• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

CFS/ME needs to go viral.

Kati

Patient in training
Messages
5,497
I very much agree that we'd have to wait at least six months before launching a campaign that we hope to have go viral. But I also think it is likely to take at least six months to fully develop such a campaign.


Just a comment about making something go viral, I am afraid that this ice bucket challenge was a wonderful marketing genius, but how many great ideas just don't make it viral? The campaign succeeded and I suspect far exceded expectation, and I give them my hat for that. They truly deserve to be congratulated and supported for their cause, and I am excited for them.

For our cause, I think our best bets would be in helping out Jen Brea and Ryan Prior's films in educating the public about what this disease is. Edit to add: and support Loewellyn King's idea about having a lobbyist in Washington

i may be wrong, but ALS doesn't have an obvious stigma, only it's deadly and people all end up in a coffin quite rapidly. We are facing an enormous stigma, so in order to convince people to sympathize to the cause we have to tell them the stories.

Through 2 different movies, we have an opportunity to tell our stories to the world. Ryan Prior is looking for volunteers to stage a screening in their communities. If each one of us stage a screening open to the public, in libraries, perhaps in movie theaters, perhaps in schools, then we are passing the word around and we are moving forward.
 
Last edited:

Leopardtail

Senior Member
Messages
1,151
Location
England
Before any of this can work, we have to acheive something apparently (to others) much simpler, and much more fundamental. We have to simplify the message. The messages being delivered on our behalf are too complex, too long, and too woolly. Right now the messages delivered by our charities are fashioned by doctors.

We need a simple one sentence sound-bite that the general public will instantly understand. We need a marketing style message, not a four paragraph headache. Once we've got their attention, then we can fill in the details.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I was thinking on that. Something along the lines of statements that back up the claims of the pyschobable crowd and then a big NOT symbol (red circle with a line through it). Then correct the misinformation with a brief statement of fact.

An example would be: People with ME are lazy and want to enjoy a life free of work.
(visual would be a guy and a girl on a couch potato chips (crisps) in hand with a bottle of beer chilling in front of the telly, maybe even they're wearing football colours as they are entranced by a game).

NOT. Many people with ME push their limit in trying to function and do even everyday small tasks.
Find our more facts regarding ME.

There could be dozens of small examples that reframe how ME is viewed.

One could only wish that the people who run ME charities would get it together and do something useful.
@Sonya Chowdhury (yours is the only name I know because you have responded respectfully to the community here)

Even a luminary such as Stephen Fry who has absolutely no connection to the ME community is at least prepared to acknowledge ME as real and stand up and say so.

(old news I know but I just found it)

Stephen Fry @stephenfry · May 12
Can't believe some people still don't believe that ME exists and that it seriously blights lives. #MEAwarenessDay


from his twitter feed.
Thank you Stephen Fry.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
I was thinking on that. Something along the lines of statements that back up the claims of the pyschobable crowd and then a big NOT symbol (red circle with a line through it). Then correct the misinformation with a brief statement of fact.

An example would be: People with ME are lazy and want to enjoy a life free of work.
(visual would be a guy and a girl on a couch potato chips (crisps) in hand with a bottle of beer chilling in front of the telly, maybe even they're wearing football colours as they are entranced by a game).

NOT. Many people with ME push their limit in trying to function and do even everyday small tasks.
Find our more facts regarding ME.

There could be dozens of small examples that reframe how ME is viewed.

One could only wish that the people who run ME charities would get it together and do something useful.
@Sonya Chowdhury (yours is the only name I know because you have responded respectfully to the community here)

Even a luminary such as Stephen Fry who has absolutely no connection to the ME community is at least prepared to acknowledge ME as real and stand up and say so.

(old news I know but I just found it)

Stephen Fry @stephenfry · May 12
Can't believe some people still don't believe that ME exists and that it seriously blights lives. #MEAwarenessDay


from his twitter feed.
Thank you Stephen Fry.
I was thinking of something that side steps all that. More like: '

ME robs people of their mental & physical stamina.
ME can make the touch of a feather painful.


ME affects the brain, the bowels, the immune system, hormone levels, the muscles, the cardio-vascular system - everybody has multiple body-systems affected, but it's inconsistent between patients..

If it's severe they may be able to think or stand for only seconds, or be housebound
If mild they will be shattered before finishing a full day of work, be unable to socialise after work and spend the entire weekend recovering and in complete exhaustion.
The very severe may be bed bound, or need hospital care.


