World ME Day 2023

Believe in ME with Rhona Barton

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.

You can head to www.rhonabarton.co.uk/media for more information about me and my story.

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you’re listening now.

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 doubled over the past three years. Unfortunately, there is still no diagnostic test, cure or universally effective treatments for ME and that means that people could be living with this for life.

So what can you do to help bring this condition and PEM to the forefront of people’s minds?

If you are able, please do share your experience of post-exertional malaise so that others, the public and professionals alike, can learn from you.

Please use the hashtag #LearnFromME when sharing.

Signpost your GP, physiotherapist, therapist or other health professional to Action for ME’s recently updated CPD learning module and podcast series as part of their Learn about ME project.

Use the World ME Alliance’s online templates and resources to create your own poster and social media content and/or pitch your story to your local newspaper or radio station.

If you are over the age of 16 and you are based in the UK, you can take part from home in the DecodeME study. This study hopes to reveal the tiny differences in a person’s DNA that can increase their risk of developing ME/CFS and building a greater understanding of the underlying mechanism of the condition.

Please do like, share and subscribe to this podcast and pass it on to your friends, family and healthcare professionals. Let’s help spread education and information and help others #LearnFromME.

Let me give you some links for these sites – I’ll also link to them in the show notes below this episode.

Ok, first of all, I mentioned Action for ME and you’ll find their website and information about the CPD module at www.actionforme.org.uk

Next up is the World ME Alliance and they can be found at www.worldmealliance.org

You will find more information about the DecodeME study, including the initial questionnaire to see if you meet the required criteria by going to www.decodeme.org.uk

And you can find more information about me and my ME story on my website at www.rhonabarton.co.uk

That’s it for today everybody.

I’d love to hear your thoughts on this and find out what you’re up to, if your able, for World ME Day so feel free to reach out via any of my social media links or my website. You’ll find me on Facebook & Instagram as @RhonaBartonCoaching and on Twitter as @RhonaBCoaching.

I’m a proud founding member of the Emmeline podcast network and you can find out more about the Emmeline network by going to www.emmelinenetwork.com

Thank you for listening. Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts.

I hope today’s a good day for you. Bye for now.

Don’t forget that you can review, share & follow the podcast via Apple Podcasts, Spotify or wherever you get your podcasts.

You can also sign-up for my mailing list by visiting www.rhonabarton.co.uk or join my Facebook group – Believe in ME Community by following the Facebook page (@rhonabartoncoaching).