We need Public Relations. That is going to be true today, tomorrow, and the day after the NIH study is published. Yes, it will get covered by the media. But then the study will fade away and the media will stop covering it. They will stop covering it because patients don't make any news for them to cover. The NIH study does not mean the messages we want to convey to the public will get there.
Public Relations for our disease is needed. It will be needed after the NIH study is published and after all subsequent rumored positive papers are published. However, just because we have a message to give to the public does not mean they want to hear it.
If we want the public to hear us then we need to tell the public what matters to them, not what matters to us. This is what will make the public care what matters to us.
What matters to the public is what is newsworthy, and what affects their family, friends and neighbors. How can we ever hope to win the public to our side if we are only interested in talking about ourselves?
We can hook the public with several newsworthy facts that are about them. That is how we make the public care. Journalists care about newsworthy facts. Politicians care about what effects their polls, and their support from the public. The public cares about what influences their life, and the lives of their family and friends.
Here are some of those issues the public is going to care about:
1. CFS and its link to XMRV
2. How many healthy people may be walking around carrying XMRV (4% of the population, possibly 7% of the population if we go by the Alter slide)
3. Three countries have taken the precautionary measure of banning people with CFS from donating blood, but the U.S. has not. While a lot about XMRV is unknown, just as a precaution, the blood supply needs to be protected.
Now these things don't say anything about patient care, problems with the CDC website, problems with our name and diagnostic criteria. Those are our concerns, and they are valid concerns.. But they cannot be addressed all at once, and nor will a public listen to it if they don't understand in the first place why it matters to them too.
In addressing the public, we must think first and foremost about their concern, rather than our own. We need to make ME/CFS matter to every part of society. We can't do that while we're telling the public only what concerns us.
To illustrate my point, I would like you to think of this scenario. You turn on the tv, and there is an ad about purple disease. You've never heard of purple disease before. The commercial tells you there has been a fight about the name of purple disease, some want to call it blue, others yellow. Patients with purple disease want lots of things. They want recognition. They want help. They want money for research. They want drugs to fight purple disease.
How fast would you switch the channel? How does the fight about purple disease affect you? Do you care about purple disease research based on this ad? What does purple disease have to do with you and your family? Why would you give a dollar or lift your finger during your busy life for something that does not touch your life in any way at all?
Now imagine a different scenario. You turn on the tv, and there is an ad for purple disease. You've never heard of purple disease before. The commercial disease tells you what purple disease is, and that it's been highly associated with an infectious disease. You hear other countries are taking action to make sure that the public is not exposed to this disease through the blood supply. You are told how many people may be carrying this infectious disease. You are told about outbreaks and stories about blood transfusions where people developed purple disease shortly after. At the end of the commercial you are asked to go to a website to donate and learn more about purple disease.
Do you care about purple disease now? Do you see and feel how purple disease could affect your family without ever actually using the literal words? Without being told all the issues that concern patients, does it now concern you? And now that you're concerned that purple disease is a serious thing what are you going to do? Hopefully, you are saying "yes, yes." and nodding as you read this.
Yes, we need the public to care about us. We need the public to be on our side. We need the public to run for us, walk for us, donate to research, write letters to the government on our behalf. We need politicians to move mountains.
Please ask yourself, why would the public care about our concerns if we are not putting the concerns of the public first?
We only have seconds to reach the public, before they turn the page, before they turn the channel. We live in the age of the soundbyte. Where words and entire sentences are reduced to letters. How fast do you stop looking at things that have nothing to do with you? How quick do you tune out from messages that are not thinking about your needs, or your life?
To get the public to care about us, we have to talk about their concerns as it relates to us first.
Those concerns are XMRV and the blood supply.