Category Archives: Chronic Illness
ME/CFS Awareness Leaflet
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
Boulazreg, S., & Rokach, A. (2020). The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Multidisciplinary Digital Publishing Institute. In Healthcare, Vol. 8(4), p. 413. https://pubmed.ncbi.nlm.nih.gov/33092097/
Castro-Marrero, J., Faro, M., Aliste, L., Sáez-Francàs, N., Calvo, N., Martínez-Martínez, A., Fernandez, T., & Alegre, J. (2017). Comorbidity in chronic fatigue syndrome/myalgic encephalomyelitis: a nationwide population-based cohort study. Psychosomatics, 58(5), 533-543. https://doi.org/10.1016/j.psym.2017.04.010
Centre for Disease Control and Prevention. (2018, July 12). What is ME/CFS?. https://www.cdc.gov/me-cfs/about/index.html
Centre for Disease Control and Prevention. (2019, November 19). Presentation and Clinical Course of ME/CFS.https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/index.html
Charoenngam, N., Shirvani, A., & Holick, M. F. (2019). Vitamin D for skeletal and non-skeletal health: What we should know. Journal of clinical orthopaedics and trauma, 10(6), 1082-1093. https://doi.org/10.1016/j.jcot.2019.07.004
Collins English Dictionary. (2012). Encephalo. https://www.dictionary.com/browse/encephalo-?s=t
Collins English Dictionary. (2012). Myalgia. https://www.dictionary.com/browse/myalgia?s=t
Collins English Dictionary. (2012). Myelitis. https://www.dictionary.com/browse/myelitis?s=t
Cortes Rivera, M., Mastronardi, C., Silva-Aldana, C. T., Arcos-Burgos, M., & Lidbury, B. A. (2019). Myalgic encephalomyelitis/chronic fatigue syndrome: a comprehensive review. Diagnostics, 9(3), 91.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6787585/
Davenport, T. E., Stevens, S. R., VanNess, M. J., Snell, C. R., & Little, T. (2010). Conceptual model for physical therapist management of chronic fatigue syndrome/myalgic encephalomyelitis. Physical therapy, 90(4), 602-614. https://doi.org/10.2522/ptj.20090047
Friedman, K. J. (2019). Advances in ME/CFS: Past, present, and future. Frontiers in pediatrics, 7, 131.https://doi.org/10.3389/fped.2019.00131
Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., & Komaroff, A. (1994). The chronic fatigue syndrome: a comprehensive approach to its definition and study. Annals of internal medicine, 121(12), 953-959. https://doi.org/10.7326/0003-4819-121-12-199412150-00009
Geraghty, K., & Blease, C. (2019). Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter. Disability and rehabilitation, 41(25), 3092-3102. https://pubmed.ncbi.nlm.nih.gov/29929450/
Haslam, C., Jetten, J., Cruwys, T., Dingle, G., & Haslam, S. (2018). The New Psychology of Health. Routledge.https://doi.org/10.4324/9781315648569
Jason, L. A., Brown, M., Brown, A., Evans, M., Flores, S., Grant-Holler, E., & Sunnquist, M. (2013). Energy conservation/envelope theory interventions. Fatigue: biomedicine, health & behavior, 1(1-2), 27-42.https://doi.org/10.1080/21641846.2012.733602
Jason, L. A., Roesner, N., Porter, N., Parenti, B., Mortensen, J., & Till, L. (2010). Provision of social support to individuals with chronic fatigue syndrome. Journal of clinical psychology, 66(3), 249-258.https://doi.org/10.1002/jclp.20648
Kindlon, T. (2011). Reporting of harms associated with graded exercise therapy and cognitive behavioural therapy in myalgic encephalomyelitis/chronic fatigue syndrome. Bulletin of the IACFS/ME, 19(2), 59-111.https://www.researchgate.net/publication/216572185_Reporting_of_Harms_Associated_with_Graded_Exercise_Therapy_and_Cognitive_Behavioural_Therapy_in_Myalgic_EncephalomyelitisChronic_Fatigue_Syndrome
Loy, B. D., O’Connor, P. J., & Dishman, R. K. (2016). Effect of acute exercise on fatigue in people with ME/CFS/SEID: a meta-analysis. Medicine and science in sports and exercise, 48(10).https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5026555/
Marks, D., Murray, M., & Vida Estacio, E. (2018). Health Psychology (5th ed.). SAGE.
