Index to this page
    What is M.E.?
    M.E. in Children
    What causes M.E.?
    What course do the symptoms take?
    How do I get a diagnosis? Is there a test for M.E.?
    Are there any treatments for M.E.?
    Guide for parents.
    Medical.
    Education.
    Prognosis.
    Guide for Schools.
    Some Tips for Classroom Teachers of Young people with M.E.
    Summary of main problems with M.E.
    Guide for children and young people.
    Exam Arrangements.
    Rate your Fatigue.
    Check List of Symptoms.
    Booklist.
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What is M.E.?                                     Back to Top

M.E. has had many names in its history: Chronic Fatigue Syndrome (CFS); Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS); Post-Viral Fatigue Syndrome (PVFS); Neuromyasthenia; Atypical Poliomyelitis; and Chronic Epstein-Barr Virus among many others.

The letters M.E. stand for myalgic encephalomyelitis; meaning muscle pain, brain dysfunction and spinal cord inflammation. The term CFS tends to be used in the USA and M.E. in Britain, Canada and Australia. However, there has been a move towards using the name CFS in Britain by doctors who believe the term M.E. to be inaccurate. Many patients dislike the name CFS because the word "fatigue" suggests they are just tired, and feel the name is derogatory and trivializes the illness. There seems to be reluctance to change the name of the illness until a biological marker or cause for the illness has been found.

It can still be very difficult to get a diagnosis, as there is so much ambiguity surrounding this syndrome (meaning a collection of symptoms). Many people with M.E. have received varied diagnoses. Some of the most difficult to accept are those of depression or psychosomatic disorders, which seem to blame the patient for being ill. Even worse for many was being given no diagnosis at all.

M.E. has become an accepted clinical entity. In July 1998, the Chief Medical Officer announced that the Department of Health recognized the existence of this illness.


M.E. in Children                                     Back to Top

One of the problems in trying to diagnose M.E. in is that a child's illness is usually reported or described by the parents rather than by the child themselves, so the doctor has to rely on second-hand information.

Childhood M.E. often frustrates doctors because children's complaints tend not to be consistent. One month it's a sore throat, headache, and dizziness that are most disabling. The next month it's another three symptoms that are the most significant. Children may not have all the "right" symptoms at the right time to be diagnosed. The variation in symptoms and in symptom intensity, combined with the relapsing/remitting course of the illness, may not be consistent with what most doctors think M.E. is. The children themselves may decide that their symptoms are either normal and they shouldn't complain, or that they are so strange they should hide them.

In general, children's symptoms are similar to those of adults. A prominent difference between adults and children with M.E. is that children more commonly report symptoms such as dizziness, light-headedness, abdominal pain, rash, fever and chills. The illness' relapsing and remitting pattern is a main reason for misdiagnosis of childhood M.E. as a "behavioral" or "emotional" disorder, and in particular as school phobia. Teenagers are more likely than younger children to fit the definition of M.E. Discussions are underway regarding possible modifications to the definition which would incorporate elements unique to children with M.E.

The gradual onset of M.E. seems to occur more often in younger children (pre-adolescent). It is defined by the appearance of symptoms over several months or longer, or by mild symptoms suggestive of M.E. (frequent sore throats, headaches or joint pains, relative inactivity, requiring more sleep than other children of the same age) prior to an acute episode.

It is often difficult for children who experience a gradual onset to describe their precise degree of fatigue or cognitive difficulties because they don't recall a time period without them. Interestingly, these children may not perceive themselves as being ill, as they have been growing up with their symptoms and have no clear reference to normal health.

The most common reasons for relapse are:
- another infection
- undue stress
- excessive mental/physical activity
- immunization
- anesthetics: general or local

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What causes M.E.?                                     Back to Top

Due to the complexity of the illness, researchers are still unsure about what causes M.E. Many scientists believe that there is more than one cause, and that major features are stress and an over-loaded immune system. The majority of sufferers seem to become ill after a viral infection, such as the flu or a cold, but other sufferers develop the illness after an operation or an accident. It is known that both physical and emotional stress can make the illness worse. It may be that after an infection, the immune system does not gear down but remains active. Another theory is that there are lower numbers of certain types of immune system cells. M.E. is not a simple communicable disease - it is not "caught" in the same way as we catch a cold. Instead it is a result of multiple agents coming together.


A List of Symptoms of M.E.

1. Severe, debilitating fatigue, usually made worse by physical exercise, for at least six months.
2. Impaired cognitive functions    - inability to concentrate
                    - calculation difficulties
                    - memory disturbance
                    - spatial disturbance
                    - frequently saying the wrong word
                    - being unable to find the correct word
                    - being in a "fog"
3. Chronic Sore Throat.
4. Tender and swollen lymph nodes - especially neck and underarms.
5. Muscle Pain.
6. Multi-joint pain.
7. New headaches - often severe.
8. Non-refreshing sleep.


Other symptoms may include:

Sleep disturbances                 Severe muscular weakness
Paralysis                     Numb or tingling feelings
Twitching muscles                 Intolerance to light
Sensitivity to noise                 Alteration of taste and smell
Ringing in the ears                 Severe dizziness
Feeling "spaced out" or "cloudy"         Blackouts
Depression                     Anxiety
Mood swings                     Nausea
Abdominal pain                 Diarrhea/Constipation
Weight change - either way             Temperature changes
Night sweats                     Heart palpitations
Chest pain                     Shortness of breath
Intolerance to alcohol                 Muscle spasms
Fever                         Loss of appetite

There may be other symptoms that you can add to the list.

Fortunately, most people do not suffer from all these symptoms. You may find that when one symptom goes away, another one appears.


1. Fatigue

The fatigue that comes with M.E. is usually an overwhelming, debilitating kind; much more severe than that arising from normal exertion. Sometimes it is experienced in waves accompanied by nausea. There may be a pattern where it is less severe at certain times of the day. There is a wide range of severity and some people need a lot more rest than others. While there may be a pattern of quite good days followed by bad days, their "quite good days" are never as good as before they became ill.

Another aspect of the fatigue is called "post-exertional malaise". Many people with M.E. are able to exercise moderately and feel fine whilst doing it. However, a few hours later, the next day or even up to three days later, they may find themselves with a major flare-up of symptoms.

