Article: ME & Long COVID; When Will Our Exhausted Cries Be Heard?, Revd Joe Haward, 24 March 2021

[Sly Saint]

Reverend Joe Haward shares his experiences of having ME and explores the challenges patients face in getting the reality of their lives with the disease heard by professionals and those in positions of power.

Last January, after further tests and appointments with a rheumatologist, I was diagnosed with Myalgic Encephalomyelitis (ME) – one of an estimated 260,000 people to have this condition in the UK.

My GP told me to do a little exercise every day, book myself in for Cognitive Behavioural Therapy (CBT), and gave me a leaflet and some painkillers. In March, I collapsed. Over the next three months, I struggled with any and every activity. The physical toll of ME was debilitating. Then, in July, I turned a corner and found myself able to return to a fairly normal way of life.

This year, in January, I collapsed again. I was on the bathroom floor for five hours unable to move, walk, and barely talk. Since that day, I have hardly left my bed; my body in a state of exhaustion and pain. For me, every activity comes with a cost. I’m 39 years old.

For decades, people suffering with ME have been dismissed and ridiculed, with the disease falsely labelled as ‘psychogenic’. Unable to be given a definitive organic diagnosis, too many patients have been told that it is merely psychosomatic.

https://bylinetimes.com/2021/03/24/me-and-long-covid-when-will-our-exhausted-cries-be-heard/