Severe ME is so Much More Than Being Bedbound

Severe ME is a whole spectrum of qualities of life not adequately captured by modern functional scales. 

So often we hear severe ME described as being housebound and mostly bedbound. But that only scapes the surface. Here is just a brief list of things people with severe ME may or may not be able to do: 

• Use a toilet

• Use a commode

• Position their own bedpan

• Be transferred in a wheelchair (for example to a daybed)

• Stand

• Sit up

• Rollover

• Move

• See sunlight

• Hear voices

• Speak with a loved one

• Eat food independently

• Swallow food

• Digest without pain

• Drink liquids

• Use a laptop

• Speak on the phone

• View a phone or tablet

• View a television

• Draw / knit / or craft

• Speak

• Communicate with gestures

• Communicate with text messages

• Wash hair

• Bathe

• Be bathed

• Touch a loved one

• Sit with a loved one

All of these are variables beyond simply being or not being bedbound. All of these have drastic impacts on quality of life. These are all things that despite being bedbound I am able to do most of the time and I am constantly grateful for them. These are all reasons why I must pace and protect myself from infection so that I do not lose these vital parts of my life. 

When we simplify severe ME and very severe ME to being bedbound we fail to understand the extreme suffering of the very severe patients. We fail to understand the danger posed by #PEM to severe patients. Severe ME and very severe ME patients are some of the most disabled people on the planet. We must comprehend that disability, measure it, see it, and understand it if we are to address it and fix it. 

Please help fund hope for the most severe and all patients with myalgic encephalomyelitis by donating to the Open Medicine Foundation.