Presenters Aasmah Mir and Stig Abell interview Jennie Jacques (an actress who starred in Vikings) who has had ME/CFS since late 2018/early 2019, and talk to Professor Chris Ponting about the DNA study Decode ME which has officially launched today.
Transcript
Presenter Stig Abell
It is now 8 43. A DNA study is being launched this morning, which researchers hope will help them understand more about ME or Myalgic Encephalomyelitis. The study named Decode ME hopes to reveal the tiny differences in a person's DNA that can increase their risk of developing ME. So let's talk to two people involved in the project.
Jennie Jacques is an actor who's been living with the syndrome for the past four years. And in a moment, we'll speak to professor Chris Ponting who's leading the study itself, let's say good morning first to Jenny. Good morning, Jenny.
Actress Jennie Jacques
Good morning.
Presenter Stig Abell
ME is one of those illnesses that if you're lucky enough not to have any connection to it in your family or, or yourself.
It's a bit vague in your mind what ME is and, and what it means. Tell us about your symptoms. How, what, how have you experienced ME?
Actress Jennie Jacques
Yeah, I, I agree with you. It is vague. And had I not had the personal experience with the illness, I probably wouldn't know much about it myself. Unless perhaps I was reading some of the literature off the back of long COVID at the moment, which is strikingly similar.
My experience is a year before the pandemic, the end of 2018 start of 2019. I was actually hospitalized twice with a severe acute viral infection. It was the Epstein bar virus commonly known to cause glandular fever. And I was sort of given a three month timeframe to take off work, which was really shocking to me.
I'd never had an illness that meant I had to have three months off work. And perhaps I was very fortunate to have never had an illness that required that. But it got slightly more complicated and I don't know if it was at the time because I had severe viral hepatitis and a kidney stone and other complications in the hospital.
But I couldn't clear the Epstein bar viral load from my blood. And I was pre-warned early on about something called Myalgic Encephalomyelitis. Also known as chronic fatigue syndrome and quite wrongly, as a person who was very lucky, very healthy, active, extremely fit. I did open water swimming and running events for charity with a company called S fit.
And it's all filmed. And this was between filming Vikings you know, I was really on the go all the time. So for someone I suppose like that, and anyone else, even if you're not that active to be told you might have chronic fatigue, I simply said, well, no, I won't get that. And as the months went on, I realized that I, Sorry, I'm trying not to get emotional cus',
Presenter Stig Abell
No go, No, it's important to say these things go on.
Actress Jennie Jacques
That I couldn't do what I used to be able to do. And the infectious diseases team didn't really have, really much to help me. And I said, okay, so what's the procedure what's next? And they kept me under their team for a good year because I had the viral load in my blood, but I was sent to what's called a chronic fatigue clinic at the time.
At the time we were offered exercise and CBT, and you can probably tell on my face that's ridiculous. It was inappropriate for, especially considering I still had the viral load in my blood. Let alone, you know, that ME limits your energy severely. So I eventually started to look up the science myself.
Because I thought, come on, we're in 2019, there has to be something and, and I found scientists in sort of worldwide. There's only a few pioneering in this particular area. And I found some things that would perhaps help me, but for the majority of really the first two or three years, I was bedridden and housebound.
Presenter Stig Abell
And, and even now, Jenny, you can't go for a run or anything like.
Actress Jennie Jacques
Oh, goodness. No. And believe me, I've tried I made the mistake and probably influenced early on by the fact that it was treated with exercise at one point. So I thought right, come on, Jen. Get yourself and I tried to run a mile that was really silly.
I shouldn't have done that and I really paid for it. That's one thing with ME is payback. So for any exertion, and that includes getting up to wash your hair, to eat, for any exertion, you have to really measure it because you're going to most likely have to pay back if you go out of your energy envelope.
But I'm really pleased to say, in this last year, I've seen some significant improvement in my quality of life., I'm pretty functional around the house, which is great and I can get out and I can do a journey if I really carefully plan it and I don't have to walk too far and I can sit down and lie down.
And I know for most people they might think, oh, well, that's not, that's not really a lot, but compared to being bedridden and housebound, it is. But I will say off the back of that, it shouldn't be judged someone's improvement, shouldn't be judged on how proactive they are or how much they want to get better.
