For my ongoing photographic work on M.E/CFS and chronic illness, I am interested in the overactivity of the body responding to stimuli it seems of almost any sort! The confusion the brain gets itself into, the mix up in central sensitivity causing the body to think it is awake at night and asleep in the day, is all material for my ongoing project and shows me that my experience has been similar to millions of people all over the world. It helps me construct these images below. Its important for me to understand these key points, ( which as you will know when you read on, could be a massive challenge for us M.E Sufferers), and continue to reflect them in the context of my work.
I wanted to spend a moment looking at some unusual research progress for M.E /CFS. I was further intrigued to read about the recent Small Brain Science Conference which took place in Sedona, Arizona in April 2018 and featured key speakers on M.E/CFS.
Lucinda Bateman, MD and Ron Davis PhD lectured on M.E/CFS. The topic of my ongoing photographic project was mixed in amongst talks on Parkinson’s, Epilepsy, neurotoxins, pain circuits and neurodevelopment was a session simply titled “Chronic Fatigue Syndrome”. The two talks: “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a multisystem illness invisible in plain sight”, by Lucinda Bateman, MD; and, “Developing new technologies to unravel chronic fatigue syndrome“, by Ron Davis PhD, didn’t even pretend to make an explicit connection with brain science. I was keen to understand if there were any developments that I could develop as an image from reading about this.
This conference is worth mentioning because its the first, I hope, of a lecture series based on the fact that Ron Davis has just secured £74m for M.E/CFS, which is un heard of in the history of M.E/CFS! M.E/CFS raises less than 0.01% of the funding that breast cancer alone raises.
Dr. Bateman covered some key characteristics of the disease. ”There’s the inability to reproduce energy production after an exercise challenge – still probably the most startling study result ever found in ME/CFS. It’s a result that goes to the core of this disease”. After showing that result to a guru of exercise physiology, Dr. Bateman reported he said, “If that’s true then it’s unique”. Yet, that finding has actually been demonstrated in studies containing 51 patients, 22patients, 15 patients and 6 patients.
Davis continues “Over ten years since this finding appeared, we still lack the definitive study that would prove to me and others that something has gone badly awry with energy production and exercise in ME/CFS. Why that study hasn’t been done is a mystery to me. It would also explain ME/CFS in simple, basic terms that everyone could understand”.
‘My view is that the best way to wake up the research community to the seriousness and uniqueness of this disease would be with a large, rigorously controlled, two-day exercise study that irrevocably demonstrated the presence of a unique energy deficit in chronic fatigue syndrome (ME/CFS)’
Dr. Bateman went onto highlight the weird sleep problems in ME/CFS – the high alpha waves at a time they should be low, and the low delta waves at a time they should be high. ”ME/CFS patients brains are in sleep mode when they are awake, and in awake mode when they’re asleep” she says. She suggested that central sensitivity may be responsible for a lot of the sleep problems in ME/CFS.
Dr. Bateman talked about the ‘Wired and Tired’ issues, the too-exhausted-to-sleep problems and the over-signalling; i.e. the unrelenting brain activation that leaves the brain highly sensitive to any kind of stimuli and keeps it from settling down, resting and rejuvenating.
From this report at Health rising, the figures for the prevalence and consequences in the US are as follows: The disease affects from 800,000 to 2 million Americans, is responsible for $17-24 billion in economic losses yearly but is undiagnosed in 80% of patients, is not taught in medical school, and gets about $13 million in funding from the NIH. Bateman asked ”how on earth does a disease this common and this serious get overlooked?”
JOHNSON, C. 2018. Dyamic Duo: Lucinda Bateman and Ron Davis Rock the Brain Science Conference. Health rising. 18 June. [online] at https://www.healthrising.org/blog/2018/06/18/dyamic-duo-lucinda-bateman-and-ron-davis-rock-the-brain-science-conference/ [accessed 27 Jun.2018]
SNELL, CR, STEVENS, SR, DAVENPORT TE, VAN NESS, JM. 2013. ‘Discriminative validity of metabolic and workload measurements for identifying people with chronic fatigue syndrome’. Physical Therapy. June 27 [online] at https://www.ncbi.nlm.nih.gov/pubmed/23813081 [accessed 27 Jun. 2018]