Ideas For Marketing ME More Effectively...

Thank you so much for doing that, Inara. That was a lot to transcribe.

That was probably it, my memory is so hazy. I thought there was one that specifically mocked CFS patients,
but maybe it was that EBV one, or that horribly cruel piece of disdain written by the staff.

Either way, we've been up against bigotry for a very long time!

Thank you again, Inara, I really appreciate your hunting that down.

 

I pondered that one (showed up in thesaurus), but felt that "ME: When activity makes you sicker" smacks too closely of "when life makes you sicker" - I feel it gives the impression of depressed people giving up on life. But just my opinion.

 

great ideas and enthusiasm, and great topic, but i find
myself discomfited by this thread. it has "caution" written
all over it.

===

fear is already the go-to motivator for political actors.
the market is saturated in many places.

imo, while we can use fear appropriately in specific cases,
we also have better options in many cases.

i will make a proposal at the end of this post.

===

as others have eloquently mentioned, /if/ you want people to
fear, you do not want them to fear a population. you want
them to fear a disease itself.

there is too fine a line between the two fears. this
concerns me in an age of outgroups. subtlety is /not/ the
order of this age.

the bad guys have demonstrated that many audiences are not
good with subtlety, by glossing over critical details that
nobody cares about. we have had enough of being
deliberately cast as an outgroup by them.

===

also, i think while slogans are needed, they will usually
have to be backed up by a prepared story. a coherent
package that everybody can grasp and believe.

we are still refining our story. this has taken many years.
learning m.e. is drinking from a firehose, but it need not
be. we just have to polish the story (or stories) a bit more.

slogans and hashtags have their uses.

but to create a movement (instead of a community +
twitter slacktivists + early adopters), i think we need that story.

===

finally, before i get to my proposal, i want to say that for
example stimulation overload is every bit as much a
crash-causer as exertion or activity. everybody associates
the latter with physical or cognitive only. and they define
it as the opposite of laziness. "what could go wrong?"

but i think it might be useful to focus, not so much on the
facts of the disease, but on what will be compelling.

here's my proposal:

===

our war for enlightenment -- fighting back and making
science possible, for example -- is compelling!

there are people who will want to join that fight, if we
invite them correctly.

my guess is that part of inviting them correctly is [1] distilling the facts (no firehose), [2] forming a meaningful story, and perhaps [3] giving it an
ethos appeal that fits both the times and the audience.

===

to that end, i think we need to keep in mind bill moyer's
point here:

> Movement activists will be successful only to the extent
that they can convince the great majority of people that the
movement, and not the powerholders, truly represent
society's values and sensibilities. -- [bill moyer the activist and theoretician of stages of movements, not bill moyers the journalist]

(warning: i might repeat that quote in blog posts, because i
think it's worth it.)

===

it can be useful to consider
george lakoff's theory about framing:

>You need ... (2) to communicate the general ... value
system, (3) repeat the truths that reveal what is right
about those values, (4) act with courage to promote the
sense of courage, confidence and hope that allows the truth
to be meaningful and powerful. Within such a context, one
can honestly and openly discuss the facts that undermine
such fears, so that the illegitimate fears don’t get
established in the first place. --
https://www.huffingtonpost.com/george-lakoff/disaster-messaging_b_639040.html [ignore the politics]

===

here's a rough example of a possible story:

===

we were ordinary people minding our own business.

and just because we got sick, we got hit by a hitherto
unrecognized sociopolitical force [for copious citations
cilck here, or keep reading the story]. [note: don't be afraid to
teach misopathy.]

btw anybody can get the disease but never mind that for now.
btw anybody can be mild today and severe tomorrow but never
mind that for now. we fought steep odds and profound creepy
evil and are starting to win. [here are is a challenge we faced and overcame.] we fight for science, human rights, and more enlightened times.

come, make the kind of world you want to live in. show the
powerholders that they do not own everything, least of all
your conscience. we're meeting in the chemistry building
atrium on west campus at 7pm tuesday. we're well-organized
and friendly. naturally, /you/ get to choose your level of
engagement, from zero to BADASS.

