Guidelines for Schools: Understanding and
Accommodating CFIDS and FMS
TABLE OF CONTENTS
Educational Issues and Accommodation
A Different Kind of Illness
Cognitive, Neuro-Cognitive and Physical Difficulties
General Information for Planning
In-School Accommodation '
Children at Risk
I'm Just a Kid
Type and Timing of Onset
The Symptom Risk
If There Is No Diagnosis - So What?
Checklist for School Nurses
A Student's Open Letter
Illnesses CFIDS Mimics
Under the Law:
As we went to press...
Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)1, also known as
Chronic Fatigue Syndrome (CFS) is a complex illness that is as baffling as it is
devastating. Studies report no clinical differentiation between CFIDS and
Fibromyalgia Syndrome (FMS). Therefore, reference throughout this publication is
The National Institutes for Allergy and Infectious Disease has placed CFIDS
in a priority-one category on its list of New and/or Reemerging and Drug
Resistant Infectious Diseases. A recent British study found CFIDS responsible
for forty-two percent of all long-term school absence.2 Commonly thought to be
an adult illness, CFIDS/FMS affects children of all ages. It is an illness which
differs, in many aspects, from other pediatric illnesses with which school
officials are familiar. For the child or adolescent with CFIDS/FMS, the
combination of cognitive, neuro-logical, and physical symptoms, coupled with the
unpredictability of symptom presentation and illness course, demands
understanding and accommodation. Symptoms can wax and wane, become chronic or be
These materials are provided to assist in understanding some of the unique
features of the illness, and offer comprehensive information and guidelines, in
order to help construct an appropiate servicing plan. The effort to educate
school personnel is extraordinarily important. The knowledgeable individual who
recognizes the typical physical and/or cognitive changes can make the difference
between health maintenance or worsening of the clinical condition.
School officials have a responsibility to protect the individual and the
educational process against abuse. However, among the obstacles faced by the
parent and child are: parent and pediatric unfamiliarity with the manifestations
and severity of CFIDS/FMS; labeling and misdiagnosis as "school phobic",
depressed, or a behavior problem; failure to be protected under the law as
health impaired; and inappropriate action by school personnel for what to them
We need your help. In too many cases, the acutely sick child has been dragged
to court as a truant, or the family through the social service system as
negligent. Frighteningly, these incidences are reported by educated parents with
medical insurance who had been and continued to utilize every medical option
available, and were in the midst of the diagnosis process.
We encourage you to increase awareness by utilizing these materials for staff
workshops. Statistically, teachers, school nurses, and others who work with
young people are at greater risk for CFIDS/FMS than the general population.
We anticipate your assistance in insuring the widest possible distribution
among members of your educational community. "Educational community" is intended
to be very broadly defined. It should be reflective of not only those within a
school system or private education setting, but anyone who works with children
or young adults. This might also include counselors, coaches, attendance or
truant officers, persons in social work, juvenile court officers, probation
officers and lawyers, psychologists with whom the school or system contracts for
services, even school physicians and other members of the pediatric medical
The whole spirit of education is to maximize educational achieve-ment and
help students realize their full academic potential. With this in mind, these
materials were developed. The collaborative effort of educators and parents with
backgrounds in classroom teaching, nursing, special education, higher education,
counseling, environmental science, and people with first-hand knowledge of
CFIDS/FM and Multiple Chemical Sensitivity (MCS)3, provides the most
comprehensive picture of the needs of our youth.
Although a cure remains elusive, understanding and support have been found to
be significantly important in the life of the student with CFIDS/FMS.
Educational Issues and Accommodation
Understanding the illness is a prerequisite to appropriate accommodation. A
description of some of the symptoms, general guidelines for accommodation
planning, and suggestions for servicing are included.
As with most illnesses, the range of severity varies from individual to
individual. Many of the children identified with CFIDS/FMS are totally unable to
attend school for long periods of time, with some unable even to be tutored in a
home setting. Some initially attempt a reduced course load or timetable, only to
worsen and miss years, rather than months of school. Others, supported through
services conducive to health levels, are able to "add to" rather than "subtract
from" activity levels over time. Still others function relatively well for a few
years and then relapse, missing significant time from school.
Because of the number of days a student may be absent from class, protection
under the law must be provided. This protection and accommodation of learning
issues is accomplished through one, or a combination, of provisions of state or
federal special education laws.1 Sadly, too many of our children withdraw from
school at the mandatory attendance age. This is not due to lack of desire to
gain an education. They are either too ill, or experience significant worsening
in their clinical condition, due to stress caused by unreasonable expectations
and/or punitive action.
One premise as to why school personnel take punitive action is the evolution
of definitions used within the educational arena. The definitions of
"accommodation" and "least restrictive" have come to mean "inclusion";
"inclusion" has become synonymous with regular classroom attendance. Once the
illness is understood, it is obvious that the words "inclusion" and
"integration" do not necessarily equate to "educational access",
"accommodation", or "least restrictive environment" for all students. Certainly
this is true for many students with CFIDS/FMS. Hopefully this information will
provide a basis for re-definition to insure appropriate educational services for
students with CFIDS/FMS.
A DIFFERENT KIND OF ILLNESS
There are several factors which make this a distinct illness. It is the
distinctive features which make accommodation a continuous and fluid, rather
than static process. It is not unusual for the student's educational plan to
need frequent revision in the course of the school year.
CFIDS/FMS is not a benign illness. It affects every organ, every system, and
each of the body's senses. The name is totally inadequate in description.
