Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is a chronic disease that is characterised by disabling fatigue, pain, exertion intolerance, cognitive challenges and sleep problems (Marks et al., 2018), and the leaflet has been designed for anyone who is experiencing chronic fatigue. The leaflet is tri-fold and double sided, (refer to table 1 for an itemised rationale of the leaflet components) with a different topic on each page which allows it to act as a guide for the patient to follow. Reduced cognitive abilities can make it difficult for an ME/CFS patient to read large amounts of text (Wilson et al., 2018) thus, the text is spaced out well, to ensure it is easier to read, without compromising the level of information. Text is purple which mimics the ME Association brand colours so it is easier to recognise upon searching. Images are cartoon based to give the leaflet a softer tone as much of the imagery around ME/CFS is melancholic and positive message framing has been shown to be more effective at encouraging someone to take action (Rao et al., 2020). This health topic has been chosen because more exposure of this illness may result in more individuals becoming aware of the illness and subsequently getting the treatment they need, and the purpose of the leaflet is to encourage someone to go and see their doctor (GP) if they have symptoms.
ME/CFS is a complex illness and according to the National Institute for Health and Care Excellence (NICE, 2007), it affects at least 264,000 people in the UK. The history surrounding this potentially disabling disease is one of controversy, both within the medical field and with the wider public in general; it was initially assumed to be psychological in nature (Cortes Rivera et al., 2019), however, there is mounting evidence of a biological nature for the disease (Wirth & Scheibenbogen, 2020). Although the root cause is largely unknown, it may be related to genetics, trauma, physical or mental or viral complications (Boulazreg & Rokach 2020). ME/CFS is a spectrum disorder, the level of severity that an individual experiences can differ greatly from one person to another (Friedman, 2019). At the mild end, an individual may be able to work and carry out daily living activities, but with difficulty. At the severe end, a patient may be unable to leave their home and they may need constant care (CDC, 2019). What links the two ends of the spectrum are the characteristic symptoms as discussed in the introduction, (National Health Service, 2017). To understand the complexity of the disease and thus the need for a multi-disciplinary treatment plan, it is prudent to consider the definition: myalgic: pain; encephalo: relating to the brain; myelitis: spinal cord inflammation (Collins English Dictionary, 2020) and chronic fatigue syndrome which refers to the general state of the individual (Fukuda et al., 1994). There is no cure but treatment aims to ease symptoms and improve them over time (Spandler, & Allen2018).
The leaflet demonstrates a number of areas for a patient to start making progress towards a diagnosis and management of the illness . It demonstrates the biopsychosocial model of health: as a multi-faceted disease, the treatment must be varied (Sweetman, et al., 2019). There is some dispute around the use of the biopsychosocial model in treating ME/CFS (Geraghty & Blease 2019) but misuse of the model is what produces issues (Wade &Halligan 2017). However, the psychosocial impact of the disease cannot be ignored, by not addressing this, the patient could remain in a vicious cycle of ill health. Co-morbid issues relating to ME/CFS are: anxiety, depression and social isolation for a variety of reasons, including, in some cases, an inability to leave the house, a loss of functioning and a loss of identity and these issues can yield physical responses, potentially exacerbating symptoms (Boulazreg & Rokach 2020, & Marks et al., 2018). If treatment is sought to reduce symptoms and improve quality of life then addressing the patient holistically at the same time as biologically is important.
Table 1
| Leaflet Page | Rationale |
| Are you struggling with debilitating fatigue? | Large text is used, mentioning fatigue to capture the attention of someone who might be suffering from fatigue. Statistics are included to highlight the prevalence of the disease but references are not included as citations can make text more difficult to read. The patient has been signposted to services throughout, including their GP, a specialist NHS service, and a specialist charity, and there are pointers for them to conduct their own research. |
| See your GP. | Many diseases produce similar symptoms so it is important for the GP of the patient to rule out all other diseases. Vitamin D deficiency can also lead to fatigue, pain and weakness (Charoenngam et al., 2019). However, a patient may experience Vitamin D deficiency due to being less able to go outside so it may be co-morbid (Castro-Marrero et al., 2017). |
| Pacing. | Research suggests treatment using graded exercise therapy and cognitive behavioural therapy (White et al., 2013) but this has been fiercely contested by the ME/CFS community as being ineffective and dangerous (Kindlon 2011), so much so that NICE has drafted a new policy to come into force in 2021 to eradicate these treatments (NICE 2020). As more research emerges, there is support for pacing as a treatment, to reduce the exacerbation of symptoms and potentially improve symptoms over time (Jason et al. 2013). This can be done in many ways: by incorporating regular rest periods throughout the day or by more specific physiological measures such as keeping the heart rate below the anaerobic threshold and resting if the heart rate rises (Davenport et al., 2010). |
| Ask for help. | Social support and connection are essential for positive health outcomes. (Haslam et al., 2018). Additionally, there is some evidence to show that having help at home, allowed for improvements in levels of fatigue and wellness. (Jason et al. 2010). |
| Physical Activity. | Physical activity may increase fatigue in patients with ME/CFS, (Loy et al., 2016) however, there are significant health risks of being sedentary (Park et al., 2020). Yoga, Tai Chi and Qui-Gong are gentler forms of exercise which may help to minimise the risk of symptom exacerbation. |
| Ask for a referral. | Sentinel Healthcare (2020) are a clinic who specialise in ME/CFS. The length of time for diagnosis can be 5 years (Geraghty & Adenjii 2019) thus awareness of the clinic may enable the patient to raise it with their GP for a more timely diagnosis. |
References
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