| LE LINEE GUIDA IN INGLESE PER INSEGNANTI DI RAGAZZI AFFETTI DA ME/CFS E FIBROMIALGIA SONO SCARICABILI SU:|
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Ricordiamoci che la prima informazione inizia dalla scuola ( e a ruota dai medici). Se gli insegnanti a scuola per primi riescono ad rendersi conto che l alunno ha dei problemi ( magari non riesce a seguire le lezioni, si addormenta o accusa altri sintomi). Prima di tutto potra' essere indirizzato verso una diagnosi precoce; secondo poi la scuola potra' adottare le linee per aiutare il ragazzo a continuare gli studi con mezzi alternativi.
Contattateci per dare la vostra disponibilita' e aiuto che andra' a beneficio di tutti i malati soprattutto dei giovanissimi che subiscono incomprensione e violenze psicologiche a casa e a scuola. .
TEACH-ME: A Sourcebook for Teachers of Young People
with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia
Understanding Fibromyalgia Syndrome (FMS) in Young People
Marjorie I. van de Sande,
Consensus Coordinator for the Canadian FMS Consensus Document
National ME/FM Action Network, Advisor & Webmaster
B. Ed., Grad. Dip. Ed.
Bruce M. Carruthers
Co-Editor of the Canadian FMS Consensus Document
National ME/FM Action Network, Medical Advisor
, MD, CM, FRCP(C)
This chapter will give educators a better understanding of Fibromyalgia Syndrome (FMS). The
Clinical Diagnostic Criteria for FMS are included in order for educators to be aware of the many
symptoms, in addition to pain, that FMS potentially encompasses. It is hoped that this
understanding will enhance the educator’s ability to accommodate young people with FMS in
the school setting.
What is FMS?
Fibro refers to fibrous tissue – ligaments and tendons, myo refers to muscle, and algia refers to
pain. Fibromyalgia involves widespread pain of the muscles, ligaments, and tendons. A
syndrome is a set of medical signs and symptoms that are seen together. Fibromyalgia is a softtissue
pain syndrome that is classified as non-articular rheumatism in the World Health
Organization’s International Classification of Diseases. As in other medical conditions, the
severity of FMS varies from mild to severe and it can be debilitating.
What Causes FMS?
A physical trauma, particularly a whiplash or spinal injury, can trigger FMS in many patients.
There appears to be a genetic factor involved in some patients. In other patients, FMS comes
on gradually with no known cause.
How Prevalent is FMS?
Studies estimate that between 2% and 10% of the general population have FMS(1,2,3). In a
prevalence study of randomly selected school children, 6.2% met the criteria for FMS (4). It is
two to five times more common than rheumatoid arthritis.
Who Gets FMS?
FMS affects all age groups, including children, all racial/ethnic groups, and all socioeconomic
As in many painful conditions, such as arthritis, there is a higher prevalence of FMS in females.
Although all the mechanisms are not fully understood, some gender differences are known (5).
Females generally have a more flexible and delicate skeleton, longer necks, and thinner, less
massive muscles than males. Thus, females are more prone to neck and spinal injuries.
Females generally have a narrower spinal canal than males. A study found that those
(particularly females) who had persistent whiplash injury symptoms had a significantly narrower
cervical (neck) spinal canal (6). As the spinal canals of children are narrower than adults, they
may be more vulnerable to such injuries. Studies have found that females have a lower pain
threshold (the point when a stimulus is perceived as painful)(1) and a greater increase in pain
over time than males (7). Females produce more of some brain chemicals that increase pain
signals and less of some other brain chemicals that decrease pain signals. A remarkable finding
was that when endogenous (inside the central nervous system) tryptophan was depleted, there
was only a 7-fold drop in synthesis of serotonin (a chemical that decreases pain sensation) in
males but there was a dramatic 42-fold drop in the synthesis of serotonin in females (8). This
finding would certainly be an important factor in females having lower pain thresholds. Both the
direction and magnitude of the brain’s response to pain differs in males and females with
females being more sensitive to pain (9).
What is the Natural Course of FMS?
