Thanks for trying to help us. In Australia there has been a TV commercial campaign in recent years educating about depression. And it's been effective in raising the awareness of depression which also had it's stigmas but is now very respected and you'd be called irrational not to believe it is real. And i will add, that depresion is a completely distinct disorder from ME/CFS i just mention it here because it's an example of a disease being marketed to the public.
I've long thought that if a marketing campaign did the same for ME/CFS it would be a huge help for funding, ultimately the funds go to things people respect and know about. So I'm very happy to have anyone on board who can help get us closer to that goal: raising awareness and educating.
I don't think a tagline with the word belief in it would be helpful. It implies we want to be believed - as if the person has a choice whether to believe us or not - and we hope they will choose to. But, It is no longer a matter of choice of whether to believe anymore... if you read the facts about ME/CFS in the IOM report and delve into all the studies that have been done, and even just use logic i.e. there are millions of people across the world all claiming to be affected by the same group of symptoms... it is apparent that (unless you are a conspiracy theorist and not a rational human being) there is a disease here and these people are suffering. No one has ever seen an electron, but we know they are there because the facts are overwhelming. ME/CFS is at this point.
If you do not recognize ME/CFS in the year 2015, you are going against reason and science. Period. Belief is irrelevant to the discussion. The facts speak for themselves. I think people need to be educated about what is going on in the medical community (outside their own lives) about the current state we are at with ME/CFS (i.e. it is not 1996 anymore where the suffering or realness of it etc is open for discussion). I think, rather, i know.. people are just not aware of the current state of research, science, scientists working on it, reports (IOM etc) that have happened in recent years.
So i think any marketing campaign needs to FIRST AND FOREMOST change the public's perception of this disease... and establish credibility... and do so by supporting with the reality and facts that are available.
There is enough evidence for ME/CFS... in the year 2015 (it is not 1996 anymore)... that any rational, reasonable person cannot deny that it exists... even if they want to quibble on some points. But most people simply have not been educated on the current state of ME/CFS. And that's what i believe the marketing should do.
The dictionary says: Belief is the state of mind in which a person thinks something to be the case, with or without there being empirical evidence to prove that something is the case with factual certainty.
Many with ME/CFS have spent there lives trying to be believed (before we had the current knowledge/facts - IOM report, etc - that we now have at our disposal to point to... which make someone who doesn't believe it look pretty silly if they pride themselves on being a smart/rational/scientifically-minded person). We don't need to ask to be believed anymore, we are past that. And using the word belief implies we are asking them to believe something... when we don't have to... the facts are there. It's time to recognize! People are selfish and given the option of dismissing someone else problems and returning to their own (much lesser) problems... they will... so why should they be given the option to "believe" us. Especially when it is not a question of believing but opening their eyes and seeing. And they will see by being educated.
So a simple tagline along the lines of ... "Help us fight our disease" is something i prefer. Then the the campaign would highlight facts etc that are going on in the medical field in 2015, IOM report etc. We need respect/credibility brought to our disease and only if we get that will we succeed in solving it/funding etc. I think a tagline asking people to believe us is a step in the other direction... back where we were 10/20 years ago.
It's no longer a question of belief... the facts are there... it's about getting our disease recognized. We need to state boldy that it IS a real disease and educate people on this with the evidence (which we have) to support it. Asking people to believe us... gives people a choice to believe or not to believe. You would not see a campaign for Cancer asking for people to believe. That would sound odd. With the facts on the table regarding ME/CFS in the year 2015, there is enough evidence there that someone choosing not to believe looks irrational. This should be our marketing campaign. People need to know there thinking and perception of ME/CFS has not caught up to date with the current thinking of top medical institutions like the IOM, etc. They need to know their perception of ME/CFS is out of date...
As for stigmas, ill add my thoughts:
Stigma 1
-People with ME/CFS are malingers/lazy. People with ME/CFS have always been unsuccessful people due to laziness. They just want hand outs and to take it easy. Just like any other disease: ME/CFS can and DOES affect anybody from any walk of life. It affects people who came from all different occupations: Judges, Athletes, Sports Stars, Scientists, Carpenters, Lawyers, Investors, Hairdressers, Garbage-Truck drivers, Entrepreneurs, PHDs, etc. People need to understand this - and how do you make the under - by telling them it. I was an Entrepreneur myself in the feild of digital marketing - and i sold my business in 2012 for close to $500,000 - just after i got diagnosed and became housebound/bedridden with ME/CFS. I'm not saying this to boast (and, i know, many people have been much more successful financially than me) but i say it to prove a point we are not malingers or unsuccessful members of society. Cancer affects anyone no matter their occupation, so does ME/CFS. I feel that point needs to be driven home. I was lucky to achieve some success before i got sick, and it allows me a lot of leverage with doctors, friends, etc. My heart breaks for people who got sick before they could accomplish some of their goals... who absolutely would have if they did not get sick.... and cannot rebut some idiot who just thinks they are lazy like i can with the proof of what i accomplished before i got sick.
Stigma 2 (And i believe this is the worst Stigma holding us back)
People think ME/CFS is less bad than it is. It is a very under-respected disease. I often say it is like having Cancer, but you just don't die. I remember a friend of mine who had Cancer who was able at one point to kick a ball at the park and he became very fatigued and had to sit down. If a passerby said "Why is he sitting down?" and you replied, "He has Cancer" instantly they would understand and respect why he was sitting. But if you said "He has ME/CFS" it's a different story... EVEN-THOUGH someone with ME/CFS would feel EXACTLY THE SAME fatigue and weakness as my friend who has Cancer in that example. And the person with ME/CFS may even have worse fatigue - many cannot even get our of bed. (A related goal is to educate the public that, like with most diseases, there are degrees of severity of ME/CFS. That is important! People assume that because they know someone with ME/CFS who can play tennis once a week (who would be considered to have very, very mild ME/CFS) that ME/CFS is really a very mild disease. I personally hate this, because while i know that that if that person did not have ME/CFS they would probably play 3-4 times per week (so it is affecting them) other people like me cannot even walk to the back of a supermarket.
Stigma 3
It's not just fatigue. The severe muscle pain i am in all the time is often worse than the fatigue. Due to this muscle pain i cannot be on my feet more than 10-15min per day or the pain in my legs gets so bad i cannot sleep that night. Likewise, typing on the computer like this will cause severe pain in my arms and upper body.
Please appreciate we are very happy to have your help, but you did ask for our opinions and unless we speak candidly to you how can you really get a good insight into our illness so you can market it effectively. I don't usually get involved in writing on the forums due to it worsening my symptoms, but i felt great responsibility to speak candidly about something as important as a marketing campaign for ME/CFS... so that i helps us go forward, and not backwards.
Because ultimately the goal of such a campaign is to help us get funding and a cure for our disease... so we can start living again. The alternative, no cure, for me personally is torment: being in constant physical pain, watching life go by on me, not accomplishing my goals (the hardest part for me because i am such a driven person) while others dismiss my illness simply because of the stigma attached to it.... a stigma that still exists only because they have not been updated with the current facts/findings/medical reports about ME/CFS.
I don't have the "slogan word", but something that describes the SIGNIFICANT change in ones ability to engage in life again.
