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What is involved in running a support group?

The answer can be "a lot" or "a little." If you're interested, the Massachusetts CFIDS/ME & FM Association has information for starting a support group, and will be happy to help.

We'll start with "a little." A few people get together once a month at someone's house and exchange ideas, medical information, doctors' comments etc. At the least, it is a social hap­pening for a very ill and isolated person.

It may look like nothing to someone healthy, but many times, just getting to that meeting means every­thing to the patient. And it has taken every­thing for her to get there.

The experience of being at a meeting is validating, especially in a group of equals. Patients who have to interact with invalidating, dismissing and negative fam­ily members, as well as medical personnel, can find support groups a very helpful and necessary lifeline.

If the group is formal (never in dress code), it may put ads in the local newspaper and/or bring in speak­ers. At any meeting refreshments may be offered. This is only possible when there are enough volunteers to provide it (assuming the group has no money to foot the bill), the rules of the building allow food, and there is space to set it up. If it is the intention of the group to provide refreshments, it takes a lot of coordination and work.

Reminding ME/CFS and FM patients of meetings also seems to be a constant necessity. The group leader may call members prior to the meeting to remind them. This works well when the group is small, but as the group becomes larger, time and help become limited.

One option is to create a telephone squad. The membership list is divided up and each person calls a few members. This works well to keep folks in touch with each other, but begins to unravel if a caller's list becomes too long.

"A lot": With growth come more needs and the call for more volunteers. The more people that help, the more you can accomplish. Some groups go to health fairs, hold seminars for medical personnel in their area, give lectures, work with the school system, conduct advocacy campaigns, hold raffles, coordinate with outside groups for interdisciplinary lectures, etc.

Exhausted yet? Some groups have run medical conferences. These take work and money, but the payoff is fantastic if just one doctor out there gets it!