by Sasha Nimmo

‘Meet the Scientists’ is a series, interviewing researchers working on ME and chronic fatigue syndrome. We hear about current research directly from scientists and meet the people doing such important work to improve our health. The series will introduce early career researchers through to interviewing scientists and clinicians who have been working on the problems for decades.

Meet Dr Sarah Knight from Murdoch Childrens Research Institute at The Royal Children’s Hospital in the University of Melbourne, Australia.

Dr Knight and her colleagues are working on a study into neurological biomarkers in children and adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Canadian Consensus Criteria), partly funded by ME Research UK.  The world-leading research is looking for the underlying mechanisms for cognitive fatigue and neurobiological markers, with the aim of improving clinical care for children and adolescents with ME/CFS in Australia.

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How is the study progressing?
We are well into the process of completing brain scans and cognitive assessments and are just beginning to look at some of the results. We have been delighted by the enthusiastic response and participation in the project so far by both adolescents diagnosed with ME/CFS and their families and we cannot wait to share our findings.

Why is the study of paediatric ME/CFS important?
With the onset typically in adolescence, paediatric ME/CFS causes significant disruption during an important time in development. Both the nature of the condition, and the consequences, such as the impact on schooling, socialising, and future vocational opportunities, are quite different compared to when an adult is diagnosed with ME/CFS, yet to date much less research has been dedicated to this vulnerable group.

What kind of information does neuroimaging give you?
Neuroimaging research helps us to understand what is happening functionally at a neuronal level. This could help us identify biological mechanisms that may be contributing to many of the ME/CFS symptoms. As a neuropsychologist, I am particularly interested in examining the cognitive difficulties reported by many patients with ME/CFS and the underlying neuronal mechanisms for these difficulties. Only a handful of studies have looked specifically at cognition in children and adolescents and very few studies have investigated the underlying neurobiological markers for these cognitive difficulties.

Why did you choose the Canadian Consensus Criteria for your study? 
Our team agreed that the Canadian Consensus Criteria was the best approach currently available for accurately defining the syndrome. However, as there is still some debate about the best criteria to use, we are collecting detailed information about the symptomatology of the patients participating in the study so that we will be able to provide a clear description of the sample.

Do you have an estimate of how many children/young people in Australia are affected?
Studies from other countries that have investigated the prevalence of ME/CFS in children and adolescents vary widely in their results and so it is difficult to estimate how many children/young people in Australia are affected. I am not aware of any previous studies that have looked specifically at this in the Australian population. We are currently conducting a study with the Australian Paediatric Surveillance Unit which will allow us to estimate the incidence of paediatric ME/CFS in Australia. We expect to be able to publish our findings in the next 12 months.

Is Australia a good place to be a researcher?
I believe so, and I feel very lucky to work at the Murdoch Childrens Research Institute, the leader in child research in Australia.

What led you to work in this field?
So far in my research career I have worked clinically and in research with children and adolescents with a range of chronic health conditions, including childhood cancer, Type 1 diabetes, and craniofacial malformations. Clinically, as a neuropsychologist I have worked predominantly in childhood cancer and acquired brain injury rehabilitation. Both clinically and in research I have a passion for improving the health and wellbeing of children and young people with chronic health conditions.

Which areas do you think are over-examined or under-examined in ME research? 
Traditionally, there has been less research emphasis on paediatric ME/CFS; however, it is great to see more and more research dedicated to this area, from our expanding team in Melbourne but also from around the world.

ME Research UK is funding some of your work, are you doing work that no-one else in the world is doing?
We are incredibly grateful for the support of ME Research UK. We believe that the research we are doing is novel and is likely a world-first. There are an increasing number of studies that have used neuroimaging techniques in adults with ME/CFS; however, only a handful of studies have investigated neurobiological markers in a paediatric population. Likewise, very few studies have combined neurocognitive assessment with brain imaging to really understand and objectively examine the underlying mechanisms for cognitive fatigue, and/or the concentration and memory difficulties frequently reported by patients with ME/CFS.

Are you getting enough financial support from Australians? (I ask because the NHMRC hasn’t funded a study into CFS since 2005.)
We are tremendously grateful for the financial support we received from the Mason Foundation in 2013 which allowed us to establish our research program, as well as the support we have received from the Murdoch Childrens Research Institute and The Royal Children’s Hospital. Unfortunately, as you are aware, research funding in Australia is highly competitive and in 2016, we are currently actively seeking funding for our research program to continue.

Do you think ME research will be helpful for other illnesses, or is there any other diseases’ research that you think will have an impact on this disease? (i.e. Rituximab’s discovery while treating leukaemia.)
Potentially, yes. Chronic fatigue and many of the other symptoms associated with ME/CFS are also frequently seen in other childhood chronic health conditions such as childhood cancer, stroke and other acquired brain injuries. While the underlying cause differs in these conditions, it is possible that some of the treatments developed for ME/CFS could also be effective in other chronic health conditions.

How would you describe your work in one short sentence?
Improving wellbeing and health outcomes for children and adolescents with chronic health conditions.

What response do you get when you tell people about what you are working on?
Most people know someone in their lives who suffers from the condition and are really excited that we are doing research in the area that could potentially improve the lives of sufferers. They are usually really interested to hear about our research program.

What are you most proud of in your career so far?
I am proud to integrate both clinical practice and research into my career so that clinically I can help children and adolescents with chronic health conditions, including ME/CFS, but also so that I can create research knowledge that could make a big difference to the wider community of patients with ME/CFS.

What would you like to achieve in your career?
I would like for our research findings to translate into clear improvements in the quality of clinical care for children and adolescents with ME/CFS in Australia.

Do you know anyone with this illness? 
Personally, I do not know anyone with this illness, although I have worked with many patients with ME/CFS over a number of years now and am so grateful to the participants of our research studies who have given up so much of their time to be involved.

Do you think there is strong enough evidence to say that patients should be treated with cognitive behavioural therapy and graded exercise therapy for recovery?
I am not in a position to comment on whether there is strong enough evidence for the effectiveness of these therapies for adults with ME/ CFS.

Our team published a systematic review in 2013 which investigated the evidence for interventions for children and adolescents with ME/CFS. Our findings indicated that evidence for the effectiveness of interventions for children and adolescents with ME/CFS was still emerging. Methodological inadequacies and inconsistent approaches limited the interpretation of findings. The review found that there was some evidence that children and adolescents with ME/CFS benefit from particular interventions; however, there remained gaps in the evidence base. Clearly, more research is required to determine whether these interventions are of benefit or not for children and adolescents with ME/CFS. Here is our publication: Interventions in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review.

What do you like to do outside work?
Outside work, I like to spend time with my family and friends, whether it be going for a bike ride, baking, gardening, going to a Pilates class, or spending time on our family farm.

Here is a selected list of Dr Knight’s publications.