I’m a resident of Minneapolis, living with ME/CFS and Long COVID.
In 2017, at age 28, I suffered from an acute viral-like illness. Before long, I began experiencing severe neurological complications, such as difficulty with concentration and comprehension, as well as heart palpitations. The newfound, crushing exhaustion was unlike anything I had ever experienced. Physical or mental exertion seemed to exacerbate these complications, a phenomenon called post-exertional malaise (PEM), the cardinal symptom of ME/CFS and now Long COVID. In 2022, following a second COVID-19 infection, my symptoms worsened, leading to a Long COVID diagnosis.
As my personal experience can attest, ME/CFS and Long COVID are multi-systemic diseases involving pathologies of the brain, immune system, autonomic nervous system, and energy metabolism system. Many patients report that the onset of the illness (ME/CFS) is preceded by a viral infection, such as Epstein-Barr virus, H1N1 flu, or SARS-CoV-2.
Despite my best efforts, I have never recovered from ME/CFS and Long COVID. There’s no cure or FDA-approved treatment for these conditions, which affect people of every age and background. Very few American medical schools include ME/CFS and Long COVID care in their curricula, so only a handful of specialists in the country are trained to treat these diseases. As a result, many patients are disbelieved or discredited in medical settings, leaving essentially no system of care to lean on. I learned firsthand about the barriers and inequities faced by patients with ME/CFS and infection-associated chronic illnesses. Care for these conditions is vastly under-resourced, under-funded, under-studied, largely overlooked, and highly marginalized.
I anticipated these formative years of my adulthood to be marked by time spent with friends and family (my wife and nephews), new homes, job promotions, and vacations, but instead I find myself in a twilight world of this medical enigma. My life trajectory was headed one way, then viral illness has completely redirected it. I now spend the majority of my time horizontal, forging ahead as best as my body will permit, advocating with the will that still endures. ME/CFS and Long COVID rob futures and confine lives. Coming to terms with losing my career, my independence, and so many hopes and dreams has been as difficult as the chronic illness.
A lot more could be said about the profound loss I’ve felt professionally, physically, personally, and socially, but I instead want to focus on actionable items that anyone reading this can do to help support future care for this rapidly growing group of people affected by these illnesses.
First, Sen. Bernie Sanders (I-Vt.) recently announced a legislative proposal for The Long COVID Moonshot Act. This proposal is aptly titled as the advancements needed surely warrant a moonshot—the term used when Congress marshals resources across the federal government to expedite progress. These infection-associated chronic illnesses have historically been left at the end of the queue for research funding.
You can reach out to your elected official and ask for their support on this proposal, which will help accelerate and prioritize research, diagnostics, and treatments. This proposal would provide $1 billion in mandatory funding per year for 10 years so that the National Institutes of Health (NIH) can respond to this crisis with the sense of urgency that it demands. Recently, Reps. Ilhan Omar (MN-05) and Ayanna Pressley (MA-07) have also introduced a companion bill for the Long COVID Moonshot in the House of Representatives.
Second, an ME/CFS Research Roadmap Report was approved in May by the National Institute of Neurological Disorders and Stroke (NINDS). This is a step in the right direction toward clinical trials, but now we need the NIH to robustly fund it. You can contact your elected officials and ask that the NIH help make this a reality. These are also efforts that could pay dividends toward an ME/CFS platform clinical trial. This was recently recommended by Senior Investigator and Clinical Director Dr. Avindra Nath following the completion of the NIH ME/CFS Intramural Study. A platform trial or advancements in the Research Roadmap Report could potentially yield a lot of intel for Long COVID treatments and help inform the RECOVER Initiative, a research program by the NIH that aims to understand, diagnose, prevent, and treat Long COVID..
Lastly, Long COVID and ME/CFS were highlighted in May at the Senate Labor, Health and Human Services, Education and Related Agencies Subcommittee FY25 NIH Hearing. During the hearing, NIH Director Dr. Monica Bertagnolli stated, “… I want to say about Long COVID and ME/CFS—we are so grateful for our partnership with the people that are affected by this. They have taught us over the last two years what we needed to do. Now we just need to deliver for them.” Millions of people would agree. A crucial step would be to establish a dedicated Center at the NIH focused on Long COVID, ME/CFS, and infection-associated chronic conditions and illnesses.
Rhys Richmond is an MD candidate at Yale School of Medicine.