People are more likely to change their mind if we give clear new information rather than argue personality.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
I was thinking on that. Something along the lines of statements that back up the claims of the pyschobable crowd and then a big NOT symbol (red circle with a line through it). Then correct the misinformation with a brief statement of fact.

An example would be: People with ME are lazy and want to enjoy a life free of work.
(visual would be a guy and a girl on a couch potato chips (crisps) in hand with a bottle of beer chilling in front of the telly, maybe even they're wearing football colours as they are entranced by a game).

NOT. Many people with ME push their limit in trying to function and do even everyday small tasks.
Find our more facts regarding ME.

There could be dozens of small examples that reframe how ME is viewed.

One could only wish that the people who run ME charities would get it together and do something useful.
@Sonya Chowdhury (yours is the only name I know because you have responded respectfully to the community here)

Even a luminary such as Stephen Fry who has absolutely no connection to the ME community is at least prepared to acknowledge ME as real and stand up and say so.

(old news I know but I just found it)

Stephen Fry @stephenfry · May 12
Can't believe some people still don't believe that ME exists and that it seriously blights lives. #MEAwarenessDay


from his twitter feed.
Thank you Stephen Fry.
Yes we do need a 'internationally charismatic star' to help get our message other.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
We are in a muddle that requires clarity. The reason I stated things as I did though was because of how people respond to messages.
There is so much out there vying for our attention. When you start with something that reinforces what a person believes you will have their attention for the 'other ' half of the message. And it will be jarring enough that it will cause a response (give them pause for a moment as they assimilate something they were NOT expecting).

It's about the initial capturing of their attention. Just giving the facts will not cause any thought but 'that doesn't fit with what I know (personal prejudice)' and they will reinforce their 'lazy, tax-sucking slackers/wankers' view to push away info that doesn't jibe with their reality.

That's just my understanding of how people respond. ;)
 

Leopardtail

Senior Member
Messages
1,151
Location
England
Wouldn't say we are in a muddle snowdrop, just differing on best approach.

I spent a lot of time around sales reps, and on presentation courses. The ethos both work to is what you say first and what you say last have highest impact. You put your own message first and last and contrary information in the middle to influence the mind.

The other thing very large numbers of people in both sales and marketing have told me is 'never talk about your competition'. In this scenario 'people with ME are lazy' is the competing idea hence my own view that we ignore it, because its too stupid to warrant our attention.

I take what you mean about using shock tactics to gain peoples attention though - it can be very effective. I wonder if we could acheive that without publicising the very idea we are fighting against?

I have found first hand talking about ME as a stamina issue that people get it straight away and because they get it... easily... its the only strategy I have found that works quickly.... and response then is 'oh I never really understood, that makes sense'

I wonder whether appealing to emotion and imagination might be an alternative...
E.g.
''imagine your mind had only 5 seconds of stamina, imagine that your legs had only one minute of stamina? How would you fill your day?"
"You have just imagined living with severe ME"
"now imagine people said you are lazy and called your illness yuppie flu, are you angry?"

Do it with a monkey talking a highly attractive person talking.... a person tattooed with barbed wire...... a bright purple prison door. the cutest pussycat ever...

There have to be loads of ideas we can throw around to do this.....

Alternatively we could make it funny?
E.g. that word finding thing we have trouble with... a deliberately funny 'wrong choice' might serve our purpose...

Deliver the shock value through graphics .....
e.g. I used to be a hardworking nun / priest.... prison door slams shut.... but ME put in a virtual prison.....
or maybe ... attractive person in tramp clothes on the street.... "I used to be a doctor/stock broker etc etc" but now I have ME....

I suppose the main thing though, is 'what is our core message' what is the bit we really need them to hear, irrespective of order? When we know what we want to say, then we can work out how to deliver the message with all the 'pizzazz'...
 

Snowdrop

Rebel without a biscuit
Messages
2,933
If we keep at it hopefully we'll arrive at something.
But I have to still disagree with approaching it as your sales rep friend has been trained.
While I agree that it probably works well with regard to selling product I think this message is somewhat different.
Different enough that challenging people prejudice perceptions head on leads to questioning the assumption.

I like the prison visual. Certainly reflects how I feel.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
If we keep at it hopefully we'll arrive at something.
But I have to still disagree with approaching it as your sales rep friend has been trained.
While I agree that it probably works well with regard to selling product I think this message is somewhat different.
Different enough that challenging people prejudice perceptions head on leads to questioning the assumption.

I like the prison visual. Certainly reflects how I feel.
If you like the prison visual lets see if we can work with that....
I know its how I feel at times too.. which probably means it's the best one for 'Joe Public'

I would also allow us to use a loud 'clang' to jolt people to attention... unless you have a better idea for audio?
 

