- Last Updated: 10 September 2023 10 September 2023
As part of Mass@ME40 celebration we will be presenting a series of stories and documents from the history of our remarkable organization.
This month, a brief history of the MassME ‘Lending Library.’
The Lending Library: Delivering Hope
MassME began in the early 1980s as a network of support groups – people meeting in person to share information, experiences, and advice about life with ME/CFS.* Information in the early years was scarce and hard to find, and people passed from hand to hand the few books, videos, and pamphlets that were available. Some of the support groups pooled resources to purchase and accumulate materials that they could then make available to group members.
When MassME was formally incorporated as a 501c3 organization, these collections of resources became the Lending Library. Lorraine McDonough, Nancy Smith, Dr Lucy Dechene, Rita Sanderson, and Ken Casanova all worked on collecting and expanding the library over the years.
MassME members taking calls on our support phone line could recommend books or videos, depending on the caller’s need, and a list of available publications also appeared in The Update, our quarterly newsletter.
Recommendations and requests would then be passed along to the ‘Librarian’, who would either send the material in the mail or deliver it in person to the requester’s house. Marilyn Cathcart, Giovanna Del Deo,and Pat Kearns were librarians in the early years of the organization. Phil Chernin, who was librarian from 1989 to 1992, remembers that he tried to deliver as many books in person as possible. Requesting individuals were in very difficult health circumstances, and, as he was himself in a period of mostly functional remission, Phil felt that he was delivering not only much-needed information, but also hope.
“It’s hard to convey the hunger for information at the time,” said Phil. “There’s such a difference between then and now, how we casually receive and absorb information. People back then would hear about a book, but there was no way to access it.”
Both books and videotapes were available in the Lending Library, but Phil remembers the books most clearly. Here are a few of the titles that he remembers as having the highest circulation during his time as librarian. You can see the wear of many hands on the covers of some of these books.
Phil remembers the impact that seeing the cover of a book with the name of the illness on it could have for those newly diagnosed and their families. The support groups provided an important validation of people’s individual experience, but a published book held a different kind of validation and authority.
Do you remember receiving material from the lending library, or a visit from a MassME librarian? Or perhaps you were a librarian yourself? If so, please get in touch! We would love to hear your story.
We are interested in finding a way to make the collection available again to researchers and the public. If you would like to help with this project, please volunteer!
*The illness has, of course, been known by many different names throughout its history, as has our organization, but we will use the current term, ME/CFS, and name, MassME.
Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.