Severe ME/CFS

Some, approximately 25%, of people with ME/CFS are more severely affected by the illness [1]. 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 [2].

Careful management is needed. Realistic goals should be identified, however small, and one should pace one’s daily tasks as much as possible.

Video

The Movie Voices From The Shadows tells the stories of brave and sometimes heartrending stories of five ME patients and their carers along with input from researchers – “Please remember this film is not suitable for children and young people with ME who may be distressed by viewing it. It is intended to educate those who are not familiar with the illness and issues surrounding it.”

Available from Vimeo On Demand. And here is the Facebook page for the Movie.

References and Helpful Information

Supporting someone with Severe ME by Greg Crowhurst 2012.

55 reasons why people with Very Severe ME cannot access health care by Greg & Linda Crowhurst 2003.

Stone Bird

Action For ME: Severe ME

SevereME.info

McDermott, C., et al. “What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise.” BMJ Open, 2014, 4(6): e005083.

Derek Pheby and Lisa Saffron, “Risk factors for severe ME/CFS“, Biology and Medicine, 2009, 1 (4): 50-74.

Crowhurst, G. “Supporting people with severe myalgic encephalomyelitis.” Nurs Stand, 2005, 19(21): 38-43.