Ideas For Marketing ME More Effectively...

No, I do agree it is something ME advocacy has fallen woefully short on, for the very reason people think it's not needed. The BPS crew are very "Sharpe" at it, to our cost to date.

The goal is to change people's hearts and minds.

 

Yes! We need to rebrand popular opinion, bc popular opinion was long ago hijacked by propaganda and misopathy.
The propaganda was itself disseminated by professional means, so we are now using professional means in our own right to get the truth out. So there is a little education mixed in, while the main goal is to turn the attention of the general public (including governmental entities!) to a truthful representation and understanding of our situation and of our requirements.

 

So, raising awareness and educating the public and the politicians is one big step.
Could take a while, though.
Until then, most part of funding will go to research of other diseases.
Can we hijack that? Become the inevitable control group of every research of diseases with related symptoms?
Let experts of different fields become interested in us, so that they'll use some of their money on us?
I'd love to volunteer...

 

@Trish , I read @Barry's statement to mean past advocacy efforts have fallen short in the rebranding arena (by no fault of their own,) not the more recent inroads by the excellent folks you mention.

Nor did I read him to mean to disrespect those past efforts--the time and the means were simply not ripe for it, and try as everyone did, we were more or less spitting into the wind.

But now we have a glorious moment, potent new means, and some brilliant rising stars in our sky of potential.

So yes, let's acknowledge everyone who got us to this moment, seize it for real, and rebrand ourselves into some major funding and research!

 

Yes, I quite agree. I'm optimistic that the tide is turning and that we are entering a new era where we can start driving the agenda.

Those who have taken the lead are to be congratulated!

Bill

 

I very much agree. I remember thinking that David Tuller's work was great but we needed to get it on a bigger platform to have more then a minor impact, and i have to admit i underestimated the positive impact of his work. Not to say i don't wish it was in a widely read journal but he is very much making a difference for us from putting the PACErs on defensive to giving us reference material to cite in legal proceedings. His work will be an integral piece to getting PACE retracted.

 

As usual, I've only really said half what was in my head Trish. Of course I agree with you about the wonderful work these great people have been doing.

@dave30th does fantastic work for us. Even so, I very much doubt, if you polled people in the street, that many people would have heard of him, and even fewer know what his message was. He is a fantastic advocate for our cause when it comes to logically picking apart the mess that is the BPS crowd.

The MEA etc do indeed do wonderful work, and I in no way mean to denigrate that. But I'm sure any organisation would be appreciative of ways to better get the message across.

@JenB and #MillionsMissing is primarily where I only half said what I had in mind, because to my mind Jen is the first powerful advocate to truly market the ME message so potently. Marketing goes beyond logical argument, hence winning hearts and minds; Unrest does that exceptionally well. There will of course be other advocacy that also wins hearts as well as minds, but Jen Brea really stands out.

Persuasive arguments may win minds but rarely win hearts. And sometimes you have to win people's hearts first, before they will even begin to open up their minds to any sort of argument, persuasive or otherwise. Which is where marketing come in.

It's all about combined endeavours.

 

I don't suppose I'm the first to have thought of this, but if we want a sort "meme" to encourage people to support M.E. patients and research, this might be a good song to co-opt.

The lyrics of this 1961 Ben E. King song seem fairly appropriate and there have been many excellent versions (done in a variety of moods), including this one.

https://www.youtube.com/watch?v=YqB8Dm65X18

 

Yes all true. I think though that the difference we're seeing is in the numbers involved. There were/are very dedicated people who have been hacking away at the indifference and neglect of the ME community. I'd name names but I'd forget some no doubt. But however many there were they were not enough -- I don't mean this as disparaging-- just that there needs to be something that unites a larger crowd so they are no longer working alone.

This has happened now and I think that whatever came before had to be what it was. A movement doesn't start by hitting the ground running full speed.

Certainly in the beginning few could give voice to what was really at the core of the problem even though now to us all it is quite obvious.

Maybe it's not admissible to say this but I find it sad that this idea of the pressing need for advocacy and activism has almost been extinguished on PR. There are so many people there who are ill and who could be involved and benefit. But it seems that mostly everyone wants to help self medicate. And that's fine as far as it goes but I'm personally sad that there isn't more effort made to show people the value in being part of changing the entire landscape of how ME is viewed in the scientific world. There have been inroads made certainly in the US especially but it's not a done deal. Even the researchers who care need support and continued funding.

Given how sick we all are we need as many people as can afford the energy to participate to keep the momentum and ensure that those already involved don't become permanently more ill as a result.

Many of the Peter Tatchell youtube videos are worth watching for insights into how to build a movement. There's one on direct action where he talks about arresting Mugabe.

Imagine someone citizen arresting S Wessely for crimes against people with ME.

In my dreams, as they say.

 

@Snow Leopard whrn starting the thread I had in mind the goal of improved marketing was to get more government funding.

