I have been working in Functional Seizures Clinical Psychology since 2019. Even in that relatively short time, we have effectively set up our service twice owing to the rapid adaptation that the COVID-19 epidemic necessitated. We offer one-to-one and group interventions as well as providing information and training to wider services. Our service’s main therapeutic approach is Acceptance and Commitment Therapy (ACT). COVID-19 has meant that we have moved to a much more online model of delivery, with its benefits and drawbacks.
March 25th was functional neurological condition awareness day, and I decided to post a Twitter thread to mark the day and hopefully share useful information that we have gleaned on our service’s journey more widely. It has since had 13000 views and various retweets so I thought it might be helpful to repost it here.
Functional conditions can develop for all sorts of reasons, unique to each person.
They could be a way our mind-body protects itself from threats which may or may not still be present.
“Extraordinary”, “weird” and “unprecedented” seem to be watchwords of the times we are living through. I keep hearing people describe the present, and situations that arise using these and similar expressions, perhaps to remind ourselves that it is okay not to know exactly how we should be responding. We encourage each other to “stay safe”, although I can’t help but notice a little spike of anxiety whenever I hear it. Battling a foe as nebulous as COVID-19 is anxiety provoking, as we naturally seek certainty, which is scarce at this stage.
I taught a session on sleep for trainees at UCL last week. This was originally intended to take place in person, but here in the United Kingdom, we have been under a form of COVID-19 related lockdown for some time, which has confined a lot of people to their own homes. I was therefore forced to deliver the teaching via narrated slides. The trainees had some great questions, and there might be scope for me to produce a short video of sleep tips for all during the COVID-19 crisis. A lot of us are spending more time at home, which has its benefits and drawbacks. In light of this, I thought I’d suggest three potential sleep quick wins here:
It’s World Sleep Day, and the podcast that Dr Mike Farquhar and I made with Jenny Fox and Sam Harvey from the PSHE Association goes live today. It’s about the Sleep Factor lesson plans that we made in collaboration, and sleep more widely. We hope you enjoy it.
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
I took part in the Living With Narcolepsy event jointly organised by the Royal Society of Medicine and Narcolepsy UK in London. Medicine and Me days are a great opportunity for people with a given condition and clinicians in that field to meet and share their knowledge. This is my brief overview of a fascinating day with a range of speakers talking about diverse aspects of narcolepsy, a frequently misunderstood condition.
Yves Dauvilliers kicked off with a talk about clinical aspects of narcolepsy, giving a through outline of the clinical management strategies such as medication and wider therapeutic interventions. He also covered the development of a novel outcome measure for narcolepsy severity, which sounds helpful, although it can only be used with people who can self identify symptoms such as cataplexy. He also talked about emergent interventions, including efforts to treat narcolepsy in its very early stages with intravenous immunoglobulin.
Heather Korbey talked about her narcolepsy journey – living with the condition for 25 years before its diagnosis when she was 33. She talked about how she had self-identified the condition from a veterinary dictionary, but that this had initially been rejected by health professionals. It was inspiring to hear about her Narcolepsy Entrepreneurs Group, which includes her cafe, catsitters, and crafters.
Matt O’Neill talked about the orphan disease status of narcolepsy, and how this can mean that Big Pharma is able to develop, trademark and monopolise expensive treatments for a decade at a time. He also cautioned that as pharmaceuticals reach the end of their patent periods, there might be more incentive for drug companies to redevelop slightly different versions of the compounds, so that they can re-patent and corner part of the market for another ten years. In relation to the use of SSRIs to manage narcolepsy misdiagnosed as depression, he described how these might suppress cataplexy and other REM-sleep related phenomena, thus treating or at least masking the impacts of narcolepsy, and prolonging the time from development of the condition to effective management being put in place.
Birgitte Kornum flew in from Copenhagen to talk about the interactions of genetics, environment and random chance that can give rise to the autoimmune reaction thought to precipitate narcolepsy. It was fascinating to learn about how the adaptive immune system, ordinarily a super-efficient way the body develops wide-spectrum immunity to potential pathogens via somatic mutation, can accidentally cause an autoimmune response to certain environmental pathogens, leading to conditions like narcolepsy and diabetes.
