Jess Maciuch, a Northwestern University researcher of Chronic Fatigue Syndrome and Long Covid, laments that there was little talk of chronic illness during election season.
By Khalil Dennis
People hold medical masks in their hands. (Photo: Petra Wessman/Flikr)
Leaving Wellesley College wasn’t a choice for Jess Maciuch — it was a necessity. After experiencing debilitating fatigue and brain fog, Maciuch (pronounced “maw-choo”) used her biology background to find answers that had eluded 24 doctors. After two years, assembling off-label medications to manage her symptoms, she finally got a diagnosis: myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS.
This condition is a hallmark of another underreported illness: Long COVID. Maciuch defines it as “any kind of long-term health problem that can be traced back to COVID-19 in some way, such as developing new autoimmune diseases or having lingering symptoms.” The ME/CFS community, disabled by viral illnesses such as severe flu and Epstein Barr, predicted Covid-19 could do long-term damage. But disability and Covid-19 have been an afterthought – even though the virus was the fourth-leading cause of death in the United States in 2023.
Maciuch finds it alarming that elected leaders have ignored the increasing population of chronically ill Chicagoans and Americans, many excluded from public life due to Long Covid. And Macicuh is one of the lucky ones, she said. A Portage Park resident and Northwestern grad student, she has more access to medical care than most South or West Siders, and her job allows accommodations for her condition. Ignoring the issue will cause long-term problems for low-income Chicagoans, she said.
“We shouldn’t be exposing people to a viral agent that causes them to lose 50% or more of their functionality. There are millions of people developing this illness,” Macicuh said.
This article has been edited and condensed for clarity.
Can you explain ME/CFS?
It's a chronic illness that, as of yet, has no cure and is associated with illnesses known as post-viral illnesses. It's characterized by extreme fatigue, intense difficulty concentrating, issues with memory, etc. People will hear, “oh, fatigue? What's the big deal?”
With ME/CFS, it is all those symptoms to the level where you cannot do anything. A large proportion of people with this illness [are] bed bound [or] homebound. Some may be lucky to work part-time or full-time as I do with significant accommodations, but it reduces activity to a fraction of what it was.
what does a standard day look like for you?
I'm on a stimulant which doubles or even triples my normal functionality – my baseline. In a normal day, I can work a few hours. On the computer, I can work four to six hours maximum, but that has to be spaced out; otherwise, I'll [get] bad migraines or extreme brain fog. I can't meet friends for coffee, do laundry, and also cook dinner. That’d be a full day for me. I have to plan my whole day [and] stay within my energy budget, which usually means a lot of time spent resting.
What’s the relationship between ME/CFS and Long Covid?
Long Covid [has] a lot of overlap with ME/CFS including post-exertional malaise, [which includes] full-body aches, pains, [and] fatigue after activity. Avoiding Covid-19 is a big deal because it stands to worsen our baseline condition. I've known people with ME/CFS [who have] gotten partially functional [and] able to work part-time, catch Covid, and [are now] fully bed-bound. I have to wear a mask [and] avoid being in spaces where a lot of people are, which can be challenging.
Is there anything in how elected officials speak about Covid that impacts you and the disabled community?
The damage is already done. If Covid is mentioned, it is framed as, “We did it! Good job us.” The persistent references to “back in the pandemic” are negating that Covid is ongoing. I see the impact of people who thought Covid was over and then get slammed with this new chronic illness that steals all of their functionality. It's not just affecting a forgotten corner of people's minds, [it’s affecting] the people who they don't want to think about and it negates that that corner is growing.
There’s not much discussion about it. Politicians don't frame this conversation as, “we are all at risk of developing Long Covid.” There is evidence that the more times you get Covid, the more likely you are to develop debilitating illnesses. It's like seeing a complete disconnect from reality.
How has your Long Covid research impacted how you engage in electoral politics?
It was heartening to see Bernie Sanders' proposition for the Moonshot for Long Covid on a federal level; simultaneously, we're seeing less resources for the study of Covid. [I’m] engaged in electoral politics to see which candidate is aware that this is an issue that needs funding [and] can push for that. Senators aren't calling the National Institutes of Health (NIH) telling them to fund Long Covid research.
Long Covid research has shown [how] biomedical research and funding for it has a direct impact [and] downstream effect on people with Long Covid. Programs that help people regardless of whether it's Long Covid or not [would be] beneficial for people with Long Covid. [I] would love to see anything that has to do with establishing Long Covid clinics that are publicly funded, but that’s more theoretical.
Why is this an important topic for South and West Side communities to prioritize?
There was a survey by [the] Chicago [Department of Public Health] showing that Latine and Black communities were the most affected by Long Covid by self report. They might not have the privilege I've experienced [since] working minimum wage jobs is more common [in those communities].
There is a relationship between Long Covid and resting post-infection. If you're working minimum wage jobs [and] push yourself to overexertion, [this may] push you towards developing chronic illnesses. If you're talking about communities that already have issues accessing healthcare, [and struggle with] financial [and] housing instability - adding Long Covid is adding fuel to the fire.
What resources Do you feel Chicago isn’t providing to Support disabled people living with Long Covid?
Health care hasn’t caught up to Long Covid needs at all. The main thing is being able to provide access to health care practitioners who can recognize Long Covid and start people on the process of a diagnosis, and this involves having open access clinics in low-income neighborhoods. There needs to be resources dedicated to making sure that people who are too tired to look at their computers have a way to access existing public health resources such as Social Security, food stamps, etc. Having help with people facing eviction because they can't work, help applying for unemployment, and resources, such as case managers, following up with people dealing with extreme fatigue [is vital].
Any final thoughts?
People often walk away with, “if you put in hard work, you can overcome something like Long Covid, like ME/CFS.” The fact that I'm able to scrape together enough functionality to do grad school – that is extremely lucky. The people who are the most visible are the people who aren't the most severe [cases]. You probably won't be aware [of them] until you are the one experiencing it.
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