The fatigue felt is worse than that felt prior to becoming ill. The feelings have been likened to having flu, a hangover and having just run a marathon. It is important that sufferers learn to manage their symptoms through pacing in order to recover as quickly as possible.


2. Pain

There are a variety of types of pain associated with M.E. These include headaches, pain in the joints, painful lymph nodes, back pain and chest pain. Muscle pain can be similar to that which most of us have experienced when we have the flu, except it is on a chronic (long-term) basis. There may be a generalised dull aching in the muscles and joints, and also sharp pains or muscle spasms.


3. Sleep Disturbances

This is perhaps the most important symptom to treat in M.E. Good quality rest is necessary in order for the body's self-repair system to work effectively, and it takes time for the body to heal. Sleep disturbance may be aggravated by anxiety about not being able to sleep, and may include insomnia, sleeping much more than before, unrefreshing sleep and vivid dreams.


4. Emotional Disturbances

There are a wide range of emotional problems that may accompany M.E., as is the case with other illnesses. However, M.E. is different from other conditions in that the activity of the disease process itself affects brain chemistry, neurological functioning and emotions directly.

Two of the most prominent symptoms are anxiety and depression. Sufferers also sometimes have panic attacks, mood swings and personality changes. The depression in M.E. is usually a secondary factor - due to having a long-term illness, and does not cause the M.E. However, it is important that any depression is treated by a doctor.


5. Sensory Dysfunctions

Sensitivity may be dramatically increased to cold or heat, sound, light and touch, smells and chemicals. There may at times be numbness in the face or elsewhere, burning in the hands or feet, or problems with dizziness or balance. Disturbances of vision are quite common and include blurred vision, sensitivity to light, eye pain seeing spots and a variety of other dysfunctions of the eyes.


6. Cognitive Dysfuntions

Sufferers often find they have short-term memory and concentration problems. They may find themselves using the wrong word, being unable to find a word, or forgetting what they have just said.


7. Digestive and Weight Problems

These include onsets of food allergies, vomiting, yeast overgrowth in the gut, stomach pain, constipation, irritable bowel, intolerance to alcohol and bloating. Also, weight can vary up and down.


8. Cardiac Symptoms

The most common complaints are chest pain, shortness of breath, missed heartbeats, rapid heartbeats and chest pounding. These do not necessarily mean that there is a major problem with the heart.


9. Secondary Symptoms

There are various other symptoms which may not be as debilitating as the major ones. These include sweats, intermittent swelling, shaking, problems with balance, co-ordination problems, sore throats and rashes. Other symptoms can be found on the list.

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What Course do the Symptoms take?                                     Back to Top

It is reassuring to know that unlike other chronic illnesses, M.E. typically does not have a "progressive downhill course" of getting worse over time. Rather it is characterised by an acute onset followed by a chronic phase with cycles of symptoms. The cycles gradually diminish in intensity as you move into the recovery phase. M.E. has, however, a wide range of symptom severity. This is unlike other viral illnesses with a much narrower variation in severity as, for example, the common cold or chickenpox. It is also known that the illness may have a gradual onset of symptoms with some M.E. sufferers.


The Chronic Phase

The chronic phase is marked by settling into cycles of symptom severity. The degree of disability might vary according to a pattern for the individual. For many, the cyclical nature of M.E. makes the road to recovery a bumpy one. In a few people, especially in more severe cases or for sufferers who have a gradual onset, there may not be such obvious cycles but a more steady, unrelenting state of debilitation.

It is a common occurrence for a person to go into a period of remission and feel so excited about it that they try to make up for all the lost time and activity very quickly. This, of course, can bring on a relapse shortly afterwards. Many relapses are triggered by over-exertion. However, some relapses occur simply because of the cyclical nature of the disease process in M.E. and cannot be pinpointed to particular stresses. You can be living a relatively stress-free life and doing all the right things, yet still have relapses.

Remission can be great or slight, brief or long, and may follow a regular or irregular pattern. Some symptoms may go into remission while others remain.

In the chronic phase, one of the biggest dangers to avoid is the tendency to resign yourself to being a "helpless victim" with an "incurable" illness. You can learn to monitor your patterns of remission and relapse. You can soften the impact of relapses by anticipating them and taking action to support your body with extra rest or other forms of self-care. And, you can arm yourself with the knowledge that recovery IS possible.


The Recovery Phase

This phase can be characterised by a gradual rise towards better health, punctuated by relapses and remissions of varying degrees. While there are still these cycles, the relapses generally become less severe, of shorter duration and with longer times between relapses.

People in the recovery phase often point to a time when there seemed to be a positive turning point in the overall pattern of symptoms. For some it is a certain medical treatment, for others a major change of lifestyle, such as quitting a stressful job. In some cases there is no apparent reason for recovery, but rather the body's healing efforts finally seem to gain the upper hand.

During the recovery phase, the person learns how to observe the body's signals and to monitor its vulnerability. Close attention is paid to diet and stress. Many people develop a more introspective attitude towards life, with a greater appreciation for emotional honesty. As periods of remission lengthen, the person remains attentive to the body's needs and avoids the tendency to overdo it. Gradually the person establishes a new balance of rest and activity, with more sensitivity to, and respect for, the body. Vulnerability appears to diminish with time as long as vigilant attitude is maintained.


When does the recovery phase end and when are you "recovered"?

With some illnesses the use of the word "recovered" is avoided for fear of the possibility of a relapse. "In remission" or "in recovery" are preferred, at least until a substantial period of time has passed with no symptoms.

With M.E. there is no consensus on when a person is "recovered", largely due to the cyclical nature of M.E. Relapses do occur in the recovery phase, though they may be relatively minor and short-lived compared to the debilitation occurring in the chronic phase. Relapses can even occur after one has recovered a satisfactory level of functioning and a basic sense of control and balance. Again, however, these relapses are likely to be relatively mild and serve mainly as reminders of the lessons learned during the recovery phase.
   
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How do I get a diagnosis? Is there a test for M.E.?                                     Back to Top

There are no conclusive tests for M.E., so diagnosis is usually made by clinical observation and by excluding other conditions. You may find your doctor does a lot of blood tests to rule out other causes of illness, and you may even be sent for a brain scan. These tests are important to rule out other treatable diseases. As fatigue is a factor in many diseases, such as cancer, depression, auto-immune and hormonal disorders, many of which are treatable, it is very important to rule out other illnesses before a diagnosis of M.E. is made.

