Billy Hanlon, who has been living with ME/CFS since 2017, spoke with the Amsterdam News in a Q&A about Long COVID, ME/CFS, and ongoing advocacy efforts. He is the director of advocacy and outreach for the Minnesota ME/CFS [Myalgic encephalomyelitis/chronic fatigue syndrome] Alliance, a nonprofit in Minnesota aimed at increasing medical education and public education and trying to improve the lives of those who live with ME/CFS, Long COVID, or other infectious associated diseases. The conversation has been edited and condensed for clarity.
AmNews: Please tell us your backstory.
In 2017, at age 27, I was working for a local company here in Minneapolis in a managerial capacity and this seemingly mild virus, in the blink of an eye, changed my life…I felt like I was really in the prime of my life, physically, professionally, socially, and personally, and this infectious episode derailed my life trajectory…Before long, I started noticing that I had these difficult neurological complications—difficulties with comprehension and coordination, and then I was having these profound nervous system issues.
For me, it was this crushing, debilitating exhaustion that I now know is called Post-exertional malaise and is the cardinal symptom for ME/CFS and Long COVID. It’s [a] defining characteristic…Those symptoms got worse…any exertion that I was putting forward was exacerbating those complications, that just crushing exhaustion, those neurological difficulties, palpitations…it just catapulted my life into trying to fight for [my] life back. I became a full-time advocate, [fighting] for equitable treatment, equitable funding levels, and widespread recognition for these diseases.
AmNews: How did you get involved in Long COVID advocacy?
A sizable fraction of Long COVID patients or of the Long COVID community meets the diagnostic criteria for ME/CFS because ME/CFS is part of this long-known but minimally researched umbrella of infectious associated diseases that generally are preceded by a viral infection, [such as] SARS-CoV-1, H1N1, Epstein-Barr Virus (which produces mononucleosis), and now COVID-19 from SARS-CoV-2. Long COVID [is] now the newest in these long-known, but minimally researched infections diseases.
AmNews: Could you speak to ME/CFS and Long COVID in underserved and vulnerable communities?
This is a really important point and I try to make sure that I’m honest about [the fact] that I was very privileged to have the support system that I had. I recognize what the pandemic exposed and revealed was how COVID-19 impacts members of minority groups and vulnerable populations. That includes frontline workers and those of low economic status. Seeing that has been really important to my advocacy—knowing that health disparities are exacerbated when you have less access to care or you’re disbelieved and discredited in medical settings, your chances of recovery are so much more diminished than someone with access to care.
I’m proud and I’m glad that [the Amsterdam News is] raising that voice. The reality of these diseases [is that] there is such a sparse understanding of them from a medical provider situation that anytime you have even further barriers against you, your odds are that it’s even harder to maintain your health…It really is a tragic thing.
AmNews: What are some outcomes you’re seeing with your advocacy work?
From a local standpoint, we were really proud that last May in Minnesota, we passed local legislation for funding measures that were dedicated to Long COVID and these related conditions, mainly for capacity-building activities like awareness and surveillance monitoring, so from a local standpoint, gaining more recognition and acceptance and validation was something our local Minnesota Community was really proud of.
While that’s a step in the right direction, the honest reality is at the federal level, we still have a lot of work to do, and much progress still remains, because…where much of the biomedical research takes place is at the federal level and…[for] health research and biomedical research, you…need solid funding streams to be able to carry out studies and carry out clinical trials…For those living with these diseases, your end goal is diagnostics and therapeutics and interventions.
There’s a bill in the Senate and there are two bills in the house: the Long COVID Support Act in the Senate and the Treat Long COVID Act in the House, as well as the Long COVID Recovery NOW Act.
Right now, the problem is that there are millions upon millions of very sick, very debilitated individuals with these diseases and it’s going to take a moonshot [because] these diseases historically have been at the end of the queue for funding.
AmNews: What can people reading this article do who want to help?
I’m a big proponent of calls to action; it’s also what the community can do. You can reach out to your elected officials and ask for their support with the three bills under consideration. Everyone has a senator, everyone has a representative; they can reach out to their elected officials and ask for their support in the Senate of the Long Covid Support Act; they can ask their representative for their support of the Treat Long COVID Act or the Long COVID Recovery NOW Act.
If you are recovering from #COVID19 or experiencing #longCOVID, you can call 212-COVID19 to receive specialty care, or visit www.nychealthandhospitals.org/services/covid-19 to learn more about NYC’s COVID-19 Centers of Excellence. For additional resources about COVID-19, visit www1.nyc.gov/site/coronavirus/index.page. To learn more about NYC ME/CFS resources, visit https://www.health.ny.gov/diseases/conditions/me-cfs/. COVID-19 testing, masks, and vaccination resources can be accessed on the AmNews COVID-19 page: www.amsterdamnews.com/covid.
Editor’s Note: The headline was updated, replacing chronic fatigue syndrome to Myalgic Encephalomyelitis.
Nineteen years ago, while a strong amateur athlete I caught a virus while bicycling in Italy. When I returned to California a month later, the viral symptoms disappeared, but suddenly I began having problems with profound fatigue that would put me in bed for weeks. The fatigue usually occurred hours or days after any exertion at all such as taking a shower or preparing a meal. My heart which had propelled me over some of the steepest summits in the world on my bicycle began having palpitations that would last for hours. I began feeling as though I were living in a fog. I could not concentrate, I often could not read and sometimes speaking was difficult. My life crumbled in front of me. I could no longer do any exercise, my social life dwindled and my family life suffered greatly.
I have all of the symptoms that Billy Hanlon has and I got them just as he did. After a viral infection. He and I now have the same illness…Myalgic Encephalomyelitis (M.E.). So, what is the big deal about calling his disease “Long Covid” and mine M.E.? Money. There is little funding for M.E. research and sufferers have been complaining about being marginalized for decades because of it. But, there has been over 1.5 Billion set aside for Long Covid research. And, the Long Covid researchers, instead of piggy backing onto the existing M.E. research have gone about reinventing the wheel. They have gone so far as to research theories that have been entirely dismissed by the M.E. researchers all over the world. Money wasted when the research had already been done.
Not all Long Covid sufferers have Myalgic Encephalomyelitis. But every one of them who has fatigue from Post Exertional Malaise (PEM) also called Post Exertional Neuroimmune Exhaustion does have M.E. There is only one illness that presents with PEM/PENE. M.E. I have read hundreds of Long Covid reports of people with my exact symptoms who suffer from the post viral curse that is M.E. Let’s begin, for the sake of research funding to put the right name on what needs researching to begin with.