"Fatigue" is a most inappropriate word to describe the generalized weakness or
malaise experienced after the smallest exertion. "Fatigue" leads one to think of
being tired, and although there may be periods of extended sleeping, there are
also periods of extended insomnia. Restorative sleep is rarely realized. In
addition, it is not unusual for severe pain and other symptoms to become more
pronounced at bedtime. For those children whose illness begins with muscle pain,
the pain is extraordinary, and shifting.The student may have many extended
absences, without a definitive medical explanation. It is not unusual for the
diagnosis period to take a year or more. This topic is more fully developed in a
section called Children at Risk.
CFIDS/FMS is an illness which cycles. There are other illnesses that cycle.
One example is multiple sclerosis (MS). However, MS is generally not seen in the
pediatric or adolescent population. Educators are generally unfamiliar with the
problems a cycling illness creates, especially within the structured setting of
our elementary and secondary institutions. The number, inconsistency and
unpredictability of symptoms also make the illness unique. "Every day is up for
grabs".CFIDS/FMS is not a motivational illness. Don't pressure. These students
want nothing more than to resume normal activity, and they will when their
bodies and minds are able. Any gain realized from pushing beyond limits will be
short lived, and result in a worsening of the overall clinical condition.
A person with CFIDS/FMS may change from a somewhat functional level to
totally incapacitated within the same hour or day, often without warning. It is
important this not be misinter-preted as negative child/adolescent behavior.
There is a "payback" or "pay for" feature. If they do something extra, however
limited in nature, increase in symptoms (the pay for) may be realized one or two
days latter. It is often impossible to determine the cause of a worsening
condition. Relapses, or long periods of worsened condition, are common. They are
known to occur if the person does too much, or has certain exposures; however,
relapses can occur for no explainable reason.
Changes of season seem to exacerbate symptoms and be particularly devastating
in the life of a student. With the seasonal changes occuring somewhere between
September to October, December to January, and April to May, we can see many
correlations with the academic calendar
Some known "relapse antagonists" include, but are certainly not limited to
the following: exercise, bacterial or viral infection, allergic exposure,
extreme heat or cold, barometric pressure changes, florescent lighting,
allergy-inducing exposure (mold and mildew, dust, etc.), chemical exposure
(cleaning fluids, paint, hair spray, colognes, newsprint, new carpeting,
particle board, "white boards" and marker, copies made with "wet" copy machine
process). How CFIDS/FMS friendly is your school plant?
COGNITIVE, NEURO-COGNITIVE AND PHYSICAL DIFFICULTIES
CFIDS/FMS is unique in regard to the cognitive and neurological problems
which have been identified for some years by researchers. These types of
problems are also referred to as neuro-cognitive.
Perhaps the most efficient way to describe the memory and neuro-cognitive
impairments found in CFIDS/FMS, is to cite reported research. Problems with
memory have been documented for some time. Dr. Curt Sandman, director of
research at the State Research Institute and Professor of Psychiatry and Human
Behavior at the University of California at Irvine has done considerable
research in this area. The conclusions of his studies with CFS patients are as
...we see a pattern that reflects memory consolidation difficulties.
Memories that are made are very fragile. These patients are tremendously
susceptible to memory overload and there is minimal visual sequencing
deficit, as well as some attentional deficit. They also have a tendency to
overestimate performance. 2
Following is a very concise list of neuropsychological impairments of CFIDS as
reported by Dr. Linda Miller Iger, PhD. Dr. Miller Iger holds doctoral degrees
in both counseling psychology and clinical psychology, and is involved clinical
and research activity in California.
Amongst the neuropsychological problems patients experience are word
blocking (not being able to find a word), word transposition (putting the
wrong word in), severe headaches, photosensitivity (an inability to tolerate
bright lights), fogginess, forgetfulness, directional problems...acalculia
(an inability to do even simple mathematical problems), anomia (inability to
match names and faces), visual spatial problems (e.g., inability to judge
distances...), auditory verbal memory disturbances (inability to follow
spoken directions), impaired judgment, inability to link auditory and visual
input, (e.g., distracted by sounds...), dyslexic-like symptoms (letter
reversals), difficulty maintaining attentional set (inability to remain on
task), difficultly/impairment in inputting, encoding, and retrieving
information (comprehending and remembering what has been read). 3
Dr. Sheila Bastien, a California neuropsychologist and researcher, has reported
identical findings to those of Dr. Iger. In addition, documentation of loss of
IQ has been found by Bastien, Iger, and others. In a federally funded study,
Benjamin Natelson documented loss of IQ as long as a day later following
A symptom list appears in the Appendix. However, in addition to those already
mentioned, symptoms which most clearly relate to the educational setting are
discussed in this section.
Eyes are tired, sore, watery, dry, weak and itchy with problems focusing.
Vision is often blurred, making it difficult to tell one word from another.
Images often appear to jiggle or bounce on the page. There is impaired depth
perception and occasional double vision. It is difficult to focus on an object
that is brought from far to near. Most have episodes of severe pain behind the
eye and periods of extreme sensitivity to light when it is necessary to wear
sunglasses while inside. During these periods reading is totally impossible.
Students should not be criticized for poor penmanship. The small muscles in
fingers tire easily (or become swollen, numb, and/or painful) causing writing to
become difficult and penmanship to appear sloppy and inappropriate for the
student's age. Many revert to printing.The student may appear to fidget. Some
suffer from jittery, or aching sensations especially in the extremities when
limbs are at rest. Most suffer from fairly constant discomfort or pain; others
may be trying to stay awake. Likewise, poor posture should not be misinterpreted
as lack of interest. Sitting for any period of time is very uncomfortable, often
very painful. Pain and weakness in the neck is very common and necessitates
supporting the head. The student may need to eat or drink during a class session
so that weakness, lightheadness, or dehydration can be eliminated or reversed.
