Myalgic Encephalomyelitis

What Is ME?

ME {myalgic encephalomyelitis} is a potentially chronic and disabling neurological disorder, which causes profound exhaustion, muscle pain and and cognitive problems such as memory loss and concentration for which the cause is still unknown. Other symptoms that are common include sensitivity to light, noise and smell, disturbed sleep patterns and persistent headaches. Myalgic Encephalomyelitis means pain in the muscles and inflamation of the brain.

It can affect people of either sex, and any age or social group. Severity and duration, and the resulting disability vary considerably, but many patients suffer profound ill health, and greatly reduced physical and cognitive function, interfering with activities of daily living, employment and education.

The main symptom of ME is a severe fatigue and malaise following exercise, with weakness and pain in the muscles after use, and frequently muscle twitching. In the more recent past there were misconceptions that only certain social classes were affected and many people regarded the illness as a relatively mild condition - some even doubted its very existence. In fact, around 20% of sufferers are so severely affected that they are either house or bed-bound and have enormous difficulty performing even basic personal tasks unaided.

The clinical features that enable ME to be distinguished from other causes of fatigue are firstly the new onset of unexplained fatigue, lasting over six months, not related to ongoing exertion, and not substantially alleviated by rest, associated with a reduction in one's level of activity by 50% together with a range of other symptoms.

The most important things your doctor can do is to make sure that you do not have another treatable condition causing your symptoms. Some general practitioners may refer you to a hospital consultant for a second opinion, although this is not essential.

Once a diagnosis of ME has been made, it is helpful to make a plan of management for the illness as soon as possible in order to reduce its duration and effect on your life.

Patients suffering from ME may show features of other syndromes, notably irritable bowel syndrome and fibromyalgia: and patients with these conditions may also have some of the characteristic features of ME This suggests that they may share similar pathogenetic, predisposing or triggering factors, perhaps representing a family of related disorders.

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Symptoms And Associated Syndromes

Fatigue - The predominant symptom of ME/CFS is usually severe fatigue and malaise following mental or physical activity, the full extent of this exhaustion often becoming apparent only 24 to 48 hours after the activity {assuming, of course, the person was not already in a 'recovery period' from a previous activity}.

Muscle symptoms - Include exercise intolerance and post-exertional malaise {i.e. feeling shattered the day after undue physical activity}, pain/myalgia {present in around 75% of people} and visible twitching of the muscles which sometimes includes eyelid twitching.

Brain and Central Nervous System Symptoms - Include cognitive dysfunction {problems with short-term memory, concentration and maintaining attention}, clumsiness, disequilibrium likened to 'walking on rubber', and word finding abilities. Problems with control of the autonomic nervous system results in palpitations, sweating episodes and symptoms associated with low blood pressure/postural hypotension {e.g. fainting}.

Immune System - Symptoms which suggest on-going abnormalities in immune system function include sore throats, enlarged glands, joint pains, headaches, problems with temperature control and intermittent flu-like feelings.

Irritable Bowel Syndrome - Constipation, diarrhoea, frequent abdominal pain, abdominal gas and nausea represents symptoms frequently found in ME patients.

Fibromyalgia - A widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the fibrous tissues in the body.

Other common symptoms - Other symptoms which frequently occur in ME/CFS include sleep disturbances, alcohol intolerance, emotional lability or mood swings, features of clinical depression as time goes on, cognitive or memory impairment, palpitations, muscle pain, joint pain {without signs of inflammation}, sore throat, tender lymphadenopathy, headache, postural or rotational dizziness, altered temperature sensation, parathesiae and sensitivity to light and sound.

Aggravating factors - Changes in weather, cold or draughty environments, hormonal fluctuations {premenstrual and menopausal states}, stress, depression, anxiety and over-exertion can all contribute to symptom flare-ups.

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Possible Causes

The cause of ME and chronic fatigue syndrome remains elusive, but there are many triggering events thought to precipitate its onset. It is estimated that around two-thirds of all cases are preceded by a viral infection of some kind. A substantial proportion of patients relate the onset of ME to an infection. It has also been seen after other herpes viruses, retoviruses, spuma or foamy viruses, enterovirus, Epstein-Barr virus and hepatitis infections and nonviral infections, such as Q fever, toxoplasmosis, salmonellosis, brucellosis and Lyme disease.

