Yesterday was International ME Awareness day and, for the most part, I missed it. I didn’t participate as masses of people with MECFS and an advocacy coalition of organizations protested a lack of research funding for the illness.
In years past I’ve participated with the MECFS advocacy coalition by writing blog posts and being active on social media, pestering politicians for the $100 million dollars in government research funding that we need and advocating for patients with MECFS. But this year I didn’t have my act together. It may have been because of the pandemic or it may have been because I’ve just lost hope lately.
The truth is it’s hard to be hopeful that a cure for MECFS will be found when the entire world is looking for a cure for a different illness.
Even so, some people have made the case that the COVID-19 pandemic will actually benefit people with illnesses like MECFS, that research may show that the coronavirus causes or contributes to lasting post-viral symptoms that are hallmarks of MECFS. And there may be something to that. I hope there is. It would almost certainly mean more research funding for MECFS, more treatments, and maybe even a cure. But that’s hard for me to imagine. I want to be that optimistic, I really do, but I’m also tired of getting my hopes up. I’m tired of thinking something will be a breakthrough and then watching it turn into a dud.
In the decade that I’ve been sick there have been countless times when I’ve put all of my faith in a potential breakthrough only to see it fizzle. Some of these things have been realistic, others have been far fetched, but they all have been failures.
A couple years ago, for instance, someone in the MECFS community went on Facebook and started posting about a new drug that was in clinical trials and he was sure it was going to be the answer for patients with MECFS. The drug proved to be inefficacious, but the worst part wasn’t that my hopes had been crushed, it was that hundreds of people likely saw the post and latched on to it for hope like I did. It’s a vicious cycle of hope and broken dreams.
I guess that’s why the search for a cure for MECFS through the global COVID response feels especially unrealistic. Call me pessimistic, but suddenly finding a cure for a disease that has seen little progress in the last several decades seems unlikely, no matter how lucky we get. And it seems even more unlikely when you consider that any progress that is made towards a cure for MECFS in the next couple years will likely have to be tied to coronavirus research since that is what the medical and science world is focused on right now.
I’m not saying it’s impossible, I’m just saying that it requires a level of optimism that I’m struggling with at the moment. I guess you could say that I’m hopeful but not getting my hopes up. As I recently wrote on Twitter, maybe the intense focus on the COVID will somehow further the research into other viruses like Epstein Barr and cytomegalovirus, which often leads to cases of MECFS. The more I read about patients with coronavirus, the more I wonder if the mechanisms of MECFS, which we know little about, may end up being similar to those of the COVID. Maybe it will take something as unprecedented as this pandemic to produce an even more unprecedented outcome for MECFS patients and our advocacy coalition. For the sake of everyone with this illness, I hope that the one time I don’t get my hopes up we will finally get the breakthrough we’ve all been waiting for.