** TRIGGER WARNING – Upsetting Content **
A disease like chronic fatigue syndrome, also known as myalgic encephalomyelitis (CFS/ME), can fundamentally change a person's life.
By Carly Cassella, Science Alert
Extracts
Researchers at Iowa State University have now collected the memorial records of 505 people who died with CFS/ME [written ME/CFS in the UK] to paint a picture of what life is like for millions of patients worldwide.
The team's hope is to gain “a deeper understanding of the lived experiences and deaths of those with ME/CFS.”
In total, four major themes emerged from the words of family and friends, which were publicly available from the National Chronic Fatigue and Immune
Dysfunction Syndrome Foundation memorial page.
The themes were: systemic neglect and institutional failure, clinical neglect and failure, social disconnection, and personal burden.
Summary
In America, the memorial messages left by friends and family of people with ME/CFS were reviewed.
The article states: “They did not necessarily die from ME/CFS, but the ‘disease seemed to have a significant impact on their quality of life, whether it be through functional impairments, financial stress, or mental health‘.
The findings could be seen as relevant to the situation here in the UK as it is in other countries.
It continues: “For many years, CFS/ME was not accepted as a ‘biological' disease, as no markers of the disease could be found in the body… Today, we know better.
While there is still no clear and accepted diagnostic tool, there are unambiguous signs that CFS/ME is a biological disease, with real and measurable impacts on the brain and body.“