Whether infections act simply as a trigger in predisposed individuals or have a specific role in triggering the continuing illness is unclear. There is no consistent evidence of abnormal viral persistence. The pattern that is emerging is a chronically activated immune system, an immune system engaged in some kind of chronic war against some kind of thing that it perceives as foreign. A healthy immune system responds to an enemy virus, or viruses, by releasing chemicals, called cytokines, to fight the invaders. However, when the emergency is taken care of, the production cytokines normally ceases. But in ME patients the immune system apparently fails to shut off. So it is not the virus that makes a person feel sick, he feels ill because his body cells are producing cytokines, which cause the fever, achiness, and fatigue. These cytokines remain and begin to damage the the host until ultimately we see the profoundly bedridden patent.

Other triggers are reported, including some immunisations, chemotherapy and occasionally chemical exposure e.g. organophosphates. A familial component is possible. Events and stressors around the onset may influence the occurrence or maintenance of the altered state. In a recent community based study, about 60% of the subjects had no prior psychiatric diagnosis, though the illness itself appeared to increase evidence of psychosocial stress.

It is also common for many patients to report periods of stress during or before the viral infection took hold. However, there are a great many sufferers who are not able to give a precise moment when the illness took hold and recall feeling increasingly worse over a prolonged period of time.

Almost all practitioners now recognise that there is a strong physical causation involved in ME However, as with any long-term, chronic illness, there will be occasions where secondary psychological factors may contribute to the maintenance of the illness.

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Common Treatments

Measures to suppress or alleviate distressing symptoms are important adjuncts to management, and are sometimes forgotten or under-utilised. Approaches can be behavioural or pharmacological, using measures established in other settings, but adapted to this patient group. Patients with ME seem to suffer adverse drug reactions more readily than others and may require care with dose and type of agent used.

Low dose tricyclic antidepressants may improve sleep rhythm in-patients with early morning waking or light dreamy sleep. The rationale must be explained.

Amitriptyline, doxepin or nortripyline, starting at 10mg or trazodone 50mg at night are useful; if excessive sedation or antimuscarinic adverse effects occur, alternatives should be tried. Short term, occasional, use of non-benzodiazepine hypnotics can help patients with major difficulties in getting off to sleep to re-establish a normal sleep pattern.

Tricyclic agents can also alleviate pain, especially if it has neuropathic quality, as can sodium valproate and carbamazepine. Regular analgesics are often of limited long term efficacy. Muscle pain associated with spasms or twitching can be reduced by baclofen or other muscle relaxants. Cognitive behavioural therapy and simple advice {e.g. avoiding caffeine and alcohol} can help both sleep and pain management.

Postural dizziness can improve as cardiovascular fitness improves, and does not require drug treatment. Cinnarizine or betahistine may alleviate rotational vertigo. Frequent or persistent headaches, especially those of a migrainous quality, may be helped by prophylaxis with low dose tricyclics, pizotifen or sodium valproate.

Selective serotonin reuptake inhibitors do not help ME patients without depression. If depression needs treatment, tricyclics can be useful, though slow dose titration is important. Selective serotonin reuptake inhibitors are less well tolerated, but of this group, citalopram and sertraline appear to be useful. Panic attacks and mood swings respond to behavioural management.

Recent studies of low dose corticosteroid treatment have given conflicting results and more data are needed before considering their use in clinical practice.

Rehabilitation Treatments
Graded rehabilitation programmes must be individualised for the patient's symptoms, level of disability and personal circumstances. They should also encompass more than physical exercise; as emotional and mental activities also need to be paced.

Adjustment to the illness, and a behavioural response limiting its impact, while maximising the extent and rate of recovery, is crucial. As with other illnesses, cognitive behavioural therapy, tailored to the patient's needs, can substantially reduce secondary distress and optimise rehabilitation. Sadly, many perceive cognitive behavioural therapy as treatment for psychiatric disease, rather than a means to assist adjustment and recovery.

Patients with less severe illness can generally be managed by GPs and physicians, but those with more severe and protracted illness or with adjustment difficulties may benefit from more structured input from a team including, for example, physiotherapists, occupational therapists, clinical psychologists, dieticians and social workers.

