We know people die from it, but others will argue - certainly CFS isn't on anyone's death certificate. Since CFS isn't real and cannot be confirmed in any way. Tha's the only thing that concerns me about actually saying people die from it.
It doesn't worry me about scaring the young ones - heck the young ones know people die from the flu - that's been emphasized enough lately
I think you should be more worried about scaring the little ones, my ten year old niece is absolutely petrified of swine flu because of the scare news reports and when her brother got ill (he's diabetic) she though he had swine flu and was going to die, that is something I would never want to see a child go through.
Also, we have a culture of ME/CFS being treated badly. Imagine a child getting diagnosed and then driving home past a sign that says it could be fatal with no word from a doctor? That's going to do harm and I know that no one's intention here. Chidlren are so fragile and a child with ME is even more so. Even children have to rule out fatal illness just to get a diagnosis and most of them don't die. What many of them do suffer from is depression, self harm and suicidal thoughts. The emphasis on losing your life but no dying is something that would have resonated with me, I would have thought 'yeah, that's how I feel'. Hearing that I might die on the other hand would have had other consequences.
It could look like it's trying to be scary. But the whole
ad could look like that, so for me it would not detract
overall.
My motivation is for people to see it from a distance.
People want to know about (sex and) death more than anything
else, so it will make them curious. I'm imagining subway
ads, pamphlets, internet ads to get variety. It must stick
in people's heads. Or is this too amateur?
Jason et al. 2006 needs to be followed up on. That will
provide better statistics.
I think having the missing people is a fantastic idea, especially as so many are rejected from their families, it would be great to show them a message which asks them personally to pick up the phone or visit and bring them back into your life. The missing person will bring an assumption that someone died and they'll read the message, it doesn't matter if it's not actually about death as long as they get hooked. As for sex I think an image of a missing man and/or woman in bed would be good.
A video could have a person fade out.
Or fade back in, saying, "Let's bring them back."
I like this, As the person fades out maybe there should be a voice over stating what CFS actually IS, or what we know about it. You could put it on Youtube as a focus group test, CTOT/Luminescentfeeling might be able to help with that.
Some great ideas.
Pre-CFS I worked on some training systems related to affective change (altering people's feeling about things). This is a tough communication challenge. I always tried to start with the final goal, then work backwards to figure out what type of messages will bring them through the necessary steps to change their feelings. Anyway, here are some thoughts about some possible goals, what is it that we want people to 'get' about CFS, maybe others have other goals.
1. Help people relate to how it feels to be taken 'out' of their ordinary lives and put 'into' a prison, a closet. That is CFS.
2. Help people relate to how their being in the prison of CFS would affect their family and friends. This is what it is like to live with someone who has CFS.
3. Help people know what it feels like to be marginalized when you are sick and need help. How it feels when others are in denial that you have a clinical condition, even though nobody needs to 'validate' that CFS is real. CFS was validated in 1989. Help the audience understand how it feels when others disbelieve them and rather than take the time and effort to empathize, deny and make excuses (the medical somatoform belief about CFS is actually excuse-making for not trying to help us).
4. Help them know how it feels to have an illness that nobody really knows how to treat. Despite the hopes for a retroviral explanation, and despite that a few good CFS docs have helped some PWC, real-world CFS cases are hard to treat, we need more help, more support.
Probably there are many ways these types of goals could be addressed in media campaigns.
These are really good points. I think showing the reject some people suffer from families, friends and coworkers is a good idea too.
I think, no matter what happens with XMRV, CFS OUT works! So does "Takes Lives".
But, Fresh, you are off to a brilliant start!
Many, many thanks for you!
I agreewith all this "Takes Lives" resonates with me as a sufferer.
Right *racks brain* any more thoughts from me... I like the missing people and the 'losing your life' message, I think this reflects the majority ME/CFS experience. I don't like the death stuff, maybe that's because I've never been hospitalised with ME/CFS although I've been bedbound for eight months straight once. Suicide has always been more of an issue in my experience, the loss of your life, identity, support system, finances, education, job, friends, pets, home, partners, children and your self has often led to self hate, self harm, depression.
I really hope that a decision is taken soon to pursue the loss of life angle and scrap the words relating to fatality so we can address the larger social issues we face in a more focused manner.
What I haven't said yet is that this is really professional looking work Fresh-eyes, you can see the energy in your work which is something that truely brings joy to me. The missing people thing is inspired and it can be built on in so many ways to highlight how research can bring someone back to their life, how acknowledgement from family can bring someone back a part of their life, and how doctor education... you get the idea.
Well done everyone for this brainstorm rather than brainfog, we truely are greater than the sum of our parts.
