Ideas For Marketing ME More Effectively...

The one idea that has most resonated with me (which is not to suggest it as a unifying theme for a banner under which we should march) is:

I'm not pretending to be sick.
I'm pretending to be well.

Pretty well sums up my last 34 years.

Bill

 

Oh and we do have plans to make lots, and lots of explainer videos...everything just takes time. It would take less time with more help or money. But isn't that always the nature of things? But truly, if you can help, please jump in. We are working on ALL of these things (but that doesn't of course preclude you from doing your own thing and putting it out there!)

 

I'd like to help you @JenB.

I emailed Laurie over the weekend and we can discuss how I might be of service when the dust settles on your end.

Best,

Bill

 

A multi quoting monster reply

The problem i have with living dead is not just the jokes but the marketing fatigue that will ensue.

Indeed, a good slogan is very important
Few slogans encompass every case scenario, we need one simple, easily understandable and reasonably broad yet specific enough. Anyone who wants to learn more should be able to, with websites, marketing materials and hopefully we can turn wikipedia towards real science.

I agree but being over dramatic will backfire.

exactly

Yes but there is more then this to life and motivation

I don't think overdoing it is a good idea, not only do the ends not justify the means but your message will make an initial impact then get ignored when people hear they might get a disease they had never heard of till now so donate or else your next. It almost sounds like a scare mongering infomercial (and infomercials have great reputations...)

It is a risk, all strategies and life itself has risks, in our case from anti science "scientists". That said we have little choice but to take that risk, but we can bear it in mind and prepare.
As i said in the Millions Missing thread
https://www.s4me.info/threads/milli...t-news-tweets-etc-here.4077/page-6#post-71560

This is why we need a biomarker or disease mechanism, no one would describe cancer or MS by using false equivalence/bothsiderism, but barring that we need to work harder. Also David Tuller is only a piece of a strategy, debunking lies and injustice article by article, but its not enough on its own but it is a key piece.

+1

Indeed, marketing materials should make an impact. An advertising campaign may include mild patients who look normal, then show their PEM, and moderate/severe patients who don't look normal at all. It would show progression, which makes a lot of intuitive sense.

I disagree, right wing "advertising" doesn't let people decide for themselves, they give conclusions that they want you to accept (and repeat them incessantly till peoeple start to believe them). From doublethink to easy answers to baldfaced lies to training their supports to deny reality. They sell a philosophy not facts and make your own decisions. And they are successful, they get elected on lies, easy answers and vote against your own interests (by scapegoating others)

People who donate to third world countries don't fear their country becoming so, people who buy girl guide cookies don't fear children, people who donate to community fundraisers don't fear bad things, people who support crowdfunding also don't typically do it out of fear. Fear is a powerful motivator but its not the only one, and pretending it is and using it as manipulation is a bad strategy.

It sounds almost comical, not a good strategy.

This is a good point, not sure how to deal with it.

Is it from the Rituximab success (before the second trial failed). It seems after it did well in the first trial the tune changed for a few governments, and even though it failed the culture change seemed to have been made. Hard to reproduce but a disease mechanism or biomarker will often make the difference, it worked for MS, Narcolepsy and many others.

Agreed, cancer fundraising (among others) is a well oiled machine and they get donations

Indeed, we need to accelerate the process

He is part of a necessary strategy, we should keep him on as long as we can and full time if we can pull it off, especially in our disease we need a hard hitting hired gun.

I very much agree, putting all our eggs in one basket is not what we need to do.

I would think of this as a documentary idea. Perhaps we should start our own online TV show, with new topics on a regular schedule (maybe one a month?). Who can manage this is a good question, no one with ME would have the energy to produce such a thing on a regular basis. Though if we had someone i bet we could come up with lots of story ideas

 

Thankyou everyone for for participating in the thread...

Having read them all I agree that ‘the living dead’ is not a good idea on balance for due to ideas discussed.

I do think however ‘ we believe in a life before death’ or even better in my opinion ‘we deserve a life before death’ is fantastic and it more accurately conveys the experience of the struggles of this disease at all levels of severity...

 

There was a "rule" in coaching - don't use "not". I and others will actually overread the "not", i.e. "I'm pretending to be sick".

Don't know actually if that's true for some or many...I just know from myself when I had bad nausea, to think "I'm not unwell" won't help with it, but "I'm well" does a bit (I'm talking about nausea e.g. one gets on a boat or in a car...). So probably it's not entirely wrong.

 

No, the Rituximab trial in Norway didn´t get any attention in media in Sweden. Yes, a biomarker, that also includes an explanation to the mechanisms behind ME will surely cause THE change.