Children aren't able to speak for themselves, and they may find it difficulty to explain what's wrong. They may not even realize what they are feeling is abnormal - particularly if they become ill at an early age. Many doctors still think children don't get M.E. Post-Viral Fatigue Syndrome is common after glandular fever etc, and lasts a few months, whereas anything longer is classed as psychological. Doctors believe the child wouldn't remain ill unless there was a secondary gain, such as attention, or no school. Some children may be diagnosed depressed or school phobic. However, some doctors are willing to help the child cope with the illness and come to terms with it, even if they themselves don't understand it.

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Are there any treatments for M.E.?                                     Back to Top

To date, there is no "magic bullet" treatment for M.E. where a course of tablets or other treatment will cure the condition. There are numerous therapies which some doctors claim to be useful in treating the symptoms of M.E., but these are not always suitable for all sufferers. Treatment tends to be one on a symptomatic basis - tackling individual symptoms such as pain and sleep disturbance. People with M.E. may have unusual responses to medication, so extremely low dosages should be tried first and gradually increase as appropriate.

Anti-depressants can be useful where the sufferer has problems sleeping or with muscle pain. If they are suffering from depression, it is important to seek medical advice. If you suffer from a lot of pain it may be worth discussing different pain-killers with your doctor to try and find one suitable for you. However, many sufferers experience pain that cannot be treated with conventional painkillers.

Cognitive Behavioural Therapy and Graded Exercise programmes have been suggested by some doctors. These aim to break destructive patterns of thinking, such as "I won't do any exercise because it will make me feel worse". They also aim to gradually increase the amount the sufferer does each day. Many sufferers and doctors however believe that these programmes can make the patient worse if they are not allowed to proceed at their own rate. There is still much controversy over these two therapies in the treatment of M.E.

Many M.E. sufferers try alternative medicine to try and reduce some of their symptoms. The majority of alternative medicines have not been scientifically tested, although there are many people who believe they do work. Some remedies that have been used by M.E. sufferers include vitamin and mineral supplements; evening primrose oil; magnesium injections; vitamin B12 injections; homeopathy; acupuncture; and herbal medicines.

Lifestyle changes, including increased rest, reduced stress, dietary restrictions, nutritional supplementation and light exercise (such as walking) are frequently recommended. Supportive therapy, such as counseling, can also help to develop effective coping strategies. Self-management, and learning to control output of energy (mental as well as physical) are the keys to successful rehabilitation

However, it seems that one of the best treatments is pacing. Learn to rest and follow the 70% rule: never use more than 70% of your available energy so that some can be carried forward to the following day. It is also important to avoid stress as much as possible, as this can exacerbate symptoms.


Can diet affect M.E.?

Food sensitivities are common to many sufferers. The best solution is to avoid those foods causing the problems. The most common foods that cause problems are wheat, dairy products and sugars. Caffeine, sugar and artificial sweeteners can all adversely affect the immune system; and caffeine can also exacerbate sleeping disturbances. Some sufferers may find it necessary to take nutritional supplements, such as vitamins, if they are unable to prepare and eat a healthy diet. Without the correct nutrients, the body will be unable to heal itself. Children should particularly be encouraged to eat a varied diet, even when they have a poor appetite. They may have symptoms similar to hypoglycemia - low blood sugar - and a diet rich in protein helps to reduce fatigue and "brain fog".

Many people find that "grazing" is better than eating three meals a day with nothing in between. It stops the highs and lows in blood sugar and it is gentler on the stomach. Carry a snack with you when you go out.


How long will I be ill?

This question is impossible to answer. It would be reassuring to have a fixed time frame for the course of M.E. This would give a sense of predictability to the experience, reducing some of the anxiety about the unknowns of it. However, the variation of individual differences must be taken into account. Receiving an early diagnosis and rest at an early stage increases the likelihood of recover in a shorter period of time. Some doctors claim that most sufferers get better in 2 years, others say 5 years. However, there are some sufferers who are ill for 10 years+. Fortunately, children tend to recover more quickly than adults, but an early diagnosis and effective treatment plans will greatly aid and speed up recovery time.


Who gets M.E.?

In adults, it appears that more women than men get M.E., with a ratio of approximately 3:1. However, this seems to be the case for many immune-related illnesses. The average age-range at the start of the illness is 25-45, and it seems that teachers and health-care workers are also more likely to get M.E. There also seems to be ethnic link in that most sufferers seem to be white.

As yet in the UK, there has been no government funded medical research for M.E. Work in Australia and the USA suggests that M.E. is on the increase, and predicts 200,000 sufferers in the UK. M.E. is not only found in adults - it also affects about 25,000 children in the UK - usually after puberty, but some younger children also have M.E.

A 1997 study showed that M.E. was the most common cause of long-term absence from school, with 42% overall: 33% in staff and 51% in pupils. There was a 2:1 ratio of female:male sufferers in pupils, and the average age was 13, with peak prevalence at 15. Sex ratios below puberty were more even, indicating a hormonal influence in the cause of the illness. The majority of sufferers were in senior schools. The scale of M.E. in the young is only just beginning to emerge. Many cases are still not spotted or are misdiagnosed. Two-thirds of the schools involved in the study had cases of M.E., suggesting the prevalence of the illness to be 70 per 100,000 of the population in pupils and 500 per 100,000 population in staff - a ratio two or three times higher than quoted in other adult population surveys.


How does M.E. differ from other illnesses?

If the symptoms do not seem to exactly add up to M.E., it may be that a related condition such as Candida, Food Allergy or Intolerance is involved. Fibromyalgia is also a similar illness. Some sufferers also suffer from Multiple Chemical Sensitivity (MCS) where they become sensitive to chemicals, odours, and even cigarette smoke, which exacerbate their symptoms. It is advisable to consult your doctor about these.


Is M.E. contagious?

The virus that often triggers the illness may be infectious at the beginning, as many viruses are, but M.E. itself is not thought to be infectious. M.E. is a more complex illness than a straightforward viral infection like the flu. Schools and acquaintances should be reassured that a child with M.E. does not pose a threat to anyone else.


What if my doctor doesn't believe in M.E. or is unsympathetic?

There is no longer any question that M.E. exists. Fortunately, the medical literature is now acknowledging the existence of this illness and doctors are becoming more informed. If your doctor seems uninformed or uninterested you can get a list of recommended doctors in this area by contacting the Support Group.


