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

Amie’s #MayMomentum story

Spreading Hope One Bear at a Time

I have had ME/CFS since I was 16 years old, after having a bad case of the flu. I am now 28. It took me 10 years of searching to finally find a diagnosis.

Overtime my illness has progressively gotten worse. I went from being a healthy teenager to being so weak I had to use a wheelchair. I have been mostly bedridden for a little over two years. Along with ME/CFS I also have several common co-morbid conditions; Ehlers Danlos, POTS, and Fibromyalgia.

After I became bedridden, I started knitting as a way to pass the time. I came up with the idea to start knitting teddy bears and sending them to others like me. I understand how truly lonely and isolating this illness can be and I wanted to use my time to do something that might bring someone comfort and happiness. I make each bear with the hope that it will give someone a friend to hug when they are in pain or feel alone, and as a reminder that no matter how lonely we may feel, there are so many of us out there. We are never truly alone.

I also wanted to use the bears I make to help spread awareness for ME/CFS and to raise money for research. That is when I learned about OMF. When I give someone a bear, I always encourage a donation to OMF if the person is able, even if it is only a dollar. Of course, I am still happy to make a bear for someone even if they cannot donate.

I also have quite a long list of requests for bears at the moment. I will still happily accept requests to be put on my waiting list, but I cannot predict how long it will take me to get through my current list due to my current health.

As part of team OMF, I feel it is important to spread as much knowledge and awareness for ME/CFS as I can. I make sure to educate any healthcare professional I see about ME/CFS. After having so many doctors dismiss my illness and tell me “it’s all in my head” I hope that by spreading my story and information about ME/CFS that I will help someone to receive a diagnosis sooner. I also want to fight the stigma that ME/CFS is just being “tired.” I also hope that spreading awareness will lead to more interest and funding for research leading to discoveries and hopefully a cure.

The main things that give me hope are the hard-working individuals at OMF and the support of the online community of patients and their family members. I truly believe OMF will find the answers and treatments that we so desperately need.

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