Francesco Cappuccio presented on the sleep deprivation. Having previously asked people with narcolepsy during a panel discussion about their take on the weight-gain that can be associated with narcolepsy, he described his formulation. This was a vicious cycle in which tiredness contributed to glucose intolerance and endocrine disturbances involving orexin, leptin and ghrelin, and increased fatigue, which lead to weight gain, potentially precipitating sleep-disordered breathing, and disrupted, shorter sleeps, which can in turn feed in to further tiredness.
Henry Nicholls, author of Sleepyhead, discussed how he would like narcolepsy to be reframed as a condition of disturbed night-time sleep, rather than the daytime sleepiness which is often described as its main phenomenon. He also described how helpful he had found the sleep restriction component of CBT for insomnia.
Teya Staniforth, who has published a paper on diagnosis and management of narcolepsy and cataplexy in children with Jane Blackwell, discussed her experiences of narcolepsy with a specific focus on automatic behaviours. She described how frustrating her experiences have been, and how sometimes her cataplexy has been the only thing that has stopped her from physically lashing out. She also described examples of how dangerous automatic behaviours can be, such as when one lady stirred her boiling soup with her hand instead of a spoon, or incidences of automatic driving in the context of highway hypnosis.
David O’Regan then presented on his four main management strategies for automatic behaviour. The first controlling the symptoms of narcolepsy via medication optimisation, sleep hygiene and managing stress and anxiety. The second is encouraging people to stop and sleep when they feel tired, where possible. The third is to help people develop alternative habits so that their automatic behaviours are perhaps less intrusive and debilitating. The final area was keeping active. It was revealing to see that in a show of hands, the vast majority of people with narcolepsy at the conference experienced automatic behaviours, but barely anyone had been asked about them by their clinicians. Teya and David both drew on a paper by Morandin and Bruck.
Shane Keenan gave a heart-felt description of his journey with narcolepsy following an autoimmune response to the Pandemrix swine flu vaccine. culminating in his retirement from front-line NHS work in 2016, after 34 years’ NHS service. He talked about how helpful his dog has been as a support and companion. The power of dogs to bring light during difficult times has been a recurrent theme throughout my work both within and beyond the realm of sleep.
My section covered the range interventions we offer at our sleep clinic to support young people with narcolepsy and their families. Jane Blackwell’s recent systematic review highlighted a range of psychosocial impacts of narcolepsy in young people. We have a skilled multidisciplinary team, so we are able to offer tailored support, including individual face to face and tele-therapy, school liaison, cognitive assessments and peer support groups. It was an honour to be able to share strategies that people have brought to the peer support groups and agreed could be shared more widely.
It was a fascinating day, and an honour to meet so many people at the forefront of the efforts to understand and better manage narcolepsy.
At this time of year, as the nights draw in, some people experience a drop in mood, reduced enjoyment of activities that they usually enjoy engaging in, and perhaps a sense of lethargy and sleepiness in the daytime. Their sleep may also be affected, either needing a longer sleep duration or experiencing more difficulties sleeping, giving rise to insomnia in some cases. Coupled with this, they might also experience cravings for sugary foods, and gain weight.
Our ability to generate relatively weak artificial light and stay indoors is a mixed blessing…
There is a link between how far away from the equator somewhere is, and the prevalence of SAD there. The further north or south of the equator you are, the higher the chance of being affected. It is believed that this is related to how much day length is shortened in winter. As days shorten, there is less chance of light exposure during the average day. Winters are also likely to be colder, limiting opportunities to engage in some activities and making it more tempting to plump for a duvet day. It can also mean that working standard hours means that none of your free time on weekdays is spent in daylight, an effect that can be compounded by working in buildings that do not let in much natural light.
Melatonin, the hormone that brings about sleepiness when light levels dim, ideally drops to very low levels in the day as a result of light exposure, and then gradually increases in the evening but the contrast between day and night is less extreme in the winter, and we might use more artificial lighting or screen-based media, meaning that the levels do not rise as they might naturally in the evening. The body clock has less information available to help it synchronise to day and night, and thus sleep-wake times can start to drift. We might also spend more time in bed but not asleep, eroding the clear relationship between bed and sleep, and confusing our mind and body about what it is supposed to do when we are in bed. As sleep quality suffers, we might reach the morning feeling less refreshed, and find it harder to get up, exacerbating the sleep difficulties and making bed an unpleasant place to be.
