Our work on vision-related problems in CFS/ME

People who suffer from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) report a number of vision-related problems. These problems have a marked impact on quality of life. They also represent distinct, quantifiable, clinical features that could significantly improve diagnosis, provide insights into underlying pathology and represent a candidate for treatment. Over the last 3 years, we have been studying these vision-related problems in more detail.  Although our research programme is in its infancy, we hope that our findings will go some way to helping people with CFS/ME.

Our first project was entitled ‘Assessment of visual function in Chronic Fatigue Syndrome’. Its purpose was to provide objective, experimental evidence to support the claims of people with CFS/ME that they did experience problems related to their vision. ME Research UK and the Irish ME Trust came together to provide funding for a 1-year pilot study which ran from late 2011 to 2012. It enabled us to employ a researcher, Dr Steve Badham (now at Warwick University doing research into memory in older adults), to work full-time on the project for 10-months. We showed experimentally that even basic eye movements to simple static targets are less accurate in those with CFS/ME compared to control participants and that moving the eyes even for short periods induces eye-movement fatigue.  We also showed that those with CFS/ME exhibit a range of problems related to visual attention. These findings supported their self-reported visual difficulties. In a questionnaire study, we also showed the severity of vision problems is directly correlated with their impact on patients’ everyday lives. The publications from this initial work are listed below.

Hutchinson, C.V., Badham, S.P. (2013). Patterns of abnormal visual attention in Myalgic Encephalomyelitis (ME). Optometry and Vision Science, 90, 607-614. [Abstract]
Badham, S.P., Hutchinson, C.V. (2013). Characterising eye movement dysfunction in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. Graefe’s Archive of Clinical and Experimental Ophthalmology, 251, 2769-2776. [Abstract]
Hutchinson, C.V., Maltby, J., Badham, S.P., Jason, L.A (2014). Vision-related symptoms as a clinical feature of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis? Evidence from the DePaul Symptom Questionnaire. British Journal of Ophthalmology, 98, 144-145.

One of the useful aspects of our first pilot grant from ME Research UK was that it provided the opportunity to actually talk to patients about the visual problems they experience. Many of those who took part in our initial study reported vision-related headaches after reading. Although reading involves many complex cognitive processes, it is heavily dependent upon visual information. ME Research UK is providing funding for a Research Masters student, Rachel Wilson, to follow this up with experimental studies examining visual stress and eye-movements during reading in people with CFS/ME. Her Masters thesis will be entitled: ‘Reading between the lines of visual discomfort in CFS/ME’. This project is in collaboration with Dr Kevin Paterson at the University of Leicester and is ongoing.

We are also delighted to report that we have just received a small grant from Fight for Sight and The Thomas Pocklington Trust. It is entitled ‘Ophthalmic correlates of visual symptoms in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’ and will provide funding to determine the outcomes of ophthalmological investigation in CFS/ME patients. We hope to begin this research in the next couple of months. We will determine patients’ performance on a range of tests of visual sensitivity. We will also take high resolution images of patients’ retinae (the back of the eye), establish the presence of dry eye syndrome (a problem related to tear production), which causes eye pain and itchiness in the eyes, problems commonly reported by people with CFS/ME. As in all our studies, all measurements from CFS/ME patients will be compared to a group of matched control participants. This project is in collaboration with the Ophthalmology Group at the University of Leicester.

Our work so far would not have been possible without the kindness and support of the CFS/ME community. We are extremely grateful to all those who have taken part in our studies so far, and provided advice and help with recruitment. We are also very grateful to the charities that have invested in us, without whom we would not have been able to get this research up and running, We hope that these initial studies will provide a springboard for future, large-scale studies to look at the full picture of vision-related discomfort in CFS/ME and hopefully reveal ways in which it might be alleviated.

Claire Hutchinson

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