About the Project


The Forget M.E. Not collective quilt is a venue to highlight the art, lives, and stories of people living with M.E., who deserve to be seen and heard.

This project enables participants to represent their story of how this disease has impacted their life. These images and stories will increase awareness about M.E. and how it impacts participants and their loved ones. It will help address misinformation about M.E. and the stigma experienced by people who have this disease.

Advocacy is important, though sometimes challenging with very limited energy. This project is the cumulation of many people’s small actions that together have a tangible and greater impact through working together towards a common purpose.

The collective nature of the project fosters community among widely dispersed people, connected by the common thread of this disease and their art. It provides a communal space for grief, remembrance, mourning, and hope – both virtually and through a physical product. The quilt acts as a vigil, holding space for those suffering from M.E.

The Forget M.E. Not quilt calls attention to a devasting disease that is poorly understood and critically underfunded, shining light on the experiences of people who may be housebound or bedbound, often invisible to the broader world and the medical community. It highlights the need for research, effective treatments, understanding, support, and compassion.



The Forget M.E. Not quilt is the collective effort of 193 people living with M.E.

In the centre of the quilt are the names of some M.E. community members who have passed away. These names are representative of great loss; there are many more not captured here.

The other squares were created by groups of four people. Each artist designed and embroidered a portion of the square with an image that tells their own story.

Approximately 25% of the quilt squares are blue (a color associated with M.E.), symbolizing the proportion of people with severe M.E.

The forget-me-not flower is a widely embraced symbol for people with M.E., as they ask to be remembered though they may have disappeared from public view. This motif is quilted along the seams, blending into the fabric, symbolizing the invisibility of the disease. The quilt layout and backing fabric reiterate the forget-me-not theme.

Participants received a keepsake ribbon/brooch made from the fabric backing.



Requiem


In preparation for this collective quilt project, I designed and embroidered a sampler quilt that tells my story of living with M.E.. Through this, I practiced techniques and tested materials prior to beginning the collective quilt project. The sampler quilt helped visually communicate the concept design.

The term Requiem applies to musical compositions associated with death, dying, and mourning. Requiem is Latin for “rest, repose” – a title that reflects the nature of M.E., which requires pacing (managing exertion within personal energy thresholds to prevent crashes, post-exertional malaise, and potential further deterioration) to manage the disease. The title also alludes to severe M.E. patients who are bedbound, often spending extended periods of time (days, months, years) in quiet, darkened rooms.









Acknowledgements

Many thanks to the Kutenai Art Therapy Institute and its Art for People Community Grant, which provided financial support for this project.

Many thanks to Sheri Andres for her assistance in making the quilt and co-writing for this website; to Heidi Andres for developing this website and providing IT support; to Pete Andres and Jodene Andres for their photography; and to my family and friends for their love and support.

Above all, my heartfelt thanks to everyone who so generously shared their art and their stories. The Forget M.E. Not Quilt is your care, energy, and accounts bound together. Thank you for creating this quilt with me and for making life a bit brighter and a tad less lonesome. We matter. Our stories matter. May the companionship that yielded this quilt, sustained through the mail and web, endure as our stitches hold together.