People with myalgic encephalomyelitis (M.E.) don’t hear good news on the research front as often as they should.
That’s why we are thrilled to announce the scientific journal WORK: a Journal of Prevention, Assessment & Rehabilitation has devoted an issue solely to M.E. research.
Topics will include documenting disability by Richard Podell, what caregivers want you to know by Bobbi Ausubel, and why graded exercise therapy doesn’t get patients back to work, by Mark Vink. Many of our best-known researchers and clinicians have also made contributions, including Dr. Lucinda Bateman and Dr. Mark VanNess, two of the panelists in #MEAction’s upcoming seminar for clinicians on post-viral ME in the time of COVID-19. Dr. Lily Chu, Dr. Art Mirin, Denise Lopez-Majano, Mary Dimmock, Dr. Lenny Jason, Dr. Suzanne Vernon, and the Workwell team all submitted articles.
Occupational therapist and M.E. caregiver Amy Mooney was more than pleased to edit the special edition.
“Since this was truly a blending of my life focus, occupational therapy and M.E., I could not refuse this opportunity, even if I had never organized a project like this before,” she said. “I knew the M.E. community had so many individuals who could help me with this project.”
“Paths aren’t always choices,” she added. “They are callings and we go where we are needed.”
That leads us to the path of Rivka Solomon. Rivka developed M.E. after a bout of mono when she was 21 years old. Twenty-eight years later, she is still unwell, but contributes knowledge to MEpedia and coordinates events for the Massachusetts ME/CFS and FM Association. Rivka organized a screening of the documentary Unrest with Boston University’s Sargent College alumni board, inviting Dr. Karen Jacobs to introduce the film for about 70 attendees. (You can watch a video of the event here).
Dr. Jacobs is a professor in the department of Occupational Therapy at Boston College, former president of the American Occupational Therapy Association, host of the podcast Lifestyle by Design, and the chief editor of WORK.
After seeing the film she was moved to host an episode of Lifestyle by Design about M.E. called The Invisible Disease. “I had no idea how powerful this documentary was going to be to me [not just] as an occupational therapist, but also as a person,” she said.
Amy, Rivka and patient advocate & support group organizer Robie Robitaille discussed the impact of M.E. on quality of life for people with M.E. and their caregivers, as well as Amy’s experience as an occupational therapist. Robie emphasized the impact on severe patients, saying for people with severe M.E., “it’s like a living coma.”
After the episode, Dr. Jacobs wasn’t done. She proposed dedicating an issue of WORK to M.E.. Amy recognized the potential to help WORK subscribers become advocates for people with M.E. at work and school.
As guest editor of this special edition, Amy had to adhere to the double-blind review process. She convinced M.E. researchers to publish their research in a journal outside their field, got authors to trust a rookie guest editor, and convinced WORK’s peer reviewers to look at research from authors outside their field.
Open access is now available for everyone!
A big thank-you to Amy Mooney, Rivka Solomon, Robie Robitaillie, Dr. Jacobs, and all the scientists who helped bring this issue of WORK to fruition!