Decode ME

Independent: DecodeME: Major study hopes to tackle ME stigma

The DecodeME Research Study
You have until the 15th of November 2023 to sign-up and complete the online questionnaire!
For more information please visit the DecodeME website.

By Storm Newton, The Independent

Article Extracts

Researchers behind the world’s largest study of chronic fatigue syndrome, also known as ME, are hoping to tackle the “stigma” associated with the disease as well as working towards potential treatment. It comes as the team behind DecodeME urged more people living with myalgic encephalomyelitis (ME) to sign up as a participant before the November deadline.

DecodeME is aiming to find a genetic cause of the condition which is estimated to affect 250,000 people in the UK. Prof Chris Ponting, from the University of Edinburgh, is leading DecodeME. He describes it as a “disease for which we know almost nothing”.

We don’t know what causes it, we don’t know how to properly diagnose it, we don’t know how to manage its symptoms well, and we certainly don’t know how to cure it. This study is foundational. It’s not going to quickly lead to a drug or an effective therapy, it’s trying to find out what is going wrong in so many people with ME.
Professor Chris Ponting

DecodeME is hoping to test 20,000 individual DNA samples from people living with ME, with the deadline to register on November 15. Those who wish to participate must be over 16 and live in the UK.

Prof Ponting said stigma is a “huge issue” in the ME community.

He added:

The stigma of this disease means that there are many people who do not report having the disease, do not go and try and be diagnosed. Yet they kind of know that they’ve got the disease. They hide the fact that they do have a diagnosis from their colleagues, from their friends, from their family. What other disease is there that has such a stigma attached to it?
Professor Chris Ponting

Sonya Chowdhury, chief executive of Action for ME, said DecodeME “urgently” needs more people with the condition to sign up, “particularly those who are men and from other ethnic backgrounds. The majority of people that we’ve had so far have been women. So while we are very keen for more women to join us, obviously we’re keen that those that are currently underrepresented to come forward.

Prof Ponting said DecodeME has already had a “fantastic response” from those impacted by the disease, but thousands more samples are still needed. “With a the larger number of people comes the greater power of the study to find out what’s going on,” he said.

“We are told by participants how it is already transforming their lives that we’re working on their disease. They know that this may not help them, but it may yet help people in the future who have not yet got any symptoms.”
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