13. Support Groups

1)Resources   #950103-20.

2)** What is the purpose of a
Support Group? 

     a)** When you join a support group, you
     realize that you are not alone with your
     illness.

     b)**  You learn what others are doing to
     combat these illnesses.

     c)**  The support group is a good place to
     talk out problems you are having (eg
     coping with this illness, handling kids, etc). 
     Most of the other group members
     understand, because they have or are going
     through similar situations.

     d)** You have the opportunity to bring
     your spouse along so that he/she can see
     that there are many other people who are
     similarly ill.

     e)**  You may find a supportive doctor or
     specialist who is familiar with this illness.

     f)**  You have the opportunity to help the
     group with projects.

     g)** You can help to raise money to get a
     copy of "The "M.E. & F.M. Library
     Materials" in your local library.

     h) You can donate time or funds for the
     local support group.

     i)**  You can help on a sub-committee of
     M.E.B.C.  or F.M.B.C. to support others.

     j)**  Some of the support groups meet in
     the evenings, others meet in the daytime -
     there should be a convenient time for you
     to go.

     k)** Keep in touch with the support group
     leader, even if you don't attend the monthly
     meetings.  If you have your name on a
     support group list, even if you don't attend
     the meetings, you can stay informed on
     upcoming events, seminars, special
     meetings, etc.  Support groups organize
     various seminars dealing with a wide range
     of issues. 

     l)** Even after you have (partially)
     recovered, there are many in the group
     who need an advocate to help with
     receiving benefits.  You can help them as,
     hopefully, someone had help you.

     m)**  To get more information on one of
     the 37 support groups call M.E.B.C. at
     #526-3993, or F.M.B.C. at #739- 3905.

     n)** If you or someone you know is on
     GAIN, you are eligible to receive an extra
     $10 per hour to a maximum of $100 per
     month for volunteering for a registered
     non-profit organization (such as M.E.B.C.
     or F.M.B.C.)  This might be a way to
     encourage "healthy" people into the group,
     even returning phone calls or stuffing
     envelopes.  

3)** BEING A SUPPORT GROUP
LEADER 

     a)**  Approach your local community
     groups such as the Kinsmen or the Lions
     Club about getting a donation.

     b)** Inform the group members of the time
     and location of other groups meeting in
     your area.  These groups might be meeting
     at a better time, location, or day for the
     member.

     c)**  Support groups should keep the
     names of the surrounding group leaders on
     their membership list, so that those groups
     can be contacted if your group is hosting a
     special event which they might be
     interested in attending.  If your group is
     having a special evening, or speaker, have
     someone contact the leaders of the
     surrounding groups so that more people can
     attend. Also notify M.E.B.C. or F.M.B.C.
     so that an announcement can be put in the
     Newsletter.

     d)** Notify agencies in your area of your 
     group's existence - eg Community
     Services, Human Resources, the Health
     Unit, pamphlets or posters at the blood
     labs, health food stores, and naturopaths,
     chiropractors, physiotherapists, or 
     massage therapists.

          (1)** Spreading the news.  If your
          group is very active, there is
          computer software available that
          will allow a support group leader to
          record a lengthy message explaining
          details of upcoming events, or
          special notices.  The software will 
          automatically call up a list of phone
          numbers and play back the message
          (this is a similar to what Sears uses
          to tell you that your requested item
          has been received at their catalogue
          store).  M.E.B.C. is currently
          investigating the purchase of "The
          Phone Blaster Card".  This will
          allow their membership to be more
          informed and individual support
          groups to send specific group
          information. Another option is to
          record all the details on a tape
          recorder, phone individual members
          and inform them that in order to
          save your energy, and so that you
          will not miss details, you will play
          the tape to them over the phone and
          answer any questions later.  This
          reduces repeating the same
          information and questions.

     e)**  Location for Meetings.  Access to
     free rooms can be found at the following
     places: 

          (1)** Hospital meeting rooms

          (2)** Libraries

          (3)** Community services      

          (4)** Health units

          (5)** Pensioner halls

          (6)** School Board offices

          (7)** The local Chamber of
          Commerce may have a list of
          available rooms and equipment.

          (8)** Look in the local paper to find
          out where other groups are meeting;
          this might help you find a location
          for your own group.

          (9)** A private home can be used,
          however this puts a lot of pressure
          on an ill person.

     f)** Frequency and leadership of meetings:

          (1)** Some groups meet only by
          phone;

          (2)** Some have only quarterly
          meetings;

          (3)** The leadership role in the
          group could be shared with two or
          three people, one for each meeting.

     g)** Give new members information on
     where to obtain a copy of the "M.E. &
     F.M. Manual" and have them look at the
     "M.E./F.M. Library Materials" before a
     meeting so that they can ask informed
     questions, and you are not repeating
     yourself all the time with the same
     information.

     h) Pass around a donation bag at each
     meeting or conference.  As a group leader
     you will incur costs.

     i)** Fundraising.  There are books
     available through M.E.B.C. and F.M.B.C.
     which you can buy and then resell for $1
     more.  The Nightingale Physician's
     pamphlet is a good booklet to sell for a
     slightly higher fee.  Charge a $10
     refundable deposit for certain items (eg
     video tapes) that you loan out - many times
     the person does not ask for this money
     back.  You can use this money as a
     donation, and it can be used to replace
     materials not returned.

     j)** Bake sales and bingos.  Coordinate
     with your local M.E. or F.M. support
     group leaders, to have the best impact. 

     k)** Phone committee.  Give each person
     on your phone committee a list of questions
     to ask of the people they phone (eg good
     doctor references, good speakers), as well
     as a list with information (eg where
     "M.E./F.M. Library Materials" can be
     found, that the support group is meeting
     and where, and any up-coming special
     events the group may be hosting). 

     l)** Advertising for support groups can be
     done in the "Community Events" section of
     the newspaper, which is usually free.
     Posters can be put up around town and at
     health units and clinics.  The "Coming
     Events" section on the local cable station
     will give free advertising space for non-
     profit groups.  You can also pay to put
     advertisements in the newspaper.  The
     following is an example of an ad you could
     use:
     "TO WHOM IT MAY CONCERN:
     Please run the following ad under the daily
      "Community News" section, marked as  a
      continuing item. 
     
