Case Studies: FIBROM-L

LISTSERV Discussion Award: FIBROM-L@MITVMA.MIT.EDU

LISTSERV Choice Awards

FIBROM-L puts the human side of email list communication into action every day. Begun in 1992, FIBROM-L is an active, informative and supportive discussion community hosted by the Massachusetts Institute of Technology (MIT), for sufferers of fibromyalgia, a complex and often debilitating disorder that causes chronic pain and fatigue as well as neurological, muscular and skeletal problems. FIBROM-L is available as a global support group for its 1,023 subscribers, primarily in North America as well as in Europe and Australia.

"Our mission is to provide hope, support and answers to all who join us. If a person has found FIBROM-L, we welcome them with open arms, and also feel their pain in having to find us. Fibromyalgia and the related disorders of Chronic Fatigue and Chronic Myofascial Pain can be insidious diseases, stripping a person of their self-esteem, their friends and family and their 'old life' – the active confident person that used to be is now replaced by a person that deals with constant unrelenting pain, fatigue and a host of other maladies. FIBROM-L and its members constantly step up to the plate and make a new member feel welcomed, and most importantly understood," said Audrey Liebl, FIBROM-L list owner and co-facilitator.

Liebl's fellow co-facilitators include Barb Hunter, Bill Hartwell, Sue Ellen Colter, Laila Newton and Rita Shaw, as well as back-up moderators Jane Kohler-Lutz and Chip Davis. The co-facilitators rotate the list moderation responsibility on a weekly basis while working as a team to make decisions and discuss any challenges that may arise with the discussion forum. In addition to the "Welcome Message" and "Rules and Regulations" that members receive when they initially join the group, the co-facilitators also provide easy-to-use one-page "cheat sheets" to assist novice list members with list functions such as topics and message snipping. The cheat sheets and basic information about FIBROM-L are also available online thanks to the FMS Community website at www.fmscommunity.org.

All of FIBROM-L's members have fibromyalgia, with the exception of some spouses and/or caregivers of list members, one of whom subscribed because his wife's illness prevents her from being able to use the computer, so he prints out the digest compilations for her to read each day. FIBROM-L's lively discussion community features an average of 25 to 75 postings and 3 digest messages each day. Messages cover a variety of subjects, organized by 11 topic headings yet generally reinforce the community's goal of exchanging information and support amongst a group of people struggling with the illness as well as the psychological and social ramifications of having a condition that is frequently misunderstood and misdiagnosed.

Liebl notes that FIBROM-L has a special "MEDQUERY" topic for questions to be directed to David Nye, M.D., a fibromyalgia expert who, while he cannot diagnose over the Internet, responds to basic questions and points list members to resources and informed clinicians in their area.

"We deal with doctors who still insist on claiming that fibromyalgia is 'all in your head'. We've put people in touch with doctors that will treat them. If you're a person with fibromyalgia and if your family members and friends don't understand, you can really become isolated. The email group is one place where you don't feel isolated because everybody else understands what you're going through," said Liebl, who in the summer of 1998 went from leading an active life as a mother, a professional and a volunteer Emergency Medical Technician (EMT) to being bedridden with pain and fatigue and being unable to work and later losing her home.

"Fibromyalgia can absolutely devastate your life," said Liebl, noting that a significant component of FIBROM-L's discussion is around the difficult transition to life with a disability and the negative feelings that can ensue. So the emphasis is on focusing subscribers on what they can do and helping them look at their situations as positively as possible. "People will say ‘I can't do this anymore, and I can't do that anymore'. Now I've got an 11-year-old daughter and a two-year-old son. I can't chase around after him in the yard, but I can sit down and watch him run around, or we can sit and snuggle on the couch and read a book, whereas I couldn't do that with my daughter because I was working two jobs," added Liebl.

An online support group, FIBROM-L has even aided fibromyalgia sufferers who were close to suicide. "We helped two people who each wrote a note to the list saying they feel like ending their lives. As soon as the co-facilitators and list members saw that, we went into high gear and called for help so that the authorities could do a welfare check to see if the people were okay," Liebl said. She added that these calls resulted in the two individuals ended up getting treatment that they needed and coming back to the list and thanking everyone. "If it hadn't been for their sending out that email, no one would have known. We helped save a couple of lives."

Liebl noted that accomplishing FIBROM-L's mission is easy because of L-Soft's technology. "LISTSERV is absolutely awesome software. If I need to read the manual and look something up, it's there, and I don't have to have a big book that I have to thumb through, which is especially helpful with the short-term memory loss from fibromyalgia! All of the co-facilitators know all the commands. For example, we have only had to block 3 people, which we did easily by adding their names into the filter line in header. The manual explains everything in an easy-to-use format."

As for FIBROM-L's future, Liebl said she'd like to see the list's membership proliferate around the world. "I'd really like to see us spread out to more of a global entity. We'd like to get more bi-lingual co-facilitators and encourage people to use translation tools as we grow and set up different sub-lists," she said. "Without the lists and the software, we wouldn't be able to do what we do for so many people."

FIBROM-L Topics

ANNOUNCE

Used by co-facilitators for general announcements

ADMINISTRATION

Used to direct questions to co-facilitators

CHAT

Intended for general dialogue

CONJECTURE

Designed as a platform for theorizing about different treatments, sharing ideas

DISABILITY

Used as a forum to discuss social security income and other disability-related issues

FMS

Aimed at providing an open medical discussion about fibromyalgia and all associated conditions

MEDQUERY

Solely used to direct questions to Dr. Nye

RESEARCH

Intended to disseminate research findings, posted by several members who review and share information the medical literature

SPIRITUAL

Used as a corner for people to share their views on prayer and other spiritual topics

SUPPORT

Provided as a forum for members to reach out for and give support

VENT

Aimed at allowing members to blow off steam and vent


 


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