A Rolling Billboard for ME
An ally story & idea for advocacy
I’m excited to share with you an ally story from someone who has stepped up big time for me and the ME/CFS community. I met Bethany before I became ill through our local bike shop. We had a common interest in riding, but I’ve since lost my ability to ride. I’ll let Bethany tell it in her own words…
Countdown to Barry-Roubaix! The Barry-Roubaix is a killer bicycle race in Michigan. I initially registered for the 100-mile course, because that’s what you do in the beginning of winter, and you are full of optimism for all the training time you have ahead of you. But then March rears its ugly head and you get an attitude adjustment. I changed my category to 62 miles and 4000 feet of climbing. I probably could do 100, but it would be an absolute sufferfest and I ride bikes because it is fun, not a punishment.
If you read my Facebook post last month wrapping up my New Mexico trip, I talked about my friend Michelle, who has Myalgic Encephalomyelitis (ME), and that I would like to help raise awareness of this chronic disease. The profile has been raised a bit because long COVID closely matches the complexity of ME, but it is grossly underfunded in research (check out the video below). Not enough doctors have an awareness of ME, and many patients get bad advice like being told to gradually increase their exercise level, which pushes people further into the disease progression. ME is a neurological disease with significant energy metabolism dysfunction—there’s literally no ATP, cellular energy, for people to exercise. Sometimes even daily activities are beyond what their bodies can sustain. At its worst, people with ME simply exist—tube fed, on oxygen, and unable to engage in the world at all. If the car has run out of gas, it simply won’t go.
What this means, is that we are losing people from our society. They live with a disease that leaves them without the energy to fight for recognition, demand for better treatment from the medical community, the ability to lobby the government for more research funding and a clear path to access financial assistance when they are unable to work.
This is where allies can make a difference. When I ride the Barry-Roubaix, I’m carrying Michelle with me in thought and raising awareness by wearing a jersey with a message, that I designed through a company called Jakroo. There are #millionsmissing and I want them to know you are not forgotten and you are not invisible.
If you’re a cyclist or runner, consider making your own custom jersey to help raise awareness. If you’re a hiker or walker, make a T-shirt and do the same. Any platform you have, a local trivia night, block party, golf game, you can help raise awareness with this simple idea. Zazzle and Custom Ink are two great options.
This video provides insight into the disease:
This video provides an excellent overview of how poorly funded ME is in the US by the National Institutes of Health (NIH):
Advocacy organizations, like MEAction, are the engine of change for this community. If you’d like to contribute to the fight for health equity, please consider donating a few bucks to MEAction here.
It's so sad that in the most severe cases, ME sufferers need feeding tubes and oxygen.