The cause of ME or CFS remains a mystery but for a quarter of a million people who suffer not just from debilitating tiredness but chronic pain as well the condition itself is all too real.
Researchers at Kings College London have found what they think may be a link between ME and an overactive immune system.
The professor of Biological Psychiatry at Kings College London is Carmine Pariante and he joins us now along with 22 year old Ellie Bunce who has suffered with ME for the past few years.
Morning to you both.
Good morning.
Int: Professor Pariante, this is not yet the key fact that we need but it’s a line of enquiry that you’ve found. Tell us more.
CP: So what we have been able to do is to examine people early on in their trajectory to develop chronic fatigue syndromes. The problem with research in this area, is that patients come to the attention of the physician and researchers when they have been ill for literally years and years. And at that time it is very difficult to understand what were the cause of the disorders that developed early on. So we use a clinical models of people who develop chronic fatigue syndromes in response to an immune therapy and we found that only people who had a hyper-active immune system, even before the immune therapy, so the hyperactive immune system was part of the biological signature, these are the people who go on to develop chronic fatigue syndrome.
Int: Key to your research is that you actually look at people before they get the condition.
CP: absolutely.
Int: Before to look who does and who doesn’t
CP: absolutely.
Int: Erm Ellie Bunce tell us a little about this condition because you know and it must infuriate you there are people who because the cause is not known are a little suspicious it’s not real. How real is it to you?
EB: Ha ha, yeah, it’s certainly very real for me. Erm it is more than just tiredness as well, which is worth noting. Erm , so it’s all to do with your erm, your senses as well so I can like really struggle with light sensitivity and sound sensitivity, as well as severe pain episodes and poor cognitive function also.
Int: So this is entirely debilitating for you presumably?
EB: Yes, definitely. I mean I have to spend around 20 hours in bed every day just to be normal for four hours.
Int: 20 hours in bed. And before that? Were you an active person?
EB: Er yeah before that I was actually a full-time rowing athlete, erm and I was at University as well studying primary education. So I was very busy, I was doing that and working on top of it so my life was very hectic but I loved it.
Int: and this is something that has been going on for some years now?
EB: yes, so its been two and a half years so far.
Int: so listening to what Professor Pariante is saying does it give you some hope? It’s at least a line of research.
EB: yes, definitely , cause I think research in ME has been lacking for so long so, just the fact that something’s come of it is a massive step forward for the ME community.
Int: Professor Pariante, what next then? Having found the possibility that this immune system is crucial, what could you do next?
CP: So the next question is trying to understand what does the immune system do to the rest of the body which creates the fatigue that then goes on for years and years, even when the immune system no longer is abnormal. And we suspect that there are alteration every where in the body it could be in the muscles, it could be the brain it could be the liver, and we know, we have some kind of preliminary evidence of this but we don’t know exactly what is this downstream mechanism. Once we know this then we will be able to develop targeted treatment for these people who suffer from chronic fatigue syndrome today.
Int: I mentioned to Ellie that it is infuriating to ME sufferers to sometimes hear people either say its not real or to say it’s all in the mind. You are a professor of , interestingly, biological psychiatry, what do you say to those people.
CP: So I really think there is no dichotomy between the mind and the body or the brain and the body. All disorders are medical disorders, they’re disorders of the whole body. If you take the most medical disorders like cancer or er rheumatoid arthritis they are influenced by psychological and psychosocial factors like stress and nutrition, and the same time depression which it a classic psychiatric disorder has abnormalities that you can measure in the blood. So there is not distinction. This is just health. All disorders are just medical disorders of the whole body.
Int: Ellie is it good for you to hear that and say look this is a very real and rather appalling thing to suffer from?
EB: yes definitely. I think for a long time ME was dismissed really. And people don’t understand it and normally you cant really see it in a person either so I think its quite easy for people to dismiss it and say its not true so its very good to hear that its believed in.
Int; and you are one of many thousands of sufferers?
EB: yeah there are so many people suffering from it. Erm, I think the numbers of people suffering are actually higher than they might be because of lack diagnosis as well.
Int: 250,000 is the official figure at the moment. Well Ellie thank you for telling us about it and good luck with your battle with it and good luck your research Professor Pariante of Kings College London.
