The conundrum of chronic fatigue syndrome

Patients with chronic fatigue syndrome (CFS) constantly experience extreme tiredness despite sleeping well and drinking a lot of coffee. CFS is an impairment that is a challenge to diagnose since there are no specific symptoms or tests to conclusively pinpoint the condition. [https://www.cdc.gov/me-cfs/about/index.html] This leads to patients feeling that they are left to fend for themselves.

“There is little data on CFS in Malaysia, not because it does not exist here but because there is low awareness among the general public. Because of this, few people know to seek treatment for it, leading to it being under-reported and poorly understood,” said Dr Serena In, clinical psychologist and Head of Psychology Department at IMU University’s School of Medicine.

She noted that if patients present with prolonged and unexplained fatigue that does not improve with rest, they may have CFS. CFS, also known as myalgic encephalomyelitis (ME), has no known cause. CFS has been known to emerge following viral infections, but it is not linked to any particular infection. Patients may also have related factors that may not be causative such as hormonal changes due to menopause, inflammatory diseases like arthritis, and psychological conditions like depression.

CFS-related symptoms that may be reported by patients include fatigue that is not relieved with rest or sleep, difficulty concentrating, joint and muscle pain without exertion, swelling or redness, muscle weakness, digestive problems such as irritable bowel syndrome, and hypersensitivity to smells, chemicals, light or noise. Here, Serena said that patients should be advised to closely observe their body for clues to improve their symptoms. They need to deal with their basic needs first including resting well and eating a balanced diet. They are likely to feel better in a few weeks if they consistently follow a healthy lifestyle.

Patients may require medical intervention if they do not feel better even after following a healthy lifestyle. Diagnosis of CFS is only feasible when the combination of symptoms is taken into consideration with a series of tests. Doctors can assist to identify or rule out other possible health issues including autoimmune conditions like lupus, burnout or depression. This may involve blood tests, journal-keeping to track symptoms, and weeks or even months of observation. Doctors may also refer patients to one or more specialists for further evaluation.

“CFS is different for everyone. It is a multifaceted condition, and while its severity can vary from person to person, being constantly fatigued, in pain or feeling unwell can be debilitating,” said Serena. Some patients have also reported not being well understood by their own physician, employers, or loved ones when describing their symptoms. This can be especially tough for those who are used to being active and social but are now forced to cut back on certain responsibilities, physical activities, and social gatherings, she added.

While there is no specific treatment or cure for CFS, pain management as well as lifestyle adjustments are essential in relieving symptoms. Serena also suggested that patients may be referred to a clinical psychologist or counsellor for support in processing the vast changes to their life.

“For some, the process of adjusting to life with CFS can feel like grief, as it may mean losing the healthier version of yourself that you used to be. Your therapist can also help to address your fears for the future, as many patients may also feel a sense of hopelessness. It is possible to work through acceptance and still lead a meaningful and fulfilling life after having learnt to effectively manage these symptoms on a daily basis,” she explained.

However, it is important to emphasize to patients to not give up hope, she said. While CFS is challenging to diagnose and there is no quick fix, but it is important to encourage and support patients in their efforts to find a way to cope. A supportive team of doctors to manage their symptoms along with a therapist to process the unpredictable challenges, can vastly improve their quality of life, said Serena.

Serena helped to raise awareness of CFS in conjunction with the International ME/CFS Awareness Day, which is celebrated yearly to highlight the impact of CFS on day-to-day life and empower patients to seek help.