Ideas For Marketing ME More Effectively...

Agree we need a slick and coordinated campaign, ME Action are possibly best placed to do this, or a number of skilled volunteers(designers, video production, animation, marketeers, branding, social media, copywriters, health messaging, Etc) Millions Missing shows there’s a lot of talent out there with some great posters pictures,etc and I’m sure there is a lot of expertise in the community. I would definitely help if I could or donate to something that focused solely on this. It can be really effective, I think The IcE bucket challenge raised over $100million dollars and I still remember the AIDS avert from when I was a kid. We desperately need an explainer video, and a series of ads videos highlighting the History, Politics, Harm, PACE, Patient experience, stigma, Abuse, neglect, lack of funding...

 

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".

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.

Tough call for us all.

Ideas?

Do we need to make accusations to individuals about being the next "Doctor Death"? Would editors bite? Or would they be too nervous to do so? Libel is a scary thing. Nothing can be done without extensive advice from lawyers I imagine.... and what editor really has the time or courage for that?

 

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.

 

@ukxmrv thanks for your response I read the article and I wasn't aware of the AFME campaign. I realise that a major hurdle for advocacy organisations is the lack of funding they have means marketing probably gets put at the bottom of the agenda with very little funding. And major hurdles like Powerful competing messages of wealthy organisations and insurance companies and government not wanting to spend on disability. And there other hurdles like having access to very severe sufferers t get their story giving the dangers of interaction. Etc...

I am just trying to think from the point of view of what the Organisations that are trying to achieve the most for us could do to improve marketing. We know journalists and tv shows are going to run stories based purely on views. So these organisations should focus on how they can present stories that will get that. Fear campaigns based on the worst possibilities of this disease in my opinion will lead to the most public awareness with fear which will in turn feed through to governments being moved to act based on wanting to win votes.

 

I think we've got the slogans we need, 'millions missing' is good, 'a time for unrest' is good.

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.

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

We need small actions like the protests, and lots of them.

And we need people with a public profile speaking out. Stuart Murdoch from Belle and Sebastian has been doing well recently: https://www.thetimes.co.uk/edition/...-opens-up-on-30-year-battle-with-me-wpbx6h2wg is just one article about him but there are more. Somewhere, I can't find it now, he said 'we believe in life before death' would be a good way to sum up ME which I think is good. One sentence isn't going to solve the problem though.

My thoughts would be to get behind ME Action if you can.

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.

IMO, good investigative journalists are going to get on board here soon - the whole saga would actually make a good book and I'm sure someone will realise that soon!

 

I played tennis myself - but not at Wimbledon of course!

Actually, ME is living death. A family member actually looks as if she's already had laid in the grave; that's not a joke, it's shocking.

I agree that big numbers can only be really achieved with emotions. You name two of those that render probably the biggest driving energy: dreams and fear. And I agree that fear is a very powerful motivator.

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.

We need big numbers.

 

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.

 

Agreed. Although it is very important to get across the plight of those seriously afflicted, the absolute last impression we need to leave people with, is that those less affected and who are not experiencing a living death, obviously don't have ME therefore, and are just wasters and scroungers ... back to square one!

 

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.

 

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.

 

I think as a charity tag line "living death" is not suitable, but if media used it instead of say "yuppie flu" that would help.

eg: ME, a disease described by the most severely affected as a "living death",. .. . etc.

 

Just saw this.
https://twitter.com/user/status/995377754018234368

 

This is effective:

https://twitter.com/user/status/995809028088397825

 

I agree that we need professional marketing--and lobbying.

With regard to OP's slogan suggestion I find there is a huge and important difference between the tag line ME:A Living Death and Disease of the Living Dead. The former describes something real, the latter conjures images of AMC's popular tv show.

A Living Death is a process, a lived experienced, something ongoing that can be related to and righted.
The Living Dead is an objectification, and a sort of fait accompli, and we don't want that.

ETA: Most of us don't look like "zombies" so I think this will simply further peoples' confusion and disbelief.

 

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

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.​

 

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?