Am I entitled to claim any benefits?

The Department of Health and the DSS now officially recognize M.E. as having a physical cause, so an M.E. sufferer should, in theory, get the necessary benefits after being diagnosed. The group offers help with applying for benefits.

Even children are entitled to benefits. A parent on Income Support may be able to claim the Disabled Child Premium. Parents may be able to claim Invalid Carers Allowance if they care for their child for 35 hours a week or more. Disability Living Allowance (DLA) can be claimed if a child can't do what someone of that age reasonably could be expected to do. E.g. a child of three who had problems walking would reasonably be expected to be taken out in a wheelchair, but a child of six would be expected to walk and so should qualify for DLA. If the sufferer can't stand for long, or walk far (100 yards), they can apply for Disability Living Allowance from the DSS. DLA is split into two parts: Mobility - Higher and Lower rates, and Care - High, Middle and Low rates. Try and get help with filling in the forms, as they can be long-winded and complicated to explain M.E. It's still difficult to obtain benefit, even though M.E. is recognized as a "real" illness. Older students may also be able to claim Disabled Students Allowance.

A parent may also be able to claim an Orange Badge (under the Orange Badge Scheme, which is available from your local Social Service office) to help them transport a sick child. If a wheelchair is needed, talk to your doctor who should refer you to your local wheelchair service, or you may be able to borrow one from your local Red Cross. The group also runs a Mobility for Members scheme for those members in real need of a wheelchair who are unable to obtain one elsewhere.

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Guide for Parents                                     Back to Top

As a parent, it can be very difficult to understand what your child is going through. Imagine having the flu, a bad hangover and having just run a marathon: you ache all over, are totally exhausted, your head aches, you have stomach upsets and sensitivity to noise and light… and you don't know when these feelings will subside; having to cope with them every day, and not be able to plan anything because you don't know how you will feel when the time comes.

M.E. in children is often overlooked because:
· Parents aren't familiar with it or looking for it in their children.
· The early symptoms may lead to an incorrect diagnosis of emotional or adjustment problems, as they may not meet the criteria for M.E. This can stop the search for further explanations.
· Children often misinterpret their symptoms, seeing them as inappropriate or shameful. This leads them to hide their symptoms from friends, family, and doctors.
· The gradual onset of the disease, which is more frequent in children than in adults, may lead the child and the adults in their life to think that their low functional level is normal for them.
· Children have a hard time telling adults what's wrong with them, especially if the adult is sceptical.
· Many parents are intimidated by doctors and can't assert themselves if they feel a wrong diagnosis has been given.

Children and adolescents with M.E. (especially those with a gradual onset) may be seen as unintelligent, lazy, shy or socially awkward, uncooperative, or unmotivated. As their illness progresses, teachers and parents may believe they are simply moody, maladjusted, misbehaving, or slow-learning, because it's more difficult to recognise the neurological/cognitive problems they've adapted to.

M.E. forces adolescents into a dependency on parents in other ways as well. Many young sufferers, especially those in the early teenage years, aren't able or willing to talk about their illness. They need their parents to advocate for them with doctors, school officials and other family members. Yet at times, sick adolescents don't want even you to talk with anyone about their M.E.; they would rather deny that they are ill at all.


Medical                                     Back to Top

The NHS Parents' Charter states that parents should be involved in any discussions about their child's treatment and in the treatment itself. Unfortunately, there have been a few cases where there have been proceedings to make children wards of court when the parent disagrees with a psychiatric diagnosis or treatment plan.

No child with M.E. should be forced to exercise. In the early stages of M.E. any attempt at exercise is counterproductive. Activities should be chosen which the child can comfortably manage without. No treatment should involve advising the child to push through the pain barrier when tiredness sets in, but rather to stop before tiredness begins.

A misdiagnosis of school phobia or psychological/psychiatric problem is sometimes made. However, there is a mismatch between what a child wants to do but is physically and mentally unable to. Doctors and the school may not see that effort puts them in bed for days afterwards.


Education                                     Back to Top

M.E. affects every aspect of a person's life. Many young people with M.E. must be home-schooled, because they are too ill to attend class every day. This can result in deficits not only in education, but also in social development at a very critical age. School is where people learn to communicate, work with others and develop other social skills which are essential in life and work.

Fitness for return to school or college is probably best tested in the "mall test". Is a young sufferer can sustain three hours in a shopping centre without major problems, then they may be able to return to school, at leas part-time. Shopping centres have many stimuli - noise, light, smells, and many sufferers may find these overwhelming.

Special arrangements can be made for both classes and exams. Transport to and from school will help the sufferer conserve precious energy for learning. They should try to get help carrying their bags around school, or even try and get classes changed so they do not have to move classrooms. Until they are well, they should not take part in P.E. Just because a child is in school doesn't mean they're well enough to do everything. School can be stressful - noise, social contact, continual change, aggression/bullying, and it's necessary to relieve as much stress as possible. There is no legal requirement for a child to attend school. They can have part-time schooling, home schooling, or even no schooling. The main factor is to formulate a learning programme that doesn't endanger their health.

Education, like physical activity, needs to be built up slowly. When a child is well enough, a home tutor may be available. However, not all children will be too ill to leave school. It is very important to have the school on your side, even though it's the Local Education Authority (LEA) who has ultimate responsibility for providing the tutor. Educate the tutor about the problems caused by M.E. The amount of time the tutor visits depends on where you live, this tends to be between 2-10 hours a week, with an average of 5. Some sufferers may find even 30 minutes exhausting - as it is more intense that at school because it's on a one-to-one. Unless you have no option, don't accept your allocation of time in one block (e.g. 2 hours a week in one go), and don't take your full allocation at the start - build it up.

Spread the sessions through the week at times suitable for the child. They may feel slightly better in an afternoon or morning - try to schedule lessons then. Arrange to meet the tutor before lessons start - so you can check they get on with the child and that you're happy leaving them alone together. Return to school should be gradual. It may be better to concentrate on one subject, going in on several days, rather than one whole morning covering several subjects. It may also be worth thinking about correspondence courses. Useful addresses can be found at the end of the section.

Cognitive problems, such as loss concentration, difficulties with short-term memory, word-finding ability and visual/spatial perception can go unrecognized; more so in the child with gradual onset.

