Andy Devereux-Cooke: Putting patients at the heart of research

Andy Devereux-Cooke: Image courtesy of Andy Devereux-Cooke

"Click here to listen to the full podcast episode"

One of the most important parts of the DecodeME study is that people living with ME/CFS are involved in every aspect of it, and Andy Devereux-Cooke is one of them. He’s one of three people on the study management team, effectively playing as much of a leading role in the project as Chris, along with other patient and public involvement activities, or PPI as it’s known. 

Andy’s been living with ME/CFS for about forty years, most likely since he had the measles aged 9 and was never the same again. He’s gone through better and worse patches along the way, and his condition has understandably had a big impact on his life and work.   I wanted to know why he decided to get involved in DecodeME, and why it’s so important that patient voices are heard. 

Andy: We do not know anywhere near enough about these conditions in order to adequately treat it. So we're only route forward is research into what exactly is happening. And therefore the opportunity to take part in DecodeME was a fantastic opportunity to actually play a part in increasing our knowledge base of ME/CFS. So like I said, to play a part in that was a fabulous opportunity. Within my circumstances I count myself lucky that I am able to, because so many ME/CFS patients, for one reason or another couldn't possibly do it, whether that be because their condition is so serious that they are even talking to you, like this would be far beyond them, or they are just struggling to live their life, to earn enough money and each working day they kind of just about make it home. That was me for quite a long while. So I certainly wish that my circumstances were different, but given that they're not, I count myself lucky to be involved.

Kat: And the Involvement of the patient community in this kind of research, what's the general feeling there about the importance of being involved in this. I know that in the past, there has been a sense with some patient groups that you're doing experiments on us, not with us. Does that feel like that has changed?

Andy: 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. I certainly hope they have. And I think your description of how it's been in the past, it is accurate. 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.

Kat: What has that involvement looked like? You're meeting with a scientist, do you get to see what they do? Tell them what to do?

Andy: We're involved in every step. For myself, I'm on the management team

Kat: It's a long way from just having a patient like, oh, can you just look at our patient info? And yeah, we've done it. We've done the engagement that's fine.

Andy: Absolutely. Yeah. And particularly now, in my experience of the level of engagement in DecodeME, it does come across as shocking to me that that previously was considered a high level of patient involvement. I've kind of said elsewhere that, um, I'm very grateful to professor Ponting for basically his generosity in, and his trust in, us PPI members in basically allowing us to be part of the project in the way that we are, you know, it could be easy for it to be just a showpiece where it's the three of us in the management team by name, but not actually in action, but it very much is the case that any decisions that come to us on the management team, it's a joint decision. And similarly on all the delivery teams, it's the input of the patients, the PPI members is taken very seriously.

Kat: Overall it does feel broadly like things are starting to head in the right direction after, as you say, 40 years of really being in the dark.

Andy: Yeah, we need much more DecodeME is a step in the right direction and we are seeing further steps forward, but we do seem to have a marathon to run yet. Not that ME/CFS patients can run marathons, but in terms of understanding ME, understanding the impact, the horrendous impact that it can have on patients, we have a long, long way to go. But hopefully perhaps if I can use an analogy, we have made our way up to the top of the hill and we can start looking downhill towards our destination, rather than having only gone up short rise, and then seeing the mountain peak in the distance, hopefully we're on a downward path rather than not at least in terms of the path being easier.

Kat: Andy Devereux-Cooke there.