An eight year study indicated that once FMS is established, symptoms generally did not improve
and functional disability slightly worsened (10). In another study, all patients still had FMS fifteen
years later (11).
What is the Difference Between FMS and Myalgic Encephalomyelitis / Chronic Fatigue
There is an overlap of symptoms between FMS and ME/CFS and many think they may be
variants of a similar disease process. FMS is often triggered by a physical injury with pain and
dysfunction of the muscles, ligaments and tendons being more prominent. ME/CFS is often
triggered by a viral infection and there is more pronounced fatigue, post-exertional malaise and
dysfunction of cognitive abilities and other body systems.
Clinical Definition of Fibromyalgia Syndrome (FMS)
The International Expert Consensus Panel, selected by Health Canada, consisted of thirteen
doctors who were actively diagnosing/treating FMS and/or were researchers in this illness.
Collectively, they had diagnosed and/or treated more than 20,000 FMS patients. They agreed
that the 1990 American College of Rheumatology criteria were well established, accepted
worldwide, and had good sensitivity and specificity for research. The Clinical Definition
encompasses the potential spectrum of the symptomatic expressions of FMS. There was 100%
consensus among panel members on the final document.
Canadian Clinical Definition of Fibromyalgia Syndrome (FMS)
The two compulsory pain criteria ( adopted from the American College of Rheumatology
1990 Criteria ) are merged with Additional Clinical Symptoms & Signs to expand the
classification of FMS into a Clinical Working Case Definition of FMS.
1. Compulsory HISTORY of widespread pain.
the following are present for at least three months:
Pain is considered widespread when all of
Pain in both sides of the body
pain above and below the waist (including low back pain)
Shoulder and buttock involvement counts for either side of the body. “Low back” is lower
axial skeletal pain (cervical spine, anterior chest, thoracic spine or low back).
2. Compulsory PAIN
on PALPATION at 11 or more of the 18 defined tender point sites.
3. Additional Clinical Symptoms & Signs.
tenderness required for research classification of FMS, many additional clinical symptoms
and signs can contribute importantly to the patients’ burden of illness. Some of these
features are present in most FMS patients by the time they seek medical attention. On
the other hand, it is uncommon for any individual FMS patient to have all of the
associated symptoms or signs. As a result, the clinical presentation of FMS may vary
somewhat, and the patterns of involvement may eventually lead to the recognition of FMS
clinical subgroups. These additional clinical symptoms and signs are not required for the
research classification of FMS but they are still clinically important. For these reasons, the
following clinical symptoms and signs are itemized and described in an attempt to expand
the compulsory pain criteria into a proposed Clinical Case Definition of FMS.
In addition to the compulsory pain and
a) Neurological Manifestations:
hypertonic and hypotonic muscles; musculoskeletal asymmetry and dysfunction
involving muscles, ligaments and joints; atypical patterns of numbness and tingling;
abnormal muscle twitch response, muscle cramps, muscle weakness and
fasciculations. Headaches, temporomandibular joint disorder, generalized weakness,
perceptual disturbances, spatial instability, and sensory overload phenomena often
Neurological difficulties are often present such as
b) Neurocognitive Manifestations:
These include impaired concentration and short-term memory consolidation, impaired
speed of performance, inability to multi-task, and/or cognitive overload.
Some neurocognitive difficulties usually are present.
and mental stamina, which often interferes with the patient’s ability to exercise.
There is persistent and reactive fatigue accompanied by reduced physical
d) Sleep Dysfunction:
accompanied by sleep disturbances including insomnia, frequent nocturnal
awakening, nocturnal myoclonus, and/or restless leg syndrome.
The patient experiences unrefreshing sleep. This is usually
e) Autonomic and/or Neuroendocrine Manifestations:
cardiac arrhythmias, neurally mediated hypotension, vertigo, vasomotor instability,
sicca syndrome, temperature instability, heat/cold interance, respiratory disturbances,
intestinal and bladder motility disturbances with or without irritable bowel or bladder
dysfunction, dysmenorrhea, loss of adaptability and tolerance for stress, emotional
flattening, lability, and/or reactive depression.
