Ideas For Marketing ME More Effectively...

[Bill]

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

 

[JenB]

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!)

 

[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

 

[Alvin]

A multi quoting monster reply

he media are driven by headlines... It is most important thing that gets them readers/viewers. They want to be able to write/show catchy headlines-- This is the headline we need to give them- "The Disease of the Living Dead"....They are calling it 'The disease of the living dead'. Simple... And this is what now drives government decisions

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

I'd prefer something that gives a hint at the disabling effect of PEM, maybe something like
''ME: When exercise makes you sicker''

but that has problems too, as some people are much more affected by cognitive effort.

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.

When it comes to marketing no company, no government, focuses on a balanced view. They focus on the things that will win customers, win votes and try to limit awareness of their weaknesses. We need to focus marketing on what will win funding-- this is the 25% of people that have a form of the disease that is like a living death, the people who are driven to suicide because they have no other options. Then all of our community will benefit through increased funding.

I agree but being over dramatic will backfire.

No-one says "You only got mild cancer" the label itself is scary enough.

exactly

People act based on fears and dreams.

Yes but there is more then this to life and motivation

So if a journalist writes an article with the titles: 1.) Millions Missing From Their Lives Due To Debilitating Disease 2.) Thousands Struck By 'Living Death' Disease, You Could Be Next....

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...)

And this is where a lot of articles become unstuck. Although the person interviewed might give all the right info, we have to trust that the journo concerned will work the piece from our angle. Often the journalist seems sympathetic, but then goes to the various press sources and comes up with some guff regurgitated from the Science Media Centre about how CBT and GET are so helpful!

Every interview a patient does is a risk. Journalists can be naive, or they can be cautious of telling the patient story straight. Alternatively they can be duplicitous and simply be manipulating a patient story to the ends of the psycho-social paradigm. This is a big problem.

And the journalists who we trust to tell our story accurately, and the ones who are brave enough to put the scary truth out there, often find they can't get such articles past their editors. So they have to soften the message, and give wordage to the other "side".

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

That leaves us in a tricky position. We can share stories amongst ourselves easily, but getting a bigger platform is going to take a sea change in the perceptions of editors etc. David Tuller is doing incredible work, but getting his work into high circulation outlets is not a given.

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.

Sorry but I think anything that uses the 'Living Dead' sounds gimmicky, overblown and comic but not in a good way (reference to zombies), just my opinion.

+1

I think we need images of what sufferers look like (particularly at the severe end).

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.

Personally, I don't think making statements about individuals such as calling them the next 'Doctor Death' is a good strategy idea at all. Simple giving people the pictures and the stories is much more effective, let them decide for themselves.

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 need to be afraid of getting ME - I know that sounds disgusting. But there won't be another motivation for them to get active (exception: they got ME themselves or know someone with ME, or they're one of 10 altruists worldwide ). One of the reasons why the HIV movement was successful was that people were really afraid to get this mysterious disease and die. This created numbers, and big numbers increase pressure on governments.

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.

I agree @Alvin. I view this idea as one possible step.

I think there's also another big problem: Some/Many ME organizations. Can you imagine AfME would use the slogan "ME: The disease of the living dead"? I can't. If I look at IAME - and how many organizations seem to have joined - I can't ever imagine we'll have unity under such a slogan.

Still I think it's a good idea.

Edit: just saw @ukxmrv's post.

It sounds almost comical, not a good strategy.

I attended the #MillionsMissing demo in London on Saturday, and one thing particularly struck me.
And I feel really quite awkward saying it, but I was struck by how ill people looked.

But when I look at the photos posted online, people are smiling and look reasonably well.
I guess there is a strong social bias to try to look our best in photos and in public. It feels really bad to say, but this seems like a bit of an own goal.

I think one of the main issues is getting across to the general public how badly this affects you. Nothing I've seen in the press comes anywhere near close to my experience on Saturday. And I'm not sure how one addresses that.

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

In Sweden we had a breakthrough regarding more knowledge about the disease to people in common, and acceptance for ME as a really serious disease, since December last year.

All media; TV, radio and newspapers are now covering ME from different angles. I think every week we get news and personal witnesses about ME, but most important the government has asked for an investigation into ME and how patients should be taken care of while waiting for better treatments, as a help for doctors and caregivers.

There has been no slogan here, but the theme has been to show how ill PWME are, and how ignored and mistreated we have been for decades. There have been really moving stories that normal people just can´t dismiss. I also think it´s important to show boys and men who are ill, not only young women in nice positions.

I think the question is for every country is how to get media interested. Are there journalists, maybe for personal reasons, and with good reputation who could be interested in a series of articles about ME? Is there a famous person with ME who would like to be interviewed again and again. A well-known crime author, Karin Alvtegen decided to be that person in Sweden. A big thank to her.

I think every country has its own way to media, and it´s about timing and having interested journalists. Also doctors who are willing to stand up for us are probably necessary to have in the PR-team, informal or for real. We are lucky to have quite a few ME-doctors who supports us in interviews.

Edit: we also have some politicians working for us; Ella Bohlin, thanks.

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.

In some sort of perfect world, the common message / slogan would be rolled out on 3 fronts:

Paid media: put down the cold hard cash to produce an ad and pay for air / digital time to get a message we control out to the masses

Earned media: large distribution but less control over the message; a lot of work to try to entice reporters / editors with compelling / provocative narratives

Created media: we control the message, less control over distribution, greater emergence online

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

The later seems like a good fit for our community at this point - like Gary Burgess and his podcast The ME Show - and is the the future in a 'the medium is the message' sort of way.
And we can exploit created media immediately to get the funding to do paid media - I imagine there will be a tipping point from the created and paid when the mass media engulfs ME and seeks out narratives of victims and villains.

