SEVERE ME

KEY SYMPTOMS, IMPACT AND SERVICE RESPONSE TABLES

BY GREG CROWHURST RNMH PG Dip Cert Counselling MA

(SUITABLE AS A SOURCE OF REFERENCE

FOR ALL SERVICE PROVIDERS)

Enclosed please find set of three tables outlining some of the key symptoms of severe ME, the outcomes resulting from such symptoms and appropriate service responses.

Main symptoms outlined:

TABLE ONE: Sleep Paralysis

Light Sensitivity

Noise Sensitivity

TABLE TWO: Sleep Disorder

Pain

TABLE THREE: Headaches

Muscle Weakness/Variability

Severe Me: Key Symptoms, Impact And Service Response Tables

Symptom	Experience	Outcome	Service Response
Sleep Paralysis	Completely unable to move. Difficulties with breathing Difficulties with speech Difficulties with swallowing	Cannot sit up/move/get-out of bed/feed yourself/get a drink/get dressed/talk/go to toilet/wash yourself/answer the door/get the post	Provide physical assistance: Lifting/Supporting (assisted walking)/Mobility/Dressing/Personal Care/Shopping/ Cooking/Feeding Knowledge of what the person needs in advance. Sensitivity & Awareness.
Light sensitivity	Cannot bear bright light, maybe any light at all, even with eyes closed.	Need to wear dark glasses, have curtains shut, no lights on or low lights only	Acceptance Be prepared Work in low light situations and/or protect client from light if need light on
Noise sensitivity	Cannot bear loud noise, unexpected noises, banging and thudding in the room or in the environment	May not cope with electrical/mechanical machines i.e. hoover Listening to speech may be a problem Loud voices/certain tones of voice may cause distress Doors being shut / loud footsteps/ rustling paper/opening drawers/cupboards etc can cause torment	Develop appropriate communication system i.e. written instructions, low voice, possible sign language, be very gentle and quiet in all movements/actions. Be aware that your noise may cause distress even if not noisy to you. Respond appropriately if you cause noise

Symptom	Experience	Outcome	Service Response
Sleep Disorder	Real problems going off to sleep and/or problems in waking-up. Normal sleep pattern grossly disrupted (little or no restorative sleep). Night insomnia and sleep all day. May sleep more than normal. Body-clock out of sync with normal rhythms.	May be awake at night, distressed, severe fatigue, but still unable to sleep. Body functions may be altered e.g. need to urinate more alongside a severe thirst and need to drink. Low blood sugar because of increased time in bed during the day. Increased irritability.	Advice on enhancing sleep possible relaxation /breathing techniques. Reduction of over stimulation. Warm bath to relax muscles. Drugs to aid sleep Assistance day and night to enable basic needs to be met: toilet, food, drinks etc.
Pain	Whole body may be too painful to touch. Skin itching / burning/ hypersensitive. Muscles throbbing/burning/screaming	May be continuous, may vary in degree. Poor response to drug treatment. Cannot bear to be touched. Difficulty in getting comfortable: seating and bed and wheelchair.	Pain awareness and extreme sensitivity. Knowing how to touch and lift carefully. Patience and time is required to ‘flow’ with the person. Advice on what is available to alleviate pain: aids and equipment and drugs.

Symptom	Experience	Outcome	Service Response
Headaches	They are not normal, they maybe constant or last for days, can be predominantly left-sided, may not respond to drugs. Also may be the experience of head-pain, as opposed to headache.	Scalp sore to touch. Eyes throbbing/burning. Face can hurt as well. May be accompanied by numbness, paralysis, swollen eyeballs, and nausea. May be sharp, throbbing, may be dull but no less severe.	Be sensitive to noise and light issues. Awareness of the potential emotional distress of being in constant pain and the potential for the person to be irritable. Medication
Muscle Weakness/ Variability	May be able to use your muscles one moment and not the next.	Danger of falling/stumbling. Affects the person’s independence: may be not able to use hands/fingers/ perform fine movements. May be able to walk one moment and not the next, or at all. May not be able to write/type/turn things on and off/cook/clean/ attend to personal care/eat.	Mobility issues may require a wheel chair. May be bed bound and/or housebound? May require help with cooking, cleaning, shopping, personal care, with eating, writing, communicating, social interaction, sexual relationships. May not be able to use stairs or unreliable use of stairs. Adaptations/aids/ equipment