lol). Zombies are really popular at the moment, if CFS/ME could become known as the 'zombie' illness that could be a great awareness campaign.

 

[Graham]

Well Matthew, I've been working on animated, "statistical" videos for some time now, and video 8 with details about the lack of funding in the UK of biomedical research is on its way. Watch this space.

 

[snowathlete]

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!

Yep, it needs to be something just about anyone can do. And, funny, fun...
The fundraising is a part of it, but don't underestimate the benefit of awareness. The problem with that is that if ME did go viral, the likes of the SMC in the UK would use it to spread lies about the illness. So thought might be given to how to limit that as part of the idea, but that make be tricky.

Thinking out loud (which I think we should all do because it stimulates the development of ideas, even if your idea itself is no good, it can lead to one that is) we could get as many people as possible to write to the government asking for research, with a very short one-sentance statement, nothing more, but intentionally post the letter without a stamp. In the UK, if someone sends you a letter without a stamp, Royal Mail inform the reciever that there is a letter and charge them the postage plus £1 before they can have it.

This would be a clear point-making way to show the government what we think of their poor funding of the disease. I.e. they arent spending anything on us, so we arent spending any money on the stamp.
Ideally, if enough people did this it would make the news with Royal Mail/government getting annoyed about it.
I think it would have a chance if it was well coordinated, getting everyone to do this stunt on the same day, so that there were hundreds at a time.

edit: this idea might be too negative. Gotta keep the public on side

 

[Aileen]

Yep, it needs to be something just about anyone can do. And, funny, fun...
The fundraising is a part of it, but don't underestimate the benefit of awareness. The problem with that is that if ME did go viral, the likes of the SMC in the UK would use it to spread lies about the illness. So thought might be given to how to limit that as part of the idea, but that make be tricky.

I hadn't thought of that. It's never simple is it? Why is coming up with a simple idea always so complicated and difficult???

I wonder about a challenge where you have someone without ME wear an "ME suit" to find out what it feels like, at least partially, and how hard it is to do anything. I am thinking about those "fat suits" they have so people can understand how the obese are treated by others or the "empathy belly" to simulate being pregnant... That sort of thing. Just thinking out loud.

 

[DanME]

We should not underestimate how much 'going viral' has to do with luck. I think, even the ALS challenge had a lot of luck in the beginning. Sometimes videos on YouTube stay dormant for years and then suddenly go viral and millions of people watch them. They literally come out of nowhere.

I really like the London comparison. But how are we able to fund a professional vid???

 

[Leopardtail]

Yep, it needs to be something just about anyone can do. And, funny, fun...
The fundraising is a part of it, but don't underestimate the benefit of awareness. The problem with that is that if ME did go viral, the likes of the SMC in the UK would use it to spread lies about the illness. So thought might be given to how to limit that as part of the idea, but that make be tricky.

Thinking out loud (which I think we should all do because it stimulates the development of ideas, even if your idea itself is no good, it can lead to one that is) we could get as many people as possible to write to the government asking for research, with a very short one-sentance statement, nothing more, but intentionally post the letter without a stamp. In the UK, if someone sends you a letter without a stamp, Royal Mail inform the reciever that there is a letter and charge them the postage plus £1 before they can have it.

This would be a clear point-making way to show the government what we think of their poor funding of the disease. I.e. they arent spending anything on us, so we arent spending any money on the stamp.
Ideally, if enough people did this it would make the news with Royal Mail/government getting annoyed about it.
I think it would have a chance if it was well coordinated, getting everyone to do this stunt on the same day, so that there were hundreds at a time.

edit: this idea might be too negative. Gotta keep the public on side

eeeekkkk no!!!!!

People find it too easy to label us as lazy; awkward; unwilling to participate in therapy; aggressive. Whatever we do must be 100% positive and focussed first on an objective awareness of the disease.

 

[WillowJ]

Yep, it needs to be something just about anyone can do. And, funny, fun...
The fundraising is a part of it, but don't underestimate the benefit of awareness. The problem with that is that if ME did go viral, the likes of the SMC in the UK would use it to spread lies about the illness. So thought might be given to how to limit that as part of the idea, but that make be tricky.