Maybe that's the spin - we know how this will play out because a story of decades of mass medical and political harm and the push back for justice from patient groups from their beds is too compelling not to be exploited by corporate media for monetization.

We know eventually the mass media will latch onto the ME movement, the guilty and conniving will be exposed and shamed, and Hollywood will pay big stars to play white-washed heroines in blockbusters.

Our job is to catalyze that eventuality.

Maybe our paid ad is something like:

We are ME patients and we are selling the movie rights to the story of the biggest medical scandal in the 21st century.

Bidding starts at $10 million.​

Indeed, we need to accelerate the process

In that case maybe the best thing we can do is to agree on an organization we believe will have the best chance of making this happen and push to raise funds for it?

Like Tuller, but with epic marketing skills. Or is Tuller the best marketing we can get right now and we should rather push to fund him full time next year?

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 also think it's really hard to unify everyone under one idea, especially in this age of social media. Ideas catch, or they don't, and that's why you want an ecosystem that is constantly generating new ideas, so the best ones can rise up and spread.

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

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.

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

 

[Rossy191276]

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...

 

[Inara]

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

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.

 

[Helen]

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.

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.

 

[Alvin]

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.

 

[Sasha]

https://twitter.com/dfliesanddreams in particular has done some *incredible* visual design this year, all from her bed.

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.

 

[Adam pwme]

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

Please do jump in! Email Ben and or join a group that calls to you: http://meaction.net/groups.

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?

 

[Tia]

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

 

[Barry]

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.

 

[Snow Leopard]

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...

 

[Bill]

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.

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

 

[NelliePledge]

I am ill. I pretend I am well

 

[Bill]

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

Bill (it is only a joke)

 

[Luther Blissett]

I presumed that the "living dead" suggestion wad an Aussie wind-up. Apparently not.

Does no-one remember the sketch-perhaps it was "I'm sorry I'll read that again", which ended "and he joined the ranks of the living dead....yes,he became a Chartered Accountant."

Apologies to chartered accountants everywhere.

There is just too much baggage associated with this idea.

Sorry but I think anything that uses the 'Living Dead' sounds gimmicky, overblown and comic but not in a good way (reference to zombies), just my opinion.

People need to be afraid of getting ME - I know that sounds disgusting. But there won't be another motivation for them to get active (exception: they got ME themselves or know someone with ME, or they're one of 10 altruists worldwide ).

But when I look at the photos posted online, people are smiling and look reasonably well.
I guess there is a strong social bias to try to look our best in photos and in public. It feels really bad to say, but this seems like a bit of an own goal.

On the topic of "a living death" here is a slight reframe, inspired by Stuart Murdoch. I think this applies to people all across the spectrum, because who of us is living the life we used to have, want, or dream of living?

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...)

Fear is a powerful motivator but its not the only one, and pretending it is and using it as manipulation is a bad strategy.

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.

That man over there says that women need to be helped into carriages, and lifted over ditches, and to have the best place everywhere. Nobody ever helps me into carriages, or over mud-puddles, or gives me any best place! And ain't I a woman? Look at me! Look at my arm! I have ploughed and planted, and gathered into barns, and no man could head me! And ain't I a woman? I could work as much and eat as much as a man - when I could get it - and bear the lash as well! And ain't I a woman? I have borne thirteen children, and seen most all sold off to slavery, and when I cried out with my mother's grief, none but Jesus heard me! And ain't I a woman?

Then they talk about this thing in the head; what's this they call it? [member of audience whispers, "intellect"] That's it, honey. What's that got to do with women's rights or negroes' rights? If my cup won't hold but a pint, and yours holds a quart, wouldn't you be mean not to let me have my little half measure full?

Then that little man in black there, he says women can't have as much rights as men, 'cause Christ wasn't a woman! Where did your Christ come from? Where did your Christ come from? From God and a woman! Man had nothing to do with Him.

If the first woman God ever made was strong enough to turn the world upside down all alone, these women together ought to be able to turn it back , and get it right side up again! And now they is asking to do it, the men better let them.

Obliged to you for hearing me, and now old Sojourner ain't got nothing more to say.

Sojourner Truth December 1851

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.

The Convention follows decades of work by the United Nations to change attitudes and approaches to persons with disabilities. It takes to a new height the movement from viewing persons with disabilities as “objects” of charity, medical treatment and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.

The Convention is intended as a human rights instrument with an explicit, social development dimension. It adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. It clarifies and qualifies how all categories of rights apply to persons with disabilities and identifies areas where adaptations have to be made for persons with disabilities to effectively exercise their rights and areas where their rights have been violated, and where protection of rights must be reinforced.

https://www.un.org/development/desa...-the-rights-of-persons-with-disabilities.html

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.

Another such moment came when Elie Wiesel, chair of President Carter's Commission on the Holocaust, refused to include in a description of the Holocaust Hitler's killing of millions of non-Jews. That would be, he said, to "falsify" the reality "in the name of misguided universalism," Novick quotes Wiesel as saying, "They are stealing the Holocaust from us." As a result, the Holocaust Museum gave only passing mention to the five million or more non-Jews who died in the Nazi camps.

Respecting the Holocaust
by Howard Zinn
The Progressive magazine, November 1999

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.

 

[Allele]

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

 

[Inara]

Wonderful, @Luther Blissett!

 

[Bill]

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

Bill