Severe ME Day 2022
Every year we take time on August 8th to remember everyone who is suffering from, or who has ever suffered from Severe and Very Severe Myalgic Encephalomyelitis.
This year we join with people around the world to highlight ‘brain fog’, a problem all people with ME can experience, but which is particularly disabling for those who are severely affected.
Brain fog – a type of cognitive impairment – manifests as impaired working memory and concentration accompanied by difficulty processing complex information. [ME pedia]
“Whatever you call it, I just feel stupid. Why can’t I remember how to brush my teeth? Why can’t I explain to my carers how I feel? Why have I forgotten what you have said, 2 minutes after you speak? In the fog I just have to hold on to hope, as I wait for more lucid moments.” (Mary)
Severe ME – key points
- Around 25% of people with ME are almost completely housebound or bedbound.
- What is severe ME?
- Severe ME Awareness Day was started by 25% Group in 2013
- 8th August is Sophia Mirza‘s birthdate, an English woman who died of ME age 32
- Severe ME can lead to early death
- Being housebound and severely ill has led to many reporting experiencing abuse or neglect
- Severe ME Support & activity groups: 25% Group; Hummingbirds Foundation; Severe ME Art Project; Pillow writers
- ME care resources
- Understanding and coping with brain fog: Very well health; CFS self help