The BBC radio 4 Today program interviewed Professor Chris Ponting about the new DecodeME research being conducted at Edinburgh University.
The interview can be heard on the BBC website starting 48 minutes in.
The transcript in shown below.
Transcript
Radio Presenter
It's now 12 minutes to 7. If you are one of the 250,000 people in the UK who have ME or chronic fatigue syndrome, you could play a role in a new genetic study of the condition. Professor Chris Ponting from the MRC Human Genetics unit at the University of Edinburgh is one of those leading it.
Good morning professor Ponting
Professor Chris Ponting
Good morning
Radio Presenter
What are you trying to find out?
Professor Ponting
We're finding out what is different between the DNA of people with ME and others. We’re also catching a load of data from many people as many as possible tens of thousands of people from up and down the United Kingdom who have ME and so we can record how severe their illness is and how devastating the illnesses to them and those around them.
Radio Presenter
So, if someone listening has ME and would like to take part how would they do it?
Professor Chris Ponting
I'll be delighted for them to come on to decodeme.org.uk and answer a questionnaire we've designed it with people with ME, so it should be relatively straight forward you can go on and off the survey and take several days over it if you wish, because many people have a lot of difficulty doing such things.
Radio Presenter
Because of the condition?
Professor Chris Ponting
Because of the condition, a quarter of people with ME are housebound or bedbound they are invisible in our society and so we took special efforts to ensure that as many people as possible with many different difficulties in their lives could participate.
Radio Presenter
So, it is a condition is very easy to dismiss isn't it or just failed to give due recognition to
Professor Chris Ponting
People have been invisible to the health system, to many around them because of obviously being at being at home but not so much anymore. We need to acknowledge across all of our parts of our society that they have been suffering for decades. I think light has been shared on them because of Long Covid, 2 million people in the UK and money is going towards Long Covid, not enough. Now greater attention is being paid to ME, which is welcome.
Radio Presenter
Could Long Covid and ME be the same thing?
Professor Ponting
They could be. Obviously Long Covid has been triggered by a virus and many people with ME in the past have had ME triggered by viral or bacterial infections. It could very well be quite similar and that's exactly one of the questions that we wish to answer in this study.
Radio Presenter
Okay, and so is yours a long-term study, is it going to take years for you to do the work on DNA that you need to and if you do discover there's a difference in the DNA what will that lead to?
Professor Chris Ponting
Because there is no effective treatment, what we're trying to do is to accelerate the research towards an effective treatment, towards effective therapy drugs and repurposing of existing drugs if that turns out to be appropriate. And once we find out what is wrong because we don't know what is wrong with people with ME, if it's in the nervous system or the immune system we will invite people with expertise in those areas to come along and focus their work in this area so that acceleration can occur.
Radio Presenter
But is it a growing problem that because of Covid that we have increasing numbers of people being diagnosed with it?
Professor Chris Ponting
Absolutely is a problem for every individual who has been diagnosed with ME, but that recognition brings with it a responsibility from us to do the research that is right for them, for their future and to try and find a cause within the years to come.
Radio Presenter
And the time frame? Is yours going to be a very long study do you think as it's clearly of immense importance to you know as you said 250,000 people who have this condition?
Professor Chris Ponting
Well, the sooner that we reach our target and we need tens of thousands of people. We've had a good start but we need many more. The sooner we reached that target the sooner will be able to report on the genetic studies and the more that we have the greater the power of the study.
Radio Presenter
Decodeme.org.uk that see that was the website, wasn't it that you gave us?
Professor Chris Ponting
Please sign up.
Radio Presenter
Thank you very much, professor Chris Ponting from the University of Edinburgh.