This post is for Severe ME Day 2023, 08/08. This day is in honour of Sophia Mirza, who lost her life to Severe ME due to medical abuse. Read more about Sophia at the Severe ME Day website.
Just like poverty and homelessness, the existence of Severe ME is a political choice.
25% of ME patients are housebound or bedbound. Some are so unwell they are unable to leave their beds, require 24 hr care, cannot tolerate light, sound or the presence of others. They may require tube feeding or other nutritional support to live.
It didn’t need to be this way. Decades of political and scientific choice, to critically underfund ME research and place it firmly in the domain of psychiatrists as a psychosomatic illness experienced by hysterical young women, have led to this outcome.
The dire influence of insurance companies & gvt welfare bodies meant genuine scientific research went unfunded, unstudied, and neglected. Just like those with severe ME.
On severe ME day I think of all my severely affected comrades. I will never stop campaigning for this disease to be recognised and its research fully funded.
Chronically Siobhan 