Solve M.E. Advocacy Week 2024 took place the week of April 15 and I was lucky to be able to participate and share my Long COVID experience with all four offices of Maine’s federal delegation.
The goal of the meetings was to urge legislators to establish a coordinating mechanism at the National Institutes of Health (NIH) dedicated to Infection Associated Chronic Conditions and Illnesses (IACCI’s). This coordinating mechanism would convene researchers across specialties, streamline resources, facilitate stakeholder and patient engagement, and improve research by creating a plan to foster collaborative research through clinical trials and studies. (You can read more about this effort in Solve’s white paper, here.)
In short, it would help the NIH get their shit together, stop wasting resources, and give patients a voice in the process (my words only, NOT those of Solve!).
To help bring legislators along, those of us suffering from said IACCI’s (like Long COVID) were invited to share how our lives have been impacted by our condition(s). Here’s what I shared.
My Story
I've had Long COVID since March 2020. My main symptoms are chronic fatigue, migraines, brain fog, nausea, and vertigo. Though there are more ways than I can count that Long COVID has changed my life, I’d like to share three with you here.
First, my CAREER has been impacted. Prior to contracting COVID-19, I was thriving in my role as a professor in sociology and the Margaret Chase Smith Policy Center at the University of Maine. Because of my condition, I had to step down from a role I absolutely loved, as Director of Maine NEW Leadership, a nonpartisan program designed to prepare Maine’s next generation of political leaders. This is a program I know you, Senator/Representative X, are well familiar with because you have provided us with a welcome video for our students every year you have been in office. I had to step down from NEW Leadership just as I was beginning to build an endowment that could sustain the program for years into the future and deepening our reach across all political perspectives. Though the program is in good hands, it breaks my heart to have had to leave a role that I absolutely loved and was thriving in.
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I’ve also been impacted in terms of WORKPLACE PROTECTION. Simply put, I learned quickly that am far less protected than I believed. I have one of the most protected jobs offered in the state - a tenured professor - but even I have had to fight every step of the way to keep my job. As the sole provider of health insurance for my family, it is critical that I am allowed to continue to do the parts of my job that I'm able to do; and there are plenty of parts I'm still able to do. I teach, I engage in policy-relevant research that is regularly cited in local, national and international media, I have served in administrative roles on campus before and since being sick, I mentor students and junior faculty members as able. My teaching evaluations and employee reviews have been excellent for my entire career, including since I've been ill. But, because I have been unable to work full-time, the university has pressured me to resign and last year threatened to fire me after I declined to accept an “offer” they made to phase me out of my job completely over a four year phased retirement period.
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Finally, my ACCESS TO MEDICAL TREATMENT has been limited. It took a year and a half for me to get the right diagnosis, partly because I was in the first wave of Long COVID patients but largely due to medical gaslighting and lack of training among the doctors I was seeing here in Maine. It wasn't until I switched my primary care to the Mabel Wadsworth Center here in Bangor, which uses a patient-centered approach to care, that I was heard, believed, and finally referred to the specialists I needed to see. Unfortunately, this required and still requires regular travel to Boston, a luxury many Mainers simply can’t afford. Since MaineHealth closed the state’s one and only Long COVID clinic last January, few primary care providers in our state have the knowledge or training needed to understand or properly diagnose the condition. I only have a great medical team because I'm in the fortunate position of having a persistent and caring partner, a sister who happens to be a nationally recognized PCP at the Mayo Clinic in Minnesota who refused to let up until I got into the right hands, AND because I have the resources to be able to travel to Boston to visit my Long COVID clinic where I receive treatment and participate in a clinical trial.
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Worth Reading
Long COVID hasn’t killed me but it most certainly has tried. I’m not alone in feeling this way about my chronic illness. Writer Tessa Miller describes the struggle brilliantly in her 2021 memoir What Doesn’t Kill You. At once a harsh - and well-deserved - critique of Western medicine and a chronicle of the terror and hilarity that ensues when one’s body develops a mind of its own, Miller’s frank account of surviving and ultimately thriving in spite of being forever-ill is nothing short of a hero’s journey.
Worth Doing
I know the system is broken but it’s the system we’ve got so I say let’s work it. Our elected officials are supposed to be serving us so let’s help them do that by giving them a piece of our minds. Call, write, and/or visit your congress people. Trust me, it’s easy. Since calling is the easiest and perhaps the most chronic illness friendly of these options, let me give you a quick and dirty how-to on that right here.
Step 1:
Type your address into the Find Your Members field on the following page and VOILA, there they’ll be! You’ll get a handy photo of each member along with their party affiliation, contact address in DC, and phone number.
https://www.congress.gov/members/find-your-member
Step 2:
Dial that number, baby! You won’t actually get the member of congress. You’ll either get an answering machine or a staff member who answers. It’s go time.
Step 3:
A riff on something like the following script will do:
You: Hello, my name is ______. I’m a constituent from ______. Could I speak with the Legislative Assistant who handles ______?
Congressional Office: Hi, this is X, how can I help you?
You: I’m calling to ask Representative/Senator X to support ______. (If there is a specific bill you’re calling about, reference it. If the congressperson is a known supporter, acknowledge that and thank them. You could also add one more sentence about your personal connection to whatever you’re calling about but KEEP IT BRIEF.)
Congressional Office: Thank you. I will let the Representative/Senator know that you called.
You: Thank you so much. Can I get your email so that I can follow up with you on this issue? Thanks again for your time.