All of these factors can interact to make us feel worse during the winter. I experienced this first-hand when I lived in Aomori, Japan, which is by some metrics the snowiest place on earth. Winters were cold, dark and arduous, and whilst there was plenty to do, it was easy to get bogged down in the cold and when injuries were added to the mix, I found my mood could suffer.
Less light in winter means disrupted sleep and can link with lower mood
Fortunately, there are lots of things that can be done to fight the winter blues. The NICE Guidelines are based on the ones for depression, but it is important to take the seasonal variability of the condition into consideration. Some improvement in our sleep quality can be achieved with a few straightforward measures. Making sure we get at least 20 minutes exposure to daylight (ideally) or a SAD lamp in the morning as soon as possible after getting up helps to cue us into wakefulness, eradicates melatonin in our system and helps keep the body-clock synchronised to appropriate wake-sleep timings. It is best to do this out of bed, so whilst an alarm with light might help us to wake initially, it is important to aim to get out of bed as soon as possible after waking.
It can be tempting to go to bed earlier, and try to sleep, but if we are not sleepy-tired (as opposed to physically fatigued) this can be unhelpful as we are unlikely to sleep, and will probably simply end up more frustrated. Thus only going to bed when sleepy-tired is the best policy. It is best to aim to avoid all screen-based media for at least the hour before bedtime, and use red-shifting software such as f.lux on all devices where possible. Charging smart devices outside the bedroom can also eliminate the temptation to enter the whirlpool of a nocturnal social media check-in. If significant difficulties with sleep develop, it could be helpful to see a therapist who can conduct a through assessment and deliver treatment including CBT for Insomnia.
When we feel low, our activity levels can decrease, and this can become a vicious cycle as our lowered activity levels make us feel even lower. It can be tempting when in this situation to plan to wait until we feel motivated to engage in activities, but sometimes the motivation arises at the wrong times, or sometimes we don’t reach the point when we feel motivated. It can be helpful to make a plan in order to organise and gradually increase activities, aiming for a balance of routine, necessary and pleasurable activities. This approach is known as behavioural activation, and here is a video I made describing how to do it. Activities that can help us feel better include physical exercise, mindfulness, socialising and talking to people about how we feel.
Past difficult experiences that took place in the winter can also feed into SAD. Since it can be related to things in various areas of our lives, and treatment can take place in various ways, it can be helpful to see a therapist who can help to break down the causes and formulate what might be maintaining the situation, as well as work with you in order to try out management strategies and find out what is most effective for you.
If the low mood becomes so severe that it leads to thinking about or actually harming yourself or contemplating suicide, it is important to speak to your GP or if that is not possible, to go to your nearest A&E department for support.
● It is important to note that some people experience a summer variant of SAD in which the July and August are the most difficult months. This blogpost relates primarily to the winter variant.
My doctoral thesis research into tablet-computer based art interventions for people with dementia and their caregivers has been published. You can find the paper here, or here if you are on ResearchGate. I conducted the research with Paul Camic, Sabina Hulbert and Michael Heron. The research explored the impact of art-viewing on wellbeing, both quantitatively (with measures of happiness, wellness and interestedness built into the app) and qualitatively (through interviews I conducted with all the people who took part). As it was an exploratory study, we focussed on detailed evaluation of people’s experiences and as such the sample size was relatively small (12 pairs). The results suggest that art-viewing on a tablet computer can benefit the wellbeing of people with dementia, and have qualitative benefits for their relationships with their informal caregivers. On the path to finding those results, I learned a lot.
A recent study has found evidence to suggest that performing acts of kindness can reduce the degree to which people with social anxiety avoid situations they might find anxiety-provoking.
Sometimes in practice, I have found I feel somewhat hypocritical. An example of this was when I was a primary care mental health worker, helping people to work on their blood / needle / injury phobias.