===

or so.

===

ETA: i view this as 100% compatible with the op's "There needs to be a focus of advocacy on the stories of the most severely affected, and how the person receiving the message knows ... they could be next...." we must mention those points every time. but the /story/ that surrounds them need not necessarily focus on fear. people will draw the correct conclusions from the facts if presented correctly. [they might even be /more/ impacted by them, because they noticed them themselves.]

 

That can't happen while the film is on Netflix (they demand exclusivity in most regions except the US, where they have a special relationship with PBS). We pitched to UK broadcasters for three years and had probably three or four different meetings with one broadcaster. They were totally uninterested. They later saw the film and loved it so much that they thought they had acquired it. Actually said, "Brilliant film! So glad we acquired it!" *HEAD SMACK* If we had gotten a broadcast offer in the UK, we probably would have taken it because I know what the impact would have been. There may be scope for broadcasting it in a few years' time. That said, I'm really glad we are on Netflix because they are in so many countries and so many languages. I know it's making a difference for people in places that we would never otherwise reach.

Another approach would be to create five to ten minute documentary shorts for web, upload natively to Facebook, and advertise them. You can get hundreds of thousands if not millions of views that way. We have so much footage, there is a lot we could do. I hope to have more time in the fall to focus on that. And of course, they each could direct people to take action, watch Unrest, donate, etc. And you could even customize the "call to action" depending on the audience you're advertising to. When we marketed the trailer around the theatrical release of Unrest, we "targeted" patients, caregivers, people from other chronic illness communities. We also targeted medical professionals and nurses, and the content was as popular with them as it was with patients. So I think there's a lot of scope for doing, essentially, medical outreach and education via Facebook.

 

When targeting medical professionals, I would urge to not overlook ambulance crews. I encountered an ambulance man who I have the greatest respect for, and is truly dedicated, but was completely dismissive of PwME. Largely because ME is the "great pretender" amongst illnesses, masquerading to the unaware as malingerers' symptoms. When I quizzed him he was saying things like "Well, they always say stuff like 'I've got POTS', or 'I've got fibromyalgia' , 'I've got this, I've got that', etc - you can just tell!". He did back off (genuinely listened I think) when I told him fairly emphatically how my wife used to love walking in the national parks, and had her own gardening business etc, and I mentioned Ron Davis and his son. Ambulance crews are dealing with people when they are at their most vulnerable, and for PwME that can be especially vulnerable. Ambulance crews especially need to be included in any education I think, because they are incredibly dedicated and normally very compassionate, but are just as deluded as the rest of society when it comes to ME.

 

Glad there's an upside! It would have been so great to have shown this in the UK (as Ground Zero for all the BPS rubbish).

Sounds great!

Hard to understate the impact of something on terrestrial UK TV, though - even in terms of people just seeing the trailer for it while they're watching other programmes on that channel. I hope we can get it shown here eventually.

 

@JenB have you thought of doing something with the 'voices from the shadows' team?
http://voicesfromtheshadowsfilm.co.uk/

 

Would definitely be open to it! But as of right now, I don't have plans to shoot more footage. We have loads of footage that still needs to be edited.

 

@JenB Although I agree that a showing on UK terrestrial TV would have a HUGE impact, I think that its really positive that you had this response - it definitey bodes well for a future showing of Unrest and maybe other projects. And perhaps Unrest has woken the BBC up a bit on this issue and maybe fed into the recent BBC3 documentary with Emma Donaghoe which was excellent. Did you approach the BBC Radio 4 program 'Woman's Hour' at all? I've been emailing them regularly to ask them to feature Unrest/Millions Missing - but no response yet. As this is an illness that affects so many women it seems that it would be a perfect topic for them and they get a lot of listeners.

A few other thoughts in response to discussion above:

My instinct is to stear away from the word 'tired' - I think there are too many connotations and its too easy to say 'oh, I get really tired too.' I spend half my time explaining to people that tired is actually not my main symptoms (flueyness and PEM is) so I don't particularly like it when coverage of the illness talks simply about being tired all the time, or even just about fatigue. There is so much more to this illness. I think we have to say over and over that it's a complex multi-system disease.