A child with M.E. must often work harder to maintain the same grades they were earning before becoming ill. In many cases, grades drop because of the physical and cognitive impairments caused by M.E. Some very bright children are able to maintain good grades by developing strategies to help them get around certain cognitive difficulties.

Since 1994 (section 298 of the Education Act) all LEA's are obliged to arrange suitable education for children of school age who are out of school because of illness or injury. This may be through home tuition, through hospital schools or tuition services, or though an integrated hospital/home education service.

The Code of Practice on the Identification and Assessment of Special Educational Needs, issued by the Department for Education and Employment, is designed to help schools and LEA's make effective decisions for children deemed to have such needs.

Section 312 of 1996 Education Act, a child has "special educational needs" for purpose of the Act if they have a "learning difficulty which calls for special educational provision to be made for him." A child has a "learning difficulty" if:
a) They have a significantly greater difficulty in learning than the majority of children their age
b) They have a disability which either prevents or hinders them from making use of educational facilities of a kind generally provided for children of their age in schools within the area of the LEA.

Statementing means to put down a child's needs in a formal statement, which includes reports from teachers, doctors, educational psychologists and parents. It is a long-winded process, and can take 6-18 months. M.E. doesn't really fit in with statementing, as the illness varies so much. The idea is to get the education and support facilities necessary to suit the child and enable them to have a good education.


Prognosis                                     Back to Top

M.E. is best treated by a sympathetic G.P. who knows the family. Prognosis depends on early diagnosis and appropriate management and support. There are triggers for relapses - secondary infections, over exertion, immunisation or other immuno suppressive events, whether caused by drugs, hormonal imbalance, low blood sugar due to missing meals, physical trauma, family bereavement or separation - all of which obstruct stabilisation. Help your child to listen to their bodies by keeping daily symptoms and activity logs, pace activities to conserve energy, and stop before they're exhausted. In general, most young people improve adequately to return to "normal" life. The message must always be hope.

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Advisory Centre for Education (ACE)
18 Victoria Park Square
London
E2 9PB
0171 354 8321
Advice Service: 0171 354 8321 2pm-5pm
"Helping parents support their children in school"

Education Otherwise
PO Box 120
Leamington Spa
Warwickshire
CV32 7ER
Self-help organisation offering support and advice and information to families practising or contemplating home based education as an alternative to schools.

National Association for the Education of Sick Children
St Margaret's House
17 Old Ford Road
Bethnal Green
London
E2 9PL
0181 980 8523
Working for every child's right to education when they are sick.

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Guide for Schools                                     Back to Top

Section 19 of 1996 Education Act places a duty on Local Education Authorities (LEA's) to arrange suitable education for all children of compulsory school age who are out of school because of illness. Guidance on good practice in arranging provision for sick children is contained in the DfEE Circular 12/94 "The Education of Sick Children." Circular 14/96 "Supporting Pupils with Medical Needs in Schools" sets out schools legal responsibilities for pupils with medical needs.

Where a child with M.E. does attend school, even part-time there are arrangements that can be made to make life easier for the child. The main information on the illness can be found elsewhere in this booklet, but there are specific areas which are relevant to ME and learning. A teacher who understands the illness will give the child with M.E. a better chance of recovery.

Students with M.E. may experience any of the following problems: difficulty with bright lights, headaches, visual/spatial distortions, word blocking, word transposition, or difficulty with calculations or name matching. They may be easily distracted, unable to maintain attention in a conversation or when reading or only able to concentrate for short periods of time, and have a poor short-term memory.

Some youngsters with gradual onset may be unaware that they have cognitive problems, as their functioning seems normal to them. Other youngsters who notice the changes may keep their worries to themselves. They may be too afraid or embarrassed to admit they have these difficulties. Even when getting plenty of physical rest, the child still is limited in the mental activities they can do before getting tired, because the illness affects the brain.


Some Tips for Classroom Teachers of Young People with M.E.                                     Back to Top

Many people with M.E. feel like they have the flu everyday. People with mild M.E. may feel like this only when they have used energy by studying or exercising, and even then, not always after these activities. Teachers need to understand that when the flu-like symptoms come on, the person with M.E. can feel extraordinarily miserable and lacking in energy. They can have trouble thinking clearly. When youngsters with M.E. leave or miss school because of these symptoms, they deserve support and reassurance.

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

It's typical with M.E. to not feel well sometimes and feel fine at other times. The M.E. student may be a good worker sometimes and a poor worker at other times. Please don't force young sufferers into an all-or-nothing way of thinking about M.E. and make them prove they are sick by acting sick all the time.

Things that may help the student:
· Fluorescent lighting may cause problems and if possible, the student should be seated next to a window.
· Extraneous noises are very distracting. Every effort should be made to sit the student in the front of the class or in a quiet section of the classroom.
· During relapses, speech may become slurred, minimal or highly condensed, in which only the most essential words, such as nouns and verbs, are used. This shouldn't be construed as a lack of effort, insolence or stupidity.
· Teachers tend to call on students who look like they're not paying attention. Because the M.E. student is physically ill, it's better for the teacher to let him/her volunteer to answer questions.
· The M.E. student may need to audiotape classes. On days when they miss a class, providing a tape recording of it would be especially helpful.
· They should receive an extension of time on timed classroom tests and all standardized tests.
· They need to be notified of projects and/or large assignments a few days ahead of the class so they can get these done in time.
· They should be allowed to dress as warmly as necessary in the classroom without the teacher(s) calling attention to the student's clothes.
· Their attention span is greatly limited. Concentration is also compromised. It may be necessary for the student to take short breaks.
· The student may get lost and/or disoriented when changing classrooms. The student should be given more time to get from one class to another. This should not be a source of friction between the M.E. student and their teachers.
· The M.E. student needs to be excused from regular physical education because exercise is known to make M.E. symptoms worse.
· The student can better judge their energy levels than professionals. Pushing the child beyond their limit is counter-productive.
· The use of a computer for essays etc may be easier than writing by hand.
· There may be emotional distress or anxiety for no logical reason. Simple reassurance and kindness is important.

It may also be useful to modify the curriculum. Nearly all youngsters with M.E. need to study harder and longer than their friends do. This may be unachievable due to the fatigue, unless the workload is reduced considerably. It may be better to study fewer subjects, with a better chance of achieving good grades.

