Different group formats

The format of support groups should try to encompass two important areas—a forum for support and sharing and an educational function. Ideally, time should be balanced between these areas according to everyone's needs.

But it is not always easy to maintain this balance and there will be groups that end up adapting to the needs of a select group of individuals—like the new patients only.

Initially, this may seem noble, but there is a disadvantage. If the group has been functioning for a while, there will be a base of "older" members who no longer get anything from the meetings. Since they tend not to speak or share, they lose interest and stop attending. Then the leader is left handling the needs of the newcomers by herself or himself.

Old-member groups are run primarily for those patients who have considerable experi­ence and knowledge of this illness. This format is good unless you are a new member. Then you will feel left out.

How to balance the differ­ent needs of the old and new member is an ongoing dilemma. What some groups have done rather successfully is to start the meeting a half-hour earlier for new members only, so they are, in a way, debriefed. Handouts of printed material are available; thus, new mem­bers have something to read rather than remember.

By the time the regular meeting starts, new members have a sense of what is going on. They may still have questions, but they don't feel completely left out.

The "all talk versus speaker" question is a common issue. Some groups want only speak­ers, and do not allow for discussion groups. These groups serve a very specific need and if your voice needs to be heard, then find a differ­ent group.

If you constantly want to learn and hear from specialists, then this format may work for you. There is no law that says you can only belong to one group. You may have to join several to fulfill all your needs.

Network and speak with many different people. Also, it is helpful to go to more than one meeting of the same group before making a final decision.

The "all talk" group works best if everyone sits in a circle. Usually each person speaks in turn and tells his or her story. This works well if everyone has a chance to speak.

The group usually doesn't last if there are one or two peo­ple who monopolize the time. Many times, a leader will recognize this situation, but not nec­essarily have the means to handle it.

Setting a time limit for each person is a good idea. Redundancy can become a serious problem, especially if there is a steady flow of newcomers speaking.

A skillful leader can keep things moving along. The benefit of this format is that the person speaking finally has a place to be heard. This opportunity is very important to the member if s/he has been struggling for any length of time with invalidation from family members or doctors.

Another format is to have a "specific talk" forum. A particular topic or question is chosen for discussion. Ideally, each person offers his or her ideas. This generates original thinking, and doesn't put anyone in the position of having to tell her personal story.

Sometimes such a ses­sion can get lively and last a lot longer than intended. Asking people to raise their hand to be recognized maintains some decorum and con­trols cross-talk. This works well in groups with more than 6-8 people. There will always be 1 or 2 people in a group, that when given the oppor­tunity, will talk too much.

Leaders, hone your skills!  Knowing the difference between mem­bers that need to talk non-stop, and those that have something to say is important.

Specific subjects, such as advocacy or disability, may hold a continuing interest for many members. If so, a person familiar with these issues may offer a short update at each meeting. Some groups make advocacy or disability their sole reason for being.

Many ME/CFS and FM patients are not able to comprehend the direct link between themselves as a patient, and the importance of research funding and advocacy. Some are cynical about government and politics and withdraw from such tasks.

To some patients, this is a larger concept than they can't presently deal with; they just want the pain to stop. This is totally understandable.

But, activism is an important motivating force for many support groups and their interest in such tasks is essential for progress against the disease. Think again whether you, as a patient, can do your part.