Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Commemorating National Caregiver Day

Commemorating National Caregiver Day

A caregiver shares her touching story

February 19 is National Caregivers Day.  Open Medicine Foundation would like to take a moment to acknowledge and thank all of the selfless caregivers who help to support their loved ones with ME/CFS and related complex, chronic illnesses.

To acknowledge the resilience and strength of caregivers in our community, we are honored to share the story of a mother and caregiver to a son who is severely ill with ME/CFS: 

“My name is Rebecca Groble and I am the mother of Gabriel Hull, who is severely ill with ME/CFS.

In the summer of 2018, he was on a fellowship in China and became very sick. Initially, the doctors thought he might have leukemia or another blood disease, but soon realized he had a severe case of mononucleosis. It was a scary time for us. We were back home, and he was across the globe. I was getting ready to go to China when he started stabilizing, and he told me not to come. He improved and was able to continue the fellowship. However, instead of traveling around China after the fellowship ended as he had planned, he came straight home to Illinois.

That summer, Gabriel spent a lot of time resting. Fall came, and he went back to school for his sophomore year at the University of Chicago. By the spring, he started feeling worse and was cycling between wellness and severe fatigue. By April, school was too much for him, so he withdrew from classes and came home. My husband and I moved him out of his dorm. It was heartbreaking. Eventually, he was diagnosed with ME/CFS. He is now completely bedridden.

In February of 2020, Gabriel became a patient of an ME/CFS specialist, which has given us hope. It’s still a roller coaster ride where we see improvements, followed by crashes. Although the crashes are terrifying,  the improvements make us feel optimistic. Gabriel can whisper now. He no longer wears headphones. He is still sound sensitive, but no longer needs earplugs. However, we need to keep the house quiet, and he cannot watch TV, listen to music, or text with his friends.

Our family has been through so many difficult changes. This situation has caused us to lose friends who don’t understand. Fortunately, other friends have stepped up and have been there for us. The kindness of the community has given us hope and strength.

 Of course, it’s hard to see my son in this condition. He is a musician but can’t play his piano because he is bed-bound.  He was an active college student and volunteer. He walked from one end of our town to the other instead of driving, biking, or taking public transit. But now, he’s reliant on us for all tasks such as toileting, eating, and brushing his teeth. If he wants a sip of water, he needs one of us because he can’t lift a glass. 

Gabe has a few friends in town who still reach out. They have brought over cards and flowers, which reminds Gabriel he has not been forgotten. The Hillel community at the University of Chicago has been supportive of Gabe, too. One girl made him a bracelet, and another sent a stuffed animal. This is so important for Gabe to know that friends love him, care about him, and hope for his recovery. 

Despite the pain and heartbreak, I still have found beauty in my relationship with Gabriel. We have short conversations where Gabriel will whisper to me, and I will write my response on a paper pad. Gabe has whispered to me a quote that he would like to share with the community:

“Because of post-exertional malaise (PEM), ME/ CFS makes you fear all the things which once made life good and beautiful. First school, then seeing friends, listening to music, bathing, even eating. Now I am afraid to even laugh. It could cause a crash and make me permanently worse.”

Gabriel is the driving force behind the fundraising that we are doing for OMF on Facebook. Gabe whispered to me he would like me to organize a fundraiser for his birthday to support OMF funded research into ME/CFS. Each donation puts a smile on his face. He did a Facebook fundraiser last year and raised around $4,800 for OMF. This year, I started a Facebook fundraiser on his behalf because he’s not capable. Our goal was $7,000, and we reached it in a week.”

We are so moved by the generosity of Gabriel’s family. ME/CFS is a devastating illness, with complex challenges that impact the lives of patients and family members alike. We appreciate all the caregivers who step up to meet these challenges with compassion and strength.

We invite caregivers and patients to visit our Resource Center webpage to find a variety of helpful information. Here, parents can also find useful information and resources to help their child with ME/CFS.

Thank you to caregivers for all you do to support the community, from your OMF family.

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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