Points on Organizing Care for Children with ME
By Jane Colby
Originally published in The CFIDS Chronicle, September/October 1999, page 17-18.
This article excerpt is being reprinted
in part from the July 9, 1999 issue of General Practitioner
Children with myalgic encephalomyelitis
(ME) suffer significant setbacks in social development and education due to
their condition. Unfortunately, ME (as CFS is called in England and many other
countries around the world) is not well understood by education professionals
Following are 10 points in the
collaborative care management model for ME, guidelines that I developed with Dr.
Nigel Hunt, a general practitioner who treats both adults and children with ME.
1. What is ME?
practitioner (GP) is the key health care professional in charge of the
management of ME in childhood. Suspected viral triggers for the condition
include non-polio enteroviruses, and certain types of physiotherapy and graded
exercise can exacerbate illness in some cases, just as in poliomyelitis.
Chronic fatigue syndrome is a recent
research-based name for the condition and there may be subgroups within this
term. In practice, symptoms other than fatigue, such as pain and cognitive
disturbance, may be the most disabling. The child can minimize symptoms by
careful self-management of energy expended, combined with physical aids such as
Unlike adults, a
child is required to work while sick and the GP is instrumental in facilitating
their education. "Suitable education" is a legal right, but school attendance or
rigid lesson schedules can undermine the GP’s management of the condition and
cause repeated relapses. Despair at lack of achievement may also develop.
Parents should keep in mind that distance
learning or appropriate home tuition sometimes achieves better academic results
and aids recovery more effectively. A five-year study in the United Kingdom
found that 51% of children on long-term sickness absence from school had
3. Effect of isolation.
may distress children who remain at home for long periods. For this reason, a
1996 Royal Colleges report recommended early return to school. However, as
mentioned above, relapses were commonly reported. This problem can be resolved
by GPs recommending that when well enough, a child visits school for social
contact only. School staff may visit children at home. Also, school work may be
completed by other methods that assist academic success. Children can benefit
from contact with other ME sufferers, but they also need friends from outside
the "ME world."
4. Setting a program.
The management model is designed to
help GPs develop a joint medical and educational program for children with ME.
This program should put health first, while still enabling children to achieve
their own goals despite what may be a long illness. Keep in mind that children
with ME have special educational needs by virtue of their cognitive dysfunction
and potential for relapse.
On the financial side, be aware that there
are options. Government money for children’s education is given to the school,
but can also be used for home schooling or other accommodations if the school is
not meeting the child’s needs.
5. Getting children involved
principle underlying the management model is that the child is regarded as the
client, and is closely consulted in a non-threatening situation, with no
pressure to follow established systems. Different children may have different
If a child "owns" such strategy decisions,
tempered by the GP’s advice on their feasibility, they are more likely to work,
as motivation is high. Flexibility and adaptation of the plan may be
6. Role of patient
myth about ME is that contact with patients’ organizations delays recovery. This
is now considered a simple artifact of research: patients who contact support
organizations are gener- ally more ill in the first place.
In other illnesses, patients’ organizations
are recognised sources of information and support, and many are listed in
"Supporting pupils with medical needs," a good-practice guide issued jointly by
the British Department of Health and Department for Education and Employment.
7. Helping parents.
Parents may be distressed from coping with their
child’s debilitating and painful illness, and may appear overprotective as a
result. They may have experienced misunderstandings by teachers and others whose
recommendations have unwittingly resulted in further illness and may become
overly aggressive as a result.
This is not abnormal behavior, and a little
consideration goes a long way. ME-friendly GPs and letters supporting the
child’s needs are like gold dust to families dealing with a child who has the
8. School phobia and anorexia
conditions are often confused with ME. A rule of thumb to avoid confusion with
school phobia is that a phobic child is typically well when allowed to stay at
home. Children with ME, by contrast, are typically ill on weekends after trying
to cope with school during the week. They may even aggravate the situation by
non-acceptance of their illness and attempting active leisure pursuits. Those
with anorexia nervosa have a distorted image of their bodies and fear of gaining
weight, attitudes not characteristic of ME.
9. Raising self-image.
The self-esteem of young people
with ME is often low as they cannot lead the normal life of a healthy
adolescent. There have been suicides, but caution is necessary in prescribing
antidepressants because ME sufferers are unduly sensitive to medication.
Young Action Online, an Internet service
also available in the U.K. by mail and telephone, offers free personal support.
This network of medical and other professionals with experience of ME can advise
GPs, colleagues and families. The network can be contacted via the web at
10. Where to get more
full report on the collaborative care management model will have a "frequently
asked questions" section, so your queries are valuable. Please address these to
the Collaborative Care Management Team, PO Box 4347, Stock, Ingatestone, Essex
CM4 9TE, or e-mail jane@jafc. demon.co.uk. For a copy of the preliminary report,
send a large stamped, self-addressed envelope (with an international reply
coupon for postage) to the same address. Let us know if you would like to take
part in future projects.
Editor’s Note: Jane Colby has
a new book coming out titled Zoe’s Win. The book, which tells the story
of a young girl with CFIDS, includes a section for physicians and teachers as
well as encouragement for young people with the condition. Watch next issue for