These manifestations include
and typically lasts for hours commonly occurs. It can return during periods of inactivity
during the day.
Generalized or even regional stiffness that is most severe upon awakening
Jain AK, and Carruthers BM, co-editors. van de Sande MI, Barron SR, Donaldson CCS, Dunne JV,
Gingrich E., Heffez DS, Leung F Y-K, Malone DG, Romano TJ, Russell IJ, Saul D, Seibel DG.
FIBROMYALGIA SYNDROME: Canadian Clinical Working Case Definition, Diagnostic and
Treatment Protocols. A Consensus Document.
Published simultaneously in:
Medical Press Inc.,
website of the National ME/FM Action Network at
the Overview of the Consensus Document are also on our website.)
Journal of Musculoskeletal Pain 11(4):3-107, 2003.The Fibromyalgia Syndrome: A Clinical Case Definition forI Jon Russell, Editor. Haworth Medical Press, pg. 3-107, 2004. © Copyright 2004 Haworthreprinted with permission. (The FMS Consensus Document may be viewed on thehttp://www.mefmaction.net. Instructions for ordering
Symptoms and Signs of FMS
As indicated in the clinical definition, in addition to the two compulsory pain criteria, patients with
FMS are expected to exhibit many of the additional symptoms. However, it is unlikely that a
patient will exhibit all the additional symptoms and they may vary over time in different
combinations. The severity and hierarchy of severity of symptoms tend to vary more
dramatically from day to day in young people.
Do you recall the fairy tale where the princess could feel a pea under her mattress? FMS
patients are extremely sensitive to pain and a fold in their night-clothes may cause enough pain
to wake them up. How long can you hold a muscle in a flexed state before it becomes tired – 5,
10, 15 minutes? Many FMS patients are living with muscles that are permanently contracted
and relentlessly pulling on their joints. Muscles that are shortened by contractures constantly
ache, are dysfunctional, and are chronically fatigued.
Although the pain may begin as regional pain from an injury, instead of the pain going away,
over the course of months it becomes widespread and increases in severity. Thus, there is a
delay in the onset of FMS. Many research studies suggest that there are abnormalities in the
interaction between the peripheral nervous system and the central nervous system in
processing pain (12). FMS patients have higher levels of some chemicals that increase pain
signals to the brain and lower than normal levels of some other chemicals that decrease pain
signals. These unusual levels result in miscommunication between the brain and the body.
Unopposed pain signals are being sent from the body to the brain and from the brain to the
Types of Pain
Young people may describe their pain as burning, tingling, deep, shooting, sharp, stabbing – like
a knife stuck in them, deep aching, feeling bruised all over, like someone used them as a
punching bag, or any combination of these.
: The sensation of pain varies in type, severity and its location often quickly shifts.
Understanding FMS Pain:
However, it is often difficult for those who are not well informed about FMS to believe that a
young person could possibly experience so many types of pain, particularly when they say they
are always in pain, the pain migrates to different parts of the body, and there is no visible
evidence of injury. For example, if a child complained of pain in one leg and was favouring that
leg when s/he was walking and then a few minutes later you observed that s/he was favouring
the other leg, what would be your reaction? Would you smile to yourself and think that the child
was faking it and couldn’t even remember which leg s/he said was hurting? In actuality, when
someone with FMS walks favouring one leg it puts more stress on the joints and muscles in the
other leg and those muscles may spasm and/or send pain signals to the brain causing the pain
to shift to the other leg.
It is most important for educators of FMS students to be cognizant of the fact that these young
people have a dysfunction in the areas of the central nervous system that process pain resulting
in inappropriate pain signals being sent to different parts of the body. Not only are these young
people abnormally sensitive to pain, but after a painful stimulus the pain lasts for a much longer
period than normal. Most readers have experienced a time when they were out walking and
discovered that their shoes didn’t fit properly and were causing blisters. How eager they were to
get home quickly and take their shoes off their sore feet! How would they react to someone
telling them to forget their pain and get in the gym and run? Similarly, young people who are in
pain have a low endurance and are apt to be reluctant to participate in activities which involve
physical contact and/or increases their pain. If their hands hurt, they may have difficulty writing
and may not want to hold hands with other students.
