Since I have had a couple of not-so-good days, I thought I would revert to writing about M.E/CFS. Its important for me to have a scientific element to my photography and so I thought it would be a useful exercise to refresh myself on the science and see how I can use this as part of my photography and story of M.E/CFS and chronic illness.
Biomarkers. What is a Biomarker?
First to note, there has long been a broad consensus that clinical endpoints are the primary, and to some the only relevant, endpoints of all clinical research, and ultimately of all biomedical research. The goal of clinical practice is to improve morbidity and mortality, not to change quantifiable features of patients’ innate biochemistry, for instance, with no outward clinical effect. Similarly, patients seek treatment for their diseases, not for the numerical measures that frequently but not perfectly correlate with their illnesses.
The definitions are many. I prefer Wikipedia’s ”A biomarker, or biological marker, generally refers to a measurable indicator of some biological state or condition. The term is also occasionally used to refer to a substance whose detection indicates the presence of a living organism”. Also a good definition in the English Dictionary is ”a naturally occurring molecule, gene, or characteristic by which a particular pathological or physiological process, disease, etc. can be identified”
So what does this all mean for M.E/CFS? Well, since their is no real diagnosis, solely through a process of elimination, there is no diagnostic criteria, no treatment and no cure it seems sensible to start to look for biomarkers of the disease that are similar in similar cohorts of patients. Examples of these cohorts might be, those who are young, under 25 or those whose illness was triggered by a virus, or all those that suffer a similar aggressive symptom, or who fall into two or more of these cohorts. Keeping research into biomarkers simple at this stage is essential since M.E is one of those conditions that displays and disrupts many of the bodies natural systems, cardiac, nervous, respiratory, lymphatic, endocrine, muscular to name a few! so add in someone who can be categorised into a few cohorts and who knows what’s responsible for what?
EUROMEME is a network of scientists and doctors from across Europe who have joined forces to collaborate on M.E/CFS research and one of their objectives is to identify biomarkers that can help in the diagnosis and management of the disease. This group alone now have established 39 relevant biomarker studies looking at a range of immunological, infection-related, metabolic and neurological parameters.
Personally I hate to call it a ‘disease’ and always refer to it as a ‘condition’. I am definitely doing it an injustice but for me personally, I don’t yet feel qualified to refer to M.E/CFS a disease and this helps, I think, with my recovery. Not true for some, who are bed-bound and worse and have every right to call this a ‘disease’.
Back to biomarkers and to move onto some of the work presently underway I thought I would start with the topic of Spatial Vision.
Spatial Vision. Dr Hutchinson and her team at University of Leicester have been leading the way in investigating the many visual problems experienced by people with M.E/CFS. These problems include, difficulty in focusing, reduced eye movement and pattern-related visual stress. Within spacial vision, which is the ability to discriminate between distinct features. Simply put, participants were asked to distinguish narrowly spaced gratings of vertical or horizontal lines, and M.E/CFS patients were less able to make out the closer spaced lines, something that might explain the difficulties with M.E/CFS have with reading.
Some of my practice work has looked at blurred vision but up until now my work has touched mainly on the reflection element of surrealism, a feeling of dissociation that you get on bad days with M.E. Dissociation from life, from your body and any activity that you attempt to do. After writing this blog, I will definitely consider more on the subject of eye movements, spatial vision and blurring as away of telling the story in more detail. This reminds me of the great work that goes on at the Ophthalmic department at Cardiff University and an old contact of mine there who might be worth chatting too.
AHMED et al, 2018. Restricted Spatial Windows of Visibility in Myalgic Encephalomyelitis (ME), Vision 2(1). [online] at http://www.mdpi.com/2411-5150/2/1/2, [accessed 20th Jun.2018]