FM/CFS/ME RESOURCES - Start A Support Group


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The major objective of a support group is to provide a warm and caring environment, where the illness is not questioned and where the members feel they are accepted. Knowing that others share this journey offers comfort and reassurance. People with FM/CFS/ME often feel alone with their disease and with the everyday struggles this illness brings to their lives.

I've included the following information to assist you in starting your own support group. Contact me if you have any questions or comments.

 Starting A Group Group Activities Support Articles

When To Meet

Carefully consider the time you choose to hold a meeting. Many FM and CFS/ME patients function better at different times of the day. Some people still work while others require working family members or friends to transport them to the meeting. You might want to consider having daytime and evening meetings.

Meetings should have a set length. Meetings should be long enough to address the issues at hand, but not so long that it is difficult to sit through. Many FM and CFS/ME patients can not sit for prolonged periods of time.

Most groups meet once a month, but depending on the needs of their group members, some meet more often (i.e. bi-weekly or weekly).

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Where To Meet

Try to locate rent-free meeting space. Many Hospitals, libraries, churches and community and senior centers allow groups to use their facilities at no charge. For small groups, you might want to use members homes.

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Program Structure

Many groups choose a meeting format that alternates between discussion sessions and speaker sessions, thereby providing time for both sharing and educating.

Some groups focus on a specific issue such as the education of health care providers or the general public. The focus may change as the group evolves so it's important to continually evaluate the needs of the group as a whole.

Search for volunteers to be your co-leaders. Check with local schools, friends, relatives, hospitals to start with a small core group of people that will work with you in setting up and leading your support group.

Meet with your co-leaders on the specifics of the group. Determine what supplies you'll need to get started, what your goals are, the frequency of meetings and a budget. Delegate responsibilities for each person. What do you want to accomplish at each meeting? Who will be responsible for what? Will you have refreshments? Can child care be provided, these are all questions you'll need to resolve before you begin having meetings.

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Meeting Etiquette

Announce basic meeting guidelines at the beginning of each session as a reminder to regular attendees and new participants. Have handouts with the goals for that night, contact names and phone numbers and reminders of when the next meeting will be held. That way all visitors will have a written reminder. Have some informational handouts for members to read also. Newly diagnosed members will have many unanswered questions. Be up front if no child care is available, let members know ahead of time if children are welcome and if not, don't start making exceptions.

Observe time limits. Start on time and end on time so that members feel you are reliable and if they should have babysitters, they will be able to work with them easier. Never allow one person to monopolize the time. Meetings should provide an opportunity to share feelings and frustrations for all members. Be prepared to have you or your co-leaders do most of the speaking at the first few meetings until your members begin to feel comfortable with each other.

Place chairs in a circle and close enough that all members can hear. Remember that it is normal for things to move slowly in the first stages of your group's formation. It is important not to go too fast. Let people get to know each other, enjoy each other and build trust within the group. Give your support group at least 2 months to get going. In the beginning members may come and go but if you keep at it, you will eventually have a small core group that is always there.

Step up a support system and network for your members in between meetings. Hand out lists of phone numbers and email addresses. Encourage your members to talk with each other in between meetings.

Because many FM and CFS/ME patients are chemically sensitive, hold fragrance-free, smoke-free meetings for your members.

Keep injecting fresh ideas, new guest speakers and have a written plan for each meeting to keep everyone on track. Keep it lively, interesting and fun so the members look forward to getting together.

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Getting The Word Out

Newspapers often print small articles or free weekly or monthly listings to announce local meetings. Ask them to publish information on support group events in the Community Activities (or a similar) section of the paper. Be sure to note the meeting place, date, time and a phone number so interested people can call for more information.

A note: If you include your phone number in any information, consider investing in an answering machine. Recording a message about your group and the next meeting will prevent you from repeating the same information to everyone who calls. If an answering machine is not available, consider rotating the number that is published. For example, the first week, the group leader's name and number would be listed and the second week, the co-leader's information will appear. This will relieve some of the burden of one person having to answer all the inquiry calls. It is also helpful to list the times the contact person is available to take calls.

Many organizations also allow free advertisements for meetings and such on their web sites.

Cable T. V. stations sometimes provide free listings on community bulletin boards. Also, radio stations will sometimes air short public service announcements.

Flyers often help attract participants when placed in doctors' offices, libraries, pharmacies, health food stores, grocery stores, pet stores and other common areas.

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Meeting Expenses/Dues

Many groups charge dues to cover general expenses such as copying, mailings, phone bills, etc. You will have to evaluate group expenses to determine a reasonable dues structure for your group. If you decide to ask for dues or contributions, start at the first meeting as it is more difficult to get people to contribute if they are used to the group leader taking care of everything. Too many groups disband because group leaders took responsibility for all of the group expenses until they could no longer afford to and then had to ask for donations and/or dues.

