I’m writing to publicly express my gratitude to state Sen. Laura Fine and House Leader Robyn Gabel and their staffs for their support recognizing May 12 as World ME (Myalgic Encephalomyelitis) Day. The Illinois Senate recently passed a resolution officially recognizing World ME Day. The resolution from the House side moved forward from the Public Health Committee and is awaiting full approval, hopefully in the Fall session.

This is significant because Myalgic Encephalomyelitis, formerly known as Chronic Fatigue Syndrome, is estimated to affect over 100,000 people in Illinois and 50 million people worldwide. These numbers include my 27-year-old son, Gabe, who relies on my husband and me for everything from toileting him and adjusting his pillow to sometimes feeding him. He has been mostly bedridden for eight years due to this nightmare disease. A bout of mononucleosis during the summer of 2018 completely changed my son’s and my family’s life, as Gabe never recovered. Gabe had been an active college student at the University of Chicago. He worked part time, tutored math at a Chicago public school, served on the board of a student organization and donated his skills as a pianist to nonprofits to help them raise money.

The recognition of World ME Day is also significant because, in spite of the numbers, Myalgic Encephalomyelitis has no FDA-approved treatments or cures. When Gabe became sick, we learned that none of the five academic medical centers within driving distance of our home had a dedicated ME clinic or program. This is still the case today. The 20 or so clinicians and institutions who focus their practice on ME are based on the coasts, and they have either stopped taking new patients or have waiting lists years long.

ME, an Infection Associated Chronic Condition, is most often triggered by a virus such as flu, mononucleosis or COIVD. There are non-viral triggers as well, such as exposure to black mold and other assaults. ME is a stealer of dreams and potential — and a destroyer of families. As an ME advocate, I periodically hear affected people share their stories. I have listened to accounts of family abandonment, the unimaginable stress an ME diagnosis brings to a new marriage, and not only divorce but pediatric patients’ care being disrupted by custody battles. It is not unusual to hear of multiple family members being diagnosed with ME, or of job and insurance loss due to this horrific disease.

Whether one looks at the human cost of ME or the economic burden of hundreds of billions of dollars in this country alone, research has been limited by lack of investment. Awareness by those who have the power to craft policy and direct resources can make a difference. On behalf of my family and the ME community, thank you, Sen. Fine and Leader Gabel, for your ongoing support.

• Rebecca Groble has lived in Evanston for 33 years with her husband, David Hull and their son, Gabe (ETHS 2017). She is a former, Adult Ed ESL teacher, AVID tutor, Cub Scout leader and parent volunteer. She is now a full time caregiver to Gabe and volunteer with Solve ME.