                "CHRONIC FATIGUE SYNDROME/M.E.
                       AND FIBROMYALGIA
                 TOO TIRED TO WALK, STAND OR
                 THINK, CONSTANT FLU, FEVER,
                 MUSCLE PAIN, POOR SLEEP AND
                      MEMORY, HEADACHES.
                  72 SUPPORT GROUPS IN  B.C.
                        CALL  # _________"

          (1)** {PO}{I use "C.F.S." only
          because it is more known.  I include
          both M.E. and F.M. in the
          announcement since many people
          have both illnesses, or have been
          misdiagnosed with only one.  The
          symptoms are listed since many
          people don't realize what illness
          they have.  The date, place and time
          are left out for lack of space -
          people can get that information
          when they call}

          (2)** This ad can be faxed to
          newspapers and cablevision offices,
          with a follow-up phone call to
          confirm that they will be inserting
          it.  A further call is usually needed
          in 3 months to have them continue
          running the ad. 

     m) ** Letter writing campaign.  Many
     people are not capable or willing to write
     letters to politicians. 

          (1) A quick and easy method for
          high volume campaigns might be to
          get mailing labels (3" x 3") on a
          computer, and have it automatically
          print out a statement specifying your
          wishes regarding M.E. and F.M.,
          as well as the postal address of your
          politician, with a line for a signature
          of the sender and any personal
          comments.

          (2)** Postcards - you can photocopy
          onto stiff paper, 3 postcards per
          page, copied on both sides, one side
          with the information, the other side
          with address for the government
          official. 

          (3)**  Personal Letter.   (#92055
          Video2 @ 3:01). The political
          lobbyist for the CFIDS Foundation
          feels the best campaign is to write a
          personal letter requesting answers to
          specific questions, giving details
          and personal information.  A 
          politician will usually answer each
          letter he receives, which makes
          more of an impact.  Many M.E. &
          F.M. patients will not contribute to
          a writing campaign, so the postcard
          may be the second best choice.

     n)** Energy and Money Wasted.  {PO}
     {There is a great deal of wasted effort and
     duplication by groups and government. 
     The Self-Help Resource Association is
     trying to reduce this duplication.}

          (1)** One example of duplication is
          that every non-government and
          government agency, or insurance
          company wants you to jump through
          their hoops.  {PO}{How many
          forms and certificates do you have
          to fill out to say again and again that
          you are disabled.  To stop this, I
          propose that an informal team of
          two or three doctors agree that you
          are disabled, it is reviewed every 2,
          6, or 12 months.  You get a
          certificate with a number, and your
          insurance company abides with this
          decision.  You phone separate
          agencies with your certificate
          number, they put you on their
          benefits, eg ICBC, handicapped
          parking, CPP disability, etc.)  The
          insurance company can submit
          information and reports, but the
          final decision is made by the doctor-
          committee}.

          (2)** Resource Disability Guides. 
          Many organizations spend a lot of
          time creating a duplication of
          materials.  The best Resource Guide
          I have read is the M.S. Resource
          Guide #94019 (39pp).  The M.S.
          Society is very happy to let other
          societies use the Guide - just add a 2
          or 3 page M.E. or F.M.-specific
          addendum on the back.

               (a)** The B.C. Government
               Resource Line refers to this
               guide as being the best -
               better than their own
               guide!

     o)** Have your group members request the
     local library to stock books on M.E. or
     F.M., to give many people an opportunity
     to research the illness themselves. 
     Libraries have a book purchasing fund for
     this purpose.  The library staff will see that
     there is an interest and a need for M.E. and
     F.M. information.

     p)**  Speakers.  Have speakers come to
     your meetings periodically.

          (1) Ted Hobbs - from the B.C.
          Coalition of People with
          Disabilities, phone
          #1-800-663-1278/ fax
          #604-875-9227;

          (2)  Dorothy Stanwood - grief
          counsellor phone #873-5013;

          (3) Massage therapists;

          (4) Acupuncturists;

          (5) Physiotherapists with TENS
          machine;

          (6) Naturopaths;

          (7)** An allergist on diet revision
          and food and chemical sensitivities;

          (8)** Societies for help.  Contact
          other M.E. and F.M. support
          groups, or other societies, such as
          the M.S. Society (phone #1-800-
          268-7582), or the Arthritis Society
          for information on speakers they use
          -Yoga, Reichi, Tai chi, reflexology.


     q) **  Support Network of America.  The
     CFIDS Foundation has created a network
     for support group leaders and
     organizations. #940806-74. 

     Support Network of America
     P.O. Box 220398
     Charlotte, North Carolina
     USA
     28222-0398. 




     r)** The following organization will send
     you a book on how to organize a self-help
     (support) group:
     The Canadian Council on Social
      Development
     Box 3505, Station C
     55 Parkdale
     Ottawa, Ontario
     K1Y 4G1
     (613) 728-1865
          $8 for a 100-page manual "Helping You
          Helps ME: A Guidebook for Self-Help "