12 basic rules for handling Myalgic Encephalopathy (ME)

12 basic rules for handling ME

1. Avoid noise and unnecessary talk. Questions may be felt as a great burden. The least taxing are questions that may be answered by yes or no.

Avoid asking again if you don’t receive a reply. Await the situation until the patient is ready and starts talking.

The temporal lobes (which process auditory stimuli) may not be functioning properly. Being spoken to may then be felt like being hit in the head by something hard. The temporal lobes also process numbers, short term memory, music and more.

2. No one with a cold or who might be contagious should be in contact with someone suffering from ME. Cover your mouth if you have a cough or a cold and absolutely need to be in the same room. Always take due care with hand hygiene.

ME-patients’ tolerance of infections is not normal. Even a seemingly slight infection may trigger serious and long lasting deterioration.

3. Make sure that the temperature is kept even.

Avoid letting the patient get cold. Cold increases symptoms and impair functioning.

Many have a poor tolerance of heat as well.

Avoid pressure from blankets and covers against the stomach region in bedridden patients. The solar plexus area may be extremely sensitive.

4. Bowel movements and visits to the toilet may be extremely draining and demand especially prolonged restitution time (could be felt like a blow to the solar plexus). Food may also temporarily impair the general ability to function.

Avoid all activity in the room and avoid talking or engaging the patient in anything during and after meals.

5. Unfamiliar faces, news (good or bad), surprises, being moved from one place to another, and all kinds of readjustments are abnormally taxing in ME.

Anything new or unexpected may trigger a sudden and long lasting loss of energy – this is also the case with sudden loud noises, being approached, and movements in the visual field.

The patient needs predictability in every day living and should be warned in advance of any deviation from the agenda.

Most are also intolerant of bright or electric light, the sound of machines, and changes in the weather.

The most vulnerable experience an absolute intolerance of sound, light and touch and need maximum protection.

6. No one with perfumes or heavily perfumed cosmetic products should be in contact with ME patients. Odours may trigger a sudden and long lasting increase in symptoms.

Make sure that the ventilation is adequate.

7. Meals should be served at least every four hours. Hunger may be accompanied by increase in symptoms, stiffness in the joints and problems swallowing. A hungry patient could also experience a sudden feeling of being satisfied at the start of the meal when the food finally arrives. The food should be as varied as possible without provoking symptoms.

Food intolerance is frequently seen in ME, and varies throughout the course of the illness.

8. Many patients experience an increased thirst. Water should always be available. They are not always able to drink themselves.

9. Skin contact, sudden movements, use of muscular force or pressure against support may trigger severe pain and long lasting impaired functioning of the body part involved. This reaction may be delayed. Forcing the voice level when speaking may trigger pain in a similar manner and cause long term hoarseness.

10. Speaking is abnormally demanding and may cause a delayed reaction, sometimes even a rash. Ensure frequent breaks. Having to repeat or explain anything is abnormally taxing for someone with ME. This is enhanced when met with arguments or resistance, being cut of, questioned, subject to suspicion, trivialisation or lack of attention.

Be alert, take notes if necessary, and be the patient’s spokesperson.

11. All kinds of activity, physical as well as mental, active as well as passive, may trigger an increase in symptoms. This increase is brought on immediately or may be delayed by several hours and even days, in a pattern that varies throughout the course of the illness. This mode of reaction is the most characteristic sign of ME.

It is also the most important guide to patient management. Keeping active or increasing the activity level will not solve the problem. Stability is obtained by consistently avoiding all activity and stimuli that cause an increase in symptoms. This is difficult to control both because the reaction may be delayed and because activity may lead to a temporary increase in well being.

The activity level increases spontaneously when the condition improves and needs to be strictly controlled.

Activity that goes against gravity, like rising, lifting the arms, using eating utensils, brushing teeth or washing hair, is particularly difficult. Sitting may be more taxing than standing, standing more taxing than walking, walking than running, and so forth (static activity more taxing than dynamic).

The patient may need to mobilise to be able to eat and should be allowed to finish as quickly as possible and go back into rest mode.

Similarly, being kept waiting is extremely challenging because it implies keeping up mental mobilisation.

This could be misinterpreted as a lack of social competence.

For ME to stabilise and gradually improve, the activity level needs to be restricted to the experienced level of tolerance to avoid provoking reactions. Recovery is slow, and demands great patience.

12. ME implies a great workload in terms of enduring symptoms, budgeting with energy and restoring physical and mental functions following exertion. Thus, these patients are seldom “resting” in the normal sense of the word. They should never be engaged in anything against their will or bereft control over the brakes.

Care should be based on the patient’s own coping strategies, and caregivers must be conscious of the lack of power and the special needs that arise when suffering from ME. There should be no doubt about the medical responsibility in securing adequate protection and relief until the patient is no longer feeling ill, and the characteristic reaction pattern is gone.

© Sidsel Kreyberg, Head of The registry for myalgic encephalopathy in Norway