@Trish I also ackknowledge and am very greatful for the truly amazing efforts that of all people who have done so much great work to get us to the point to where the tide seems to be turning.

I am simply looking from where we stand now...How can we improve the marketing of the disease to go from $14 mil per year NIH to what we deserve. The continued work on all angles that have been successful so far seem prudent.

In my opinion, from what I have seen the biggest gap in motivating action is that we have been unsuccessful so far in getting the message to the public of the torturous state of severe sufferers and that they could wake up at any time and become one of them.

This is a big gap in that people should be terrified of getting what in it’s severe firms has to be the worst disease on the planet to live with. Given the success of #millionsmissing maybe it best comes under that general movement of ‘we deserve a life before death’ focus.

I just don’t see governments taking deserved action on ME until they have the general public calling for it. And the general public won’t call for it based on the empathy engendered by #millionsmissing from their lives. The general public will call for it when they hold a justified fear of getting severe forms of ME themselves. It might come under the #millionsmissing campaign. Even though we can’t strike the actual fear of death like aids, cancer, MND I think we need to focus on the hell on earth that ME so commonly is, the suicide that seems so common when ME sufferers have no other option...and attach people’s minds to a greater fear of getting it. Overcoming the name CFS, the criminal PACE researchers, lack of funding to allocate tonthis, and our symptoms are still huge barriers to achieving this but if we want the funding we deserve the goal must be to get this message of fear out to the public.

 

I agree and i still would like to see his work published in a larger medium, it already does us plenty of good but seeing it do more is of course very welcome

Once PACE is toppled and we are further along i would support legal proceedings against PACE pushers for their demonstrated malfeasance. As i mentioned in another thread:
https://www.s4me.info/threads/how-l...g-against-conversion-therapy.3864/#post-68392

This seems to be your singular goal, make people fear ME so they will donate. I really think this is a mistake, in almost any disease people do know in the back of their mind that they could get it but irrational fear mongering to extract money is a bad idea.

 

From https://en.wikiversity.org/wiki/Motivation_and_emotion/Book/2014/Fear_as_a_motivator

According to protection motivation theory there are four factors that our behaviour is based on. These four factors are;

1. The perceived severity of a threat
2. Our belief/confidence in our abilities to react to the situation
3. Probability of threat occurring
4. The likelihood that a behaviour (Fight or flight) will work

It would seem that if messaging conveyed:

ME as a threat of high severity, and
surety that a remedy for ME would emerge,
and that the threat had a relatively high probability of occurring, then
people may be more likely to fight and take action / donate (vs flight)

I know for myself, I turn away from programs / stories about global warming / environment because I perceive the challenge as too great with no confidence in our global leaders to act, even though the probability of threat is high. I am taking flight (in denial).

So, it would seem using fear as a messaging tactic must also have a solution in order to elicit motivation toward our desired behaviour.

Incidentally, in addition to 'fight and flight' as potential responses to a threat, people also 'freeze' and in extreme situations, 'faint'. We don't want to elicit those either!

 

Unfortunately, everything we need takes money. We require a professional PR firm to shape public opinion.

Apologies if I've offended anyone, but that's my view on the matter.

 

I am sure the first step is a campaign to doctors that this is not psychological, the best way is to distribute a very short video of blood under microscope of a normal cell on CFS serum. Then wide distribute on places general population and doctors have access (We demonstrated we can trend as #1 on tweeter.

ME patients underestimate the numbers, we can make trend whatever we put our heads and efforts to. We have the numbers to distribute for free so we can produce cheaply and massively distribute ourself.

First thing is education of how really sick a cfs patient can be. A picture will always say more than 1k words.

 

Hi @Alvin Not my singular goal just my thoughts (perhaps ignorant to the challenge) of one piece of a complex effort to get more funding. Not fear monger just increasing the general public’s understanding of this brutal disease- I now know that this is one of worst diseases on the planet through experience. My expectation would not be to try to get the general public to donate rather that their interest in the disease would be raised because of greater accurate media coverage which would lead to more government funding.

 

There is no argument that this disease is stupendously horrible, and i suspect the PACErs would very quickly use such a campaign as fodder to discredit us.
I understand where your coming from, but it is my view that its not a good way to raise our profile and get donations.
I often think of this as a finely played game of chess, you need to make the best moves (and of course not rely on just one strategy) and anticipate counter moves and prepare for them.

 

Awesome!!

I would email ben@meaction.net about your interest and he'll get you sorted. I'm banned from creating more groups – we already have so many! But he can figure out the best way to get you hooked in.

God, this would be amazing. I don't know who would have the capacity, but I wish it existed. I'm excited about Gary's new podcast. I think the more of our own media we create, the better.

I believe this more and more everyday.

Absolutely. The power is in the synergy/health of the ecosystem. That's true in research. It's also true in advocacy/pubic outreach/activism.


Thanks everyone for this discussion. There's been so much progress but it's a BIG mountain left to climb. But I truly believe we've made a start. And that's exactly why we all need to push even harder.