From Summer 2009 Forum

Piecing together so many stories, all became a Quilt for Lobby Day back in 1998. Our support group took part in this project. Susan Best asked for squares from CFIDS patients. She would sew all the squares together to make one large Quilt. Some squares had just signatures, others had a message, or hobbies and sports . I made the State of Michigan where we live. The mitten would stand out for all that took the time to view the quilt. Three of our four daughters and I have CFIDS. This was a big project to work on but I had a lot on the line, so much hope for a cure.

Each person also sent their hope that this would be the year that CFIDS would get the attention we needed for funding. The quilt had over 200 squares.

So many years have gone by, and the research goes on. I still take the time to write letters, and do a window display at our library. I often hear from members of my support group: why take the time to make posters, have a table with information, write letters? Because you never know whose attention you might get. We are living a hidden epidemic with a name from our government that has not allowed us to be taken seriously. Changing the name would change how people view our disease.

The guilt was not the only project I worked on. The Centers for Disease Control and Prevention (CDC) started a surveillance study in three cities. Grand Rapids, MI, where I live, was part of the study. Children were not included in the study. After months of writing letters to Dr. Walter Gunn, I finally would meet him! The meeting was set up. It was to be just the nurse and the support group leader. I was the leader for the children's support group so I got on the phone telling everyone to be at the meeting. Every person is a leader that shares news and supports friends and family that have CFIDS.

Then I went to work hand painting dozens of wooden apples to make into pins for our children to wear. My hope was to put a face with an apple. Then I made up a large basket of apples as a gift. I then printed a large card for the gift. I wrote in large letters, "Each apple represents a child that has Chronic Fatigue Syndrome in Kent County. It would take the whole orchard to represent all the children that have Chronic Fatigue Syndrome in the USA."

That was a night that Dr, Gunn would remember! He walked into a room with over a 200 people waiting to talk to him. He thought it would be just the nurse in charge of the study and one support group leader. He had to meet real people with CFS, something he had not done before. Then he left with the basket of apples. The sign was easy to read, so he had many people wanting information about CFS. The apples had a big impact. He carried them back to the CDC with a few stops along the way. When he made it back to the CDC, he showed it to the directors. The children did get in the study, and I became known as the apple lady.

Janet continues to advocate for CFIDS/ME. The quilt has been passed to the NCF for safekeeping complete with the blue ribbon it won at the Pahrump Harvest Festival Fair. The apples were mentioned in Osler's Web on page 419.