Some groups choose not to charge specific dues, but instead request contributions. Members of the support group should decide what expenses they are willing to support by making nominal contributions at each meeting. Most groups "pass the hat" so members can discreetly make contributions they can afford.

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Sign-Up Sheets

Have a sign-up sheet available at meetings, so you can maintain a list of current group members. Invite people to share their name, address, telephone number(s) and e-mail address. Distribute the roster, with permission of persons listed, so members can support each other between meetings.

Ask people to note areas in which they might be able to offer assistance such as providing telephone coverage, supplying refreshments at meetings, coordinating speakers, participating in media/public relations interviews or Awareness Day/public policy activities.

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When requesting help from volunteers, set a time limit on the duty so it's not overwhelming. For instance, "Could you be the greeter at the January meeting?" You'll be more likely to get help if the length of the assignment is limited. If possible, have a back-up person available for key responsibilities.

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Information Packets

New group members often find it helpful to receive an information packet prior to or at their first meeting. Information packets can also be good resources for family members, health care providers, the general public, and the media.

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Educational Materials

FM/CFS/ME Fact Sheet - Outlines all aspects of these medical conditions for others to learn from. You are welcome to copy and reprint all information on this page.

Frequently Asked Questions - Questions related to FM and CFS/ME.

Drug Database - Lists the medications being used for the treatment of FM and CFS/ME, along with medical warnings and drug interactions.

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Start A Phone Line

Some groups maintain a Telephone Help Line, which allow FM and/or CFS/ME patients to receive support between meetings. Although this is an ambitious project, if it is planned well and monitored properly, it can be very beneficial to group members. This should be considered a group activity so include all members when making the decision to begin this project. The following information will help you:

  • One person should act as the Help Line coordinator and manage the volunteer schedule.

  • Volunteers can be scheduled to staff a central telephone line at set hours on specific days or to receive calls at their homes either by using call forwarding from the group's phone number or by notifying callers of the volunteer's home number, using an answering machine or voice mail.

  • The support group's answering machine message should be kept current, providing the Help Line phone number, hours the Help Line is available and the volunteer's first name only.

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Make A Healthcare Directory

Patients frequently ask:

"How can I find a doctor who treats FM and/or CFS/ME?"

Your support group can compile a list of health care professionals in your area who have diagnosed and treated members of the support group and other patients. A volunteer should be responsible for maintaining the list and making it available to patients and family members.

For help in finding doctors, we suggest you visit our Doctor Database. Along with a database of 7363 doctors who treat FM and/or CFS/ME in 80 countriesworld wide. We also offer the following information:

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Create A Lending Library

Many support groups allow members to borrow items from a lending library. To start a lending library, ask group members to contribute FM and/or CFS/ME related or chronic illness-related items such as books, audio tapes, videotapes, medical and media articles and past issues of research news and articles.

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Publish A Newsletter

Many FM and/or CFS/ME support groups publish a newsletter to communicate with its members between meetings. Support group newsletters should be brief, as most patients prefer shorter, more frequent issues. Suggested contents include:

  • Support group meeting information, including dates, times, locations and topics
  • General FM and/or CFS/ME information
  • Local and national news regarding FM and/or CFS/ME and chronic illness
  • Opportunities to become involved in advocacy and fund raising efforts
  • Articles by health care professionals for those with FM and/or CFS/ME
  • Reviews and summaries of medical or media articles and other periodicals
  • Patient ads such as those looking for services, roommates, etc.
  • Local community resources with contact information when applicable
  • Humorous articles and cartoons

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Participate In Awareness Day

In 1993, the FM and CFS/ME community identified May 12th as a day to make the general public and government officials aware of the devastation caused by FM and CFS/ME. Your group can help continue this important awareness effort building by coordinating local Awareness Day activities. For more information on Awareness Activities visit our FM/CFS/ME RESOURCES Awareness pages. Remember, you don't have to wait until May 12th to begin your Awareness campaign.

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Group 12 Steps

There are many issues to consider when having a support group meeting. Although you can't anticipate every issue that may arise, you should be aware of the following 12 positive and negative forces that affect most groups:

1. Group Size
Groups that are too large make it difficult to meet the needs of all the members and should be broken up into subgroups. Groups that are too small can create a sense of "forced intimacy."

2. Session Length
This will depend on the physical/mental ability of group members and size of the group. Enough time needs to be allowed for each member to have an opportunity to share, without allowing the session to last beyond the physical and/or mental durability of its members.

3. Setting
Take into consideration accessibility, privacy and comfort. Also consider the seating arrangement (a circle usually works best in creating a sense of cohesion).

4. Member Composition
Individual personalities, backgrounds and styles of expression need to be accommodated and worked with, even though a group may already have a sense of universality. Remain aware of who is in the group and how to best communicate with each person.

5. Level of Goodwill
Sometimes members in a group will be resistant, hostile or disruptive. It is wise to have a plan for dealing with this inevitable occurrence before it happens. It is equally important for group members to have some input in developing this plan.

