This is a transcript of the LBC phone-in show hosted by Natasha Devon, discussing the results of the DecodeME genetic study on Myalgic Encephalomyelitis (ME).
**Natasha Devon:** But first, the largest study of its kind has found that there is a genetic element to ME. Scientists have responded by saying this will put me on an equal footing with other debilitating diseases and also open up other potential treatment options. I want to know if you have been told that your ME isn't real, that it's in your head, and if so, what you make of these findings.
If you are a regular listener to this show, you'll know that we've hosted a number of phone-ins in the past about ME and it's something that I keep an eye on. One of my heroes, George Monbiot, writes about it a lot, about how that there is what he describes as a scandal behind the way that people with ME have been gaslit about their condition, told that it's all in their minds, told that it can be solved with exercise, none of which is scientifically robust.
And this week, the results of the world's largest study into ME were published. It was conducted by the University of Edinburgh and involved testing 27,000 people with a diagnosis of ME and 250,000 people who did not. And what it found was that there were eight regions of genomes substantially different in those who have ME and those who do not. So what that means is that there is a genetic causation. There is a genetic link to ME and that's really significant.
Sonia Chowdhury, who's the chief executive of Action for ME, says people have been disbelieved even by doctors and told that the condition is not real. And scientists have responded to these findings by saying it's going to put ME on an equal footing with other debilitating diseases and also open up other potential treatment options. So this is huge. An investigator for the study, DecodeME, described it as a moment of change for the population and a wakeup call.
I thought I would take the opportunity to ask you this hour what this means to you. If you are somebody with a diagnosis of ME or perhaps a diagnosis of Long COVID, which are not exactly the same but there are similarities, and you feel that you have been gaslit or you have had people in your life that have told you that your condition doesn't exist. We have a study now that shows that it absolutely does. It's measurable. It's tangible. How does that feel for you?
We're joined now by Sarah Boothby who's a campaigner on ME and chronic fatigue. Thank you so much for joining us this evening. Sarah, first of all, would you mind telling us how you came to be a campaigner on this issue?
**Sarah Boothby:** That's a great question, Natasha, because I honestly did not think of myself as a campaigner. It's kind of I've been pushed into it because I'm not somebody who, firstly injustice has always motivated me to act anyway. And secondly, having seen what I've seen so close and so personal, I can't just ignore it now. You know, my daughter died from medical neglect of ME and I'm a qualified social worker, so I know that the laws in our country are designed to protect patients like Maeve.
With ME, it does not work. It does not work. For me, that is a perfect example of what injustice looks like. Here we are a free speech country and we create all of these laws. We vote for people who create these laws for us and then suddenly if you've got a diagnosis of ME or chronic fatigue syndrome, they don't work for you. I want an explanation, please. So that's how I became a campaigner.
**Natasha Devon:** When you say that that the system is just not fit for purpose and it doesn't acknowledge people with a diagnosis of ME or chronic fatigue syndrome, what do you mean by that? What is not there that should be there to support them?
**Sarah Boothby:** I think the root of this is that ME is not chronic fatigue syndrome. It never was. And to confuse the two is a disservice to both sets of patients. Chronic fatigue syndrome is a term that was invented by psychiatry to give itself a kind of legitimacy that it doesn't have now. ME was a condition already in existence. It's only because patients speak up for themselves that there's any kind of recognition because there's never been research done into it as a biomedical condition, which is why it's an exciting time.
But it's a pre-print, so I'm expecting the people who have to defend themselves with chronic fatigue syndrome will be pushing back on this. That's not such a bad thing. It's how good science works and it's how good laws are made. But when people are dying and those people take no responsibility for those deaths and pretend they're not actually happening, and the entire British medical establishment is implicated in this, then there's something really rotten at the heart of it.
**Natasha Devon:** When you say that ME and chronic fatigue syndrome are not the same thing, can you clarify that a bit? Are we saying that they are distinct conditions, one of which is psychological and the other one is neurological?
**Sarah Boothby:** No. And it's difficult to define because there is no biomarker for either condition. But I worked for a long time in specialist mental health services and I saw a lot of people who had severe and enduring mental health conditions. Many of them had CFS in the long list of diagnoses. Those patients deserve as much of a service as anybody else.
The defining characteristic of ME is something called post-exertional malaise.
**Natasha Devon:** I would say that it would be taking a really long time to recover after doing exercise or exerting yourself.
**Sarah Boothby:** Okay. And when you think of exertion, what would you include in that?
**Natasha Devon:** I would say maybe going to the gym or going for a run.
**Sarah Boothby:** Fantastic. People with ME, if they do that, which is what everybody knows is good to keep you healthy, they will make themselves more unwell. And nobody knows but them what that's actually like. There's something like 200 different symptoms in ME. From the point of view of the GP, you've got this person coming in saying, "Every time I go to the gym, I feel X, Y, or Zed." And the GP is going, "I keep seeing this person... they look perfectly okay to me." Maybe they've got hypochondria. There's no biomarker. There's no test.
