Today we share the story of a mother and daughter in Canada, the power of family, and their efforts to support critical research into ME/CFS.
In 2017, Rebecca’s life was turned upside down when she came down with an illness that prevented her from leaving her bed and going to work. Soon after, she was diagnosed with ME/CFS. Over the next six months, Rebecca found herself completely confined to bed, sleeping up to 36 hours at a stretch. “I was barely awake, could not speak, or lift my head,” Rebecca explains. After the initial six months, she began to improve slowly. Although still primarily bedbound, on occasion, Rebecca can now watch a movie with her kids, shower, or send emails. “Never all three,” she explains. “I have to choose very purposefully how to spend what little energy I have each day. It makes life very slow.”
Rebecca’s mother, Margaret, soon came to realize the gravity of Rebecca’s illness. Margaret explains, “My biggest challenge was to learn how ill my daughter was. Rebecca would tell me how tired she was. I would reply, ‘Of course you are. You have a job and a young family.’
I found out later that Rebecca was not just tired; she was mentally and physically exhausted. Rebecca was going for many diagnostic tests, and all the results were negative. We had no answers. When doctors tell you that nothing is wrong, someone like Rebecca thinks, ‘It must be in my head. I have to fight this and keep going.’ This made her symptoms worse over time. Many doctors either didn’t believe her symptoms or said she was healthy. Even after she had the diagnosis of ME/CFS, the medical professionals were very dismissive and said there was nothing they could do to help, and she would be like this for life.
In March of 2021, Margaret noticed that OMF had joined the Long Covid Alliance. “I saw this was an opportunity for more focused research examining coronavirus as a possible trigger for ME/CFS,” she explains.
Sadly, I can’t just kiss my daughter better. So, I helped with things like medical appointments and making meals. Then I decided to try fundraising.”
Margaret swiftly took action to help support OMF’s fundraising efforts in Canada. “Our first two fundraisers raised a total of $679. My third fundraiser was more ambitious, and I raised $1,200. I dug, divided, and potted up to about 200 plants with help from my husband. It was advertised as a plant sale to raise funds for OMF’s May Momentum fundraiser. Proceeds went to OMF in support of ME/CFS research.
Both Rebecca and Margaret remain hopeful for the future — “With the increase of Long Covid patients, I hope more attention will be given to this incredibly debilitating illness,” Rebecca says. “In the meantime, I focus on counting the small victories, and I am grateful for my supportive family.”