I want to start a support group in my town....need help!!!!!

Discussion in 'Fibromyalgia Main Forum' started by jlouise, May 22, 2003.

  1. jlouise

    jlouise New Member

    I need some advice for starting a support group in my town. I knoe there is a need for it, I already have about 10 people that want to join. My problem is that I fear I won't have the energy to keep it up. Please give me some ideas!!!! Thank you, jlouise
  2. tansy

    tansy New Member

    I ran a very large regional group in the UK. Didn't mean for it to be that big, but there was a lot of publicity at that time.

    It really got too much for me. The diagnostic criteria for CFS had just been broadened to included almost anyone who had fatigue. Also our information and self help advice meant people with other chronic illnesses came to us.

    People offered to help but backed off quickly because they couldn't cope either.

    On the bright side it meant a lot of progress, most health and social workers learnt a lot so patients benefitted. Only the local hospitals ignored our campaigning and study days.

    Well I learnt a lot from all that even though I felt regularly overwhelmed. Even now nothing in the area has really replaced it and it is missed.

    So as a result of the above I would advise you to start slowly, get healthy people involved. Find somewhere away from your home for initial meetings. Collate a contact list for members only, so they can keep in touch with one another. Decide early on what the aims of the group are. Try to get them all to share the workload. Any new projects or facilites should be agreed by the majority and once again they must expect to share any additional work invovled.

    I had to make a real effort to keep the very severely ill involved. They were the least demanding, but the demands of others were so overwhelming they could so easily have become isolated from the group.

    If you need funding try local companies, or local branches of national ones. We got a photocopier, fax and loads of other stuff through this.

    If you need any other ideas, or want to bounce your thoughts on this off me, please do so. I learnt it all the hard way, we can learn from others' mistakes as well as our own.

    Good luck

    Cheers,

    Tansy
    [This Message was Edited on 05/22/2003]
    [This Message was Edited on 05/22/2003]
  3. RedB

    RedB New Member

    I belong to a wonderful group, run by a woman who has had FM for 20 years. She works right at the hospital, so we have the meetings in a good-sized conference-type room. We have had many times when it was practically standing room only. I can't imagine a more wonderfully run operation as we have. (This is 45 minutes from where I live, so I unfortunately can't attend all meetings -- wish I could!)

    Starting a support group where you live is a wonderful endeavor, and I wish you well with it.


    Here are some things to consider if you go ahead with your desire:

    ...become a member of the Fibromyalgia Network -- a lot of great information there, and a newsletter.

    ...don't even consider having meetings more than once a month -- way too hard for everyone.

    ...have your meetings at the same date and time each month (for instance, third Wednesday, 7:00 p.m.) Keep it easy for people to remember through their fog.

    ...Sharon had lots of FM and CFS books -- DON'T loan them out -- they don't come back! Just keep the books at meetings for people to see, and give out information on how to purchase them.

    ...one hour is perfect for meetings -- then end them. Don't exhaust yourself, or anyone else.

    ...pass around a sign-in sheet at meetings, and include on it their addresses and phone numbers. This allows you to send out notices of each meeting, (if that is the way you decide to go) and gives you numbers to call if you have to cancel.

    ...try to have occasional speakers -- there are a lot of options out there. Holistic healing, writers of books, physical therapists, etc. Try to let people know when there will be a particular speaker/topic, or when it will be a general meeting. This way, people won't come if it's a topic they aren't interested in, and you won't have bored peoplesitting around.

    ...have some sort of copier available to you -- you will need to make copies for everyone of any information that you feel is important to hand out.

    ...keep it light! Be quietly in control of the content of the meeting. It's okay if you have an occasional meeting that gets depressing with talk of our drugs, pain, etc. etc. because people need to gain any knowledge they can. However, if meetings are always downers, it is not good for people, and chances are you could lose some attendees. Laughter is the best medicine!

    ...be aware that doing it right could involve some expense on your part. Even phone calls to give notice of cancellation can be expensive due to long distance calls.

    ...and last, be thrilled that you have this wonderful group of people on this message board to call on for advice. They are a wonderful source of knowledge.

    GOOD LUCK!

    Kathy