What is Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a complex and debilitating disorder characterised by extreme fatigue that does not improve with rest and cannot be explained by an underlying medical condition. CFS often comes with a mix of symptoms that make daily life feel like an uphill climb.
How common is CFS?
Chronic Fatigue Syndrome is more prevalent than many realize, affecting between 0.4% and 1% of the population. In Australia, this could mean up to 250,000 people are living with ME/CFS, though many remain undiagnosed because of the complexity of the condition. While anyone can develop CFS, it’s most frequently diagnosed in adults aged 20 to 40, with women being more commonly affected.
What are the symptoms?
For those with Chronic Fatigue Syndrome, the symptoms can be life-altering. CFS is not just about feeling tired; it involves a range of symptoms that can vary from person to person. These may include:
- Severe, unexplained fatigue
- Sleep disturbances
- Muscle and joint pain
- Brain fog
- Sore throat and tender lymph nodes
- Headaches of a new type, pattern, or severity
- Dizziness that worsens with standing or sitting upright
- Sensitivity to light, sound, or touch
- Post-exertional malaise (PEM), where symptoms worsen after physical or mental exertion
What are the risk factors?
The exact cause of Chronic Fatigue Syndrome remains a mystery, but it’s likely a combination of factors. Some of these may include:
- Infections: Viral or bacterial infections like Epstein-Barr virus or Lyme disease have been linked to the onset of CFS in some cases.
- Immune System Changes: Abnormal immune responses could be a contributing factor.
- Hormonal Imbalances: Imbalances involving the hypothalamus, pituitary glands, or adrenal glands may play a role.
- Genetics: Family history may point to a genetic predisposition.
- Stress and Trauma: Both physical and emotional stressors have been identified as potential triggers for CFS.
How is it diagnosed?
There is no definitive test for CFS, so diagnosis often involves ruling out other conditions with similar symptoms. A healthcare provider will review your medical history, perform a physical examination, and may order tests to exclude other causes of fatigue and related symptoms.
Typically, a diagnosis is made after you’ve experienced severe fatigue and other symptoms for at least six months, with no other clear explanation.
What can I do?
If you think you might have CFS, it’s important to seek medical advice. Keeping a journal of your symptoms, noting how often they occur and their intensity, can be helpful when speaking with your healthcare provider. It’s also a good idea to track your medications, significant life events, and any changes in your health.
Maintaining a balanced lifestyle is key. Gentle exercise (as tolerated), a nutritious diet, and good sleep hygiene can help manage symptoms. Mindfulness practices and activities that bring you joy can also contribute to overall well-being.
What does treatment involve?
While there is no cure for Chronic Fatigue Syndrome, treatment focuses on symptom management and improving quality of life. A tailored, multidisciplinary approach is often the most effective. Treatment options may include:
- General Practitioner (GP): Your GP will likely be your primary care coordinator.
- Specialists: Depending on your symptoms, you may be referred to neurologists, immunologists, or rheumatologists.
- Physical Therapy: Gentle, supervised exercise can help maintain mobility and reduce pain.
- Cognitive Behavioral Therapy (CBT): CBT can assist in managing the emotional toll and developing coping strategies.
- Medications: While no specific drugs treat CFS, medications may be prescribed for pain, sleep issues, or mood disorders.
What does the future look like?
The course of Chronic Fatigue Syndrome varies widely. Some people gradually improve over time, while others may continue to experience significant challenges. Early diagnosis, coupled with a coordinated treatment plan, can help improve outcomes. Learning to manage symptoms and receiving ongoing support from healthcare providers and loved ones are crucial for living well with CFS.
- ME/CFS and Lyme Association of WA, Inc. www.facebook.com/ME.CFS.Western.Australia/
- ME/CFS Australia: https://mecfs.org.au/
- Emerge Australia: https://emerge.org.au/
- Solve ME/CFS Initiative: https://solvecfs.org/
A self-guided management guide is available from Emerge Australia to help you understand and manage your condition. The guide can be found here: https://emerge.org.au/guide.
Where can I get help for CFS?
If you or someone you care about has Chronic Fatigue Syndrome, support is available.
The Neurological Council’s team of community neurological nurses can assist people living with CFS through education, support, and coordination of referrals to key health practitioners.
For more information, please visit: https://www.ncwa.com.au/
Our friendly team can be contacted Monday to Friday, from 8.30 am to 4.30 pm.
Phone: 1800 645 771 (free call) or 6457 7533.
Email: hello@ncwa.com.au
Self-referrals: are welcome using our online referral form: https://www.ncwa.com.au/help-for-you/referrals