National Health Service. (2017, May 16). Diagnosis Chronic fatigue syndrome (CFS/ME). https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/diagnosis/
National Institute for Health and Care Excellence. (2007, August 22). Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management Clinical guideline [CG53].https://www.nice.org.uk/guidance/cg53/chapter/Introduction
National Institute for Health and Care Excellence. (2020, November). Myalgic encephalomyelitis
(or encephalopathy) /chronic fatigue syndrome: diagnosis and management. https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-7
Park, J. H., Moon, J. H., Kim, H. J., Kong, M. H., & Oh, Y. H. (2020). Sedentary Lifestyle: Overview of Updated Evidence of Potential Health Risks. Korean Journal of Family Medicine, 41(6), 365-373.https://doi.org/10.4082/kjfm.20.0165
Rao, Q., Zhang, Z., Lv, Y., Zhao, Y., Bai, L., & Hou, X. (2020). Factors Associated With Influential Health-Promoting Messages on Social Media: Content Analysis of Sina Weibo. JMIR medical informatics, 8(10), e20558.https://medinform.jmir.org/2020/10/e20558
Sentinel Healthcare. (2020). Chronic Fatigue Syndrome & ME. https://www.sentinelhealthcare.co.uk/patients/chronic-fatigue-syndrome-me/
Spandler, H., & Allen, M. (2018). Contesting the psychiatric framing of ME/CFS. Social Theory & Health, 16(2), 127-141. https://doi.org/10.1057/s41285-017-0047-0
Sweetman, E., Noble, A., Edgar, C., Mackay, A., Helliwell, A., Vallings, R., Ryan M., & Tate, W. (2019). Current research provides insight into the biological basis and diagnostic potential for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Diagnostics, 9(3), 73.https://pubmed.ncbi.nlm.nih.gov/31295930/
Wade, D., & Halligan, P. (2017). The biopsychosocial model of illness: a model whose time has come. SAGE.https://doi.org/10.1177%2F0269215517709890
White, P. D., Goldsmith, K., Johnson, A. L., Chalder, T., & Sharpe, M. (2013). Recovery from chronic fatigue syndrome after treatments given in the PACE trial. Psychological medicine, 43(10), 2227-2235.https://doi.org/10.1017/S0033291713000020
Wilson, R. L., Paterson, K. B., McGowan, V., & Hutchinson, C. V. (2018). Visual aspects of reading performance in Myalgic Encephalomyelitis (ME). Frontiers in psychology, 9, 1468. https://doi.org/10.3389/fpsyg.2018.01468
Wirth, K., & Scheibenbogen, C. (2020). A Unifying Hypothesis of the Pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Recognitions from the finding of autoantibodies against ß2-adrenergic receptors. Autoimmunity Reviews, 19(6), 102527.https://doi.org/10.1016/j.autrev.2020.102527
ME/CFS An introduction and how the medical industry has failed sufferers.
What is Chronic Fatigue Syndrome?
Chronic Fatigue or ME/CFS is a complex multi-system illness, characterised by debilitating fatigue, body wide pain, and exercise intolerance where there are no bio-medical markers. It’s a spectrum disorder so some individuals are able to function with relative normality, attending work and social activities and at the other end of the spectrum, patients (need a better word – sufferers maybe?) may be completely housebound or bed bound and need additional care.
Why talk about it?
The #millionsmissing campaign – there are millions of people who are affected and because they cannot leave their house, they cannot integrate into society leaving them feeling forgotten and depressed with a complete lack of support. Language around ME/CFS consists of lazyitis, the yuppy flu and this language serves to further segregate those who are experiencing it. There is a huge need for more research and that starts with more awareness.
Who does it effect?
ME/CFS can affect children and adults alike but more commonly, it is seen in mid-teens, early twenties and mid-forties. It seems to affect more women than men – is this because it is less reported in men than it is with women?
Papers/sources for referencing:
Age of onset: https://meassociation.org.uk/about-what-is-mecfs/ and https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-014-0167-5
Age of onset and general ME/CFS description: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6370741/
Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management:
https://www.nice.org.uk/guidance/cg53/chapter/1-Guidance#diagnosis
What is ME/CFS?:
https://www.cdc.gov/me-cfs/about/index.html
Book: Health Psychology.
Vitamin d deficiency: https://bmjopen.bmj.com/content/7/11/e015296