It's a disability. You might be fortunate. You might be lucky to get better and recover. Some people do not and something that I do believe has accelerated that process is pacing. So me being really careful with what I do and don't do. Yeah. And actually hyperbaric oxygen therapy at the Midlands diving center I've had quite a lot of that. And now I sort of do weekly top ups.
And it's used to treat multiple sclerosis as well. It's not, it's not necessarily a new therapy, but I'm not entirely sure. I would never give advice. The science is so atrociously underfunded. But I'm not entirely sure, how many people with maybe Myalgic Encephalomyelitis have tried hyperbaric, for example.
Yeah. From what you're saying, the issue I suppose, is as you say, the lack of science, well, I'm glad things are getting better, even if they, they're not perfect. It's really interesting to hear you talk, Jennie, thank you for joining us. That's Jennie Jacques, an actor with ME.
Presenter Aasmah Mir
Let's speak to professor Chris Ponting, who is leading the study itself.
Good morning to you.
Professor Chris Ponting
Good morning.
Presenter Aasmah Mir
What are the kind of things that you hope this DNA study is going to help you to understand more about ME?
Professor Chris Ponting
Well, we don't know what causes this devastating disease. We don't know how to treat it. We don't know how to diagnose it. So without knowing any of these things, we need to look at the fundamentals.
And for me, that is looking at the tiny differences in DNA. That separate people with ME such as Jennie and the general population. So that, that will pinpoint what are the things that are going wrong with people with ME and only then will scientists like myself and others will be able to do the right experiments.
Because there has been tremendous under funding of ME research over the years. And because we haven't understood exactly what are the experiments we should do. This has been an area that's been completely lacking in, in positive stories really. And so today launching Decode ME, I think is a positive story for people like Jennie and people worldwide with ME.
Presenter Aasmah Mir
Well, it certainly is. And it, it was so interesting just to hear there was a time when we had a lot about ME and then it, it obviously kind of disappeared as, as we talked about other things, but you know how it affects your day to day life, how it means that you can't really do anything. Um, and also the, the, the treatments that were available in the kind of early days, she talked about exercise and CBT How if someone is diagnosed with ME in 2022 what is their treatment currently?
Professor Chris Ponting
There's no effective cure. You can treat symptoms, but you can't cure. And there are no drugs, no effective therapies. So, we are in a very difficult situation now and we have to accelerate our progress in the science and in the, and the medical progress and, and in the future, pharmaceuticals, we need to accelerate as fast as we can to help people like Jennie.
Presenter Aasmah Mir
Mm. And how similar is this to long Covid?
Professor Chris Ponting
People report very similar symptoms. We don't actually know whether they're caused internally of course. Virus is a trigger, but we don't understand why people, uh, fail to recover to their previous levels of health in either long COVID or ME. And the effects on people and their families are vast, we have 2 million people with long COVID quarter of a million people with me for decades in this country.
And most people will not at the moment recover for, from ME. Thankfully some people with long COVID are recovering, but people with ME have been neglected. They've been invisible, for many decades.
Presenter Aasmah Mir
Well, I remember when it emerged, I'm pretty sure it was called Yuppie flu.
Professor Chris Ponting
We need to look to the future. That was not the right description, um, looking to the future Myalgic Encephalomyelitis is a term that we need to pay attention to as a society through the health system and through research organisations.
Presenter Aasmah Mir
Professor Chris Ponting. Thank you very much for talking to us. He is leading the study. It's a DNA study, being launched this morning to answer the basic questions, why do people get it and how do you treat it?
Presenter Stig Abell
Yeah, it's very amazing that this which we all heard of it.
Information
NICE Guideline on ME/CFS states:
1.11.14 Do not offer people with ME/CFS:
- any therapy based on physical activity or exercise as a cure for ME/CFS
- generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
- any programme that does not follow the approach in recommendation (1.11.13) or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy.
1.12.28 Discuss cognitive behavioural therapy (CBT) with adults, children and young people with ME/CFS (and their parents or carers, as appropriate). Explain:
- its principles, including that it may help them manage their symptoms but it is not curative (see box 5) and
- any potential benefits and risks.
The MEA NICE Summary can be found here
Medical Matters has the following question about Hyperbaric Oxygen Therapy (HBOT) ‘Has there ever been a research study to evaluate the use of oxygen chambers (hyperbaric oxygen) in ME/CFS?' here