What caused the breakthrough regarding acceptance of ME here, was a good combination of the factors I described; a well-reputed journalist began writing articles in one of the biggest newspapers. He highlighted the severe and changed life for a rather well-known person with ME. ME-doctors filled in. Politicians filled in, and all media were there, all of a sudden. One TV channel, TV4, did a great job with follow-ups, again and again. They also invited the minister of social Affairs, who initiated an investigation that will lead to better care. I think our situation has to really touch the heart of some media people, to get the ball rolling.

 

Indeed, sometimes the right action in the right place at the right time can be the watershed moment and change history for the better. Its probably what the PACErs are afraid will happen so they are fighting tooth and nail to keep themselves in charge of the conversation in the UK.

 

She certainly has - I noticed this one on Twitter, and among hundreds of images that I saw on May 12, this is the one that has stuck with me.

https://twitter.com/user/status/994698805202341888

 

Thanks for the info Jen. Great to hear about the video content, looking forward to it.

I had a look at the groups and wasn’t sure which one to join, is there a general one for creative/digital/marketing? If not would it be possible to create a new one?

 

@JenB thanks for your input, what you are doing is amazing.

 

Something I also speak of regarding my wife, which I know is very true of the vast majority of PwME:

My wife always strives to do as much as she can, never as little as she can.

 

Marketing to what end? What is the goal?

It is also important not to mix up marketing with education - and it is difficult to educate the public through slogans and media articles...

 

My paraphrase was off. Instead of:

I'm not pretending to be sick.
I'm pretending to be well.

It was:

I don't pretend to me sick.
I pretend to be well.

My mistake. I like this second version better. It is more active-sounding to my ears. I'm not sure if it solves your issues with "overreading" (or not).

I do know that this message strongly resonated with me as it economically captures three-plus decades of my experience with this illness.

Perhaps the fact that different messaging will connect with individuals in differing ways is an argument in favor of not have one branding message, but to have many messages that are unified by an overall linking element.

There has been great work by dragonflies and dreams, the team at ME Action, and many others. "Millions Missing" is a very powerful idea in my opinion. Getting idea across in a media age is vital.

I'd like to use my creative powers in support of the larger effort.

Bill

 

Initial mock-ups for the Undead campaign are starting to come in

Bill (it is only a joke)

 

All very good points IMHO. I ask you to consider my following rambling thoughts on the matter.

For me, the goal is to encourage people to either support or not resist our demands for civil rights. One of the first priorities in doing this is for us to be recognised as fully human.

To do this, we need to encourage empathy, not pity or fear.

I'm unaware of any civil rights movement in history that had it's basis in making sure that the people who were asking for basic rights were also seen as different, dangerous, unthinking and a threat to the people who already hold those rights, in order for them to include and not exclude.

One of my personal theories about the way we are treated, both by distant and close relations is that in a way we already are viewed as monsters.

We are monsters of chaos, upturning the myths of society, that if you follow the rules and don't make a fuss, and fit in, everything will be OK. This is a very powerful myth, based on order, fear, submission. We are living proof that the myth is a lie, that terrible things happen to 'good' people, and it scares the hell out of people.

Disabled people have been murdered throughout history because of this, either sacrificed to the gods who live in the sky or the gods who dispense their wisdom through the markets of finance.

One of the reasons for the UN Convention on the Rights of Persons with Disabilities, is that we are human, not monsters.

This was the culmination of decades of work by Disability Activists, and only entered into force 10 years ago. It was only in May 2008 that we were finally recognised officially as human beings.

It would be a pretty spectacular slap in the face to those activists to be going against their goals, work and sacrifice just 10 years later. Do you think they would embrace this change of direction?

One of the most successful marketing campaigns ever, was that in place in Germany in the 1930's. It was based on fear of the 'other', especially including disabled people. The victims so dehumanised that even fellow victims refuse to acknowledge us as victims of it. 300,000 Disabled people were murdered, and it still wasn't enough.

In summary, yes - show us at our worst, our most vulnerable, our real faces and not the ones we put on in public. Don't show us as monsters or objects of fear. We are missing, not hiding away or to be hidden away by fright.

No offense is intended to anyone, and I recognise that the noble motivation behind this thread is wholly based on empathy and a desire for change for the better.

 

Impossible to "like" your post enough, Luther. ^This This This and This!

 

Wonderful, @Luther Blissett!

 

Oh dear. It seems that by popular demand the Undead campaign has been terminated

Bill