Most of us have been stuck at home for nearly two months. As one of the millions of Americans with debilitating chronic illness, I’ve been stuck at home for the past 10 years.
I have a condition called ME/CFS. Since my diagnosis, I’ve had to drop out of my pre-med classes, limit visits from friends, and give up any hope for a family of my own. And I’m one of the lucky ones. I’m able to work from home, I can take short walks around my cul-de-sac a few times a week, and I have a supportive husband.
There are others with my condition who are completely bed-bound. There’s a video on YouTube of a girl named Jessica sitting up for the first time in seven years. Some might think that video is inspiring; for me, it’s terrifying. That could be my existence if my condition worsens.
In a way, I sympathize with the protestors railing against the depressing reality of being isolated at home. I’ve spent the last decade living in that same frustrating existence that has driven them to protest in a matter of weeks.
But I know something they don’t. Two things, actually. First, I know their actions are spreading the virus. And, secondly, I know, more than most, just how much a virus can devastate a person’s life — even if they survive.
See, my ME/CFS was triggered by a viral infection. And I’m not the only one. Epstein-Barr, Coxsackie B, and SARS are all viruses that have been linked to ME/CFS cases. Most devastating of all, experts are predicting that the current COVID-19 pandemic could double the amount of ME/CFS cases here in the United States. In fact, nearly 35 percent of COVID-19 survivors are already exhibiting neurological symptoms like mine.
That means that many of those who survive COVID-19 may never be healthy again, that their stay-at-home order will continue long after the rest of America has returned to normal life.
Millions of us are missing — from the workforce, from the ballot box, from the summer barbeques and wedding pictures. We are missing, and, as time passes, we are often forgotten. This is especially true when it comes to funding for research.
I’m lucky enough to be a patient at Stanford’s Infectious Disease Clinic, which is at the cutting-edge of ME/CFS treatment. However, my doctor frequently expresses how difficult it can be to get funding for his research proposals.
“You aren’t dying,” he says. “And they don’t think it’s serious enough for funding unless people are dying.”
Perhaps that will change after this pandemic. Perhaps the public will realize that a homebound existence might not be dying, but it sure isn’t living either. Perhaps the NIH and CDC will realize that we need more funding for research.
That’s why I’m joining with other ME/CFS advocates in asking Congress to allot $60 million in funding for post-viral research as part of the next COVID-19 package. That funding would help frontline medical professionals in their ability to identify and treat post-viral diseases like mine, and it would give researchers the funding necessary to better understand a disease that will continue devastating many COVID-19 survivors.
It might even give us a chance to eventually leave the house.
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