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
Thanks for the praise, Leopardtail, but I'm not! The videos are my sort of level: I can summarise stuff in a simple, entertaining and structured way for people that want to find out: well, after 40 years of teaching maths, I must have learned something! But I never have been good at catching people's attention in the first place. About 18 months ago, a friend, Luke, and my son, Ian, were discussing with me a plan they had to encourage and enable people to raise money for biomedical research into ME - "Walk for ME". I didn't think it would work, and I said so. Huh! It has been very successful. People have raised several tens of thousands of pounds so far. My son's advice is "Ask dad, then do the opposite!"

A cartoon? A nasty looking character aiming a lethal looking gun labelled ME at your head, demanding "I don't care about your money, I want your life!" while in the background a psychologist cowering behind a pillar whispers "It's all in your imagination, just ignore him and he will go away"
 

Leopardtail

Senior Member
Messages
1,151
Location
England
The point I raised was that if everything else is to work we need the public to 'get' ME the way they understand cancer. The descriptions given of it are too complex. If we can get their imaginations around our experience, we won't need to reference the Psychs they will laugh them odd anyway... Bear in mind the wider public don't know the psycho twaddle, just the silly names.. and the attitude

I favour something more like the text above.

that the mind & muscles alike have very limited stamina. That every system of the body shares that lack of stamina... etc.....

we need a more gripping presentation though.....

I like your imagery Graham, just wondering (though others agree with your approach) whether focussing on what it is (rather than what it isn't) might be more effective..?

I found your PACE thing pretty striking......
 

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
Thanks Leopardtail, but remember my son's advice. My suggestion is almost certainly the opposite way to a successful one. I used to find though that if I threw a few crummy ideas out, often one of them would trigger something good in someone else's mind, so along those lines….

A series of cartoons, "thinking ME is about feeling tired…" , and the first cartoon shows an emaciated wreck of a man crawling across a desert with arm outstretched to a healthy man, drinking from a mug, reminiscing "Yes, I remember getting a bit thirsty last week when it got quite warm…"

"thinking taking a couple of aspirin will cure an ME headache", with a cartoon of a man on the rack, while two torturers are talking to each other "Yes those paper cuts are really painful, aren't they…"

Yes, I know they aren't right, but have they stimulated anything???
 

Leopardtail

Senior Member
Messages
1,151
Location
England
Well my thoughts are a short video, the headline needs to get the variable across (for me that = stamina)..

your suggestions very successfully deal with the follow up.... that comparison between ME fatigue + pain and the glib response of family.... so yes, they are stimulating stuff...

what do you think of the prison analogy above?
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
A cartoon? A nasty looking character aiming a lethal looking gun labelled ME at your head, demanding "I don't care about your money, I want your life!" while in the background a psychologist cowering behind a pillar whispers "It's all in your imagination, just ignore him and he will go away"
That's not bad for someone who claims to lack creativity.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I favour something more like the text above.

that the mind & muscles alike have very limited stamina. That every system of the body shares that lack of stamina... etc.....
I think lack of stamina is a better description than fatigue or exhaustion. Poor recovery is a factor as well, but first things first.
 

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
Yes, lack of stamina is the key issue, and the consequences of ignoring it, but I/we can't see any way of getting the message across easily. This is something that we have discussed many times. At one time we saw an "arthritis suit" made for designers to wear to test out their designs for elderly people. We decided that the suit would need to be heavy and tiring, with refrigerator units so it was hard to keep warm, uncomfortable lumps in it, so that it wasn't easy to rest, a tennis style headband with pebbles so that the wearer gets headaches, a hearing aid producing white noise so that you have to really concentrate, but above all, a random time lock to the zip so that when the wearer is utterly fed up of wearing the suit, he or she discovers that they have no way of knowing when (or even if) they can escape.

The problem with these videos is getting them to go viral. The prison idea is good, but what would be the hook to draw people in? On the other hand, the ice-bucket challenge has gone viral, but has it really drawn any attention to motor-neurone disease?

I do have a personal idea that I think would work, but it would depend on persuading James May to take part. The report start off looking as if it is one on electric cars, then pans to an ME-car, battered, punctured, and powered by just two AA batteries. James drives off up the street in it, conks out and exhausts himself pushing it back home. Pie in the sky! The problem is that these days we need celebrities to draw the crowds, unless we can come up with something truly remarkable.

Late edit: no, the car should look perfectly normal, until it comes to operate anything like wiper, indicators, heater etc.
 
Last edited: