Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome (CFS)* is a long term debilitating illness affecting adults and children. It is characterised by severe symptoms including long term fatigue, joint and muscle pain, cognitive dysfunction (poor memory and concentration), gastric and digestive problem and sleep disorders. It is a fluctuating, relapsing illness with varying degrees of severity.
There are estimated to be 250,000 sufferers in the UK, of whom around 25% are severely affected being housebound or bed bound and unable to look after themselves. It is a life changing and very isolating illness.
Prognosis is variable. The cause is still unknown and no cure has yet been found, treatment focuses on relieving symptoms. This a very real, debilitating illness affecting adults and children all over the world.
There is much discussion over the correct terminology for this condition. NICE guidelines currently refer to CFS/ME. Other terms include Myalgic Encephalopathy, Post-Viral Fatigue Syndrome (PVFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Systemic Exertion Intolerance Disease (SEID).
Everyone suffers with ME differently so not everyone suffers with all the same symptoms or the same degree of severity in those symptoms. Some of the symptoms include..
- Extreme exhaustion, debilitating fatigue – Up to the point of collapse. Can not just push past it. Not like normal tiredness, sleep or rest does not refresh
- PEM (Post-exertional malaise) – Fatigue that is delayed by a day or two after too much activity also known as payback
- Muscle pain – Intense pain in all muscles in the body but particularly legs and arms
- Bone pain
- Nerve pain – Skin often too painful to touch or to have clothing or bedding on.
- Stiff and painful joints
- Poor mobility
- Muscle weakness – All throughout the body
- Muscle tremors and spasms
- Poor gross and fine motor skills
- Cognitive difficulties – Impairment of concentration and short term memory. Difficulty processing information and retrieval of the right words, commonly known as ‘brain fog’
- Loss of temperature control – Constantly fluctuating between too hot or too cold
- Swollen glands
- Sore throat
- Ear ache
- Light, noise, taste, smell, touch sensitivity – Often have to be in a dark and quiet room without movement
- Weak immune system – Pick up viruses easily
- Sleep dysfunction/Insomnia
- Flu like symptoms constantly
- Digestive problems/Food intolerance
Sadly, because of all the symptoms there is a loss of a normal existence so it can be lonely and isolating. It affects every part of your life including work, education, social life, hobbies, friendships and for some there is a battle against ignorance.
In mild cases you can care for yourself and still do a lot of ‘normal’ activities but with a struggle. You may still be able to be in education or work, but often have to take days off because your body doesn’t cope or respond in the way it used to. In order to be able to continue education or work you are likely to have had to stop leisure and social activities to cope and weekends or other days off are used to rest.
In moderate cases you probably have reduced mobility and are restricted in most activities of daily living. You are likely to have had to stop work or education and require frequent rest periods. Moderate cases are usually housebound but able to get out of bed and be around the home albeit with a struggle. Occasionally able to get out of the house for short periods of time relying on disability equipment to do so.
In severe cases you are bed bound. You are forced to spend all your time in bed as you cannot physically do anything else. Unable to tolerate light, noise and movement so have to live in a dark and quiet room. All stimulus make your symptoms worse.
100% FULLY RECOVERED
No symptoms, even following physical or mental activity. Able to work or study full time without difficulty and enjoy a social life.
95% VIRTUALLY RECOVERED
No symptoms at rest. Mild symptoms following physical or mental activity, tire rather easily but fully recovered next day. Able to work or study full time without difficulty, but social life is slightly restricted.
90% MILDLY AFFECTED
No symptoms at rest. Mild symptoms following physical or mental activity. Work or study full time with some difficulty but social life rather restricted. Tire easily with gradual recovery over 2/3 days.
80% MILDY AFFECTED
Mild symptoms at rest, worsened to moderate by physical or mental activity. Full time work or study is difficult, especially if it is a crowded, noisy or busy environment but may be possible. Unable to have much of a social life due to using all your energy working or studying.
70% MODERATELY AFFECTED
Mild symptoms at rest, worsened to severe by physical or mental activity. Daily activity limited. Part time work or study may be possible for a few hours a day with careful pacing of activities and rest periods.
60% MODERATELY AFFECTED
Mild to moderate symptoms at rest. Increasing symptoms following physical or mental activity. Daily activity very limited. Work or study outside the home is difficult unless additional support is available – quiet room, use of disability equipment, need rest breaks. Activities at home may be possible on good days. Quiet, non‐active social life.
50% MODERATE TO SEVERELY AFFECTED
Moderate symptoms at rest. Increasing symptoms following physical or mental activity. Rest times needed. Able to do some activities/home study for short periods of time. Not confined to the house, able to go out for short periods of time a few times a week but have to balance that in with rest times. Have to use disability equipment when out as may be unable to walk much more beyond 100/200m unaided.
40% MODERATE TO SEVERELY AFFECTED
Moderate to severe symptoms following any activity. Care must be taken not to overdo anything at this stage. Not confined to the house but unable to walk much more than 50/100m. May be able to leave the house once or twice a week for small outings but usually requiring aids such as wheelchair/walking stick/crutches. Regular rest periods during the day are needed. Only one ‘large’ activity possible per day – showering, friend popping round, doctors visit etc. Time before and after activity needed to rest.
30% SEVERELY AFFECTED
Moderate to severe symptoms at rest. Severe symptoms following any physical or mental activity. Confined to the house but able to get downstairs. Most of the day spent resting. Small activities possible, watch TV/listen to music for short periods.
20% SEVERELY AFFECTED
Fairly severe symptoms at rest. Weakness in hands, arms or legs may be restricting movement. Confined to bed/settee most of the day but able to sit in a chair for a few short periods. Small tasks possible for very short periods.
10% VERY SEVERELY AFFECTED
Severe symptoms following any activity. Weakness and pain in arms and legs. In bed most of the time but able to get the bathroom with help. Concentration very difficult. Only one very small task possible per day for only 5-10 minutes.
5% VERY SEVERELY AFFECTED
Severe symptoms almost continuously, but may be possible to be propped up in bed for very short periods. Weakness and pain in arms or legs can give rise to paralysis. Small personal care may be possible with help. Any stimulus worsens all the symptoms.
0% VERY SEVERELY AFFECTED
Severe symptoms on a continuous basis. In bed constantly, feeling extremely ill even with permanent rest. Severe pain throughout body. Unable to tolerate light, noise or movement. Unable to sit up in bed and unable to care for self. Occasionally, nasal feeding tubes are required when the energy to chew is completely spent. Any stimulus worsens all the symptoms. Sleep pattern often completely reversed.