Pointers for teachers:
1) Find out about M.E.
2) Understand the illness and symptoms can fluctuate
3) Even if the child doesn't LOOK ill, accept that they are
4) Believe the child when they say how they feel
5) Ensure all staff are aware of the child's needs
6) Be flexible with homework and schoolwork
7) Find ways to reduce energy expenditure. Photocopy notes; help in carrying books; excused from lining up etc
8) Don't make the child do P.E. until they are well
9) Allow the child to eat when necessary, even in class, or go to the toilet
10) If they are too ill to go to school, encourage other classmates to keep in contact


Summary of main problems with M.E.:                                     Back to Top

Physical effects:
- Fluctuating energy levels, from near normal to exhaustion, quite suddenly
- Sleepiness in the day, often caused by sleep pattern disturbance
- A delay in hours or days from an activity and symptoms starting
- Fatigue after the journey to school
- Problems carrying school books, sitting upright for long periods, moving around schools, managing stairs, doing P.E. and queuing for lunch
- A need to go the toilet often/quickly
- A need to eat often
- Problems with hearing, smell and temperature regulation
- Hypersensitivity to lab smells and substances causing headaches, nausea and dizziness.

Intellectual effects:
- problems with concentration, comprehension, reading and logical thought
- difficulty taking in new information
- inability to recall words/numbers or wrong word used, e.g. black for white
- forgetfulness and apparent carelessness - untidy work, forgotten work due to possible brain dysfunction

Psychological effects:
- emotional lability/tearfulness/anxiety which some suggest is caused by reduced blood flow to the brain
- low self-esteem and feelings of guilt at being ill

Social effects:
- feelings of isolation during periods away from school or when not able to take part in activities
- lack of understanding from peers

Training for teachers should include up-to-date information on M.E. as a serious physically disabling and long-lasting condition which badly disrupts brain function and therefore education. All schools and LEA'S should have a written policy for the education of children with M.E. in their schools, to be overseen by well-informed Special Educational Needs Co-ordinators.

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Guide for Children and Young People                                     Back to Top

The main symptom of M.E. (My-algic En-keff-allo-my-e-lie-tiss) is incredibly exhausting fatigue after even a very small amount of effort. You may also find you can't concentrate, you forget what's just been said, or you say the wrong words sometimes. It's exhausting on the body, and even more so on the mind. M.E. is an illness that strikes people of all ages, race and sex, and nothing can be done to prevent it. It isn't contagious like measles.

There are two types of M.E.: the first follows an illness such as 'flu, or an accident, operation or vaccination. It can usually be linked to something definite. It's sometimes called 'acute onset' M.E. The second can start very slowly. Over a period of time the symptoms become more noticeable and have a bigger effect. When fully established, they resemble those of the 'acute onset' illness.

In the 'acute' stage people feel most ill, so get as much rest as you need. It's very hard to find enough energy to keep going and things that were once easy becomes very difficult to do. Even if you can complete it, it may take a long time to recover from doing just one thing. Don't try to push yourself - take things easy instead.

The length of the illness can't be predicted, but it will be at least several months and it could last several years. Some peoples' M.E. gets worse as time goes on, although even then it's possible that they will improve. Some people are bedridden, some can go out of the house occasionally, and some people can work or go to school. In time, most people gradually start to feel better, although they may feel better one day but worse again the next. That is quite normal for the illness; symptoms vary from week to week, day to day or even hour to hour.

Unfortunately a diagnosis of M.E. isn't the end of the problem. Doctors still don't know what causes it, and don't have a cure. There is also no test for M.E. However, there are things you can do to help your own recovery.


Pacing

Work out what you can already manage each day, and write a timetable for your daily routine: when you eat, rest, do an activity of some sort. 'Rest' doesn't mean watching TV or reading, it's total rest, giving both your body and mind time to recover from what you've just done. When planning activities do little but often. Do an activity for 15 minutes and rest for 40, and then gradually extend this to 15 minutes.

Such success will give you a sense of achievement. Look at what you HAVE achieved - however small. You may find you have "windows" of activity. These are times of the day when you feel slightly better. Use them. You may be able to increase your activity level slightly week by week. This is better done when you have moved out of the acute stage of the illness, but the idea of total rest is good for every stage of the illness.

Unfortunately, some sufferers have problems with mobility - being too tired or too weak to walk on their own. Don't worry if you have to use a wheelchair to leave the house. It's better not to waste your energy, but conserve it for enjoying yourself while you are out.

Some young sufferers can tolerate very mild exercise while others can't. It's important to go at a slow, relaxed pace and to listen to your body. In general, if you find an activity draining and it takes several days to recover from it, STOP! Take the time you need to recover from it, and then re-evaluate how much you can manage to do. It's always important to remember that you may not feel the effects of today's activity until several days later. It is very important to pace yourself and you can learn to do this by listening to your body. It takes time to discover how much is too much.

Do 50% of what you feel capable of. On a better day don't use up all your energy - you need to conserve it. Imagine it's like saving money. You're given £100 every day, and if you use that £100, you have nothing left over; so only use £50 a day, and you have energy spare to help you get better. Listen to your body and stop before you're exhausted. You may find keeping daily symptom and activity logs useful to help you pace your activities and conserve energy.


Emotions

There are many complex emotions involved in coming to terms with having M.E. - including denial, anger and resentment, acknowledgement, fear, frustration, unfairness, hopelessness, acceptance and hope. M.E. is not a punishment for anything you did. This is an unfair deal for anyone. No one is to blame.

Parents may find your illness distressing too, and may pretend it isn't happening. You may also find them overprotective. It's very hard to try and tell someone in a simple conversation how it feels to be a person with M.E., even if you live with them and they see you live with it everyday. It's even harder to try and tell someone that you do not see everyday, such as friends and other relatives.

It can be normal to get depressed because M.E. changes your life so much. Depression can also be a physical symptom of M.E. and it helps to remember, like other symptoms, it can vary from day to day. One of the best things you can do to help overcome depression is talking to someone who understands you, whether this is a support group, pen-pals, friends, family, a counsellor or your doctor. But you are depressed because you have M.E., the M.E. is not caused by depression.


Friends

The number one thing that helps M.E. is support.

