Introducing: Getting to Know ME – a podcast series

The Silent Elephant Project (SEP) is an accredited project investigating long term and often marginalised health conditions while also raising awareness.

They started the Silent Elephant Project Podcast in January 2021, with many people listening to the series already.

Their brand new podcast series ‘Getting to Know ME’ explores what it’s like living with the life-limiting condition ME (Myalgic Encephalomyelitis).

Freshrb use their media production to give a voice to marginalised health conditions. SEP aims to not only connect sufferers across the UK but empower them too.

Getting to Know ME – a podcast series

Getting to Know ME is free to listen to on Spotify.  Click the play button above to listen to Tony as he shares the importance of living, not existing, with M.E and how being part of a support group allows you to meet others in a similar situation. 

In the series they reflect on the impact of living with the chronic health condition, share from those with lived experiences and hear from specialists on their experiences treating this condition.

However, this is not the first time they’ve given a platform to ME. In 2019 SEP created the short film ‘Why ME?’. The film followed high achiever Kyle who loves playing basketball and wants to impress a school scout. But will his health allow it?

Why ME? (2019)

Kondwani, Director of Freshrb, feels that for too many years no-one with ME was taken seriously.

Kondwani was diagnosed with ME over 9 years ago whilst he was a student at The University of Leeds. He remembers when he got his diagnosis.

“I remember when doctors told me that there is no cure for ME/CFS, and that some people get better and others don’t. This was interesting for me as I never knew there can be such health conditions. The literature out there was already confusing and evident that very little was known about ME.

It’s a nightmare experiencing ME symptoms. You can no longer do the things you were able  to do. Your life comes to a halt. My studies were cut short and eventually (I) moved back to Sheffield to be with my family.

Kondwani, Director of Freshrb

Presented with the new reality of living with such a life-limiting long term health condition, I had to find a way of coping with ME/CFS. I had to start my new future. A future with the possibility of no cure. A future living with ME/CFS and being happy. A future where I am living a fulfilled life.

For me, doing something creative so that I don’t focus on the ME symptoms helped my mental health. Learning about pacing also helped me manage myself better. This gave me so much hope especially after noticing improvements in my health.”

However, he is hopeful that the new research into Long COVID will offer more hope for ME sufferers like him.

“Unfortunately there has been poor funding dedicated towards research which has limited progress for treatments. This coupled with lack of knowledge from medical doctors has led to lack of awareness and understanding of people living with ME/CFS. 

Hopefully the recent funding towards Long Covid will help gain more knowledge about ME because the two illnesses are similar.”

‘The elephant in the room’…

The Manchester-based media production company chose to entitle their ongoing podcast series the Silent Elephant Project.

Babz, Founder and CEO of Freshrb, was diagnosed with Cancer. Health awareness and equality is hugely important to him.

Founded in 2017, SEP investigates the connection between being creative and living with a health condition, believing that this helps encourage mental health wellness while battling debilitating health conditions. There are a number of case studies to prove this theory, however while research is ongoing this cannot be classed as fact.

The idea of the SEP came from the fact that both the Founder/CEO (Babz) and Director (Kondwani) of Freshrb have first-hand lived experiences of this positive connection between being creative and living with/recovering from life limiting health conditions.

SEP’s mission is bridging research with engagement, teaching media skills and reducing loneliness in the lives of selected commuinity groups.

​The team very much believe that showcasing creative projects will act as a stimulant to further conversations and community dialogue.

You can learn more about SEP’s work by visiting their website and social media platforms.

Kondwani has asked for more people with ME to get in touch, he said:

“We are always looking for partnerships and thinking of creative ways to continue raising awareness.

Our previous work saw us co-produce a short film with secondary school students titled ‘Why ME?’ which you can watch on our YouTube channel – Silent Elephant Project.

This year we have launched the podcast series. So (we are) looking forward to the ME Community taking part in sharing their stories and helping raise awareness.”

You can keep up with Freshrb’s work via their social media (below) and listen to their work on Spotify.

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