Young people with FMS often fidget and squirm in their desks either because they are trying to
find a different position that will relieve their pain or they are fatigued and are trying to stay
awake. FMS students usually are unable to sit for extended periods of time because staying in
one position increases their pain and may cause muscle spasm. They need to be
accommodated by allowing them to stand up and walk around for a few minutes as required. On
the other hand, some FMS patients can only stand for a very short time, particularly in one spot,
and need to avoid doing so.
Because young people with FMS have extremely low pain thresholds and often have seemingly
bizarre pain patterns, they may be labelled as whiners. It is most unfortunate that children who
are suffering often are not taken seriously, or their pain is dismissed as “growing pains”.
Growing should not cause this much physical pain. Young children are eager to please and gain
respect. When adults do not understand the depth of pain these children feel, there is a risk that
they become withdrawn for fear of being ridiculed, and may not receive appropriate medical
treatment in a timely fashion.
people experience is real, there is a physiological reason for their pain, and it can be
severe and exhausting.
attention. Out of 1,808 multi-disciplinary studies that were systematically reviewed,(14) only
seven met the criteria for methodology, and of these two included exercise for FMS patients.
The results were disappointing. Another review(15) of 26 studies of exercise intervention
programs for FMS also gave disappointing results and attrition rates ran as high as over 60%,
while some studies failed to report attrition rates. There is no reliable evidence that explains why
exercise will reduce pain (16).
As much care must be taken in prescribing exercise programs as in prescribing pharmaceuticals
(17). The Expert Consensus Panel recommends that a thorough history and examination be
completed in order to determine the patient’s total illness burden. Risk factors and pain
generators, such as prior injuries, hypermobile or restricted joints, taut muscles, balance
problems, and risk for adverse cardiac reactions must be identified and addressed. There are no
exercises that can strengthen or heal lax or injured ligaments. The tighter the muscles, the
easier they are activated – even when they shouldn’t be. The opposing muscles appear weak,
but are dysfunctional. The longer the muscles have been contracted, the more dysfunctional
they are. The reality of biological dysfunctions and limitations must be acknowledged and
accommodated. Medical management must be optimized before introducing exercise. The
patient’s treating doctor should direct and coordinate all rehabilitative efforts and all
rehabilitation personnel must be knowledgeable about FMS. Exercises must be individualized
and specific to the physical pathology of FMS. Young people with FMS, particularly if they also
have ME/CFS, must never be pushed to increase their heart rate to average acceleration. This
is potentially dangerous because their hearts may be functioning at a suboptimal level! It is
essential to warm and stretch tight muscles and these muscles must be released before trying
to strengthen ‘weak’ dysfunctional muscles. Taut muscles are pain generators. When a healthy
person becomes stiff, exercise alleviates the stiffness. However, a person with FMS often
stiffens with exercise because the muscles tighten to prevent further injury. It is of prime
importance that the exercise does not worsen the patient’s condition. There is an informative
section on guidelines for exercise for FMS patients in the Consensus Document.
It is easy to understand that a bruise or cut can cause pain.It is essential that educators know that the pain these youngAs exercise is often prescribed to young people with FMS, it warrants special
2. Tender Points
There are specific, distinctive points on the body called “tender points”. When they are touched
with a force that is not painful to healthy people, they produce pain in patients with FMS. It is
incongruent that they are called “tender points” because it is considered a negative finding if
these point present as tender: They must be painful. Many of the tender points are located
where ligaments, tendons, or muscles attach to bones.
Some lay people rather dismissingly think that if you poke a person with FMS in some places it
hurts, and that’s all FMS is. However, the painful tender points are simply a diagnostic tool. Just
as a painful left arm can indicate malfunction of the heart, painful tender points indicate that
there is dysfunction in the central nervous system related to pain processing.