Friends may not understand what it's like to be ill. They need you to explain what it's like. Not everyone will understand, and you may lose friends. Look at it from your friends' point of view. We might feel embarrassed, shy, humiliated, not know what to say, this is common to everyone. Friends may upset you, or not contact you. They may make friends with other people while you're not at school. They may be scared and don't understand. Explain that even if you can't see them as much as you used to, you still value their friendship.

However, you will gain new M.E. friends through support groups and penpals. It does help to be in contact with other people suffering from M.E. It helps you realise you're not alone, and that other people have the same problems. Everyone needs people of their own age with similar interests to have fun with. You can still be friends with your old friends, you may just do different things together. You may find you're only well enough to see friends for short periods, and your friends won't understand the severity of your symptoms and it may scare them. Try and explain and give them some information to read. If you're too ill to write letters or speak on the phone, friends may feel you've no interest in their lives, when the opposite is true. Send cards or get someone else to keep in contact for you; photocopy a letter or record a tape.


Education

If you are attending school, you can't expect your mental ability to allow you to concentrate for long periods on a sudden return to school/college. The environment is stressful - crowds, movements, noise etc., and this drains your tiny supply of energy. Don't try to carry a heavy bag around school - ask a friend for help. You may be too ill to attend school, but there are alternatives such as home tutoring, part-time school, or even no school if you are too ill. Don't feel like a failure because you can't keep up with your friends or your schoolwork. You will catch up eventually.

A list of things that you can do to help survive school:
· Get a general letter from your explaining that you're really sick, that it's not going to go away next week and that you'll need some leeway.
· Write a letter yourself (or get your parents to write it if you can't manage it) which explains what M.E. means to YOU on a personal/practical level. For example that you might have to miss classes without warning, need extensions on assignments or extra time for exams, or that you need to be excused to turn up late to class because you can only walk slowly. Add everything that will be relevant to school.
· Make a package with copies of both letters, and some information about M.E. and give one to ALL your teachers and tutors. Talk to them all as well and make sure they've understood.
· If you're at college/university, find the "Disability" centre and make yourself known to them. These people should be the ones that stick up for you if you're having trouble with teachers. Also, ask them what else they can do that help you.
· The following tips may also help: get friends to tape lectures you're too ill to attend; get another student to photocopy their notes - particularly useful when graphs were drawn on the board; negotiate extensions on assignments and extra time for exams.
· Make a timetable for yourself and do a little bit of study all through the year, don't leave it until exams and due dates are looming - "normal" people might be able to get away with that, but if a sufferer tries to do it, you'll probably end up crashing.
· Be sensible and don't do stuff that's going to make you crash. If you *could* stay up all night and finish an assignment, or you could go to sleep and not get it done, then sleep. Making yourself really sick is NOT going to help in the long run. If you find yourself in that situation, it's time to take a visit to the lecturer, the tutor and/or the disability service and explain that you were too sick to finish something and could you have an extension.

If you're coming up to your GCSEs or A levels, would you do better to delay some of the subjects for a while and concentrate on fewer? Sometimes it's possible to have some help with your examinations. You may be able to do exams over quite a long period of time with breaks in between. Morning exams can be done in the afternoon. You may be offered a word processor or someone to write for you while you tell them what you want to say. Ask your parent or guardian to talk to the examination secretary at your school or contact the examination board directly for details. The school will need to apply, with a doctor's note, for special consideration - so you need start a long time before the exams are due to take place.

For people who have left school but wish to continue with their education, there are various 'distance learning' schemes available: The Open University and Open College are two possibilities. Often you are allowed to set your own timetable with only the minimum of attendance at college. Alternatively, if you feel you can attend lectures on site, ask about a reduced or re-organised timetable. If you have already been assigned a personal tutor, tell them of your situation and see if they can assist you.

When applying for university, it's important to look into types of accommodation. If you intend to live away from home there are four important things to think about. Firstly, it's a priority to find and register with a G.P. sympathetic to M.E. Secondly, talk to your tutors and lecturers and make it a priority to find one who will put their case forward to others. Contact students' welfare, or the disability office. Thirdly, it may be best to live on campus where possible, and if not, choose accommodation carefully in advance avoiding, for instance, a house on top of a steep hill, and considering proximity to shops and bus routes, assuming using a bus is physically possible. Predict your needs.

Fourthly, consider how fellow-students can make your life easier - doing the shopping, cooking, fetching and carrying, washing - anything needing lots of energy. Friends like these can make all the difference. Avoid joining lots of clubs to start with. Pace yourself. If in doubt, don't do it. This isn't a negative way of looking at things - it's merely sensible. You can always broaden out if you find you can cope with work and still have energy to spare. Orange badges are probably the single most helpful piece of cardboard ever invented. You don't need a car yourself to use an orange badge, and your friends may be quite keen to go out with you if they find they can park in a town centre for two hours on a double yellow line!

Some students will of course not be able to consider going away from home and may even need to access higher education through the Open University or other forms of distance learning. Some will be able to study at a college or university near their home, either full or part-time.

Remember:
· Maintain contact with your school/college, even if you're not in classes.
· Don't try to carry on with all your subjects. Better to get a few good marks than many bad ones.
· Sort the exam situation out as soon as possible.
· Don't let people push you back in to school/college before you are ready.

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Exam Arrangements                                     Back to Top

Taking exams takes a lot of courage and determination, however Exam Boards are keen to help students with difficulties. Requests for concessions need to be backed up by a medical letter, and it's important to start this process early in the academic year.

The types of concessions available for GCSE's and A Levels are:
Taking exams at home - the child sits the exams in their own home with an invigilator overseeing them. As an alternative, the student can take the exam in another room in school on their own, with a separate invigilator. Taking exams at home is not an easy option. It's necessary to house supervisors and invigilators, set aside a prepared room or area, create quiet exam conditions, make sure the phone doesn't ring and nobody comes to the door

Moving the time of the exam - M.E. sufferers seem to have better times of the day and it's sensible to arrange the exams for when energy levels are at their highest. If an exam is moved to the afternoon, the student should be supervised during the morning until the exam starts, to make sure there's no contact with other candidates. The same supervision is needed when moving an exam from the afternoon to the morning.

Rest breaks - students can take as many rest breaks as they need. These don't count towards the time allocated for the exam, but too many can be counter-productive and make the exam over long.

Extra time - up to 25% of the exam time can be added as extra time for students who have specific learning difficulties or neurological dysfunction.

