Severe ME/CFS
How could you tell? …What would you do?
Up to 91% of people with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) have not been diagnosed. These people are not receiving appropriate treatments or healthcare advice. If you feel tired often, how would you know if you have this disease?
Some, approximately 25%, of people with ME/CFS are more severely affected by the illness. They may be confined to bed, and require constant care. They may be unable to leave the house without the use of a wheelchair.
They can have an almost bewilderingly complex range of problems (often including loss of movement, speech and the ability to eat) as well as difficulties with basic day-to-day tasks such as washing and toiletting and a huge number of extreme symptoms (such as pain, muscle problems, sensitivity to light, sound and touch, flu like malaise, gastrointestinal disturbance, cognitive dysfunction, sleep disturbance, dizziness and paralysis). Life can be a constant agony.
Patients, loved ones and medical professionals can be left feeling frightened and totally helpless in the face of such immense suffering. Studies have shown that patients with this condition have more physical dysfunction than those with multiple sclerosis, and the degree of impairment is more extreme than in end-stage renal disease and heart disease.