3. Additional Symptoms
a) Neurological Manifestations:
People with FMS usually have a number of neurological
Ligaments, tendons and muscles are usually involved in producing pain in FMS:
Although the pain is most often felt in the muscles and joints, ligaments and tendons are
also sensitive to pain. When ligaments are overstretched, they are easily injured and are
difficult to heal because they have a limited blood supply, particularly where they attach
to the bone. Lax or injured ligaments do not hold the joints in place properly so there is
abnormal joint movement. When there is abnormal movement of a joint, muscles around
the joint tend to react by contracting in order to help stabilize the joint and prevent further
damage. However, muscles cannot do the job of ligaments so the contracted muscles
constantly stress the joints, including vertebrae, and sometimes pull them out of
alignment. This stress puts even more stress on the muscles, which in turn puts more
stress on the joints, and so the vicious circle continues. The lax/injured ligaments may
cause the joints to be hypermobile, or restricted due to muscle contraction. Over an
extended time period, often years, the posture of FMS patients may become abnormal
and their body may become lopsided. Due to muscle contraction, typically their head is
too far forward, and their shoulders are too high, too far forward and become rounded.
One leg often becomes functionally shorter (the legs measure the same length but one is
shorter due to the pelvis being tilted and/or rotated).
It is important that educators know that failure of the joints and other supportive structures
causes pain and structural fatigue, which inhibits the length of time a person can stand (12).
Those whose posture has become abnormal are often told to stand up straight and put their
shoulders back. Although these young people would love to have good posture, they simply
can’t achieve it. Young people are sensitive so it is important not to draw attention to these
When one muscle is contracted, its opposing muscle accommodates by remaining lax
and it is dysfunctional. Youth with FMS are prone to muscle cramps, twitching, and
weakness. They may also have generalized weakness.
Other muscle abnormalities: As mentioned, many muscles may be contracted and taut.
Numbness and tingling are common, particularly in the legs, feet, arms and hands.
in the neck and shoulder muscles. Some young people may get double vision, see spots
in front of their eyes, or have trouble focusing their eyes shortly before the onset of a
migraine. If an educator has a student prone to migraines, it is helpful to be alert to these
pre-onset symptoms and the student should be picked up by his/her parent as soon as
Headaches, including migraines, are common and usually are accompanied by spasms
chronic contraction of the muscles that are involved in jaw movement. Some students
with TMJ may find it too painful, or be unable to open their mouths wide enough to sing.
In these cases, they should be excused from singing or at least not be expected to open
their mouths wide.
Temporomandibular joint disorder (TMJ): In FMS patients, TMJ is usually caused by
difficulty focusing their vision, which may be brought on by exhaustion or precede a
migraine. It can be confusing to the educator when FMS students say that they can’t read
the writing on the blackboard or in a book when they could shortly before and may be
able to again an hour or so later. The problem is not that they suddenly become
shortsighted or longsighted but rather the muscles that focus their eyes are not working
properly. In addition, eye fatigue may be increased by straining to try to focus their eyes
and many FMS patients have abnormally dry eyes. If students are prone to eye fatigue,
consider suggesting the following quick exercise to be done periodically as a preventative
Simply close your eyes and cup your hands over your eyes putting gentle pressure on
the top of the cheek bones from the base of both palms. Hold for one minute and then
blink several times.
Young people may not be able to hear or understand instructions because background noise
may be more pronounced than the instructions. Their brains may be unable to give the
appropriate relevance to auditory input in much the same way as not being able to tune a radio
to one station. They may experience ringing in their ears, which usually comes and goes rather
than being constant. At such times, children find it more difficult to hear and may become
Some young people may have difficulty timing and sequencing their actions, walking in a
straight line, and they may bump into things and appear clumsy. They may have difficulty with
depth perception and walking on uneven surfaces. It is best not to draw attention to these
abnormalities and to be aware that when these difficulties become more pronounced, it is a sign
that the student is over-fatigued and needs to rest.
Perceptual disturbances and spatial instability: Young people may periodically have“Palming”(12) is a simple technique that temporarily reduces eye strain.
inputs such as bright or fluorescent lights, sound, noise, speed, odours, or any
combination of these. It is important that the learning environment be as free from
distractions as possible. Cold intolerance is very common and some may have heat
intolerance. Cold temperatures can cause these young people’s muscles to spasm so
they may not be able to go outside on cold days.
