The UCLH Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) in Young People course on November 1st 2018 was a fascinating day, with opportunities to learn more about the condition from the perspectives of alumni of the service, as well as members of the medical and psychological teams.
Dr Lee Hudson gave an overview of the CFS/ME from the perspective of a consultant paediatrician. It was interesting to hear how there is no consistent, specific medical diagnostic test or treatment for CFS/ME. Rather, it is a diagnosis of exclusion, as other possible causes for the condition need to be ruled-out, meaning that people’s journey to diagnosis can be convoluted and tiring in itself, involving many tests. Lee quoted Voltaire in his talk:
“The art of medicine consists of amusing the patient while nature cures the disease.”
Voltaire
Dr Hudson described how prior to CFS / ME being diagnostic labels, previous labels applied to what might be the same group of conditions included Da Costa’s Syndrome / Soldier’s Heart, postviral fatigue syndrome, and Royal Free Disease.
Dr Mike Farquhar gave a talk on sleep and CFS/ME. He echoed the sense of mystery around CFS/ME by showing a standard hypnogram and then one for someone with CFS/ME (the same image). This emphasised the point that there is no unique hallmark to the impact the CFS/ME has on an individual’s sleep. He explored the distinction between sleepy-tiredness and fatigue, with a sleep-deprived individual at one end of the continuum, and someone with chronic fatigue at the other – desperately fatigued, but often frustratingly unable to sleep. Mike described how young people with CFS/ME diagnoses might attend the sleep clinic, and their route through the clinic is often to have sleep assessments via actigraphy and perhaps overnight studies in the lab, to exclude the possibility of specific sleep conditions that might also be impacting on their daytime functioning, followed by recommendations to optimise their sleep.
Prof Deborah Christie and Dr Halina Flannery led the session on psychological support offered by the clinic, playfully titled Why not CBT, or why NOT CBT? This covered the general approach that they have found to be most helpful with young people with CFS/ME diagnoses. Resistance to a psychological approach is often considerable at the beginning of people’s journeys, as people feel they are physically ill primarily, and that psychological aspects are not a part of the condition. Setting up an environment that allows people to feel safe is key, and this involves appreciative freetalk, establishment of a shared agenda, future-scaling and communicating with more than words, or indeed without words if this is more comfortable.
Deborah and Halina outlined Creative Psychological Therapy, an integrative systemic way of working that champions positive stories, collaboration, circular rather than linear ways of thinking about the factors interacting in people’s lives, cultural aspects, and communication. These five Cs were in evidence throughout the psychological sessions, and indeed it was clear that they had permeated the practice of the entire team, which was fantastic to see in action. Narrative approaches were described, and creative ways to align narrative work with people’s experiences were explored, including potentially designing a Fortnite-style gaming experience around someone’s journey with CFS/ME.
The panel session with alumni of the service was truly inspirational – hearing the young people’s brave openness to reflect on their journeys, and how a combination of support and benevolent challenge and pacing had helped them to expand and reinvent their lives, and think about their priorities was really powerful and brought the learning to life. It was an honour to hear people’s stories, and the interactive Witnessing Outsider Witnessing workshop at the end of the day was an opportunity to bring it all together. I volunteered as an Outsider Witness – I always break under high-pressure volunteering situations! This comprised answering four questions:
- What struck you from the stories? (Identifying the expression)
- What image or metaphor did this trigger? (Describing the image)
- How does this resonate with your experiences? (Personal resonance)
- Where will this take you in your life? (Acknowledging transport)
Whilst I obviously cannot answer the first two owing to confidentiality, I found that the whole day resonated with me strongly. At the age of 18, a GP said to me:
You have tested positive for the Epstein-Barr Virus. You will feel awful for another three weeks. You will be depressed for a year. You will have low energy levels for the rest of your life. There is no treatment. Goodbye.
My GP, 2000
At the time, these words hit me like a ton of bricks. It was a turning point in my life, and paradoxically led to me taking more care of my health and wellbeing. Fortunately for me, whilst the early days were very difficult, my GP’s doomsaying lifelong prophesy was not fulfilled. I think the experience gave me a firm sense of the power of words to inflict damage or to heal, and certainly influenced the path I have followed since.
Further reading & links
- Christie, D., McFarlane, F., Casdagli, L., & Fredman, G. (2016). Witnessing outsider witnessing: A reciprocal witnessing workshop with young people reclaiming their lives back from pain and fatigue. Physical Medicine and Rehabilitation Research, 1. https://www.doi.org/10.15761/PMRR.1000122
- Griffin, A., & Christie, D. (2008). Taking the psycho out of psychosomatic: Using systemic approaches in a paediatric setting for the treatment of adolescents with unexplained physical symptoms. Clinical child psychology and psychiatry, 13, 531-542. https://www.doi.org/10.1177/1359104508096769
- Action for ME