It is recommended to persons with CFIDS/FMS that dressing in layers may be
the most effective way to deal with dramatic shifts in body temperature. Permit
the student to dress as warmly as necessary without sanction or calling
attention to the student's attire, or the need to "shed and re-layer". Leaving a
class session abruptly to use the bathroom should be allowed without question.
There are times when any sound, however quiet, appears volumes louder, sometimes
painful, and always distracting, causing an almost instantaneous loss of
During periods of severity of symptoms persons speak or respond in one or two
words or syllables. This is especially difficult for the student in the course
of class period. There are times when talking is an enormous effort, as though
it takes all the energy they have. Again, caution should be exercised not to
misinterpret such action. You may want to review each of your cases of ADD,
school phobia, depression, and truancy, to see if the current diagnosis really
GENERAL INFORMATION FOR PLANNING
As with other illnesses, there is a wide range in the severity of CFIDS/FMS.
Some might be able to make it through a school day with the accommodation of a
rest period. Others are unable to leave their beds. Regardless of the
individual's status, there are some general considerations which should be taken
into account when planning.
Listen to the caretaker in terms of level of health and hours of ability for
learning. That person sees the results of activity, and is aware of problems
during the night and outside a class period if the student is able to attend
Listen to the student. He or she is the best judge of level of functioning.
Remember individuals tend to overestimate, not underestimate, what they are able
Empower the parent. When a child gets sick with a virus or mono-like illness,
no parent assumes the condition will last for a long period of time. Most
presume if they say the child is sick they will be believed. Most have no idea
of the consequences of extended absences if they are not believed. Many have
never been involved with the special education department, its process, laws,
language, and have never thought of what types of accommodative measures are
possible. You must empower them.
Create a plan to accommodate the "worst days" scenario.
An effective liaison should be assigned to insure continuity.
Insure that at the end of one school year the plan for the next year is in
place. This should insure all services, including tutors if necessary, are in
place so there is no delay in beginning the next year. Presuming the child will
recover during summer vacation is unreasonable. It is safe to assume the
services necessary at the conclusion of one year will still be needed in the
It is important to understand the person with CFIDS/FMS will have difficulty
learning visually and auditorially, or both, and that the impairment of a
particular learning mechanism may fluctuate within the course of a class period.
Additionally, the individual is unaware there is a problem going on. If unaware
of what is happening, s/he is unable to communicate there is a problem or make
accommodation for it. Because of this, all instruction, whether homebound
tutoring or classroom instruction, should be audiotaped.4
Due to the combination of physical and cognitive disabilities, create a
comprehensive plan tailored to meet fluctuating mental and physical abilities.
This includes testing accommodation.
Testing accommodation or modification allows for an equal opportunity to
demonstrate capabilities, and may call for the following:5
Flexible Scheduling: extend the time allotted, or administer in several
sessions during the same day or over several days.
Testing in general may present problems. If you think about it, the student has
fewer hours in which to function in general. Therefore, it may take longer to
shower and dress than the non-ill peer. It will take twice as long to study the
same material. Because s/he wants to do well (perform at the pre-illness state),
s/he studies perhaps longer than recommended. What follows is the inability to
take the test at all because of relapse from preparation. The same happens with
Flexible Setting: administer the test in a separate location with minimal
Revised Test Format and/or Directions: read the directions and/or the
questions, large print, changing the spacing, location or size of the answer
spaces or type of question, fewer items on each page, modification of the
Some courses may need to be modified due to the nature of the course. Those
which come immediately to mind are biology and chemistry. If the individual is
sensitive to the chemicals used in the laboratory portion of the course, it may
need to be adjusted. Please note: this is not permission for a school system to
decide that a biology, chemistry, or other science tutor cannot be located to
fit the student's best hours of availability.
If the plan includes some classroom and some homebound instruction,
provisions need to be made for those times when the student misses classroom
days. The plan should clearly state who is responsible for presenting the
material. There should also be a statement in the plan that the student should
not be expected to re-enter the class until s/he is caught up to the rest of the
class. This measure insures the student is not penalized because of illness.
Special mention should be made concerning the younger child at the elementary
level. If the child is too ill to spend regular time outside the house, it may
be socially beneficial to provide the child with the option of a home program
and visiting with classmates during lunchtime. This is quite often a physician
recomendation, but is only useful if it is productive for the child, and not
followed by a relapse.
The use of technology may also play a role in the planning process.
Students able to attend class still face periods of relapse. Due to the
unpredictaility of when and how long a relapse may occur, video taping of
the student's classes with a set of visuals (board projection or other
teacher notes) may be the most complete accommodative measure. Some
individual tutoring may still be necessary; however, the tutor knows what
the teacher is doing, the child knows what is going on in the classroom, and
tutorial services are used to supplement, refine, reinforce, or further
individualize the instruction, rather than to replace classroom instruction.
Technology through closed circuit or computer links, mail and FAX
machines may allow the student to know what is going on or submit work with
the rest of the class. These might be options for the individual who is
homebound but able to receive some instruction during a regular class
As with other options mentioned, computer use is not for everyone. The
student with eye problems, headaches, seizure activity or sensitivity to
light could fail to benefit.
Many of our students have been homebound for years. Eventually, some may be
able to begin to add an activity to the schedule. This usually happens over a
period of years, not months. It is important that the homebound student be
accommodated with understand-ing. He or she is very ill.
The tutor needs to be educated by the school system personnel about CFIDS/FMS
as would be done for any other severe medical situation. That CFIDS/FMS is not a
motivational illness should be thoroughly understood.
As one of the only persons outside the immediate family with whom the student
may have contact, it would be nice if the tutor is pleasant, soft spoken and
capable of being aware of invisible symptoms.
Tutoring should be scheduled for that hour or hours during which the child is
generally most functional. This time may not be within the normal school day.
