AN OPEN LETTER TO SCHOOL PERSONNEL

 

March 12, 1999
Dear Administrator,

In your building teachers and support personnel are trying to manage classrooms with an increasing number of children who have neurological disorders. Many of these conditions are poorly defined by medical science and treatments may be ineffective or non-existent. Myalgic Encephalopathy (M.E.) or Chronic Fatigue Syndrome (CFS) is one of these disorders and is the subject of this letter.

Onset of ME/CFS in children is usually at puberty, but this can vary greatly. This neurological disorder might look like depression, school phobia and anxiety disorder. However, upon close examination, school
personnel will find that the child has repeated and continual viral infections, sleep disorder, onset of cognitive problems not previously demonstrated, complaints of dizziness, lightheadedness and nausea among other nervous system symptoms caused by autonomic instability, muscle weakness and profound lack of energy. Feeling sick every day becomes a way of life for these kids.

Elementary school age children tend to act disoriented and display hypo and hyperactivity throughout the day. These kids are often classified ADD. Other medical problems are ignored because a clear picture does not emerge that looks like illness unless the parents insist and/or an MD is informed about ME/ CFS in children.

Middle school children with ME/CFS do poorly in school because the pace, the amount of stimulus, and the expectations increase at this age. These kids do not have the luxury of energy for the normal angst and chaos that go with being a pre-teen. Teens with this illness are absent a lot, and appear careless with no learned organizational skills. They tend to display depression along with exaggerated irritability due to symptoms of the illness over which they have no control.

At the high school level, ME/CFS students quickly fall behind in credits and end up being a statistic in your drop out population. Most often these kids do not have the energy to be behavior problems, but because of absences, and a lack of medical support, reports of truancy end up on your desk.

Most often, unless onset is early Elementary school, a key to suspecting ME/CFS in children of all ages is an unexplained shift in school performance. It is not unusual for a student identified academically Gifted and Talented to have the flu or mononucleosis, return to school, and be unable to resume prior levels of cognitive function. Once tested, these kids have a peak and valley LD profile. As you can imagine this is
very disturbing to the student and to parents.

What can you do? Please circulate this letter and booklet. The incidence of ME/CFS in children is unknown in the United States because of the lack of an epidemiological study, but in the United Kingdom, where ME has been tracked for many years in schools, professionals say that it accounts for a full 50 percent of medical student absence.

Even with appropriate accommodations and medical intervention, these students will have difficulty. ME/CFS can be a very disabling illness. However, with a team approach and your help, children can make age appropriate emotional and social gains along with academic progress.


Sincerely,

Pat Fero, MEPD
Executive Director

Medical Information and help for parents:

Contact Us
608 834 1001 (Office - leave a message)

Wisconsin ME and CFS Association, Inc.
1223 W. Main Street #141
Sun Prairie, WI 53590

Web site: www.wicfs-me.org
"Guidelines for Schools - a comprehensive article on ME/CFS for school personnel"
Internet access: www.cfidsfoundation.org/guidlines.htm