TL;DR summary: An attempt to explain, from my completely unofficial point of view, why this campaign uses personal stories.
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I hope no one feels pressured to tell their personal story! It's perfectly fine if folks don't want to share their story. If this campaign does not feel right to you, for whatever reason, please choose some other way to participate in May 12 advocacy.
I hope my reposting links from #MEAction does not make anyone feel like this campaign is the only way! Please do whatever action(s) feel right to you. There are Blue Sunday tea parties, for example.
That said, let me share some thoughts on personal storytelling and its impact on change, especially when it comes to politics.
I used to think that the most important way to impact politicians was by using data. Show them the numbers and surely they will get it. Show them how underfunded ME/CFS is. Show them how many people in their district probably have ME/CFS (e.g., take district population and show the estimated number with ME/CFS based on illlness prevalence). Share the relative disease burden, and the percentage of patients who are able to work, if you can find that information. This is the kind of data I used to include in my letters/emails to my Congress reps.
Then in 2016, as part of an #MEAction campaign, I had an in person meeting with my US Congress Representative (actually, I met with one of their staff members). I was surprised to see that the impact from telling my personal story was much stronger than any of the facts I shared. This person was more receptive to my list of "asks" (I can't remember what goals we had that year) after my story was finished.
I can't tell you exaclty *why* it worked so well, but it did. And it finally made sense to me why so many advocacy campaigns - not just for ME/CFS, but also for many other causes - rely so much personal stories.
Another factor to consider is that these representatives and their staff can change over the years. I got a new congressional representative a couple years ago (redistricting). But even when the representative does not change their staff often has turnover. This means new people might be screening email or answering the phone. My email might be how they first learn about ME/CFS. So each time I share my personal story, whether it's via social media or as part of an email/phone call to my congressional rep, my story could reach someone new.
The last factor to consider about why this campaign was chosen is that in the US there are laws being proposed to change Medicaid eligibility to add a work requirement. (Medicaid is a government insurance program) People who have a disability are supposed to be exempt. But we know that folks with "invisible" illness have trouble getting disability insurance that would show they can't work. Many people with ME/CFS, Long Covid and other chronic illnesses do not have any official disability determination to help them get an exemption.
Telling personal stories is an attempt to convince lawmakers to put these illnesses into a category where people will qualify for Medicaid without having a work requirement. Again, this storytelling tactic seems to work well when talking with legislators.
I'm probably not doing a very good job describing this so here's a quote from the #MEAction website:
This #MillionsMissing, we are Frail and Furious! This May, we will come together to show the world how devastating this disease is. We ask you to share your story on social media, once again, about what it’s like to live with this serious, complex medical condition in order to get the recognition we need and deserve.
In the U.S., new Medicaid rules will force people with ME and Long COVID to work 80 hours per month or lose their government health insurance, unless they can prove they have a "serious or complex medical condition” in order to get a "medically frail" exemption.
We know that both are true for the majority of our community but, once again, we are having to fight to prove this to our health leaders. When ME is overlooked, people are denied the protections, services, and support that medically frail patients are supposed to receive.
I know this post is long but I hope at least some of it was helpful.
www.meaction.net
docs.google.com