Often the person with CFIDS/FMS is unable to do anything cognitive until the
later part of the day. Ideally, the tutor would be very flexible and able to
delay or advance the scheduled time of instruction.
Having the lesson plan available for a month at a time enables the student
and tutor to work at their own speed. Likewise, it is strongly recommended the
tutor make the plans available to the student, for the week/month. There may be
times when the student is too ill to be tutored at a scheduled time, but able to
work later. Without any idea of the material to be covered, the student waits
until the next session. If the plan is known, materials might be able to be
Given the physical, neurological and cognitive problems one experiences with
CFIDS/FMS, it is recommended the tutor be certified in special education.
The tutor must be competent in his or her field of study. Reports abound of
the child with limited energy having to reassure the tutor or help the tutor
with the subject matter.
Often the homebound student will be unable to be tutored due to additional
illness, medication reaction, relapse, medical visits, and so forth. It is
important that the education plan engage the tutor with this in mind. Continuity
of educational services should not be compromised because the child is too ill
to receive services, the tutor quits because s/he is unable to be paid, and/or
the sick child waits three months for another tutor to be found.
If there are system-wide rules or tutoring condition requirements which would
create additional cost for a family, that cost should be paid by the school
IN SCHOOL ACCOMMODATION
Prior to the first day in class, all hallway or other passes, and a second
set of textbooks should be issued. Each person with whom the student interacts,
(including personnel outside the immediate teaching staff) needs to be aware of
the student's access needs (hallways, bathroom, etc.).6
Accommodation may need to be made to transport the child to school if s/he is
able to attend. A bus ride may be too taxing (sensory overload, extended periods
of sitting, nausea with motion, fumes from the bus) to allow for strength to be
left to walk to and be alert in class.
A student may need a quiet place to lie down after getting to school, and/or
A student should be allowed to be late for class without sanction. There
will, in all likelihood, be a good reason. Often students need more time as
their pace is slow. Forgetting where the next class is or how to get there is
not unusual. Sometimes transportation between classes is needed.
A separate option for lunchtime might be welcome. Lunchtime may be a
difficult period for the student. At the very least, the child leaves the noise
and confusion of the cafeteria setting sapped of energy, and lightheaded. Food
smells can also contribute to increased nausea.
A buddy system might be established in the event the student has to leave the
classroom. Syncope, fainting, muscle weakness, balance problems, and impaired
depth perception create a risk of falling.
The student might need to carry a pack or other bag with additional clothing,
beverage or food. A buddy would be helpful in this instance as well as helping
with textbooks and other materials.
In additon to factors listed earlier as relapse antagonists, review the
school facility. There may be other areas to address.
Consider the expanse of ground the student may have to cover in the course
of the time in school. If it takes a brisk walk to get from the front door
to the classroom area, this may be too much if the individual is to have any
energy left for learning.
New and refurbished plants may cause an increase in symptoms because of
If an available rest area is one accommodation, the area must be located
in close proximity to the classroom(s).
Families should be notified and provided real options well prior to the
the time of painting, building construction, special cleaning (carpet,
floors waxed), insect control, or grounds maintenance which might include
Good management of the illness involves attempting to even out level of
functioning to eliminate a "do something" followed by a severe relapse pattern.
Effective planning is part of effective management, and only when the
planning is reasonable does the student benefit.
Personnel who limit options for students with CFIDS/FMS because of concerns
about "setting a precedent" are not truly accommodating. True accom-modation
reflects an honest attempt to find realistic and workable solutions on a case by
Be creative. If the student is required to take electives but is struggling
to complete basic requirements, see if there is something the person does on an
ad hoc basis for pleasure that could be created into a credit. Schools have
granted credit for activities like cooking, music, or music appreciation;
physical therapy has counted as physical education; church/youth group or other
group participation has been evaluated for internship or independent study
program credit; independent study and internship programs have been developed.
Children at Risk
There are two main problems which place our youth at risk: lack of
understanding about the time it takes to get diagnosed and failure to be
diagnosed properly or at all. The two are perhaps related. In the prologue, an
indication of the problems faced by families was indicated. It is repeated here.
Among the obstacles faced by the parent and child are: parent and pediatric
unfamiliarity with CFIDS/FMS, its manifestation, and its severity; labeling and
misdiagnosis as "school phobic", depressed, or a behavoir problem; failure to be
protected under the law as health impaired; and inappropriate action by school
personnel for what to them is truancy. We need your help! These children are at
Early diagnosis and appropriate management might have saved some of our
children from the severity of the illness they now endure. It is troubling to
think of the length of the diagnosis period it has taken many who had medical
insurance, were bright, articulate, assertive, and medically knowledgable. What
of those who are not as fortunate in terms of resources? What of those children
who endure daily symptoms and are too young to articulate them and are seen as
behavoir problems? How many are not diagnosed?
I'M JUST A KID
The young person is by nature active, does not want to miss out on activities
if thought to be sick, and is not excited about being sick or being perceived of
as sick. There are inherent obstacles within both the medical and educational
arenas for our young people, simply because they are not adults.
When young people are sick they are dependent upon adults to listen, believe,
care, and take appropriate action. Attitudes about children, especially
adolescents, engender skepticism in ambiguous situations. Sadly, this often
holds true when a child or adolescent has physical complaints.
When adults have problems with credibility in the medical arena, they can
often speak up or choose an alternative provider. When the child "speaks up" it
is often to those who share credibility concerns. Young people who stand up for
themselves are behavior problems, and those who are placid are ignored.
Additionally, the parent who aggressively pursues answers for his or her child
is labeled overprotective; the parent who is not assertive or unable to actively
pursue medical avenues is considered neglectful.