Thinking out loud (which I think we should all do because it stimulates the development of ideas, even if your idea itself is no good, it can lead to one that is) we could get as many people as possible to write to the government asking for research, with a very short one-sentance statement, nothing more,

This part is really good.

This is actually how ME got included in the name as used by DHHS, in the U.S. "What have you done for ME/CFS today?" On t-shirts at CFSAC, in a fax campaign, etc.

There is no reason you need the "CFS" part in the UK. (I hope we can dump that part in the US and Australia soon!)

 

[Leopardtail]

This part is really good.

This is actually how ME got included in the name as used by DHHS, in the U.S. "What have you done for ME/CFS today?" On t-shirts at CFSAC, in a fax campaign, etc.

There is no reason you need the "CFS" part in the UK. (I hope we can dump that part in the US and Australia soon!)

I wonder if we could come up with some catchy plain English with the initials M and E that means always knackered.
Super simple, will get the message over?

 

[DanME]

Malady Eternal, Misery Everlasting, Macabre Exhaustion, Maddening Exhaustion, Major Exhaustion, Malign Exhaustion, Malicious Exhaustion, Mammoth Exhaustion, Manifest Exhaustion, Massive Exhaustion, Mean Exhaustion, Meaningless Exhaustion.

More e nouns to be used and play around with:
Energy, Enslavement, Enigma, Enemy, Existence

As English is not my mother tongue, maybe you get better ideas:

http://adjectivesthatstart.com/with-m/
http://noun1.com/start-e/

 

[Leopardtail]

Malady Eternal, Misery Everlasting, Macabre Exhaustion, Maddening Exhaustion, Major Exhaustion, Malign Exhaustion, Malicious Exhaustion, Mammoth Exhaustion, Manifest Exhaustion, Massive Exhaustion, Mean Exhaustion, Meaningless Exhaustion.

More e nouns to be used and play around with:
Energy, Enslavement, Enigma, Enemy, Existence

As English is not my mother tongue, maybe you get better ideas:

http://adjectivesthatstart.com/with-m/
http://noun1.com/start-e/

Loads of good selections Daniel, keep the ideas coming!

@Graham , @Snow Leopard @Snowdrop @Aileen @WillowJ @Matthew Jones
@Kina @Sushi

We are trying to think of a Tshirt printable (i.e. simple) slogan with acronym ME.
Daniel suggested Exhaustion for the 'E' which I think is great...
Can anybody think of an 'M' that means everlasting / relentless ???

Or a better option altogether?

 

[Snowdrop]

I have no great ideas at the moment. And I'm sorry but anything that highlights fatigue even if it's phrased as exhaustion I can't support.

Edit: Although it did occur to me that since this is proving difficult that maybe the secret lies in organising a few different one off senarios and encouraging people to come up with there own unique funny challenge. That way whatever materials are needed would be on hand because they're choosing the challenge.

A create your own ME challenge challenge.

 

[Aileen]

I have no great ideas at the moment. And I'm sorry but anything that highlights fatigue even if it's phrased as exhaustion I can't support.

If we are talking about a slogan to hammer home a message for a CDC or other govt body meeting or publicity campaign, how about this?
M = Merciless
E = excruciating pain

Pain is my worst and most difficult to cope with symptom. Well, a number of pain symptoms actually. If we add in another symptom to get the focus off "fatigue", that might be a help. Just to get people thinking something other than fatigue when they see M.E.

I also kinda like Malaise Everlasting, but the average person wouldn't get it.

 

[Leopardtail]

If we are talking about a slogan to hammer home a message for a CDC or other govt body meeting or publicity campaign, how about this?
M = Merciless
E = excruciating pain

Pain is my worst and most difficult to cope with symptom. Well, a number of pain symptoms actually. If we add in another symptom to get the focus off "fatigue", that might be a help. Just to get people thinking something other than fatigue when they see M.E.

I also kinda like Malaise Everlasting, but the average person wouldn't get it.

There would be nothing to stop us generating one slogan each for exhaustion & pain. Personally while I do get a lot of pain I was able to erect a meditative/hypnotic filter to help, the exhaustion however I cannot push through.
Bear in mind this is the headline slogan, not the whole message too....

Keep the ideas coming Aileen, we'll get there together...