Hello, my name is Nathalie Gravel, and I have set up this GoFundMe for my beloved friend Amy who is incredibly sick with MECFS (Myalgic Encephalomyelitis). Amy is too sick to set up and manage a GoFundMe herself, and she has kindly trusted me and permitted me to help her do so. She needs help to regain autonomy so she can direct her own medical care and pay for doctors of her choosing.
All the funds raised will go directly to Amy.
Here is Amy’s story, which I have helped her write up on the rare occasions when she is able to communicate:
My name is Amy. I am 26 years old. I was in great health until I got Covid-19 in April 2020. My health declined from that date onward. It worsened significantly when I began training five times a week for 1 hour. I started experiencing classic post-exertional malaise (PEM) and the classic symptoms of Postural Orthostatic Tachycardia Syndrome (POTS) and MECFS. By December 2021, I was forced to move back home with my parents, as I was unable to care for myself. I have now been 95% bed bound for a year, since December 2021.
I was diagnosed with MECFS and POTS by Dr. Derek Enlander and Dr. Sue Levine, two renowned MECFS doctors, in September 2021 and March 2022.
The purpose of this GoFundMe, which my friend Nathalie has set up for me, is to raise funds to help me have more autonomy. I am currently reliant on my parents for housing, food, daily care, and all my medical costs. Sadly, I feel that my parents do not fully believe my MECFS and POTS diagnosis. I do not feel truly heard and seen. Now that I am no longer able to earn an income, I am reliant on my parents to pay for my doctors. I feel extremely uncomfortable with my current psychiatrist and do not feel I have the right family doctor, as neither is knowledgeable about MECFS.
My hope is that if I can pay for doctors of my choosing, who are experts in MECFS, or at the very least very knowledgeable and willing to learn more, they could not only help me improve and regain some real quality of life but they could also help advocate for me and help my parents better understand my debilitating disease. I feel it’s essential that I have some financial independence so that I can manage my care and have the final say over which doctors treat me. I want to feel heard and believed.
I am suffering tremendously every day. I live with horrible symptoms that include insomnia, severe brain fog (that has drastically reduced my ability to read, write, talk & use the phone), and many more. I am no longer able to listen to music or watch any television. I am in pain every day. I have tinnitus, frequent migraines, and am often too weak to walk to the bathroom, which is steps from my bed. My life has been reduced to a mere existence. I must fight every day to not worsen even further from over-exertion. I work very hard to pace myself and limit the tiny allotments of time I spend on the phone or reading. I can only spend 15-20 minutes a day on reading, writing or talking.
One of the hardest parts is that my (semi-retired) parents regularly tell me they consider sending me to a care home/facility. My psychiatrist and family doctor support this, and they have both suggested that I need to consider physiotherapy and psychotherapy to treat my MECFS.
Going to a care home or rehab facility would be the worst outcome for me. Despite the fact that the CDC has removed graded exercise therapy and behavioral therapy as recommended treatment for MECFS, MECFS is still treated with psychotherapy and physiotherapy at rehab facilities. As the New York State Department of Health has stated, “the recommendations to use CBT [Cognitive Behaviour Therapy] and GET [Graded Exercise Therapy] to treat ME have caused more harm than good for people with ME and have been eliminated from the Centers for Disease Control and Prevention (CDC) website.” ( https://www.health.ny.gov/diseases/conditions/me-cfs/ )
With all that I am dealing with, I am under tremendous stress on top of all my life-altering symptoms, which is only worsening my MECFS. I hope that gaining more autonomy and some financial independence will relieve some of the stress by allowing me to be in control of my life, my rights, my body and my healthcare choices. All funds will go directly to medical care costs and, hopefully, eventually, to being able to live independently again.
Thank you from the bottom of my heart for any help you can give me.