Children do not have the economic means to find an alternative provider or to
secure medical care on their own.
TYPE AND TIMING OF ONSET
TYPE OF ONSET
It is valuable to understand the onset of CFIDS/FMS can appear to be sudden,
or the individual can become progressively more sick over time, until everyday
functioning becomes a problem. From a personal and educational perspective, slow
onset is thought to create significantly more risk.1,2
Even with a more suddden onset, patients and their families recall the prior
year(s) as period(s) of constant flus, having a "wierd kind of virus", catching
"everything going around", taking longer than usual to get back to normal after
colds, sore or strep throats, sleep changes, unusual allergy or sensitivity type
reactions, or more severity if there were existing allergies. Calls to pick up a
sick child from school, increased school absenses and/or reduced academic
achievement during these periods were common. The hope is early identification
rather than retrospective view will eventually prevail as the norm.
TIMING OF ONSET
What if the child is too young to have a frame of reference for wellness? How
severe do symptoms get before s/he realizes they are not the norm? For those
with no frame of reference for symptoms at all - how will they be described?
Additonally, if the onset of CFIDS/FMS is slow, a history of absences and/or
academic deterioriation begin to emerge. What if the child is so young there is
no existing history of academic success?
If the manifestation of CFIDS/FMS occurs around the time the student enters,
or is about to enter, middle school/junior high or high school, the student is
no longer part of a self-contained classroom, and the student and the student's
parents are likely to be "unknown" to teachers and other school officials.
THE "SYMPTOM RISK"
Think about how you would explain to your employer that muscle pain which
moves around, general weakness, or ten common symptoms which come and go are
severe enough to keep you from work for weeks or months.
Depending on the age of the child s/he may describe a symptom in a way that
makes no sense to the parent or physician. It is, after all, not that the
symptoms are unusual. What is unusual is their intensity.3 Have you tried to
describe a level of pain or discomfort lately?
Symptoms are varied. - The child with onset over a long period of time may
think the symptoms in a mild form are normal. By the time the "normal" symptoms
are problematically severe, one of several things may happen. The child can
explain neither the symptom nor the severity, or the child who has been able to
describe symptoms to this point may already be labeled a "complainer" and
Symptoms are inconsistent. - With slow onset especially, as one symptom takes
on severe dimension and medical assistance is sought, it disappears, only to be
replaced by one or more different symptoms.
Symptoms are layered. - Often one symptom takes on a level of severity that
masks other symptoms making them less likely for the child to mention. Also,
depending on the symptom and its severity, all other symptoms are blamed on the
first or most severe symptom. The diagnosis never gets beyond "atypical" or
"borderline", failing to address all the symptoms, or a litinany of diagnoses
Currently there is no simple diagnostic test for CFIDS. This section
describes specific problems contributing to the length of time of the diagnostic
Research funds to date have been directed to finding a cause of the illness.
Education of the medical practioner has not been a national focus. With any new
or re-emerging illness it takes time for the medical establishment to be able to
put the pieces together. One only has to view our recent past in terms of
medical skepticism with AIDS when a cause was unknown and a test not yet
The physician who has seen several CFIDS/FMS cases may recognize the symptom
pattern right away, especially if the onset is abrupt or is at the stage of
"full presentation". However, s/he still needs to order tests to rule out the
other illnesses which CFIDS mimics. This physician understands all routine
medical screening tests will be within the normal range, but wants to insure
there is no other clinical condition which could be treated.
If the physician has never seen a CFIDS/FMS case or fails to recognize it the
situation takes a somewhat different turn. When a patient complains of many
symptoms, batteries of tests and referrals to specialists are ordered.
We are not conditioned or encouraged to be good medical consumers. If
referred to a gastroenterologist to address severe bouts of abdominal pain, the
patient probably doesn't mention eye pain, sensitivity to light or muscle pain,
and the specialist is unlikely to ask. Specialists are generally interested in
the body part or system of their medical discipline - only one piece of the
Specialized test are inconvenient in terms of the school day, and the results
are not immediately known. If the student is able to be in school at all,
additional absences can be expected following medical appointments or testing,
as relapses follow the exertion of the visit. If the physician figures out what
is wrong, s/he may use outdated information previously used for diagnosing
adults, which called for weakness or fatigue lasting at least six months. For
the child who has slow onset of the illness, it may take a very long time for
the illness to be diagnosed. These young people are truly at risk. Most parents
don't rush to the pediatrician every time there is a pain, scratchy throat,
headache, rash or low grade fever, or even if the child appears to have a virus.
If the reason for a doctor visit does not include those symptoms, they may not
be mentioned. The medical practitioner may not recall previous conversations or
visits and is essentially missing the pieces necessary to put the picture
together. The child may be severe for more than a year before the full
presentation can be seen and recognized. By that time, and after many visits
with no test findings, the busy pediatrician may greet his/her young patient
with skepticism, or view the parents inappropriately.
If the full presentation is there but not recognized there is the problem of
the waxing and waning of symptoms (e.g. fever and swollen glands cannot be
replicated on demand during the course of a physical examination). If the
cognitive problems associated with the illness are already present, the child
may not recall symptoms present the previous week, even if asked directly.
IF THERE IS NO DIAGNOSIS - SO WHAT ?
One researcher speaks to the issue as follows,
"...treated for depression and overdosed with medications by the
psychiatrist. Now this boy cannot close his mouth or talk properly due to
improper diagnosis and excessive medication."4
Sensitivity to medications are commonplace with persons with CFIDS/FMS.
Symptomatic treatment with traditional doses of some medications have resulted
in deterioration in the overall condition.
