The plight of people living with Myalgic Encephalomyelitis (ME) was heard in Illinois this week.
The parent of a young daughter with ME, Amy Mooney, worked with her state representative, Michael J. Zalewski, to introduce a state resolution that recognizes ME as a tragic, disabling disease, and that commits to improving the availability and quality of medical care for people with ME, as well as encourages universities in Illinois to focus research on ME.
Yesterday, Amy and representative Zalewski testified before the Illinois General Assembly Health and Healthcare Disparities Committee about the neglect of people with ME. The committee agreed that a meeting with the Illinois Health and Human Services’ director needs to take place. The committee also said it wants to see how ME can be part of a bill for recognizing ME at medical facilities.
The Illinois General Assembly will vote on the resolution next week but the vote is expected to pass smoothly. People with ME and allies from near and far sent me their names to show support for the resolution.
Send a note of thanks to IL. Representative Michael J. Zalewski for his support of people with ME.
Read Amy’s testimony here.
An occupation therapist by training, Amy says that the resolution is key because the medical community is not training its doctors about ME.
“The ME community is marginalized, dismissed, and misunderstood,” Amy said. “The impact of this illness is life altering and offers no respite to those afflicted. The medical community must step up and recognize ME.”
The Illinois resolution for ME also urges the National Institute of Health (NIH) to fund ME at a level commensurate with similarly burdensome diseases, and recommends that the Centers for Disease Control (CDC) disseminate new medical education based on the National Academy of Medicine recommendations.
A Mother’s Fight for her Daughter
Each time Amy saw her state representative, Mike Zalewski, at her older daughter’s t-ball games or at the community pool, Amy would talk to him about Lizzie’s struggle with ME. She told Zalewski about the lack of medical treatment for ME and the lack of medical doctors who understand the illness.
When Amy was organizing a #MillionsMissing rally in Chicago in September to raise awareness for ME, she invited Zalewski to speak. Although that never panned out, Amy later met with Zalewski to provide him with statistics on the prevalence of ME in his district and in the surrounding areas. She proposed the idea of introducing a state resolution on ME into the Illinois House of Representatives, and provided Zalewski with a template for a resolution on ME that an activist from Georgia had drafted. (The Georgia House of Representatives has just passed a state resolution for ME.)
Lizzie has been sick for three years with ME. She has missed her 4th, 5th and now 6th grade education – and her condition is not expected to get better.
Lizzie spends 90 percent of her day in bed in a darkened room crippled by fatigue and excruciating pain. She has to limit sound and movement. She can’t nap and doesn’t sleep well at night. Because of how weak she is, all of her meals must be eaten in bed.
Most mornings, Lizzie receives home tutoring for an hour, and attends math class at school in the afternoon. But her attendance is poor. In fact, she has never finished her lessons without having to be helped upstairs, only to collapse in bed, crying. She spends the remainder of her day there, recovering from the exertion.
On Feb. 5, 2015, Lizzie woke up with a very sore throat, severe axillary (armpit) pain and utter exhaustion. As the next 21 months unfolded, different symptoms emerged, each one more devastating than the next.
Amy and her husband searched for a diagnosis for Lizzie who was evaluated at three major medical centers and in multiple departments (infectious disease, neurology, rheumatology and gastroenterology). Each of these departments searched for a cause in their individualized field and ruled out countless conditions. Lizzie even participated in a grueling eight-week pediatric pain clinic program, focusing on physical reconditioning and psychological strategies to manage pain. It did not help.
After one year of searching for answers, Lizzie’s pediatrician mentioned the illness Myalgic Encephalomyelitis and felt the condition resembled Lizzie’s symptoms. In April 2016, Lizzie was finally diagnosed as having ME by a physician in North Carolina who specializes in the disease.
“The search for a correct diagnosis was an excruciating process but finally getting the correct name for this monster at least gave it an identity,” said Amy.
“To our shock, we discovered that medical schools do not teach their students about this condition. Even though 1 million to 2.5 million Americans have ME, it is not featured in medical textbooks. In fact, most doctors have not been trained to evaluate, diagnosis or even treat ME.
“Though we have held on to hope and have kept praying that this illness would go away and return our usual energetic daughter to our family, the reality is that nothing has improved in her – or our – lives.”