Severe ME Day – 8th of August 2019

A day to remember everyone who is suffering or who has ever suffered from severe and very severe Myalgic Encephalomyelitis.

The 25% Group offers support for severe ME.

They have published a 2 page info sheet: How can I help someone with severe ME?

Excerpts:

Even severe illness may not be instantly apparent – for example your friend/relative may be able to walk to the toilet, yet be too ill to go out in a wheelchair, watch TV or even sit up in bed for more than a few minutes.

They may spend most of their energy on something as basic as eating. They may look remarkably well for half an hour or an hour, but then spend the rest of the day in pain in a darkened room.

Flare up of symptoms after activity or stimuli is a key feature of the illness. The activity may be tiny by healthy standards and stimuli things you probably don’t even notice (such as light, movement, or background noise).

Here are a few ways to help: shut doors (to reduce noise), use headphones if watching TV nearby, be aware that talking uses energy – ask your friend/relative how long the conversation needs to be and try to stick to that. If they seem particularly energetic, ironically this may be a sign that they are doing too much (and running on adrenaline!) – ask if they need a rest.

Stonebird: the lived experience of severe ME – a website with information and help for and about people with severe ME, such as Severe ME: notes for carers