The National MS Society respects the rights of people with MS to obtain any and all information they want related to MS, including information on wellness, medical treatments or complementary therapies, and products and services. The information presented at this meeting does not necessarily reflect the views or official position of the Society, nor carry the endorsement or support of the NMSS. For specific medical advice, contact your physician. For the opinion of the Medical Advisory Board of the National MS Society on any therapy, treatment or product, please contact your local chapter at 612-335-7900 or 800-582-5296, or visit www.nationalmssociety.org.
Self-Help Groups in the National MS Society
Self-help groups have the right to choose discussion topics and speakers for meetings, and the responsibility to minimize risk to group members and to the chapter. Chapter staff and program committee members develop the curriculum and agenda for nearly all chapter programs.Self-help groups are an exception, as the group participants plan meetings and choose speakers and discussion topics. In chapters with large numbers of groups, it is often impractical (or impossible) for staff to be aware of all of the information disseminated at group meetings.
During the research process of the NMSS Self-Help Group Task Force, NMSS self-help group participants were emphatic in their desire to control the agenda of their groups, and to not be “protected” by the Society from information that might be “bad for them.” At the same time, staff expressed concerns about the implied sanction that is given to any topic of discussion at a group that is supported by the National MS Society.
With the understanding that information disseminated at self-help groups is not always consistent with information provided by the Society and its chapters, the NMSS Self-Help Group Task Force has developed a disclaimer to be read at group meetings. Just like the Society uses a disclaimer in newsletters and information packets, the volunteers and members of a self-help group can minimize risk to themselves and the chapter through the use of this disclaimer. It is particularly appropriate for a meeting in which the topic focuses on medical information, treatment, or therapy, whether or not the speaker espouses mainstream medicine or an alternative or complementary therapy, product, or service.