What is M.E.?                          Back to top of page

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

The letters M.E. stand for myalgic encephalomyelitis; meaning muscle pain, and brain dysfunction and spinal cord inflammation. The term CFS tends to be used in the USA and M.E. is used in Britain, Canada and Australia. However, there has been a move towards using the term CFS in Britain by doctors who believe the term M.E. to be inaccurate. Many patients dislike the name CFS because the word "fatigue" makes it seem that 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 a cause, for the illness has been found. There have been some calls to keep the letters M.E. but standing for myalgic encephalopathy - which would be more accurate, and would also keep the name M.E., which the general public is finally becoming aware of.

It is still very difficult to get a diagnosis. Because 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 were those of depression or psychosomatic disorders which seemed to blame the patient for being ill. Even worse for many was being given no diagnosis at all.


What causes M.E.?                          Back to top of page

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, nor is it attributable to a single cause. Instead it is a result of multiple factors coming together.

A List of Symptoms of M.E.                          Back to top of page

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, in specific muscle groups.


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.


What Course do the Symptoms take?                          Back to top of page

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                          Back to top of page

The chronic phase is marked by settling into cycles of symptoms 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.

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.

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.

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.

Until recently, almost all the attention in dealing with M.E. has been on describing the syndrome and the search for causes. Very little attention has been given to describing the recovery process or explaining why, or how, people, recover. Now with more people getting into recovery, this subject is being looked at more carefully.

The Recovery Phase                          Back to top of page

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 a vigilant attitude is maintained.

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 of page

There are no conclusive tests for M.E. 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.


Are there any treatments for M.E.?                          Back to top of page

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. 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 pain-killers. However, most sufferers find they cannot tolerate the "normal" dosage of drugs and have to take lower doses due to this sensitivity.

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.

However, it seems that one of the best treatments is pacing. Learn to rest and follow the 50% rule: never use more than 50% 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.?                          Back to top of page

Often sufferers find they can no longer tolerate alcohol, and may also develop food sensitivities. The best solution is to avoid those foods causing the problems. 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.


How long will I be ill?                          Back to top of page

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. If you receive an early diagnosis and rest at an early stage, you may be more likely to 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+.

Who gets M.E.?                          Back to top of page

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 an 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, with 25,000 young people with M.E. M.E. is not only found in adults - it also affects children - usually after puberty, but some younger children also have M.E.


How does M.E. differ from other illnesses?                          Back to top of page

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 Food 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?                          Back to top of page

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.


What if my doctor doesn't believe in M.E. or is unsympathetic?                          Back to top of page

For anyone who has followed this syndrome, there is no longer any question that it exists. However, there is a period of time between a new illness being identified and when the medical community at large takes it on board. Fortunately, the medical literature is 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?                          Back to top of page

The Department of Health and the DSS now officially recognise M.E. as having a physical cause, so an M.E. sufferer should, in theory, get the necessary benefits after being diagnosed. If you can't stand for long, or walk far (100 yards), apply for Disability Living Allowance from the DSS. If you are unable to work, you may also be entitled to other benefits such as Incapacity Benefit, Income Support or Severe Disablement Allowance. If you claim these benefits, any carers may also be entitled to claim Carers Allowance. The group offers help with applying for these benefits.

You may also be entitled to an Orange Badge (under the Orange Badge Scheme) which is available from your local Social Services office. If you need a wheelchair, 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. We also run 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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Some of these books may be available from your local library.


Copyright ME Support 1998
The information in this leaflet is meant for guidance only and should not take the place of proper medical care.