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TABLE OF CONTENTS
Prologue
Educational Issues and Accommodation
Introduction
A Different Kind of Illness
Cognitive, Neuro-Cognitive and Physical Difficulties
General Information for Planning
Homebound Accommodation
In-School Accommodation '
Conclusion
Introduction
I'm Just a Kid
Type and Timing of Onset
The Symptom Risk
Diagnostic Period
If There Is No Diagnosis - So What?
A Student's Open Letter
Illnesses CFIDS Mimics
Symptom List
Under the Law:
Regulatory Provisions
As we went to press...
Footnotes
PROLOGUE
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 to CFIDS/FMS.
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 progressive.
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 is truancy.
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 community.
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
INTRODUCTION
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 follows:
...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 exercise.
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 vitality.
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 fits.
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 instruction.
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 to do.
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 following year.
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.
Flexible Setting: administer the test in a separate location with minimal distractions.
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 test content.
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 projects.
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 period.
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.
HOMEBOUND ACCOMMODATION
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 reviewed independently.
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 system.
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 between classes.
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 sensitivity reactions.
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 chemicals.
CONCLUSION
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 accommodation reflects an honest attempt to find realistic and workable solutions on a case by case basis.
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
INTRODUCTION
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 risk.
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 ignored.
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 are made.
DIAGNOSTIC PERIOD
Currently there is no simple diagnostic test for CFIDS. This section describes specific problems contributing to the length of time of the diagnostic period.
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 developed.
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 puzzle.
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 professionals."5
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 or worse.
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]
INTRODUCTION
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 provided.
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 Rheumotology.
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 descriptive.
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.
CHECKLIST
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 ACTIVITY LIMITATION
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 ...................[..........]
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 dishes,)............[...........]
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
EVALUATION: A measure of activity limitation is found by comparing sedentary activity (a+b+c) to active activity (d+e+f).
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 higher.
APPENDIX
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 academically.
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. Say, "good,
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 telephone.
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 separate diagnoses.
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 activity.
UNDER THE LAW: REGULATORY PROVISIONS
IDEA
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 educational performance."2
Young people unable to achieve at their pre-illness state3 are eligible for services under IDEA which mandates appropriate education in the least restrictive environment.4
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.
State Laws
Some states have adopted regulatory measures of their own to insure students the opportunity to reach their full academic potential through free appropriate educational services.
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:
Dear Class,
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 joints sometimes.
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 way.
Footnotes
Prologue
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 Accommodation
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, Editor.
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
(781) 449-3535
