My name is Glenn Tucker and I live with a debilitating disease called myalgic encephalomyelitis, or ME for short. According to the Centers for Disease Control, “People with ME have overwhelming fatigue that is not improved by rest. ME may get worse after any activity, whether it’s physical or mental.” ME used to be called Chronic Fatigue Syndrome, a term many now find offensive, including some of the doctors that coined it. A 1996 study published in the American Journal of Medicine — and since corroborated multiple times — found that people with ME score lower on quality of life indices than people with cancer, heart disease, multiple sclerosis and diabetes.
If you haven’t heard of ME, it’s not because it is a rare disease: before the pandemic an estimated 2 million Americans lived with ME, more than HIV/AIDS (1.2m), lupus (785k) and multiple sclerosis (486k). Nearly eighty percent of ME cases start with a viral infection. Seventy-five percent of people with ME are women, and 25% are bedridden, like me. I have been bedridden for nearly four years and sick for nearly eight. A 2008 study found that ME costs our nation’s economy between $17 billion and $24 billion in lost wages and medical expenses.
Many of you have probably read about “Long COVID,” which occurs when people never fully recover after a COVID-19 infection. This month, the Government Accountability Office reported to Congress that there could be between 7.7 million and 23 million U.S. Long COVID cases. This greatly exceeds the number of U.S. COVID-19 deaths, which is still under 1 million. Two recent studies — one by German researchers, the other by the Icahn School of Medicine at Mount Sinai in New York — found that half of all Long COVID cases are actually COVID-onset ME. Recent articles in Axios and Brookings and a story on NPR’s Marketplace present Long COVID as a contributing factor to current labor shortages.
A 2021 Mayo Clinic report states that “medical education programs rarely cover ME and guidance for practicing clinicians is often outdated and inappropriate.” Accordingly, doctors frequently tell people with ME and other complex chronic illnesses that we are not sick, that exercise will help us when it will harm us and that any symptoms they do not understand must be psychological. What has long been a humiliating, unnecessary and nearly universal rite of passage for people with ME — being told we are not sick — is now sadly a rite of passage for people with Long COVID.
Michigan Medicine believes that the key to treating ME is for patients to develop a good rapport with their primary care doctor, despite the fact that primary care doctors are neither trained nor employed to specialize in complex diseases. The Michigan Medicine rheumatology department has a written policy to refuse referrals for ME, based on an as-of-yet unproven hypothesis that there is no rheumatological basis for ME.
Last year, Michigan Medicine opened a Long COVID clinic, but it only treats patients who were hospitalized for COVID-19 — statistically a very small fraction of Long COVID cases, particularly among young people. This clinic was opened with the help of outgoing National Institutes of Health director Francis Collins, the man single-handedly responsible for underfunding ME research for decades.
Last fall, I contacted Michigan Medicine leadership to alert them to this reality and to start a long-overdue conversation. My efforts were met with silence, dismissal and the repeated assertion that Michigan Medicine cannot change policy or justify expenditure for a single patient (myself), an assertion that reveals a brazen disregard for the widely accepted public health data I have cited.
According to disability rights icon Judith Heumann’s memoir Being Heumann, “The status quo loves to say no.” Michigan Medicine has made it very clear that they plan to say no — mainly because they can — for as long as they can get away with it. Michigan Medicine has made it very clear that they plan to ignore their patients’ needs, current research and public health data for as long as they can get away with it. Michigan Medicine has made it very clear that they plan to under-diagnose ME in order to claim that they have no ME patients for as long as they can get away with it. Michigan Medicine has made it very clear that they plan to delay this conversation for as long as they can get away with it. Michigan Medicine has made it very clear that they plan to perpetuate the public health crises of ME and Long COVID by picking and choosing which diseases they feel like treating for as long as they can get away with it.
St. Joseph Mercy is more than welcome to step up — I have experienced plenty of medical trauma there too. And if you’re reading this in another city, chances are you can substitute the name of the big hospital system where you live.
While there is a great deal we don’t know about Long COVID, focusing exclusively on what we don’t know erases the contributions of those who have been studying and treating ME for decades. In late 2020 world-renowned ME specialist David Kaufman released a free, hour-long Continuing Medical Education webinar specifically created for primary care doctors.
After eight months of nagging, I convinced my Michigan Medicine primary care doctor to take it, and he has since prescribed me a medication that has been in use longer than I have been sick. However, finally having a doctor that respects me and who is open to new information a mere seven and a half years into my illness makes me an outlier. So does receiving a diagnosis a mere three and a half years into my illness or having a family who has believed me from day one. Most are not so fortunate, especially considering that doctors are statistically less likely to listen to or believe patients of color, LGBTQ+ patients and female patients.
I have asked before and will continue to ask that Michigan Medicine mandate all primary care physicians take Dr. Kaufman’s webinar. I also ask that those who hold power over the Michigan Medical School curriculum take it and use its contents to make necessary curricular updates. I have asked before and will continue to ask that Michigan Medicine designate a department to accept all referrals for ME and Long COVID. The time has come to create a comprehensive, proactive post-viral illness policy.
If anyone with Long COVID is reading this, please know that you are right in asking medical professionals for help, and that every doctor that stands in your way is wrong on so many levels. For anyone looking to learn more or get involved, I recommend the 2017 documentary Unrest, which is available on Netflix. #MEAction Network, Solve M.E. and the U.S. ME/CFS Clinician Coalition are organizations doing great work in this area. Together, we can work towards creating a world in which all patients are treated with basic human dignity.
Glenn Tucker can be reached at gln7tkr@gmail,com