Tips for Classroom Teachers of Young People with CFIDS

By Kate Anderson, M.Ed.

Many people with CFIDS feel like they have the flu everyday. People with mild, insidious-onset CFIDS may feel like this only when they have used energy by studying or exercising, and even then, not always after these activities. A person with CFIDS (PWC) may experience headaches, sore throats and sore glands and feel slightly feverish or chilly from time to time.

Teachers need to understand that when the flu-like symptoms come on, the person with CFIDS can feel extraordinarily miserable and lacking in energy. They can have real trouble thinking clearly. When youngsters with CFIDS leave or miss school because of these symptoms, they deserve support and reassurance.

Fatigue attacks come and go with no apparent rhyme or reason and get in the way of good intentions and well-made plans. Over time they can cause people with CFIDS to become very anxious, sad, cranky and resentful. The most important role for school personnel is to reassure the child that they will not be penalized for time away or poor work during such periods and that there will be help provided so that they can catch up. The last thing they need is to panic or worry about such matters.

Far from welcoming the time off school, most youngsters with CFIDS are dedicated students and socially well adjusted youngsters who feel the loss of their education and contact with friends deeply. In most cases, educators need not fear that they are “enabling illness behavior” by being sympathetic and supportive when such children miss school.

Teachers can help by modifying school assignments

If a young person with CFIDS is not totally exhausted, he or she should keep the mind occupied with reading (if the student can focus), writing in a journal, watching a video or chatting on the computer with pals. Teachers can help by providing less challenging schoolwork to be done at such times, such as pre-reading a novel for English class or watching a video related to their schoolwork.

At times when a young person with CFIDS is recovering from a period of illness but still feeling a lack of energy, he or she can try to accomplish tasks such as schoolwork at home while in a resting position. If able to concentrate, the student can read and take notes on the sofa and may even write out school essays longhand this way. Teachers can assist by planning ahead with students some schoolwork that can reasonably be completed in this way. It is important for these youngsters to have small, workable goals and to feel that they are achieving them. Prompt evaluation framed positively will help them feel successful.
 

Teachers can help by accepting attempts to cope with fatigue in the classroom

Some of the physical postures taken by these tired youngsters may be mistaken for behavior or attitude problems. Even if you have previously not permitted “slouching” in your classroom, please reconsider your viewpoint for these disabled children. Keep in mind that it is best if young people can manage to stay in school and continue their education.

Due to the fatiguing effects of stimulation such as classroom noise, bright lights and paying attention to the lesson, youngsters may also find it helpful to put their heads down on the desk or take a short break once in a while.

It is typical with CFIDS to be not feeling well sometimes and feeling just fine other times. The CFIDS student may be a good worker sometimes, a poor worker other times. Please don’t force young PWCs into an all-or-nothing way of thinking about CFIDS and make them prove they are sick by acting sick all the time. That is a terrible trap that can cause a lot of unnecessary disability and make their lives much harder.

On their best days, youngsters with CFIDS may produce work reflecting their true potential. They should be provided with every opportunity to demonstrate this potential. However, they should not be made to feel that because they can do this some of the time they should be able to do it all the time.
 

A balance of activity and rest is difficult to achieve

For many young people with mild, insidious-onset CFIDS, it is not behaving sick too much that is the problem. For these people, the problem is that they do not accept the fact that they have CFIDS. They may overdo things and make symptoms worse for a while. This is not such a terrible problem. When you are young, it is very important to be active and involved, learning and socializing. These activities are an important part of developing into a mature individual. Paying for overdoing it with half a day on the sofa is not such a bad price. Teachers should be aware that participation in the school play, for example, might be very important to a youngster’s self-esteem and educational development but may require a couple of days of rest afterward.

However, if the activities of student with CFIDS make their symptoms so severe that they lose days or weeks of school, they may need to take a second look at what they are trying to accomplish. Achieving a workable balance is difficult to do at this stage of life and adults should not underestimate the pain caused by having to give up the normal pleasures and tasks of youth.
 

Coping with cognitive problems or “brain fog”

As with all learning disabilities, it is important to look at the student’s actual performance rather than plan on the basis of generalizations. Not every young person with CFIDS will be affected in the same way.

 Some youngsters with insidious onset may be completely unaware that they are having cognitive problems, as their functioning has come to seem normal to them. Other youngsters who notice the changes may keep their worries about them to themselves. They may be too afraid or embarrassed to admit they have these difficulties. Patience and understanding are called for, along with active teaching approaches to compensate or remediate.

It is common for people with CFIDS to have problems remembering simple things, like their own phone numbers or what they came into a room to get. These memory problems come and go with the other symptoms and so may not show up on testing. The memory problems make learning in school harder, but a number of youngsters successfully find ways to work around them.

• Allow a calculator. Since memory problems can really interfere with math, youngsters with CFIDS and memory problems should be allowed to use a calculator.
• Teach memory skills. For other subjects, a learning specialist in the school can help by teaching memory-enhancing techniques.
• Modify the curriculum. Nearly all youngsters with CFIDS need to study harder and longer than their friends do. This may be unachievable, due to fatigue, unless the workload is cut down considerably. This is probably the most important part of an individualized educational plan for the young person with CFIDS.
• Avoid embarrassment. A number of people with CFIDS have trouble, from time to time, thinking of the right word to use. They may pause a long time before answering a question, use the wrong word without realizing it, or use a similar word while feeling that they haven’t expressed themselves well. This can be an embarrassing problem in social situations but it should never become a source of humiliation in the classroom.
• Check comprehension. PWCs may have difficulty grasping what people mean. Teachers can help by privately checking the student’s understanding or providing instructions in writing.
• Permit short breaks. If a person’s ability to concentrate is related to how tired they are, taking breaks from thinking may help. It will probably work best if they can leave the learning area for a while and go somewhere that is very restful and relaxing.
   
   

Some Words of Encouragement

This article has been about problems and symptoms and may seem to emphasize the negatives in CFIDS. However, you should be reassured that many young people with CFIDS have found that their experience with CFIDS has taught them some important lessons about life. These young people say that they are proud of the way they have learned to cope with CFIDS, they have acquired a greater appreciation of true friends, they have developed new friendships and hobbies, and they believe they enjoy the little things in life more than the average person. These courageous young men and women blossom into wise, mature and balanced individuals. As a teacher of a young person with CFIDS, you play a critical role in providing the continuing educational experiences that can help greatly to produce such a positive outcome.

Kate Andersen, M.Ed., who has CFIDS herself, is a parent counselor and a part-time distance education instructor for the School of Child and Youth Care at the University of Victoria, British Columbia, Canada. She specializes in parent support and education and is conducting her doctoral research on parents seeking help with the behavior of a young child.