Overload phenomena: Young people may be hypersensitive to a variety of sensory
b) Neurocognitive Dysfunction:
generally less severe than those who suffer with ME/CFS but never-the-less they can be
debilitating. The symptoms are often more associated with pain and cognitive fatigue than fixed
impairments. The cognitive fatigue experience by FMS patients is commonly referred to as “fibro
fog”, and is characterized by confusion, difficulty consolidating short-term memories,
forgetfulness, and difficulty with word and information retrieval.
A notable feature is that their cognitive functions and responses become markedly slower. It is
not that they are unable to understand the concepts when they are feeling better, but rather that
their brains process information slowly and it takes them a long time to complete a project or
assignment. It may be difficult for them to understand what is being said when someone speaks
quickly. They may have difficulty with reading, writing and math, and taking notes may be very
challenging. Their responses become even more markedly slower as their fatigue increases,
which is a sign that they need to rest.
Young people with FMS quickly experience cognitive overload when they receive information at
a faster rate than they can process. They will have difficulty making decisions, multi-tasking, and
may “crash” (become temporarily immobilized by fatigue).
The cognitive difficulties of young people with FMS are
young people with FMS are generally worse in the morning but can come unexpectedly from
activities that would not tire a healthy person. This reactive fatigue can be delayed by a day or
more and is almost always accompanied by increased pain and worsening of other symptoms.
Recovery time is longer than normal.
Structural fatigue, due to abnormalities in the joints or discs, results in the body being unable to
support itself for sustained periods. This type of fatigue is common in FMS and is relieved by
sitting or lying down. Muscular fatigue is prominent in FMS and is associated with muscle
dysfunction. It is triggered by movement and relieved by stopping the movement but recovery
may take a long time. Most FMS patients have arousal fatigue as a result of poor sleep quality
and quantity. This poor sleep quality usually plays an important role in their cognitive fatigue.
Oxygenation fatigue may be experienced. In some young people with FMS, the muscles around
the chest and between the ribs are contracted so tightly and are so painful that the motion of the
chest wall is markedly restricted, causing their breathing to be very shallow. This shallow
breathing decreases the body’s ability to deliver enough oxygen to the tissues and brain. It is
helpful for educators to be aware of the types of fatigue young people with FMS experience and
accommodate their fatigue appropriately.
Chronic pain and stiffness are exhausting. The fatigue and stiffness experienced by
d) Sleep Dysfunction:
because they cannot stay in one position long enough as a result of their pain. Many wake up
frequently and have trouble getting back to sleep. Most patients with FMS do not spend enough
time in the deep stages of sleep where the body restores itself and becomes rested (18). This
poor sleep quality is a contributing factor to their widespread, diffuse pain and cognitive
difficulties. A research study(19) had demonstrated that insufficient deep sleep causes painful
tender points upon palpation, suggesting that the lack of deep sleep plays an important role in
FMS. Patients wake up feeling utterly exhausted. It is very hard for them to get going in the
morning. Some of these young people also have other sleep dysfunctions, such as restless leg
syndrome. How often have you heard someone complaining that they are so exhausted
because they hardly slept the night before? Children and youth with FMS experience a lack of
sleep quality and usually sleep quantity night after night, week after week, month after month,
and year after year. Please allow them to take short rests as needed.
Young people with FMS usually have difficulty falling asleep often
e) Autonomic and/or Neuroendocrine Dysfunctions:
experience some dysfunctions of the autonomic nervous system. It is very common for them to
become dizzy, lightheaded, and lose their balance when they extend their neck, quickly rotate it,
or get up quickly. There symptoms are usually relieved quickly by lying down and being still.
Some FMS patients have a lower than normal body temperature, and may experience bizarre
patterns of hot and cold sensations. For example, one side of their body may feel cold and the
other feel hot. Cold temperatures often cause muscle spasm and pain. At other times, they may
sweat excessively after limited physical activity. Some have swelling of their feet and hands
while others may have dry eyes and mouth. If an FMS student does have a dry mouth, they may
need to take sips of water or juice periodically. Others may have to be excused to go to the
bathroom more often as a result of increased urinary frequency and/or bowel dysfunction.