A recent review notes,
...no one who has experienced this illness, or who has had the
responsibility of caring for a family member who has had the misfortune to
suffer from it, can have any doubt not only about the extent of the real
pain, suffering and distress that it can cause, but also as to the
disastrous effect it can have on social relationships and life in the
community. This is particularly the case among child sufferers, for whom the
effect upon their educational development and social well-being may be
catastrophic, particularly when child and family encounter unsympathetic
Children, like adults, self-medicate pain and fatigue and malaise. This is one
of the greatest risks to the child who fails to be accurately diagnosed. Sick,
failing to succeed academically, labeled, ignored, critized and punished,
health, behavior, self-esteem eroded, the young person turns to self medication
You may be the one to make the difference. You may be the one to recognize
what is really going on, perhaps because you observe, listen, are informed, and
don't rush to judgment.
Checklist for School Nurses
[and others who evaluate problems of children in schools]
It is our hope this checklist, along with the other materials provided, will
provide the necessary tools to help you to identify the child with CFIDS.
School nurses are key players from a number of perspectives. They may be
referenced in situations when excessive school abscences exist and may be
included in special education evaluations.
School nurses (and others filling such a role) are pivitol in the
identification process. More than one person has suggested that some, who school
nurses refer to as their "regulars", are students with undiagnosed CFIDS/FMS.
Your early identification and intervention may help others to recognize it,
facilitate diagnosis, and enable the necessary support and accommodation to be
The following checklist was designed by David Bell, M.D., F.A.A.P. a leading
international authority on CFIDS/FMS in children. As Bell and others indicate,
each patient may have a slightly different combination of symptoms, and
individual symptoms may vary in intensity, "However, the basic pattern of
symptoms is the same from patient to patient."
It may be important here to interject that for some the first major complaint
is widespread musculoskeletal pain, and fatigue of FMS rather than flu-like
symptoms. The diagnosis of FMS has been established by the American College of
In schools where there is no nurse on the premises, or in systems where
nurses are "shared", please help to insure that duplicate CFIDS/FMS materials be
made available for each classroom teacher, school secretary, guidance counselor,
and others who may share in servicing students when they are ill.
Every effort should be made to insure questions are understood. Due to the
waxing and waning of symptoms, questions might best be asked to elicit a
response reflective of a period of time, rather than "is it happening now?". The
word "fatigue" is used in the checklist. In order to elicit a more accurate
picture of the situation "fatigue/ weakness (and/or) pain" might be more
Children want to be viewed as active participants, and frequently have
difficulty with the typical day concept. This is especially true for the sick
child who tends to focus on and remember active good days, and wants to be seen
as having a normal activity level. Student and parent may have some difficulty
with the measure of overall activity limitation.Included are the answers
frequently heard from the child with CFIDS/FMS.
1. Did the illness begin suddenly with a flu or mono-like infection?
RESPONSE: Yes 70% of the time; the remaining 30% have gradual onset.
2. Has there been a single week since the onset that you felt entirely well?
RESPONSE: Usually no
3. Does the fatigue go away with a good night's sleep?
RESPONSE: Almost never. Difficulty with sleep occurs either as unrefreshing
sleep, insomnia, or excessive sleep in the morning.
4. Do you have difficulty getting a restful night's sleep?
RESPONSE: Usually yes.
5. Do you have fatigue every day?
RESPONSE: Usually yes.
6. Is the fatigue made worse by exertion or activities?
RESPONSE: Usually yes.
7. Do you have a sore throat at least once a week?
RESPONSE: Usually yes
8. Are the glands under your neck or arms frequently sore?
RESPONSE: Usually yes
9. Does light hurt your eyes?
RESPONSE: Usually yes
10. Are you uncomfortable with noise?
RESPONSE: Usually yes
11. Do odors bother you?
RESPONSE: Usually yes
12. Do you have stomach pain more than once a week?
RESPONSE: Usually yes
13. Do your muscles hurt?
RESPONSE: Usually yes
14. Do your muscles feel weak?
RESPONSE: Usually yes
15. Are your joints (fingers, knees, etc.) sore?
RESPONSE: Usually yes
16. Do you have a headache several times a week?
RESPONSE: Usually yes
17. Is it difficult to concentrate?
RESPONSE: Usually yes
18. Do you have a hard time remembering simple things?
RESPONSE: Usually yes
19. Do you get light headed or dizzy frequently?
RESPONSE: Usually yes
20. Do you feel like you have a fever frequently?
RESPONSE: Usually yes
21. Do you wake up at night sweating?
RESPONSE: Usually yes
MEASURE OF OVERALL
22. Please list the number of hours spent in each of the following activities
on an average day (total should add to 24 hours):
a] Total hours sleeping ...................[..........]
EVALUATION: A measure of activity limitation is found by comparing
sedentary activity (a+b+c) to active activity (d+e+f).
b] Rest, but not sleeping ................]..........]
c] Light activity while sitting or lying down ( light reading, watching
TV, etc.) ......................[...........]
Subtotal sedentary activity ...........[............]
d] Moderate activities about house (studying, tutoring, mealtime, doing
e] Moderate activities out of house (school, walking, shopping, etc.)
f] Vigorous activities (sports, exercise, heavy cleaning, etc.):
Subtotal active activity ..................[...........]
GRAND TOTAL.....................24 hours
A "typical day" for a healthy child includes roughly 12 hours of sedentary
activity and 12 hours active.
A "typical day" for the child with CFIDS includes roughly 15 or more hours of
sedentary activity, and less than 8 hours active. (ratio of sedentary to active
= 3 or higher).