 

Foggy here so hope I make sense:

I agree that clever marketing is needed, I’m not sure about the living death..it’s true but as it’s different severities it could cause some confusion? Maybe?

What stands out to me from Saturday’s (outstanding) Millions Missing (thanks to everybody who contributed) is that I know what that means now, so does my family and friends and a ripple effect is happening as they tell/show others.

The red placards and tshirts = Millions Missing = ME. The rows of shoes.

Just like when I see zebra print I think of Erhlos danlos, yellow is endometriosis. We have confusing things going on for ME..blue for ME Awareness, red Millions Missing. Hashtags are confusing for ME Awareness too because there’s a few.

Millions Missing trended on Twitter because everyone used that hashtag and red was prominent, it stood out. It worked. I identify ME mostly with Millions Missing and the shoes and the colour red. Could we all decide to use the same colour and symbols on social media..all join together, strength in numbers.

The Ron Davis quote above #33 is red, the message is powerful and shocking and scary..it conjures up a vivid image.

So, in essence, in my muddled up thought process (sorry) I think coming together (charities, groups, everyone who advocates for ME) could use the same colour, images, hashtags and, yes, I agree that a proactive marketing campaign is needed but I’m thinking that @JenB may be working on that with MEAction...they’ve made great progress with Millions Missing.

 

Any and all volunteers passionate about marketing, do email ben@meaction.net. The #MillionsMissing branding (the name) was developed by a marketing major. A former ad agency creative did a lot of our posters in previous years. More recently, we've had a lot of graphic designers come in and volunteer doing everything from T-shirt design to social graphics. We are also working on infographics and short video content. So we have some help from some really talented people, but need more. And we have some really great ideas from some really creative people, but also need more. Please do jump in! Email Ben and or join a group that calls to you: http://meaction.net/groups.

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 think these could be used to great effect (and over many different kinds of images).

This effort during #MillionsMissing 2016 was also really great:



Anyway, there are a lot of great people thinking about these things. We've also gotten some soft offers for pro bono support from various branding agencies and consultants (although these things don't always work out – we'll see). In other words, we're definitely thinking about this. Unrest was a major rebranding effort. Lots more that needs to come.

And for anyone new to the community, I highly recommend engaging on Twitter. Even more than FB I think, you'll see what ideas and images are already being created and circulated around the community. https://twitter.com/dfliesanddreams in particular has done some *incredible* visual design this year, all from her bed.

 

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. #MillionsMissing, to the extent that there is a unifying idea, is it. But we couldn't just declare it to be and we certainly couldn't have predicted how strongly people would respond to it, take it on as their own, and use it to organize.

20+ diseases have blue as their ribbon color. All ribbons have multiple diseases EXCEPT red (HIV) and pink (breast cancer) because each succeeded in branding those colors so strongly. No other disease has. I think these pins might have a shot:



Diseases represented by the blue ribbon:

• Addiction Recovery awareness
• Alopecia
• Ankylosing Spondylitis
• Acute Respiratory Distress Syndrome (ARDS)
• Apraxia
• Arthritis Awareness
• Beat Bullying (UK)
• Brachial Plexus Injuries - (Also Silver Ribbon with a bell)
• Canada's National Non Smoking Week
• Charge Syndrome (Royal Blue)
• Chronic Fatigue Syndrome awareness
• Colon Cancer
• Colorectal Cancer
• Cri du Chat Syndrome
• Cyclic Vomiting Syndrome
• Dysautonomia
• Dystonia
• Epstein-Barr Virus
• Erb's Palsy
• Familial Polyposis
• Foster Care Awareness
• Guillain Barre Syndrome
• Hidradenitis Suppurativa (U.K.)
• Hydranencephaly awareness
• Huntington's Disease
• Leukodystrophies
• Myalgic Encephalomyelitis (ME) awareness
• Myositis
• Osteogenesis Imperfecta (IO)
• Pompe Disease
• Restless Legs Syndrome
• Transverse Myelitis
• Stevens-Johnson Syndrome awareness
• Tuberous Sclerosis awareness
• Usher Syndrome
• Von Hippel-Lindau (VHL) awareness (blue)
• West Nile Virus