Also,

I agree. And I think it's not accurate. When I'm really sick I don't do anything normal people would call 'activity' and yet I'm still sick. This gives the impression that if we lived a quiet slow life we'd be fine, if only! Again, - this is a complex multi-system disease.


Finally, just a little pondering I though I'd share! I've just got back from a Dr's appointment (first time out the house in a while). I noticed some tiny blue forget-me-nots growing through the concrete just outside the surgery. It seemed like such a good metaphor for us all. If ME was to have a representative flower it should definitely be the forget-me-not.

 

Forget-ME-not

 

Exactly!!

 

OMF are already using it:
https://twitter.com/user/status/997118289510723589

 

Lovely to hear of the Forget ME Not idea. My new garden has lots and I was thinking of creating an area with blue flowers, designated to ME patients and those who have passed. As I left my old garden they were the flower I noticed growing at the front door and my thoughts were exactly that. Forget ME Not.

Small garden but sure to think of something suitable.

 

Forget-me-nots are wonderfully symbolic of things beautiful, gentle, and above all, survivors.

 

@Luther Blissett, I had to think and think about your post.

I agree with what you say with all my heart. We should aim at creating humanism, love, empathy.

I return to thinking that it's not the time for us to go this way. It's not the time to address empathy in people. It's not the time to stress human rights and that we're humans.

It has to be done! I try to do it.

I am just not so sure if we'll have success that way. It needs a lot of preparation and activism.

My impression is many people today don't see human rights as valuable - as something that needs to be heeded, that needs to be kept alive, that needs to be fought for, even today; especially today. I see that people give up their (human) rights, although it's due to pressure. They don't fight against that pressure but succumb - we should come together and do it together. It's understandable but it's dangerous.

Empathy, it seems to me, is viewed as a weakness today. It is increasingly viewed as a factor to success to be "cold".

You need to do a lot to show people the importance of humanism, human rights, love and empathy, and I'm not sure we with ME can accomplish that. There is a powerful opponent.

We still have a goal: research, recognition, help, cure.

Edit: I read @Samuel's post above again and would like to highlight it. I think there's much in there that can be used.

 

I think the chances of getting any form of cancer is 50%. This is quite scary and good for fear marketing. Fear of getting ME is so much smaller I think unless it was 15% or higher no one is going to worry about this.

And if you then exclude mild people like some are advocating (not you Trish) the number is a lot smaller. You need the mild people to make up a decent number. Also that is 75% of patients so why do these get passed over? ...it’s not like being mild is a breeze.

I think reading through this thread, fear of being a zombie or having the living death probably doesn't have as much legs as going for other things that is more representative of the whole group. I think fear of being on the scrap heap and the injustice vs other illnesses is the way to go and actually if you look at what meaction is doing these are the main messages they are already using.

I think more important than the actual message is having a broad range of media to get the message to a broad range of people (it’s an awareness campaign no?). Relying on twitter and face book is a little restrictive from a marketing point of view.

As a non millennial I find the “hash tag whatever” thing cringeworthy and something that turns me off. I am definitely not alone in not being connected to Facebook or twitter and this is why most marketing campaigns don’t just rely on social media. Expanding marketing into more traditional media to spread the word to include a wider age group seems sensible. Problem is this costs a lot more money and so you then have a chicken and egg situation in terms of funding.

We really need a wealthy benefactor, but I think creative thinking could give us something even if it’s local leaflet drops or displaying small posters in people’s windows. Perhaps a paid for poster campaign around the venues for the demonstrations (e.g. tube station posters etc).

This is still pricy and could run into quite a bit of cash for each demonstration.

 

Only just seen this thread as I'm way behind on my forum reading. Before we throw away the living death thing completely, perhaps it would be suitable for the Simon Wessely biopic - Knight of the Living Dead?

 

@TiredSam, I'm 66.7% sure you're on a roll today!

 

I'll take 2/3s for $1000 Alex, as long as the answer is the daily double