An amanuensis or scribe can either complete the paper for the student by hand or on a word processor. To be allowed an amanuensis, you must show that the student has difficulties writing.

The student can also use a word processor if they have problems writing.

For Key Stage national Curriculum tests, the relevant booklets are Assessment Arrangements KS1, KS2 and KS3. Most special arrangements are granted by the school itself, but certain things need permission in advance from the Local Authority or from QCA (Qualification and Curriculum Authority) depending on the status of the school. Schools can get permission to grant extra time, vary the start times, or open the test early to divide it into sections. The candidate then takes several "mini-tests" with time for rest in between.

The Joint Forum (made up of the Examining Bodies for GCSE and GCE exams) produce detailed Regulations and Guidance. Ring the Joint Forum (01223 553425) and ask for a copy of their booklet "Candidates with Special Assessment Needs - Special Arrangements and Special Consideration".

The QCA and Joint Forum want to maximise pupils' potential. If they can help, they will. The final decision rests with them, not with the school or exam centre.

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Rate Your Fatigue                                     Back to Top

It can be frustrating to get people to understand the kind of fatigue involved with M.E. You may find it useful to create a scale showing the whole range. This can be particularly useful when explaining your problems to your doctor. When most well people talk about being tired all the time, they're basically talking about being at 3 (or maybe 4) on the scale. When we tell a doctor "I'm tired", that's what the doctor is also thinking.

1) I feel well rested, even energetic. Life is good.

2) I'm a bit off today. Not too bad, just not a lot of pep.

3) I'm tired. I think I need to get more sleep.

4) I'm really tired. I'm getting desperate for some rest.

5) I'm as exhausted as I've ever been when I was well. I feel like I've been working really hard, with very little sleep for 3-4 days.

6) It's a struggle to function at all. I feel like I'm walking through a lead fog. Getting anything done is a sheer act of will.

7) I'm longer functional. Just getting dressed has exhausted me. I'm either lying in bed or sitting on the sofa.

8) Forget getting dressed. Just getting from the bed to the bathroom to the sofa is all I can manage.

9) Need help to get from the bed to the bathroom. Forget the sofa. I'm too weak to sit up.

10) Can't get out of bed without help. I'm terrified that I won't have the strength to take my next breath.

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Check List of Symptoms                                     Back to Top

You may like to check-off your symptoms on this list and use it for reference.

1. Exhaustion/Fatigue… made worse by exercise.
    A. Post exercise malaise -
takes days to recover from strenuous activity.    …..

2. Cognitive function problems.
    A. Attention deficit/difficulty concentrating.                 …..
    B. Calculation difficulties.                         …..
    C. Spatial disorientation.                         …..
    D. Frequently saying the wrong word.                 …..
    E. Short term memory problems.                     …..

3. Psychological problems.
    A. Depression (secondary or reactive)                 …..
    B. Anxiety (may include panic attacks)                 …..
    C. Personality changes - usually worse with excessive irritability.     …..
    D. Mood swings.                             …..
    E. Emotional disturbance.                         …..

4. Other nervous problems.
    A. Sleep disturbance (too little or too much)                 …..
    B. Sensitivity to light or sound.                     …..
    C. Headaches (often severe)                         …..
    D. Blurred vision.                             …..
    E. Numb or tingling feeling.                         …..
    F. Severe muscular weakness. Also twitching muscles.         …..
    G. Intolerance to alcohol.                         …..
    H. Non-restorative, shallow sleep.                     …..
    I. Co-ordination and balance problems.                 …..
    J. Spaced out feeling, also dizziness.                     …..
    K. Frequent unusual nightmares (recurrent)                 …..
    L. Difficulty moving tongue (occasionally).                 …..    
    M. Ringing or high pitched sound in ears.                 …..
    N. Blackouts/fainting.                             …..
    O. Intolerance to bright lights (particularly fluorescent)         …..
    P. Alteration to taste or smell.                 …..         Q Disorientation/confusion.                         …..

5. Recurrent flu-like illness
    A. Chronic sore throats.                         …..    
    B. Recurrent catarrh.                             …..
       
6. Painful lymph nodes especially side of neck and underarms.         …..


7. Severe nasal and other allergies       
    A. Recurrent sinusitis.                             …..
    B. Mild skin rashes and irritation.                     …..

8. Weight changes either way.                             …..

9. Muscle and Joint Pains.
    A. Muscle spasms.                             …..
    B. Chronic tight muscles.                         …..
    C. Tender and sore muscles.                         …..
    D. Locking of joints.                             …..

10. Abdominal Problems
    A. Irritable bowel syndrome.                         …..
    B. Diarrhoea.                                 …..
    C. Nausea.                                 …..
    D. Intestinal gas or bloating/cramping.                 …..

11. Body temperature changes without reason.                 …..

12. Night sweats                                 …..

13. Chest Problems
    A. Heart palpitations.                             …..
    B. Rapid heart beat.                             …..
    C. Chest pain.                                 …..
    D. Breathing problems.                         …..

14. Severe PMS                                 …..

15. Problems with incontinence                         …..

16. Multiple sensitivities to substances
    A. Medications.                             …..
    B. Foods.                                 …..
    C. Chemicals.                                 …..

17. Other Possible symptoms
    A. Hair loss.                                 …..
    B. Dry eyes and mouth.                         …..
    C. Cough.                                 …..
    D. Cold hands and feet.                         …..
   
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Booklist                                     Back to Top

Here is a List of Books that may be useful to both sufferers and their families.

CHAITOW, Leon
Post-Viral Fatigue Syndrome - its causes and how to heal it.
J.M.Dent, 1989

WILKINSON, Steve
M.E. and You - A Survivors guide to post-viral fatigue syndrome
Thorsons, 1988

MACINTYRE, Anne
ME/CFS: A Practical Guide
1998

LONGDEN, Deric
Diana's Story
Bartram

COLLINGE, William
Recovering from M.E. - a guide to self-empowerment
Souvenir, 1993

FOX, Joyce
Surviving M.E.
Vermillion, London, 1996

MOSS, Jill
Somebody Help M.E.
Sunbow Books,1995

SHEPERD, Charles
Living with M.E.

HO-YEN, Dr Darrel
Better Recovery from Viral Illness
Dodona Books, 1993

Some of these books may be available from your local library.

©  Copyright ME Support 1999
The information in this leaflet is meant for guidance only and should not take the place of proper medical care.
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