Fibromyalgia Support Net, everything you need to know about Fibromyalgia

Some support groups just evolve from a few friends who meet to support each other through the various traumas experienced by Fibromyalgia sufferers.

Based on experiences with several groups which have been started here are some useful tips about starting and establishing a group - please feel free to throw in other experiences, ideas and thoughts via our contact form

Click Here For Interactive Map of Current Support Groups Across England, Ireland, Scotland and Wales

Find other sufferers and their carers in your local area - a simple letter to the editor of one or more local newspapers announcing your interest in forming a group, and a little about Fibromyalgia should get some (free) press coverage. Also a simple poster or notice in the local library and doctors surgeries should also encourage more contacts.
Make sure you give a phone number (and have an answering service on it) and email address (if any).
Make sure you record details of all contacts you get and get anyone else who may take phone calls does. Even just a contact name and telephone number, you can then expand this to include home address, mobile numbers etc and a brief background later.
Consider a simple web site or web page (even on free space with your internet service provider (ISP) which can help with details of forthcoming events, directions to venue etc and help all members of your group keep in touch.
Do not release personal information to other members without their consent. Many will trade emails and telephone numbers etc with people they have met at meetings and get on well with.
Find a venue for meetings and set a first date/time 7.30 pm start is popular. It is hard to please all potential group guests - day or time will be wrong for some, but you can still keep in touch and support them locally even if they rarely or never come to meetings.
Just chat at the first few meetings so people get to know each other.
Keep agendas simple, but do "lead" the meeting by welcoming guests, explain the purpose of the meeting and what is going on.
Get prizes donated and run a raffle raising useful funds, some groups ask for all member to bring a prize which is then added to a raffle, and usually most people win something - some are luckier than others and win more than once, others win their own prize!
Have a break part way through as many sufferers tire easily and want to stand up or walk around.
Close meeting and advise of next event and any other issues.
Use handouts of ideas and info, especially to newcomers. Provide lists of useful reading (see Bookshop) and Fibromyalgia web sites including our URL.
Stimulate interaction, some people will be shy and want "introducing" to break the ice and get chatting.
Have talks and exhibitions BUT keep them 30-60 mins at most, not to dominate the event. Avoid these for a few meetings until the group has settled down.
Finances - no one would object to a small fee per meeting - £1-£3 typically, or an annual subscription later say £10-£25 a year, with a lower fee per meeting for members.
If the group grows consider a committee, but this may not be needed initially as many smaller groups are run by one or a few people informally.
Consider a simple questionnaire or sessions to ASK people what THEY want from the group. Some groups have failed where they have been dominated by one person who failed to assess the groups needs and take time to establish firm foundations for the group.
Go to other groups in other areas to see how they are run.
Need more advice? Have some ideas to tell us for this page then Contact Us
Add your group to support group area pages click here

Starting a new support group in the UK? you may qualify for:

Free web domain
Free web hosting
Start up grant
Advice and Support

Click Here For Interactive Map of Support Groups Across England, Ireland, Scotland and Wales

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Practical Living with Fibromyalgia by Maurice S Clarke

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