M.E. stands for Myalgic Encephalomyelitis it's also referred to as ME/CFS.
It is estimated that around 250,000 people in the U.K. suffer with ME and around 25% of those are housebound or bed-bound leaving them meeting the criteria for Severe or Very Severe ME.
It is a complex medical condition that affecting multiple systems of the body. It is most commonly triggered by a virus or infection. The cardinal symptom is PEM (Post Exertional Malaise, symptom exacerbation from cognitive, physical or emotional energy). Other symptoms include severe fatigue, orthostatic intolerance, pain, unrefreshing sleep, headaches, cognitive dysfunction, sensitivities to light, sound and smell, gastrointestinal symptoms muscle weakness, fatiguability and spasms.
The NICE guideline says this may mean:
Severe ME/CFS
People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.
Very severe ME/CFS
People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.
My M.E.
I got M.E. after having shingles at age 13. Since then I have bounced around the severities a bit but for most of that time I have been deteriorating. This is for a number of reasons mostly due to GET (Graded Exercise Therapy, a now banned 'treatment') and inappropriate treatment, plus almost instant deteriorations like colds, covid, vaccines and the accident I had. I started of housebound, then mild, housebound again and then moderate but since September 2020 I have been bed bound 24/7 fulfilling the criteria for Very Severe ME.
There’s not a bit of my life that hasn’t changed. It has taken so much. I can’t walk, I can’t spend time out of bed, when I rarely do it involves using a hoist to transfer. I miss being outside, spending the day with my family or friends. I miss playing sports and horse riding which were the main things I did. I miss school, although if I was healthy I would have finished that now. I miss feeling alive and getting to truly experience life.
ME has completely affected my daily life and routine. I am 100% dependant on carers for daily activities, to be able to wash (in bed), for food (which I eat in bed), to go to the toilet (also done in bed) and if I’m able to do any craft activities from bed I need help for that as well.
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