Teenaged girls often have very painful menstrual periods.
Young people with FMS usually have less tolerance for stress and easily become overwhelmed.
It is helpful if they are given one task at a time.
Many young people with FMS
for hours. Stiffness can return at other times during the day, generally when the young person
has been inactive for some period, such as sitting in their desk too long. Exposure to drafts or
cold weather can also trigger stiffness.
Nearly all young people with FMS are stiff when they wake up and it usually lasts
Young people with FMS have a dysfunction in the areas of the central nervous system that
process pain. In addition to the generalized, widespread pain, they experience inappropriate and
sometime rather bizarre pain sensations. The pain can quickly migrate from one place to
another. Although many of their pain sensations fluctuate, contracted muscles and abnormal
joint movement can cause constant pain and are easily aggravated. Their pain can be severe
Young people with FMS face many physical, mental, educational, social, and emotional
challenges, which also affect their families and friends. The pain and the numerous types of
fatigue experience adversely affect their cognitive abilities and educational studies. Because of
their slowed cognitive processing and fatigue, it is difficult for them to complete their school work
and keep up with their classmates. They easily become confused and overwhelmed. Many FMS
students require special educational considerations.
Clinical Goals and Guidelines for Educational Planning
(Adapted from the FMS Consensus Document )
The goals and guidelines for educational planning for FMS students are basically the same as
for ME/CFS students. However, with FMS patients there is greater emphasis on accommodating
pain symptoms and with ME/CFS there is greater emphasis on fatigue, post-exertional malaise,
and cognitive symptoms. Many of these patients have overlapping symptoms and indeed some
meet the criteria for both illnesses. For those educators who are specifically looking for
information to assist them in accommodating FMS patients, the goals and guidelines are
basically repeated from chapter 1.
The Expert Consensus Panel emphasizes the following top priorities in any rehabilitative efforts:
1. The support and well-being of the patient
Because FMS is a poorly understood chronic illness, educators can lessen the confusion and
uncertainty often experienced by these patients by being supportive and influencing the opinion
of these students’ peers regarding the illness.
2. Patient empowerment
It is essential for the patient’s physiological and psychological health that s/he is able to maintain
autonomy over the pacing of activities. An integral part of empowering youth with FMS is to
validate and respect their knowledge of their body and experiences. Educators can assist them
in setting personal and emotional boundaries.
3. Optimizing functional ability
The aim is for these young people to achieve activity boundaries in which they can be as active
as possible without aggravating their symptoms. Once reasonable boundaries are achieved,
patients can very gradually extend their activities at their
own pace as they are able.
1. The treating physician is responsible for the patient’s care and should oversee all
It is helpful if the treating physician provides a letter to educators outlining the patient’s condition
and limitations. Open communication and feedback is essential so that strategies can be
assessed and adjusted. All rehabilitation personnel must be knowledgeable about FMS.
2. Educators should meet with the student and parents
As soon as a student has been diagnosed with FMS and at the beginning of each school term,
the educator should meet with the parents and student. It is very challenging for parents to care
for a chronically ill child, particularly when the child has a poorly understood illness.
Collaboration among educators, parents and the student is advised. Parents should be
encouraged to provide written information about their children’s difficulties to be given to all of
3. The biological pathophysiology of FMS must be respected and reflected in educational
dysfunctions and their interactions must be taken into account when determining what
accommodations need to be made.
All the patient’s symptoms must be taken into consideration. The complex and varied
and emotional symptoms are a biological reality of FMS.
The patient’s physical symptoms, cognitive difficulties due to brain dysfunction, fatigue
s/he lacks stamina. The longer the patient has suffered a symptom, the more limited
her/his activity boundary is likely to be. Patience is required because it is essential that
the student does not exceed his/her limitations. Special considerations for physical
education classes are particularly important.
The patient’s activity boundaries fluctuate from day to day, and even hour to hour, and
Educational programs must not exacerbate the patient’s symptoms.
4. Educational accommodations must respect the patient’s autonomy, be conducive to
healing, and individualized.
