Encouraging new ideas for CFS/ME research
At the inaugural conference of the UK CFS/ME Research Collaborative in September researchers in the field of chronic fatigue syndrome and myalgic encephalomyelitis got together with scientists from a range of other fields in an effort to spur on research into new areas. Here Professor Stephen Holgate, MRC Clinical Professor of Immunopharmacology at the Faculty of Medicine in Southampton, and Chair of the collaborative, explains why the conference was so significant, and what came out of it.
CFS/ME is a complex disease. In fact, it may not be just one disease at all. I say ‘may’ because there’s a lot we don’t know about CFS/ME ― and we desperately need research to get some answers.
It is a chronic condition characterised by severe fatigue, weak and painful muscles and/or joints, poor memory and concentration, and poor sleep. Not everyone will have the same symptoms, or the same severity of symptoms. We’re not certain what causes it, and although it often occurs after an infection or accident, it can also come on gradually.
So, we have a condition with no known cause, that manifests itself in different people in different ways and severities, and at different times. It’s obviously a field that is ripe for discovery. But so far, for a variety of reasons, we haven’t been able to get these answers.
Part of the reason for the lack of answers in CFS/ME is that researchers haven’t been able to deliver enough high-quality proposals to funding bodies. By bringing a diverse group of researchers together at the conference, we hoped to generate new ideas and collaborations that could result in these high-quality applications.
New ideas often come from new people. Moreover, to progress and deliver excellent research we need to make sure we continuously build capacity ― support established researchers already working in the field and attract new ones to work on CFS/ME. In the end 70 researchers and clinicians with an interest in CFS/ME attended the September conference. They came from all over the world, and while some have worked in this area for years, others are entirely new to the field.
It was great that so many PhD and medical students attended the event, because capacity building is what growing a scientific discipline is all about. We want early-career researchers to see the field as an attractive one in which they can do interesting and important work.
We talked about a range of research at the conference. Topics under discussion included pain, the immune basis of fatigue and the association of CFS/ME with sleep. I really want us to capitalise on this coming together of interdisciplinary researchers so that we can develop standard protocols for things such as banking biological samples, describing symptoms, and applying ‘omics’ technologies to large numbers of patients.
Though the conference was for researchers, we included a session in which around 60 patients and carers got together with researchers too. This is because we want to make research accessible to the patients, and also to take advice from them on the level of involvement in research that patients are likely to accept. For example, what kinds of biomedical tests would they be willing to undergo? How many questionnaires would they fill in?
Emerging themes included: the likelihood that CFS/ME probably has many causes; the need to ‘stratify’ or group patients with similar symptoms together to see whether they share common causes or markers of biological processes; the need to recognise that what causes CFS/ME might be different to what maintains it; and the need to understand that diseases may not necessarily be either biological or psychological but may, in fact, be both.
That last point is an important one: we need to shout about the fact that CFS/ME has a biological basis. Regardless of any psychological involvement ― you can’t have psychology without biology.
The sooner we find this biological basis, or indeed bases, the better.
The CFS/ME field has been marred by a breakdown in trust between patients, clinicians, researchers and funders; disagreement about research results; and a lack of investment by industry. But as I said at the conference, this isn’t about finishing something, it’s about starting something. The conference gave me the energy and enthusiasm to think that we can move this field forward.
Read the full conference report.
Stephen Holgate is Chair of the MRC Translational Research Group. The MRC contributed to the costs of holding the conference and is an observer of the collaborative.