Ideas For Marketing ME More Effectively...

I used that headline to point out the power of marketing...How to get attention

My name is Anthony Ross. I am a former Wimbledon player, psychologist, and before becoming ill the head of a tennis psychology company where I learned the power of marketing in the years leading to my illness. I am now a bed-bound ME sufferer.

I have followed from my bed all the amazing advocacy efforts that the ME community is making. But what we need is to unify the marketing of the disease under one slogan/tag line that maximises marketing- an area that we are still completely failing.

This is simple and one image during the Millions Missing campaign stood out to me as the answer to this huge problem. it said 'ME is a living death'.

If we want to maximise advocacy in the next year, we need to get all Advocacy Groups to come together under one unifying slogan with the simple aim to market the disease under the following slogan:

ME: 'The Disease of the Living Dead'

People take action based on dreams and fear. With fear the most powerful motivator. There needs to be a focus of advocacy on the stories of the most severely affected, and how the person receiving the message knows that this disease 'kills' life and that they could be next just like all the other healthy adults who have been suddenly struck down.

 

In a way you get no argument from me, in another good luck.
I am frequently reminded of this comic



All that said specific ideas are good and we should consider them.
Perhaps even a primer on whats going on now with sufficient detail is a good starting point?

 

Ultimately, we need real media attention and the 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

 

I'm very much into systems thinking, your correct that headlines and discourse and education are needed to get funding, but a slogan is not going to be enough, its only one piece of a complicated puzzle to get the money and Grade A+ researchers that we need to solve this.
Why and how does media attention lead to funding, how do we attack this problem on all necessary fronts, how do we fast track getting those funds, how do we refute reality deniers, how do we command the narrative, how do we get researchers interested, how do we coordinate all this, what is already being done, how can we improve on it, how can we consolidate it if necessary, what is our specific goals going forward, what are we willing to do, what are not willing to do.
Then we need to see who we have on board, what are their skills, can we integrate them into our action plans (notice i say plans), do we have creative thinkers who can come up with good ideas, do we have people in the system, do we understand how the system works and so on...

If you want to slay a complex and powerful dragon you need a robust and durable strategy

 

All good points Alvin...I agree.

 

So how do you want to put your skills to use, join one of the existing organizations and help them with strategy, i mentioned the awesome product placement in the #MillionsMissing thread, maybe try and get some celebrity endorsements, come up with slogans, themes for future events, or maybe you prefer to start your own organization if you think that would work better, though keep in mind the comic i posted earlier.

I hope i don't sound like i want to dampen your enthusiasm, i just hope you use it in the most effective way possible

 

Not at all I appreciate your thoughts. I just think clearly the marketing of the disease has been a massive fail. The proof is in the pudding so to speak...

For the moment I am supporting my wife who is a teacher. We live in Brisbane Australia and she has a great idea where along the theme of ME being a forgotten disease she is going to kids from her whole school taught about ME as part of there Religion teachings along lines of being the forgotten sick and then get kids to write letters to patients saying that 'although our government has forgotten you we haven't and we are sorry for what our government has done etc... Some grades will also write to government officials...

 

I somewhat agree, though my views are more complicated and i'm in bad PEM right now so i'm not gonna go in any more detail right now

Cool, sounds like a start

 

Yes.

ME. The zombie disease that can make you a living dead without warning and without a cure. A catatonic hell from which there is no escape.

 

Speaking as a mild moderate person ...I like the living death slogan ...however it’s not representative for me since I’m not bed bound. I would feel like this was probably not the angle I would push if I wanted to have a message that had any numbers in it but I’m happy to represent the bed bound. It is powerful in terms of initial impact but it doesn’t lead to action....”so what” in other words. I say this as a marketeer not a dispassionate person who doesn’t care.

Having one unifying slogan is a good idea ...but like with most things in this disease it is complex since it has to be representative across a broad range of people. I also think it would be better to have a ‘call to action’ in it given the limited time we have to grab people’s attention. Of course with more modern campaigns you can do everything under themes, so slogans are only one piece of the plan.

I would prefer a range of slogans under one theme so people could pick the one that best represents them. You normally pick a few for different target audiences anyway in most campaigns. My biggest call to action/theme would be to demand fair funding for the 250 000 people in the UK (that’s not a slogan by the way just my small demand)

I agree it would be good to have more organised campaigning at the local level. It’s a shame our charities in the uk here don’t seem to want to mobilise and coordinate. I find this astonishing.

 

Cheers for your replies @Trish and @arewenearlythereyet . Trish I am not sure how to change the heading? Happy to if you can let me know how.