Alternative Treatments
Many ME patients turn to complementary practitioners for help with an illness for which allopathic medicine has few answers, and surveys indicate high levels of appreciation.

It is important to consult practitioners who are properly qualified. Patients need to understand that no one therapy is likely to provide a magic cure. Many expend large amounts of money or energy looking for an instant cure only to be disappointed.

Acupuncture may help pain and insomnia. Massage with essential oils {e.g. lavender} seems to reduce pain and muscle spasms. Homeopathy and osteopathy have been found helpful by many patients. Relaxation and meditation techniques can be beneficial for those well enough to learn them. Their practice encourages mental as well as physical rest.

Acupuncture, acupressure, nutrition, relaxation techniques, osteopathic manipulation, chiropractic care, therapeutic massage, or a gentle exercise program. Therapeutic massage, heat or hot baths, ice massage, biofeedback and other relaxation techniques, stress reduction, behaviour modifications, body mechanics, posture training, cognitative behaviour threapy and meditation.

Activity should be managed to assist natural recovery and limit secondary problems, which are intrusive or may interfere with recovery, such as sleep disturbance.

Many patients attempt too high a level of activity until they relapse, leading to cycles of over and under-activity. Others overcompensate and avoid activity, fearing relapse but then develop symptoms of deconditioning {cardiovascular and muscular unfitness} or excessive awareness of physiological changes. It is essential therefore, to establish a base~line that does not provoke relapse and then build up by small tolerable increments slowly {'pacing'}.

The benefits of graded exercise have been shown by randomised controlled trials. However they cannot be seen as a panacea. As with almost all research in the field, such programmes have excluded those who are most profoundly affected and surveys undertaken by the charities have found an equal number reporting they have been helped by graded exercise as have been made worse.

ME patients should be encouraged to adopt a healthy, fresh-food diet. It may be helpful to avoid alcohol, coffee, tea, sugar, processed and 'junk' foods.

Modifying fibre uptake, usually by reducing it, may help irritable bowel syndrome. Mebeverine or low dose tricyclics may reduce bloating, cramps and diarrhoea.

Some patients find that certain foods increase gut and other symptoms, but they may need guidance about some more radical dietary interventions suggested by other practitioners. A dietician can help manage these aspects and weight change, which may result from altered activity and eating patterns.

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Taking Charge Of Your ME

Pacing means alternating activity with rest, also alternating different activities e.g. mental work with physical tasks, stopping each before you become exhausted. Rest in the early stages of illness, but avoid complete bed rest unless absolutely necessary.

Given that the symptoms in ME generally fluctuate, it is good to take advantage of those days when you have more energy by doing some of the normal things you did before you were ill.

It is naturally tempting to want to cram everything into those good days - but the effects of such an approach can be damaging, leading to a relapse.

This is sometimes referred to as 'boom and bust' so be sure to keep some energy in reserve until you have established your baselines and limitations.

Cautiously experiment to determine the level of activity {physical and mental} you can manage without causing a relapse. Keep within those limits until several days have passed, then if still feeling better gradually increase them.

You may find it helpful to keep a diary or a chart, recording how much you have done and how you feel on each day. Remember to record all your activities, not just the physical. This can help to establish a 'baseline' from which you can experiment as you gradually take on more and more activities.

It is impossible to give precise guidance about how much you should do or how long your recovery will take. Every person is different, which is why pacing is a personal programme that each individual develops to establish how much they can do.

Most importantly, do not be disappointed if it takes time. Overdoing it in a rush to get better may well set your recovery back - and remember that most people significantly improve over time.

Do not be deterred by feelings of healthy tiredness {without nausea or prolonged pain}, which after unaccustomed activity/exercise is normal and positively beneficial, and should not deter you from moving your activity/exercise to the next level.

You should however stop if you experience feelings described by some as 'flu-like', or if prolonged pain recurs i.e. a flare up of your ME symptoms such as muscle twitching, severe malaise, nausea, loss of brain function, rather than healthy tiredness.

When you feel that these feelings are well past, start your activities again at a level you can cope with and gradually build up.

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