New ME/CFS chair Sjaak de Gouw: ‘The advances in science provide new opportunities’

Sjaak de Gouw is an administrator through and through; when he graduated as a physician from the University of Amsterdam, he was already a policy adviser to the executive board of the same university. ‘At that point I decided to work at the interface of policy and healthcare for the rest of my life.’

And he has done exactly that. For instance, he advised the Province of South Holland on hospital care and institutional care, and he was made director of the Hollands Midden municipal health services (GGD), where he was also the portfolio holder for infectious diseases. ‘That's how I ended up at the Netherlands Organisation for Health Research and Development (ZonMw), who asked me to chair the first infectious disease control committee. On the strength of that, I received more and more invitations to chair programme committees at ZonMw, including those for Q fever, Lyme’s disease and now also for ME/CFS.’

Sjaak sees chairing the ME/CFS programme committee as a challenge. ‘I have a very open attitude and I think I can contribute something due to my previous experience with the research programming for Lyme’s disease, Q fever and post-COVID. With chronic Lyme’s disease, Q fever fatigue syndrome (QFS) and post-COVID, as with ME/CFS, there is often no antigen you can demonstrate in the blood to establish a diagnosis. However, there is more and more evidence of impairments to the immune system. So I want to encourage the sharing of data between programmes. Suppose there is a study within the post-COVID programme that demonstrates that a particular component of the immune system reacts intensively and causes fatigue, then it would be interesting to derive a hypothesis from that for the research into ME/CFS: is that also relevant here? I see the role of the immune system as a subject that cuts across the research lines of those different programmes.’

Sjaak believes that a further strength of the programme is that it enables scientists to conduct in-depth and intensive research into the biomedical causes of ME/CFS in all kinds of directions. ‘We can really start looking into which processes lead to ME/CFS and which subsidiary forms can be differentiated. For example, is it a single large group or are there multiple causes? It is incredibly helpful to be studying this for an extended period and you can only do that by working together: scientists, patients’ representatives and ZonMw. That is essential. I will therefore do everything I can to ensure a good dialogue between the parties. I want to be a connector.’

As well as bringing people together, Sjaak wants to make sure that by the end of a meeting, everyone has been able to actually contribute what they wanted to contribute. ‘We sometimes like to hold meetings for 4 hours straight, but if you genuinely want to value and acknowledge the contribution of patients’ representatives, that also has implications for the way in which you structure meetings. Because if a person can only spare enough energy for 1 or 2 hours, you shouldn’t expose that person to a 4 hour meeting because that would make them terribly ill for weeks afterwards. For me it is an additional challenge to utilise the energy that representatives of patients’ organisations are able to contribute to optimum effect and to respect their limitations.’

All in all, Sjaak believes that this programme has great potential. ‘The fact that the Health Council has recommended a programme of this nature also means they believe there is a realistic prospect of results. We are now at a point where we can conduct genuinely new biomedical research into the causes of ME/CFS, better than we were able to 20 years ago. Thanks to new technologies, we are able to identify processes at cellular level in the field of molecular biology. These advances in science provide new opportunities, including for ME/CFS. I believe that by 2031, we will have completed a large number of studies that will yield pieces of a puzzle. ME/CFS is complex and we will find all kinds of interrelated causes, which I regard as pieces of the puzzle. If you have enough pieces, the whole picture becomes visible and with it the opportunities for diagnostics and treatment.’

Tekst: Suzanne Streefland | Beeld: privéarchief Sjaak de Gouw