I used the term Slogan but what I'm talking about is a unifying very short term thats describes the disease. I agree ultimately terms like chronic fatigue syndrome, yuppie flu, even myalgic encephalomyelitis do damage. The first 2 are obvious but I read a good article by Scott Ludlam where he made the point that myalgic encephalomyelitis is too complex.

I realise that 'The Disease of the Living Dead' excludes a big proportion of the population but we need to focus advocacy and trying to move governments to action on whatever works to achieve that. For governments to act on mild/moderate sufferers we need biomarkers. Until that occurs our best bet is to focus on the severe, how common it is, and working on fear. This will then benefit all sufferers by getting funding which will benefit everyone.

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.

 

It's not representative of the majority of patients. About 25% of patients are severe and bedbound but of those only some are so severely ill that living death becomes an accurate description.

 

I know this figure is used a lot, but based on completely unverified and anecdotal evidence, I think that 25% figure is inaccurate and the real total would be far closer to 35 or 40 (it’s supposed to be mostly housebound or bedbound in the 25%). This is just based on what I see online on social media, on forums and on online support groups. Obviously there’s a bit of a selection bias, but I still think it could do with a refresh on that often quoted figure.

Edit: the reason why I think it’s important is that it frames ME making you housebound as in the clear minority even within the cohort of patients. So it presumes that there are 187,500 people in the UK feeling ill but milling around “like healthy people”. This doesn’t exactly engeder support from healthy allies.

 

I don't think many of the figures would stand up to scrutiny - the 250,000 has been around for at least 10 years...
From forums, I would agree re the 25% being questionable
Perhaps a poll both here and on MEA website @Russell Fleming
Our issues here are that you will simply fail to be diagnosed if you have mild ME

 

Although a poll would be quick and easy (I see the attraction!) we need proper epidemiology, not a poll. A poll would be enormously biased by the audience who reads it and their motivations for taking part. PWME who are online and motivated to complete a poll would probably be more likely to bed/housebound than other PWME.

I don't know whose responsibility it is to collect such data in the UK. @Russell Fleming, do you know this at the MEA?

 

Or shorter still: "Living Death Disease".

I gave a blog post that scary title once, and it got a huge number of hits. So I agree that it has impact.
http://sallyjustme.blogspot.co.uk/2014/08/living-death.html

I think it is fine to use for the Mild / Moderate too, because it's scary. I mean some folk get cancer (scary scary) but they get early treatment and recover to live on. No-one says "You only got mild cancer" the label itself is scary enough.

All ME has the potential to become SEVERE, so to me running with a scary scary name, is correct. You get ME? We want the world at large to think "SHIT! That's scary for you!" Just like with cancer.

Also means if people are worried about it, they are more likely to fund. Actually in many respects SevereME is much worse than cancer. At least with cancer, once you are so severely ill, you are likely either to pass away in a few months or if very lucky recover after a year from hell. With ME you could be stuck in that limbo ad infinitum - and that is way more scary.

So yeah. We need to use something scary to get attention.

However, I disagree about campaigns to date. I think #MillionsMissing has given campaigning a real boost. Going forwards perhaps we need to hit home with more of a shock value. So I take your points.

 

I like living death disease. I also agree that #millions missing is quite good. I think the #time for unrest is great for galvanising the community. But when it comes to the idea of a journalist writing an article or a tv show doing a 3 min clip on the disease and advertising the story along with other stories there is no comparison.

People act based on fears and dreams. And of these fears and trying to avoid those fears move people to act much much more powerfully in general.

I also agree that we don't need to mislead, just focus on the idea that 10s of thousands around the world (or whatever the best goes is) are living a living death and you could be next....

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 would think that the second headline will get 10 x the hits and that is what gets journalists to write about it-- how many hits they will get.

 

Rossy191276

It's not the first time that this idea has been mentioned and I am very grateful for the missing millions using that slogan. It's been used before on previous ME protests. I think that the missing millions publicity has been great and I hope that it grows.

We face a problem that there is a body of organisations and some patients working against us trying to push a different message and this has been the problem all along. We patients who support the "living death" idea have been outnumbered in media articles.

As an example see this report - she's not saying she's living in a "living death"

http://www.theargus.co.uk/news/16219467.I___m_living_with_chronic_fatigue_but_I___m_coping/

and if you have seen AFME Facebook campaign where patients are holding up a piece of paper few of them are describing a "living death".

We've always faced the problem that journalists don't cover this for us and some patients who do on to get publicity don't agree with the message