Last Saturday saw Jennifer Brea and Dr Charles Shepherd interviewed on BBC Breakfast by presenters Naga Munchetty and Steph McGovern.
BBC Breakfast attracts a very large audience and although this was a relatively short interview, Jennifer and Charles managed to pack a great deal of information about M.E. and the documentary film, Unrest, into it.
They also spoke with interested producers and the crew about the illness afterwards, and Dr Shepherd talked with Naga Munchetty when she gave him a lift to the train station.
The BBC interview can be watched now on YouTube (below):
Naga Munchetty: 5 years ago, Jennifer Brea was working on her PhD and months away from marrying the love of her life. Suddenly she fell ill, experiencing symptoms that often left her bedbound and in excruciating pain.
Steph McGovern: Jennifer was diagnosed with chronic fatigue syndrome or M.E. Now, frustrated by a lack of understanding amongst the doctors she saw, Jennifer decided to film herself – and other people – with the condition for a documentary she called, Unrest.
[Excerpt of Unrest]
Steph: Well we’re joined now by filmmaker Jennifer Brea and Dr Charles Shepherd who is the medical adviser to the ME Association and contributed to the film. Thank you both for joining us.
Steph: Jennifer you look amazing it’s fair to say, how are you actually feeling at the moment? Because seeing that footage it’s really shocking. How are you?
Jennifer: It’s still really up and down. I’m really lucky to no longer be bedridden or homebound, but I still have days when I can be really stuck in bed. But I’ve gotten better with treatments over time.
Naga: And you’re sitting like that because it’s comfortable?
Jennifer: Yeah. So, a lot of people with M.E. have something called PoTS which is a condition where your blood basically pools in your feet, so I have to stay here to keep the blood flowing up to my brain.
Naga: Ah. OK. I’m glad you explained it. [Dr Shepherd] You’ve been involved in the making of this film, why was it so necessary to document?
Dr Shepherd: Well, I think the film in particular is so important because it’s raising awareness, one, of the condition. I mean an awful lot of people – I am sure you’ve heard of ME/CFS – but like probably the rest of the population you are not quite sure what it is and the most important part of this film is that it is raising awareness – not just amongst the public but also among the medical profession – that severe M.E. exists. That 25% of people with this illness have a form which keeps them housebound, bedbound; and at the bedbound end there are people who are being tube-fed. And these people are severely neglected, they’re isolated, and they are not in touch with the medical profession – they have just lost touch with doctors and we are just not managing this illness in that group effectively, at all.
Steph: And Jennifer, you met a lot of people when you were making this. And what I thought was interesting was that when you got it to begin with you started filming it didn’t you. Why did you do that? Was that just for your own reasons or did you want to make something out of it in the end?
Jennifer: I think in the beginning it was because I didn’t know what I had. It took a very long time – as Dr Shepherd said – to get diagnosed, and when I was going in to see a doctor it was because I was feeling particularly well, because I was well enough to go in. And so, I think there is a lot of disbelief about this illness. A lot of misunderstanding and a lot of poor treatment. The most common treatment for this disease is something called graded exercise, which can actually make many patients worse. And so, I thought it was really important for medics and for the public to bring people into the experience of what it is to live in our homes and bedrooms.
Naga: Isn’t part of the problem that this is so difficult to diagnose? I mean you cover this in your film as well, looking at the history of medicine and how people had chronic fatigue symptoms or M.E. or however it is being interpreted, and a lot of people dismiss it as ‘oh yeah, you feel tired, I get tired too’.
Dr Shepherd: I think we’ve got to dismiss this idea that this is tired all the time. It’s not tired all the time. It is actually quite easy to diagnose in the vast majority of cases. Most people will present as being fit young adults – it’s normally twenties, thirties, forties, it does affect children, teenagers as well – they will say, I was fit, well, I got an infection, I didn’t recover from it. I kept on feeling unwell, flu-like, really grotty, and I had these really characteristic muscle and brain symptoms, exercise-induced muscle fatigue, pain in the muscles, problems with brain function – Jen’s told us about PoTS this is the autonomic nervous system not functioning properly, feeling feint, not being able to stand-up properly, loss of balance and coordination – and cognition, not being able to have normal memory and concentration. And that complex of symptoms, following a viral infection, in someone who has been previously well should be alerting a doctor towards making this diagnosis.
Naga: I think the film Unrest, Jennifer, shows that really clearly. I think we could talk a lot longer about this. If people want to find out more about it, Jennifer’s film is called Unrest and it’s available to stream online.
Steph: Thank you so much. That’s it from us. Have a good day.