This post is by associate Triage Practitioner, and guest blogger, Matthew Savage
Chronic Fatigue Syndrome (CFS) is a long-term condition that has a variety of symptoms. It is a condition that leads to extreme tiredness, but there is still uncertainty over what the cause is. Confusion exists as to the root cause, with many suggesting it could be characterised as a psychological illness, but others suggest it is caused by infection, immune system dysfunction or an imbalance in hormones. Others have denied its existence altogether, despite the fact it is estimated that 17-24 million people worldwide suffer from CFS or myalgic encephalomyelitis (ME), another term for the condition (Centre for Disease Control, 2019). Because of this confusion, CFS is a fascinating condition that needs further exploration.
CFS - Does it exist?
There are no defined biomarkers to test for CFS but the condition is diagnosed via a process of exclusion. In the medical model we need biomarkers to diagnose a condition, so this has meant that the condition has remained ambiguously defined for many years. In the NICE guidelines, the condition was defined as a valid condition in 2007, despite studies and evidence suggesting the existence of such a condition as far back as the 1980s. It was originally seen purely psychological and thus, was treated as a mental health disorder. However, changes to the NICE guidelines has meant that those individuals suffering from CFS/ME were finally acknowledged, allowing more accurate diagnosis and better-defined care. The change in guidelines led to a reduction in time that symptoms must be present for, changing the definition from 6 months to 6 weeks for adults (NICE, 2007) and has led to further research into the condition.
What are the proposed core symptoms?
As noted, there is still no definitive symptom or cause defined for CFS/ME. However, the following symptoms are seen as the most common:
- Debilitating fatigability – Fatigue that is not caused by excessive cognitive, physical, emotional, or social exertion and is not significantly relieved by rest. The degree of functionality is reduced by a “sick or flu-like” fatigue. Fatigability may mean that people have low energy, cognitive fatigue and rapid muscle fatigue that can affect strength or stamina.
- Post-exertional symptom exacerbation – After exercise or other physical exertion, those suffering from CFS may have a delay in onset of fatigue by hours or days that is disproportionate to the activity completed. An activity that may cause slight tiredness in most people, such as visiting the supermarket and loading the car, may cause extreme fatigue for days in someone who suffers from CFS.
- Unrefreshing sleep – Sleep, one of the most important things our bodies need for recovery, does not refresh CFS sufferers like it should. CFS often leads to patients feeling exhausted, flu-like and stiff on waking, caused by broken or shallow sleep, altered sleep patterns or hypersomnia.
- Cognitive difficulties (brain fog) – Problems with word-finding, temporary dyslexia or dyscalculia (poor understanding of numbers), slurred speech, slowed responsiveness, short term memory problems and confusion can all be experienced on a regular basis by those suffering from CFS.
- Additional symptoms – Though not classed as the most common, other symptoms can include orthostatic intolerance and autonomic dysfunction (including dizziness, palpitations, fainting, nausea on standing or sitting), temperature hypersensitivity eg sweating, chills, hot flushes, neuromuscular symptoms such as twitching, Flu like symptoms such as sore throat, tender glands, nausea, intolerance to alcohol and certain foods and chemicals, heightened sensory sensitivity or pain, including pain on touch such as myalgia.
Prognosis and theories of the cause
Those who experience CFS often experience symptoms for between 2-20 years, with a median duration of 8 years (Necul et al, 2011). Depending on the severity of symptoms, sufferers may be able to hold down a job with mild symptoms or maybe bed-bound most of the time when experiencing severe symptoms. Symptoms can fluctuate day by day and 40% of those suffering from CFS will see improvement across their life span. However, the condition is very difficult to diagnose as previously stated, particularly due to the comorbidity of other conditions with CFS, and very few people fully recover. For example, migraines and irritable bowel syndrome (IBS) are very common in those with CFS, as well as depression and anxiety, but it is unclear whether these conditions are the cause or a product of the condition. High levels of psychological stress, trauma and suffering from a virus are all seen as the most likely causes of CFS. It is thought that these triggers, coupled with predisposing factors (such as high achieving or overly caring personality traits) can lead to prolonged bed rest, stress and a “boom or bust” effect, whereby sufferers become accustomed to the fatigue they have experienced following a trigger (Harvey and Wessely, 2009). Other theories build upon this notion, suggesting that chronic stress leads to adrenal gland dysfunction, which leads to reduced production of cortisol, the bodies stress hormone. Often said to be the cause of many chronic conditions when at high levels for too long, a reduction in the production of cortisol can also cause problems, leading to chronic fatigue and an inability to mobilise, the main symptom of CFS. Finally, Sarafino (2012) provides further support for the above ideas, suggesting that the body will mobilise defences against a stressor prior to the onset of CFS, leading to a high state of arousal for a prolonged period of time, with high levels of cortisol in circulation. This then leads to the body spending its energy on defending against a stressor, reducing the availability of resources and leading to a collapse in normal function of cortisol and other immune functions. This collapse leads to CFS symptoms. However, others suggest that 65% of CFS sufferers have perfectly normal cortisol levels (Cadegiani et al, 2016) and so low cortisol levels may be a consequence of CFS and not a cause, forcing the body to rest more (Morris et al, 2017). Once again, these contradictions show how difficult it is to define and treat CFS.
Conclusion and future treatment
As well as Cortisol, the production of other hormones have been shown to be altered in those with CFS. Disfunction of the hypothalamic pituitary adrenal (HPA) axis is again the focus of study, leading to a delayed awakening response in those with CFS (Roberts et al, 2018). Mitochondrial dysfunction may also be a cause of the condition, whereby sufferers expend energy quicker than normal and our cells responsible for energy production are not functioning correctly. Finally, neuroinflammation is also being heavily researched, with a focus on finding biomarkers that are different in CFS patients. With so many avenues being explored, it is hoped that confusion around CFS could soon be solved, leading to better diagnosis, treatment and prognosis. For future treatment however, it is key that patients are treated as individuals, and all of the above are examined. Previously, CBT therapy, Graded Exercise Therapy (GET) and Pacing (activity management) were the main treatments as it is vital that patients are taught how to manage their condition. Management plans may focus on energy management principles such as knowing limits of energy expenditure and psychological therapies are still vital in supporting patients with the condition. CFS is still a confusing condition which requires all aspects of the biopsychosocial model to be considered. But we are getting closer to finding the cause of the condition, one step at a time.
About Matt Savage
Matthew Savage is an associate Triage Practitioner, has an MSc in Psychology, is a qualified personal trainer, and has worked within the field of cognitive rehabilitation for 5 years. He is an FA qualified football coach, with a keen interest in moral behaviour and wellbeing within team sports.
References
Cadegiani, F. A., & Kater, C. E. (2016). Adrenal fatigue does not exist: a systematic review. BMC endocrine disorders, 16(1), 48. https://doi.org/10.1186/s12902-016-0128-4
Centers for Disease Control. (2019). What is ME/CFS? Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
Harvey SB, Wessely S. (2009). Chronic fatigue syndrome: identifying zebras amongst the horses. BMC Med. 7: 58-10.1186/1741-7015-7-58.
NICE guidelines (2007). Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. London
Nacul LC, Lacerda EM, Pheby D, et al. (2011). Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care. BMC Med. 2011;9:91. Published 2011 Jul 28. doi:10.1186/1741-7015-9-91
Sarafino EP. (2012). Health Psychology: Biopsychosocial Interactions. Wiley. USA.