Until we get the biomarker that demonstrates PEM is real... and in the early stages of ME when it's mild, there can be quite a long delay between the activity and the symptom onset. With Maeve, my own daughter, she had a mild infection at 12. By 13, she was writing in her diary about feeling tired all the time. By 26, she was unable to move a muscle. Everything had to be done for her. She couldn't sit up, she couldn't chew. I was caring for her completely single-handed 24 hours a day, even when she was in hospital because the nurses did not have the time to feed her. The doctors didn't know what was wrong. For them, the risk of tube feeding her was higher than the risk of allowing her to starve to death, which is absolutely staggering.
**Natasha Devon:** This text has come in from Daisy on 84850 who said, "I grew up with a mom with ME and I was diagnosed two years ago and I can tell you that ME patients have known this for years. It's so validating to have science-backed evidence at last and I'm so grateful to DecodeME. Unfortunately, I'm sure the stigma will be around for a while yet."
Let's go to the calls. Fran has called from Sheffield.
**Fran:** Hi, I'm just calling as a person with severe ME, as someone who actually can call. I was very severe for a year so I was unable to talk, stand, move at all and I've improved a little bit. So I guess I'm calling on behalf of everyone who can't do that.
**Natasha Devon:** What is it that you wish that people knew or you feel that is misunderstood?
**Fran:** So much is misunderstood about this disease. Very much the fact that it is a completely biological, pathophysiological illness. It isn't psychosomatic in any way. The harder you try, the worse you get, which feels so different to any other disease. And your mindset won't cure you. You can't think your way out of it.
**Natasha Devon:** I wonder how have your friends and family dealt with your diagnosis?
**Fran:** Overall I've been pretty lucky but I have still had people close to me who've often gone down internet rabbit holes, you know, suggest, "Oh, you know, it is a mind-body disease. You can do this course that's going to fix you by retraining your brain," which is just not going to fix a biological illness. I even had people saying that to me when I was flat in bed, couldn't sit up, could barely roll over, couldn't even open my eyes for months on end. Saying to that person, "You can just think your way out of it," seems ludicrous.
**Natasha Devon:** Thank you so much for your call. Cherylyn has called from Red Hill.
**Cherylyn:** Hello. I've had this since I was 17, although it wasn't diagnosed till my 30s when I suffered a complete collapse and ended up in a wheelchair. Going through the medical services has been absolutely galling, really frustrating, lots and lots of gaslighting. I'm in my 50s now. I've missed a lot of life. Everything I've done has ended with a collapse, a sort of burnout. And it seems that the only things that are on offer in the specialist ME clinics are pacing and cognitive behavioral therapy, and that's treating it as if it's a mental condition.
**Natasha Devon:** This anonymous text on 84850 says, "I took part in this research and would love to call in, but I keep my ME a secret. The main reason for this... is there's no test for it. This obviously leaves it open to doubt and judgment from those who think if you look okay then you are okay. These findings give me hope. Firstly that a test can be developed to prove the illness but mostly the hope that one day a treatment can be found."
Sue has called from Devon.
**Sue:** This is like really, really important because I'm heading towards 60 and I've had quite a lifetime of this. It started with feeling tired all the time. I was told, "Do more." So I kept doing more. I became really ill. I was running marathons, surfing, cycling long distance. I ran my own business, was a health care professional, bringing up a family, attending university, all at the same time because I was told, "Just keep doing more." Eventually, I became so ill. My GP said to me, "It's behavior. You choose to behave like this. You're lazy and you have depression." I became so ill, I was sleeping 24/7.
**Natasha Devon:** Rowan has called from the Isle of Man.
**Rowan:** Yeah. Hi. I've got something called chronic Lyme disease. I got a tick in Richmond Park in 2010. I do get ME and before that, I was a disbeliever. I now know from my experience that I think viral or bacterial infections can affect your whole body. And until you have ME, you just can't believe the effect it has on you. You just crash and it's quite profound.
**Natasha Devon:** Chloe has called from Bradford.
**Chloe:** Hi Natasha. I think there is a little bit of excitement for me personally where you do feel finally there's some recognition and you do feel that obviously you're justified in explaining to people there's something wrong. My big fear is it's a big load of nothing and it will end up without the funding it needs, without the research it needs, without the support being piled into it to make sure that we can use that information to find treatments, to find cures. It is a good moment, but it can't stop here.
**Natasha Devon:** Thank you so much for your call and that's a really good point to make that this needs to be the starting point for further action. A text from Trudy says, "I've been diagnosed with long COVID and ME. I've been treated like I'm a liar and making it up as I don't look ill but constantly struggle every day. This new diagnosis is such great news and a relief." Another text says, "I have severe ME, but set an alarm to wake me up at 2 a.m. so I could listen to this segment live from Western Australia. I wanted to emphasize that DecodeME is bringing much-needed hope to ME sufferers, not just in the UK, but worldwide." Thank you so much for all of your contributions. As I say, we will return to this topic.