reMEmber: The Chronic Fatigue Society

Self-Management Courses

Established in 1999, this group offers ongoing support to people suffering from Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). This illness can be quite serious; muscle fatigue and weakness can result in people being unable to perform everyday tasks such as driving, shopping, and typing. Other symptoms include sore throat, digestive problems, and headaches.

The group of 8 volunteers, centered at Danny House, Hurstpierpoint, West Sussex, aims to help people with CFS receive the best possible treatment so that they can lead full and healthy lives. By organising seminars for health care professionals, employers, patients, and carers, the group hopes to improve understanding and awareness of this condition.

reMEmber's self-management courses have been running since September 2001 and are catered for the particular problems of CFS/ME patients. The courses hold about 10 participants, and are taught by experienced trainers with personal experience in the area of illness. The courses consist of one two-and-a-half hour session once a week for six weeks, during which the participants discuss problems, examine coping techniques, and experience relaxation methods. The subjects covered throughout the course include:

• The problems of long term illness
• Identifying personal problems
• Goal setting and action planning
• Relaxation and visualisation
• Managing stress
• Problem solving and decision making
• Activity and pacing
• Effective communication
• Assertiveness
• Diet and healthy eating
• Dealing with problematic people
• Constructive confrontation
• Medicines managment

This is no cure for the illness itself, so these courses help patients to cope with the problems of everyday life. Self management is a well-established technique that helps people plan and organise and can help them achieve a better quality of life.

One of the largest problems facing reMEmber is that the effects of this illness on the brain can be quite serious, the cause of it is unknown, and there is yet no cure. For these reasons, people with the condition often get frustrated and discouraged. In addition, many people have never heard of CFS/ME and are unaware of its effects.

By being patient and understanding, volunteers help encourage people to find a treatment that best suits their lifestyle, whether that be medication, relaxation techniques, or self-help classes. The group has organized several educational and information events with subjects like pacing, healthy eating and social security benefits.

One of the group's greatest successes has been its self-management courses. Over a hundred people have completed them, and most say that they are managing their lives more effectively and feeling quite a bit better as a result. In December 2004, reMEmber was voted the Mid Sussex Charity of the Year by Brighton Radio and the Mid Sussex Times. This marked the organisation's fifth anniversary.

The group has also campaigned for a local clinic to which family doctors can refer patients for appropriate treatment and rehabilitation. The Sussex Primary Care Trusts has worked on a plan for a Sussex-wide CFS/ME service. This service will enable patients to be seen by an expert physician early in their illness at easily accessible centres where they will receive diagnosis, treatment and rehabilitation.

reMEmber put on a fundraising concert, ‘Glamorous Nights’, in January 2008. The programme was filled with lovely music and song from Hillcrest Harmony. ‘Glamorous Nights’ raised £1,000 for reMEmber.

Quotes

“The most important aspect of the course is that each member works out her or his own individual self management plan.” — reMEmber Website

“The support that the group provides has been extremely helpful to patients struggling to manage their condition without giving up the daily activities that they love to do.”

Contact details

Janice Kent
me_cfs@hotmail.com
01273 831733
reMEmberCFS.org.uk