World ME Day 2023

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode, I’m chatting about World ME Day.

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Ok, let’s jump straight in! 

World ME Day takes place each year on 12th May. This year, the focus is around the fact that pushing harder with this condition, can make you sicker. The technical name for this feeling is sometimes shorted to PEM which stands for post-exertional malaise. 

Post-exertional malaise is something that everyone with ME experiences but what is it?

After any physical, emotional, or mental exertion, symptoms get worse. Prior to having ME/CFS or Long Covid, physical, mental or emotional exertion wouldn’t have been an issue, but PEM is a main symptom of ME. 

For me, too much noise, too many bright lights or strange and strong smells, could be enough to exhaust me when I was at my worst. And I would feel the impact about 2 days later. Initially it was hard to tell why I felt so bad especially when I hadn’t done anything that day or the day before, but I was, with the help of my family, able to spot the pattern. That then helped with planning things in future, and I knew what to expect when I chose to do more.

All of my symptoms, however, would worsen. Things would feel more intense. Lights would feel brighter, noise louder, smells would seem stronger, and my taste buds would change. 

This could last for days or weeks and would lead to a crash. Now, knowing this and having explained this to various doctors, you’d think that they would take it on board and realise that I was the expert in my own illness and how it impacted me. 

I like this quote from World ME Alliance co-chair and Solve M.E. CEO, Oved Amitay. It’s a reasonably long one but I want to cover it all.  It says, “Post-exertional malaise is a devastating symptom of both ME and Long Covid that is far too often disregarded or incorrectly managed by health care providers. PEM is a varying symptom that is challenging to recognise, and doing so requires intense listening to the person experiencing it. It is vital for health care professionals to identify PEM, as its presence changes the management advice a patient should be given and indicates that a diagnosis of ME should be considered. To avoid prolonging and intensifying the suffering of millions, providers must listen to and believe those who experience PEM.”

I can tell you from my own experience that wasn’t the case, and even the supposed expert doctor, would have me trying new things to see if it would help. It was like talking to a brick wall when trying to explain that pushing myself didn’t help me, it made me worse.

For people with ME, post-exertional malaise is a reality that can severely impact their daily life as well as the quality of that life.

It’s estimated that about half of people with long Covid are experiencing PEM and that means that millions more people are having to deal with and live with this very debilitating symptom. 

Before the COVID-19 pandemic, there were between 17 and 30 million people living with M.E. worldwide. But now there are about 65 million people living with long COVID, and half of those individuals are experiencing post-exertional malaise. This means the number of people living with M.E. has likely do