Impact of myalgic encephalomyelitis on treatment of comorbidities: A lived experience, 2020, Lopez-Majano

[Andy]

Myalgic Encephalomyelitis (ME) is a complex, chronic, disabling, multi-system disease with no FDA-approved treatments. ME greatly impacts quality of life (QoL) with studies showing that people with ME often have worse quality of life than people with sickle cell anemia and cystic fibrosis, among other chronic diseases. People with ME frequently have comorbidities, which, if treated, could improve quality of life. However, the pervasive impact of ME makes treatment of comorbidities difficult. When trying to treat comorbidities it is therefore important for rehabilitation specialists to understand the impact of ME on day-to-day life in order to avoid treatment-related harms or exacerbation of ME symptoms. This article details the lived experience of one family in which both siblings have ME and comorbidities.

Paywall, https://content.iospress.com/articles/work/wor203175
Sci hub, https://sci-hub.tw/10.3233/WOR-203175

 

[wigglethemouse]

So sad. Both sons came down with ME a year apart at ages 12 and 15. Both severe. The paper written by the mum describes how it has impacted them.

I hate this disease with a vengeance.

 

[Perrier]

So sad. Both sons came down with ME a year apart at ages 12 and 15. Both severe. The paper written by the mum describes how it has impacted them.

I hate this disease with a vengeance.

I hate this disease with a vengeance also. Why can't they sort out what is causing the exertion intolerance: that is the key symptom. What is causing this exertion intolerance?? This is a cruel illness, which operates like an abuser; it destroys the lives of the young and talented.

 

[Dolphin]

This is now open access

 

[RedFox]

Yikes, I shower about 2-3x a week as well yet I have considerably better physical abilities. I have an odd mix of impairments.