6. Level of Commitment
When the level of commitment wanes, it is a sure sign that members are not getting their needs met. Evaluation on a regular basis is vital for maintaining a high sense of member satisfaction.

7. Level of Trust
Trust level in a group waxes and wanes as the group progresses. It is important to be aware of forces that can contribute to a low level of trust. These forces include fear of breach of confidentiality, fear of being criticized or judged, existence of cliques within a group, hostile group members and inadequate group leadership.

8. Members' Attitudes Toward Each Other
If a leader finds that certain members of a group simply do not care for each other and this interferes with group cohesion, meeting with those members individually may be necessary to try to resolve the problem.

9. Members' Attitudes Toward the Leader
The leader must be open to the fact that he/she may not be appropriate for the group. Regular evaluation and feedback from the group members is vital.

10. Leader's Attitude Toward Members
The leader must also be aware of any biases or prejudices he/she may have toward certain group members or general populations. Members need to speak up if they perceive a bias or prejudice the leader may not recognize.

11. Interaction Patterns of Members and Leader
The group should try to speak to other members of the group as well as to the leader. The leader needs to remain aware of his/her level of interaction so he/she does not dominate the group.

12. Stage of Group
Groups are made of living people who grow and change, and as such groups are living, developing and dynamic as well. Groups go through different growth stages and issues or concerns need to be taken in the context of the developmental stage of the group.

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Sharing The Load

You know you can't do everything, and you also know that in a "mutual help" group you shouldn't. Other members must become involved. Here are a few examples to help you enlist other participants:

  • Identify and name the jobs that need to be done. Consider "brainstorming" at one of your meetings. Come up with a list of the jobs and be as clear as possible as to what will be involved. Circulate a sign-up sheet at meetings.

  • Ask potential volunteers individually in private. Be sure to indicate how you will support them if they have a problem.

  • Ask them to serve in a specific job BUT allow them to volunteer for something else as well.

  • Always specify how long they will be expected to serve, for example: three months, six months, etc. Consider a fixed term of one or two years for some jobs.

  • If you encounter problems in finding one individual to do a specific job, ask two people to volunteer to share the responsibility of that job. More people will accept if they know they won't be expected to do everything.

  • Be sure to continuously acknowledge people publicly for the jobs/tasks accomplished. This can be done at meetings, as well as through the group's newsletter.

  • Circulate or hand out skills/resources sheets. Every member is asked to complete a sheet with their name and skills description, type of personal contacts (journalist in the family, uncle is a caterer, etc.) and phone number.

Eventually you will have a list of names, skills and resources to match up with your jobs. It may be a helpful list to check for a replacement if someone suddenly becomes ill or leaves the group. The skills category may provide new and exciting positions, example: if someone just writes "throws great parties," sign them up to be the social chairperson. Remember, it is never too late to start a sign-up sheet. Identify your helpers now!

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Guest Speakers

Support group leaders should make every effort to offer unbiased, well-rounded programs. Here are some tips for finding speakers:

  • Tap the experience and contacts of your group members because a member's personal knowledge of a speaker is usually a good reference. Also, a potential speaker may be more likely to respond to someone he/she knows personally. Does someone in your group know of a local professional, e.g., a physician, therapist, lawyer, or another who is knowledgeable and can be approached?

  • Contact local social service and government agencies and hospitals (sometimes they already have lists of possible speakers - contact public/community relations departments). If you know what you want, start at the top by writing a letter to the Director or CEO

  • Write or call the chairperson of a specific department at your local college or universities. For example, the Psychology Department for speakers to address stress, the Nursing Department for self-care instruction, etc.

  • Government agencies - Social Security Administration, Division of Vocational Rehabilitation, etc.

  • Lawyers - especially those specializing in discrimination law, financial planning, insurance, and disability law. Our Disability Attorney Database consists of 777 attorneys in Canada, South Africa, and the USA that specialize in Social Security disability and/or disability law. This might be a good place to start.

  • Professional associations - (for psychologists, social workers, nurses, doctors, county medical society, others) to ask for local speakers on subjects such as: stress management, a specific type of therapy, medications, choosing a good therapist/doctor, etc.

  • Alternative health providers - on herbal medicine, meditation, yoga, or another. (Use caution when exploring this option for minimizing risk to group members.)

  • Pharmaceutical company representatives - (a panel with several representatives will offer a more well-rounded presentation), or a local pharmacist on drug interactions and taking medicines wisely.

  • Representatives from other FM and/or CFS/ME support groups, to speak about their group's best meetings, discussions, speakers, and other successful activities they have had.

  • Consider using a pre-recorded or "canned speaker," i.e., tape of radio interview show (25 minutes long or less), conference presentation, portion of a TV program, etc. Or start a tape library of your own, by asking some of your "live guests" if you may tape their presentation for your group's lending library collection.
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