Young children and teenagers can also get ME (cfs) and the symptoms resemble those of adults. The same principle of illness management apply, including work and play within energy levels to help conserve energy, and plenty of physical and mental rest, rest, rest.
Find a doctor /specialist and other practitioners, preferably knowledgeable in ME (cfs) to diagnose, provide appropriate advice and support in the management of the illness.
Keep a copy of a written note from the doctor/specialist confirming the diagnosis and implications for daily living. The ability to produce a letter verifying the illness will help reduce unnecessary stress for you and your child when needing to explain long absences from school attendance and other obligations. Keep extra copies for future use.
When making a first visit to a doctor/specialist and other practitioners, take with you and hand out a copy of:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners – An Overview of the Canadian Concensus Document by Bruce M. Carruthers & Marjorie I. van de Sande
By doing this you will help raise awareness of ME (cfs), and also the information in this booklet provides a framework to help guide discussion about illness management for your child during consultations.
Copies of this booklet are available from ME/CFS Australia (Victoria).
Telephone: (03) 9888 8991
Enlist the co-operation of your child and emphasise the need to work together to manage the illness on a day to day basis.
Professional counselling from a health practitioner knowledgeable in ME (cfs) may be required as some children have difficulty understanding and accepting the limitations the illness imposes on their life.
Provide support, understanding, and help, in dealing with everyday issues.
Ensure adequate rest, alternating with periods of physical and mental stimulation (refer section on Energy Management).
Encourage participation in hobbies and leisure activities such as crafts, collecting, card games, crosswords, photography (refer section on Activities for the Inactive).
Encourage and maintain relationships with friends to prevent social isolation. Keep in touch with friends by visits, letter and card writing, telephone, and email (refer section on Activities for the Inactive).
Contact individual State ME/CFS Societies for information on support lines, support groups, email pen friends, and chat groups for the under 25 years. Refer resources section for contact details.
A lack of appetite at meal times can be a concern, especially during developing and growing years. Try offering smaller quantities of food, soup, drink, and water frequently throughout the day, or whenever food and drink can be tolerated.
A well balanced diet consisting of a variety of freshly prepared and nutrient dense ingredients to provide a maximum support to the body.
Absence from school is always a concern for parents/carers. Ongoing communication with teachers, tutors, course co-ordinators, and principals will be required.
- eligibility for special consideration application
- distance education
- private tutoring, or school arranged tutoring
- access to children’s disability programs
A note from the doctor/specialist verifying your child’s illness with ME/CFS can be useful to give school staff greater understanding when discussing these issues.
Returning back to a full study regime at school will depend on your child’s health. A slow graduated approach at first will be necessary, increasing the hours as he/she is able to.
Constantly monitor the progress of your child’s health and make adjustments as necessary.
Do remember to build into the daily routine plenty of mental and physical rest, rest, and rest.
The Association for Children with a Disability Inc provides information and advice to parents and carers of children with a disability up to 18 years of age (refer resources section for contact details).
Parents and carers are encouraged to look after their own health and wellbeing as a carer’s role is very demanding. Accept any offers of help from family, friends, neighbours, and others in the community. Contact the Commonwealth Carer Resource Centre on 1800 242 636 for information, advice, and support.
Commonwealth Carer Resource Centre
Provides information to support carers, including carer support group, home care services, respite care, legal and financial advice.
Freecall: 1800 242 636
Ask for the free carer support kit to be mailed to your address. Carer Victoria Library has books, videos, publications on carer issues, for borrowing.
Freecall: 1800 242 636
Association for Children with a Disability
Provides information and advice to parents and carers of children with a disability up
to 18 years of age.
Phone: (03) 9500 1232
Action on Disability within Ethnic Communities (ADEC)
Assists people from diverse backgrounds with a disability and their families or carers to obtain services.
Phone: (03) 9480 1666
Contact State ME/CFS Associations for more information on support services for children
ME/Chronic Fatigue Syndrome Society of NSW Inc
Phone: (02) 9904 8433
ME/CFS/FM Support Association of Queensland Inc
Phone: (07) 4632 8173
ME/CFS Network Tasmania
Phone: (03) 6234 1963
ME/Chronic Fatigue Syndrome Soc. of WA (Inc)
Phone: (08) 9346 7477
Darwin Support Group
Anne (08) 8985 3021 or David (08) 8985 1295