Here is a very interesting post by Patrick over at Quixotic: My M.E. Blog that I thought was worth reblogging here so my readers could mull over his questions:
Did we make an impact? It’s hard to know whether the message is spreading outside of our community or if we’re just passing the message around inside our own echo chamber. I have to believe that we’re making small but steady strides, but it’s hard to make a big impact on public awareness when there’s so much noise competing for people’s attention. And if we do get people’s attention, what exactly is our message?
I’ll get to that in a second, but first let me back up.
Sometimes I feel like there’s more that I could be doing to help our community. Other times I wonder: isn’t it enough to just be looking out for myself and my family? After tending to my own health issues, I’m not sure how much more of me is left to give to community issues. I suspect that’s a feeling that many of us face. So if we’re all struggling to get by, how do we build an impactful movement?
And yet we all see these large, grassroots efforts being undertaken by other patient communities. (Think MS, with its huge charity bike rides, funding drives, etc.) Aren’t MS patients in a similar situation, with little leftover energy to give to the community?
I suspect that the major awareness and fundraising efforts put forth by other patients communities are driven, in no small part, by the work of doctors, nurses, family, friends and loved ones who support the patients — not just the patients themselves. So it begs the question: why not us? Why haven’t we organized the same support network that would be essential for larger awareness and fundraising drives?
Part of the reason is that our illness is so poorly understood that many of us can’t even get our own families to take it seriously (not counting me). There’s this kind of frustrating circularity to our problem here.
ME/CFS is very poorly understood in the medical community—>Why is it poorly understood in the medical community? —> Because researchers can’t agree on the root cause or biomarkers? —> Why can’t researchers agree? —> Because there’s no research funding to chase promising leads —> Why is there no research funding? —> Because there are no major funding drives/charities/organizations —> Why are there no major funding drives/charities/organizations? —> Because ME/CFS is not viewed as a “serious” illness by most —> Why is it not viewed as a “serious” illness by most? —> Because ME/CFS is very poorly understood in the medical community —> [Back to the beginning.]
So the challenge is to break this cycle. These awareness campaigns are designed to break the cycle at the second to last step above: the “serious illness” step. In theory then, having solved that issue, the remaining problems would gradually solve themselves in the reverse order, working backwords to the beginning of the list.
But the thing to keep in mind is that the awareness campaign is only the first half of that step. Why? Because it’s not enough to just make people more aware of something. People are never motivated to act on something merely by being aware that it exists. An awareness campaign basically just primes people’s minds to be more receptive to the full message that follows. It makes people curious enough to want to learn more.
Then the question is, what are we doing to follow up on the awareness campaign? What are we doing to educate people once they’ve become receptive to the message?
So the next challenge is to develop our actual message. Because you have to admit, we don’t really have a unified message. We all have different levels of functionality, different theories of etiology, and we all seem to be pursing different treatments. We confuse ourselves with our own cross-talk, so how are we supposed to present a unified, intelligible message to the average, healthy Joe?
That’s the next step. That’s the challenge that I believe we need to be working on now.