29th October is the annual date for this new awareness day for Severe M.E.
25% of people living with Myalgic Encephalomyelitis are severely affected. Those living with Severe M.E. are either bedbound and/or mostly or completely housebound. They have specific care needs due to the illness being exacerbated by factors such as movement, noise and light. Paralysis, black-outs, coma-like states, tremors, cardiac dysfunction, inability to chew or swallow, and stroke-like episodes are just a few ‘symptoms’ of Severe M.E.
- There are no effective treatments or a cure for M.E.
- There is no NHS protocol/policy for Severe M.E (We are working on it!)
Why BED?
For someone with severe M.E., BED is their whole world because they often need to spend most, if not all, of their time lying down. M.E. causes Post-Exertional Malaise (or Post-Exertional Neuro-Exhaustion), pain, and sensitivity to light and sound amongst many other symptoms, making it very difficult to do everyday activities. BED is often their main place for rest, comfort, and even basic activities like eating, bathing, and ‘socialising’ online or with friends and family (if stimulation tolerated). BED can become a sanctuary. Essentially, BED becomes more than just a piece of furniture—it’s a vital part of their daily life and health management.
There are 6 components to BED for severe M.E, get involved!