A "typical day" for a child with severe CFIDS (i.e. not able to go to school)
is usually less than 4 hours active, with a ratio of sedentary to active = 6 or
A STUDENT'S OPEN LETTER
Dear faculty or staff member,
Let me introduce myself. I am a student attending your school or in your
class. I have chronic fatigue syndrome (CFS), also known as chronic fatigue
immune dysfunction syndrome (CFIDS, pronounced see-fids), or myalgic
encephalomyelitis (ME). This open letter presents areas that are of special
concern. It is important for me to know these needs have been communicated to
you so you can better understand and help me.
Believe in me. I am intelligent, capable, responsible, and honest. I have no
desire to use you or take advantage of the system.
Believe me. You may not know me well, but if you bothered to ask those who do
know me, and knew me in my pre-illness state, they would tell you about my
desire to achieve, how I always volunteered, that I was always involved with
school activities, that I'd be the last to want to miss school or hand in a late
assignment. They would tell you how bright I am and that I excelled
Educate yourself. The more you know about the illness, the better you can
help me. This is all pretty new. Many times, I don't know what is going on
myself. There is little predictability from day to day, so I can't always
prepare myself. This makes it difficult to prepare you. Unlike some students who
have a constant learning disability, mine change. Often I don't know one is in
place until I am able to view an event retrospectively, or someone points it out
to me. If you are aware of the cognitive and physical symptoms that come and go
in the course of an hour in a class session, you will be aware of the possible
intrusions into my learning process.
Trust me. Trust that when I say I am sick - I am; that when I can't go on
with a conversation - I can't; that when I need to leave the classroom - I do;
that when I can't be tutored - I can't. Trust that when I ask to leave the
classroom, go to the nurse, or need my parent to be called, I have probably
already waited too long to ask. Trust me when I can't explain what is going on,
sometimes I don't know.
Give me reason to trust and respect you. Learn about my illness so you can
try to act appropriately. Don't be afraid to let me know you understand. We all
must act to earn respect. It is not a right of age or profession.
Help me to experience success. It is because of my illness that I may often
be absent and have problems learning and completing assignments on time. I am
used to success, so this is all new and frustrating.
Think of ways you can help. You are considered the expert in the education
field. You have been taught there are lots of different ways to present material
and test what I have learned. When I get behind, helping me to know essential
from non-essential work will be a big help. Remember, I am not only sick during
the school week. I am at least the same all weekend as well. Sometimes I am more
sick because of what I try to accomplish during the week. School vacations are
no different. Accommodation of my limitations does not give me an unfair
advantage over my peers.
Be patient with me. If I could do things faster I would. There is no cure for
my illness, but as with any chronic illness unnecessary stress makes me worse.
Sometimes I have little emotional or physical reserve.
Don't punish me for being sick. I don't want to be sick. When you ask me how
I am, I will probably say "fine thank you" because I really don't want to go
through the litany of symptoms I'm experiencing. I may have some good days and
some bad days. Sometimes I have bad days and better evenings. If you see me
taking a walk when I was not in school that day, think the best, not the worst.
I'm glad s/he is having a good enough hour to be able to do something".
Don't leave me out. It is important that if I am out of school for a period
of days, months or years that someone make an attempt to keep me in touch.
Getting daily announcements may not seem important to you, but it will let me
know I'm not totally cast aside. I am already on the outside looking in. I have
to use my energy to do my school work. I can't keep up with my friends. When my
relapse is severe I am sometimes too sick to talk with a friend on the
Don't be afraid to advocate for me. Don't be afraid to empower my parent to
advocate effectively for me. I am not always able to advocate well for myself.
Emotional liability, which is a symptom of the illness, may be manifest when I
am confronted needlessly or inappropriately at a time when I am too ill to cope.
It is embarrassing to cry or otherwise lose control in front of others. I will
be so very grateful that someone took the time and bothered to care.
Very truly yours,
ILLNESSES CFIDS MIMICS
CFIDS may have symptoms similar to those listed below:
MS, AIDS, lyme disease, thyroid disease, mononucleosis, migraine syndrome,
multiple chemical sensitivity, irritable bowel syndrome, and autoimmune diseases
like lupus, scarcoidosis, and rheumatoid arthritis. As a result it is not
uncommon for persons to be misdiagnosed or receive several different and
It should be noted veterans with Gulf War Syndrome are often diagnosed with
CFIDS. It should also be noted many if not most of those diagnosed with CFIDS
are also symptomatic for fibromyalgia syndrome (FM) also called fibrositis.
Recent research has shown association with neurally-mediated hypotension (NMH)
and Postural Orthostatic Tachycardia Syndrome (POTS).
CFIDS SYMPTOM LIST
Headaches, easy bruising, earache, hearing changes or sensitivity, frequent
or burning urination, painful lymph nodes; sore throat, dry mouth, metallic
taste of foods; lack of restful sleep, sleep disturbance, hyper-somnia or
insomnia - often fluctuating between the two and sometimes accompanied by
restless leg, clonus, nightmares; profound or prolonged fatigue, malaise, muscle
weakness, exhaustion - especially after exercise levels that would have been
easily tolerated before; abdominal pain, diarrhea, constipation, bloating,
irritable bowel; low grade, below normal, or sensation of fever, chills, night
sweats; numbness or burning of the face, sudden pallor, flushing rash of face
and cheeks; numbness, tingling, or swelling of the extremities; migratory joint
or muscle pain without joint swelling or redness; pressure at the base of the
skull; blurred vision, eye pain, scratchiness in the eyes, floaters, double
vision, sensitivity to bright lights, eyelid swelling; lightheadedness, feeling
in a fog, dizziness especially on change of position, fainting, clumsiness,
balance problems; hypersensitivity of the skin; allergies, rashes; sensitivities
to odors, chemicals, foods, or medications; sensitivity to heat and cold; weight
gain or loss; chest pains, heart palpitations, irregular heartbeat; seizure
UNDER THE LAW: REGULATORY PROVISIONS
The Education of the Handicapped Act, Public Law (P.L.) 94-142, was passed by
Congress in 1975 and amended by P.L. 99-457 in 1986 to ensure that all children
with disabilities would have a free, appropriate public education available to
them which would meet their unique needs. It was again amended in 1990 and the
name was changed to IDEA.1
IDEA considers several categories, one of which is "OTHER HEALTH IMPAIRED".
