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Genetics Unzipped podcast: Why me? Searching for genetic susceptibility to chronic fatigue syndrome and pain

In the latest episode of Genetics Unzipped, supported by the Institute of Genetics and Cancer at the University of Edinburgh, presenter Dr Kat Arney discovers how researchers are using genetics to understand more about what’s going on in long-term debilitating conditions including myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and chronic pain, working hand-in-hand with patients to help to figure out who might be at risk and pointing towards new ideas for treatment.

Decoding the genomics of ME/CFS

ME/CFS is a multi-faceted, fluctuating condition that’s often characterised by extreme tiredness, although there can be other unpleasant symptoms like joint and muscle pain, headaches, problems sleeping, eye pain, problems with concentration or ‘brain fog’ and more.

Professor Chris Ponting at the MRC Human Genetics Unit (HGU) within the Institute of Genetics and Cancer at the University of Edinburgh is leading a major new study called DecodeME, together with patient representative Andy Devereux-Cooke, aiming to discover genomic variations that may explain susceptibility to ME/CFS and open doors to new therapies.

DecodeME is unusual in the degree of patient involvement in the study, with patients having a say at every level of the project. So does this mark a new dawn in the way that research into these kinds of chronic health conditions are done?

“We would need to see more evidence of studies like DecodeME, which has such a high level of patient and public involvement for us to know whether the circumstances have changed,” Andy says.  I certainly hope they have…The lack of involvement of patients who, through lived experience, are the experts. It’s shocking that it didn’t happen because we ended up with studies that didn’t benefit the patients.”

Using genomics to gain insights into chronic pain

Kat also speaks with Professor Blair Smith from the University of Dundee and Professor Caroline Hayward from the MRC HGU who are sifting through the genomes of thousands of people enrolled in large cohort studies like Generation Scotland, in search of insights into chronic pain.

This is a big challenge because, as Blair explains, pain is different for everyone.

“I, as a doctor, can’t tell you what your pain is like, but pain can arise from some definite physical insults, such as an injury or surgery, or very often we can’t find an underlying cause or sometimes there’s tissue damage that is ongoing causing the pain,” he says.

“Very often, it’s associated with psychological factors or social factors such as your circumstances in which you’re living or recent or ongoing distress, which can either cause, or certainly compound the pain and the combination of physical, psychological, social, spiritual factors are all important in creating the impact of the pain on the individual.”

Listen to the Genetics Unzipped podcast

Listen to the whole episode and find show notes and a full transcript at

Genetics Unzipped is the podcast from the UK Genetics Society, presented by award-winning science communicator Dr Kat Arney and produced by First Create the Media.  Follow Genetics Unzipped on Twitter @geneticsunzip, and the Genetics Society at @GenSocUK

Find Genetics Unzipped on Apple Podcasts (iTunes) Google Play, Spotify, or wherever you get your podcasts.

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Genetics Unzipped / Pain / Podcast