The severity and hierarchy of symptoms, aggravators, and activity limitations will vary with each
youth who has FMS. It is important that educators be sensitive and accommodate the young
person’s limitations when planning her/his program.
keeping in mind the unpredictable nature of FMS.
Accommodations must be individualized according to pain severity and activity limitation,
s/he wants to fit in with peers. An alert educator will become aware of symptoms such as
pallor, general uneasiness, slowing and deterioration of speech and work, anxiety, and
emotional distress, which are signs that the student is experiencing increased pain and/or
becoming exhausted. An educator can empower the student by assisting him/her in
recognizing and monitoring early warning signs of excessive pain and fatigue. These
signs are signals from the body to modify activities or rest.
Sometimes a young person is unaware of early warning signs or ignores them because
The student is aware of his/her own body and how s/he feels. Educators can empower the
student through respect. The student’s autonomy is vital to her/his physical and psychological
well-being. When the student is involved in establishing priorities and strategy decisions, s/he
will be more motivated to succeed and misunderstandings will be minimized.
Involve the student in setting realistic goals.
One of the most important features of managing FMS is that the patient learns to
It is important that the student is able to establish the complexity and pacing of activities.selfpace
activities. When the patient is in control of pacing activities, s/he can gradually
explore ways to increase activities as his/her ability allows, thus increasing the likelihood
of success and continued commitment.
Rest intervals should be incorporated into the school day as needed.
is having flare-ups.
Involve the student in developing alternative strategies in preparation for times when s/he
prearranged signs or the teacher can give the student a ‘pass card’ to show when the
simple agreed upon accommodations are needed, such as taking a short walk, resting,
wearing sunglasses, eating a snack to regain strength, not standing in line, or being
excused to go to the bathroom. (See note at end of chapter.)
While the basic principles of educational planning are briefly mentioned here, many educational
accommodations are more complex and are discussed in detail in later chapters.
It is very difficult for children and young people to live with constant pain and fatigue. School
work and physical activities are challenging. These young people should be encouraged to
pursue interests that they can do that they might not have pursued if their activities were not
limited. Listening to stories on CDs or tapes, or writing, or some hobbies that do not require
strenuous physical activity may interest them. Above all else, it is essential for their meaningful
others to be supportive and understanding.
The National ME/FM Action Network website
where parents and educators can obtain further information. If you have a tip that may help
others assist young people with FMS, we would like to hear from you. We also post poems and
short stories written by young people with FMS. Submission guidelines and contact information
are on our Youth Site. We would be most interested in receiving submissions from your students
with FMS and they may find it rewarding to have their poems posted on our national website.
In order to avoid disruption of the class, the teacher and student can develophttp://www.mefmaction.net includes a Youth Site
Young people have the right to access education according to their circumstances. It is
most imperative that parents, educators, and meaningful others remain patient,
understanding, and supportive! Teaching, a demanding profession, can also offer a
rewarding experience to an educator, who has the opportunity and privilege of touching
the hearts and souls of these young people and making a positive difference in their
“Activity beyond the level that an individual can usually tolerate will prompt a delayed worsening
of symptoms”, the Department of Health in the United Kingdom has endorsed the use of a “pass
card” to protect the health of children with ME/CFS while they are in school (20). The “pass
card” has the child’s photograph, is signed by the principal, and states that the child has
permission to use the school’s disabled facilities or obtain other assistance. Accommodations
are agreed upon in advance. The child simply needs to show the teacher the card as required.
The National ME/FM Action Network would like to spearhead a drive to make a “pass card”
available for ME/CFS and FMS patients in Canada. If you are able to assist us or have any
suggestions in furthering this cause please contact Marjorie van de Sande at
Following a report by the Chief Medical Officer’s Working Group, which stated that
Most medical information in this chapter is from the Canadian FMS Consensus Document. This
informative document includes the clinical definition, discussion of the symptoms, diagnostic and
treatment protocols, and a research overview. Guidelines for self-management strategies,
exercise, and practical appendices are also included. The document may be viewed on the
National ME/FM Action Network website, and instructions for ordering the journal are provided.
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