This category is defined as, "Having limited strength, vitality or alertness,
due to chronic or acute health problems ... which adversely affects a child's
Young people unable to achieve at their pre-illness state3 are eligible for
services under IDEA which mandates appropriate education in the least
The Federal Rehabilitation Act of 1973:
Section 504 of this civil rights act provides for equal opportunities for
disabled persons. The student with CFIDS/FMS may be in need of and eligible for
services through this act.
Some states have adopted regulatory measures of their own to insure students
the opportunity to reach their full academic potential through free appropriate
AS WE WENT TO PRESS
As we were about to go to press, we received a letter, excerpts from which
appear here. It articulates the problems of the young child. Effort in helping
classmates understand what is going on is vitally important. The letter reads:
My name is [ ]. ...You may wonder why I have to leave school every day
early. I don't like to. I wish I could stay all day like you can. I have
something called CFIDS. It makes me not feel good. I get lots of stomach
aches, headaches, and sore throats. I also have trouble with my muscles and
The bright lights in the classroom hurt my eyes and give me headaches.
All the activity makes my CFIDS worse I also get very tired. When I go home
from school I usually...rest for a while. In the afternoon I will have a
tutor come. A tutor is a teacher who comes to your house to teach you. She
will help me with the school work that I can't do in school. I do some of my
writing on the computer because my hands hurt to write...
I like the new friends I have met at school. Even though I have CFIDS I
am just like the rest of you. I am 7 years old, and I like to do all the
things 7 year olds like to do.
I am glad to be in your class.
The mother states, [My daughter] is 7...and has to figure out how to fit
into a class that lasts for 6 hours a day, on a part time basis...young
children like [my daughter] truly live with the pain because they really
know nothing else. I wonder how many other kids are out there under 10 who
are struggling and haven't figured out yet how to let us know.
Is there anything more that needs to be said? This letter seems to sum up
the problems of identification, education, and accommodation in a very real
1 The difference between the terms disease and syndrome in medicine denotes
whether the cause of an illness is known. Each has uniquely presenting symptoms.
If medicine has an explanation of the cause the term disease is used; if the
cause is unknown, it is termed a syndrome.
2. Dowsett, Elizabeth G., Colby, Jane. Long Term Sickness Abscence Due to ME/CFS
in UK Schools: An Epidemiological Study with Medical and Educational
Implications. Journal of Chronic Fatigue Syndrome. Vol.3, Number 2, 1997
3 Many with CFIDS/FMS have symptoms akin to Multiple Chemical Sensitivity (MCS).
Educational Issues and Acommodation
1 See Under the Law: Regulatory Provisions
2 Sandman, C A. Proceedings of the First World Symposium on CFIDS at Cambridge
University in England. ME/CFS: The Nightingale Foundation Review, Byron Hyde,
3 Iger, Linda Miller. Proceedings of the First World Symposium on CFIDS at
Cambridge University in England. ME/CFS: The Nightingale Foundation Review,
Byron Hyde, Editor.
4. Iger, Linda Miller. Neurocognitive Problems and the CFS Student. Youth Allied
By CFIDS. Spring 1996, page 7-8. (a publication of CFIDS Association of America,
PO Box 220398, Charlotte NC 28222).
5 Banks, Michelle. Brochures authored: "Chronic Fatigue Syndrome and School
Success", "A School's Guide for Students with CFS, "A Parent's Guide to
CFiDS/CFS and School"
6 Revealing a diagnosis should, of course, be left to the student and family.
The intent here is freedom of access to hallways, bathrooms, elevators without
being stopped, questioned, or humiliated because staff was left out of the loop.
Children at Risk
1 Bell, D. The Doctor's Guide to Chronic Fatigue Syndrome. Addison-Wesley
Publishing Group, 1994.
2 Bastien, S. ME/CFS: The Nightingale Foundation Review, Byron Hyde, Editor.
3 Bell, D. The Doctor's Guide to Chronic Fatigue Syndrome. Addison-Wesley
Publishing Group, 1994.
4 Hyde, B. Albany International Conference.
5 Pheby, D. Chronic fatigue syndrome. A challenge to the clinical professions.
Physiotherapy, 1997, 83, 2, 53-56.
Under the Law: Regulatory Provisions
1 NICHCY General Information About Disabilities (GR3), 1991; IDEA was again
revised in 1997.
2 See footnote 1 above.
3 For the child who became sick at an early age and was undiagnosed,
"pre-illness state" requires very careful consideration. Children should not be
presumed to be "slow" when other life factors indicate average to high
intelligence. See pages 10 and 11.
4 See pages 6 and 7.
The National CFIDS Foundation, Inc. was founded to help fund medical research
and provide information, education, and support to those afflicted with CFIDS,
FMS, and related disorders like GWS, MCS.
The National CFIDS Foundation, Inc. works in conjunction with other CFIDS
organizations such as R.E.S.C.I.N.D., Inc. whose advocacy efforts address the
government, and C.F.I.D.S.E.R.S., Inc. an organization offering help to victims
in financial distress as a result of being disabled from these illnesses.
Permission is granted to copy and quote for educational and non-commercial
purposes provided the intended meaning is preserved and proper credit is given
the National CFIDS Foundation including the postal address and telephone number.
© 1998, National CFIDS Foundation
103 Aletha Road
Needham, Massachusetts 02192