Chronic Fatigue Syndrome: Diagnosis And Treatment

Introduction

What is chronic fatigue syndrome?

Chronic fatigue syndrome, sometimes referred to as myalgic encephalomyelitis (CFS/ME), is a chronic (i.e. long-term) illness that can cause complex and disabling symptoms.

CFS/ME is often overlooked due to poor awareness and because its symptoms closely resemble those of other medical conditions. As a result, a prompt diagnosis is rarely achieved and it can take some time for effective treatments to be implemented.

With an improved understanding of CFS/ME, more timely diagnoses can be made and you can receive treatment sooner. This means you can manage your symptoms properly and avoid potential complications of the condition.

Symptoms of CFS/ME

CFS/ME is a multisystem disorder, in other words, it can affect several parts of the body to cause an array of symptoms. The most common of these include: ¹

• Fatigue and post-exertional malaise – this is extreme tiredness that does not improve, even after rest
• Sleep problems – this includes insomnia, waking up feeling unrefreshed, and hypersomnia
• Cognitive impairment, also known as ‘brain fog’
• Fibromyalgia and headaches
• Symptoms of dysautonomia – this could include dizziness, fast heart rate, heart palpitations, and digestive problems

Diagnosis of CFS/ME

Diagnostic criteria

Understanding of CFS/ME has changed over the years and, as a result, several diagnostic guidelines have been used.

Oxford criteria, 1991

Cases of CFS/ME were confirmed using these criteria if all four points were relevant to the patient.

1. Fatigue is the primary symptom, and must be severe and disabling and affect physical and mental functioning
2. Symptoms are of definite onset, must have existed for at least six months, and be present for more than 50% of the time
3. Other symptoms must be reported, such as myalgia, and mood and sleep disturbances
4. Patients with a diagnosed fatigue-causing medical condition or disorders like schizophrenia, substance abuse, or eating disorder should be excluded

CDC criteria, 1994

The Centers for Disease Control and Prevention diagnostic criteria were developed in 1994 to provide a more comprehensive way of identifying cases of CFS/ME.

It stated that the patient must be experiencing severe fatigue for six months or more, along with at least four of the following symptoms:² 

• Headache of new type, pattern, or severity
• Multi-joint pain without swelling or redness
• Muscle pain
• Post-exertional malaise that persists for longer than 24 hours
• Significant impairment in short-term memory or concentration
• Sore throat, tender lymph nodes
• Unrefreshing sleep 

IOM criteria, 2015

It was later thought that the Oxford criteria was over-inclusive, meaning that treatment for CFS/ME could not be applied to those with severe symptoms.¹

Based on this, in 2015, the Institute of Medicine published a set of guidelines that re-defined CFS/ME, allowing healthcare providers to improve their understanding of the condition and give their patients accurate and timely diagnoses.

The three required symptoms include:

1. Fatigue – individuals will have experienced a significant decline in their ability to take part in activities that they otherwise would have been able to engage in before the onset of the illness. This profound fatigue must have persisted for six months or more, be of new onset, and not related to exertion, nor relieved by rest
2. Post-exertional malaise – symptoms will worsen after physical, mental, or emotional exertion and relapse likely experienced for days, weeks, or even longer
3. Unrefreshing sleep – individuals will not feel well-rested even after a full night’s sleep

In addition to these three symptoms, at least one of the following must also be present:

1. Cognitive impairment – noticeable problems with thinking, memory, and information processing; exertion and stress may worsen these problems
2. Orthostatic intolerance – assuming and maintaining an upright posture may worsen symptoms, or cause dizziness, fainting, and nausea³

Differential diagnosis

There is no specific diagnostic test for CFS/ME, so a diagnosis is usually made upon exclusion of other fatigue-causing disorders.

Some of the other conditions that CFS/ME has a lot of clinical overlap with include:^1,2

• Addison’s disease
• Multiple sclerosis
• Rheumatoid arthritis
• Sjögren’s syndrome
• Systemic lupus erythematosus
• Coeliac disease
• Vitamin deficiencies
• Sleep apnoea
• Malignancy 

Diagnostic tests

Although there is no single test that will confirm whether or not you have CFS/ME, you may undergo certain tests to help rule out other disorders.

For example, a blood test that measures your complete blood count can help to exclude iron-deficiency anaemia. In addition, a thyroid function test can reveal whether you have hypothyroidism (underactive thyroid), a condition that is strongly associated with fatigue.

More specific tests that detect antinuclear antibodies or tissue transglutaminase testing are useful for excluding autoimmune conditions like systemic lupus erythematosus and coeliac disease. 

Comorbidities

Between 75% and 80% of patients with CFS/ME have a diagnosis of at least one other disorder. These are termed comorbidities, the most common of which include:⁴

• Ehlers-Danlos syndrome (EDS)
• Postural orthostatic tachycardia syndrome (POTS) 
• Mast cell activation syndrome (MCAS) 
• Irritable bowel syndrome (IBS)

Generally, the more severe your symptoms, the more likely you are to have comorbidities which can further complicate diagnosis and treatment of CFS/ME.⁴

Treatment of CFS/ME

Currently, there is no cure for CFS/ME so treatment is focused on helping you manage your symptoms as best as possible. Treatment options include various non-pharmacological and pharmacological approaches as well as alternative therapies. 

Non-pharmacological methods

Cognitive behavioural therapy (CBT) and graded exercise therapy (GET)

Cognitive behavioural therapy (CBT) is a form of talking therapy that encourages you to think about how your thoughts and feelings (‘cognitive’) and actions (‘behavioural’) work together to control how you feel and act. This type of treatment helps you to identify how attitudes towards certain activities can lead to you behaving in a way that will ultimately cause you to feel more fatigued. Working with a therapist, CBT can help you to change your outlook on your CFS/ME.

For example, rather than thinking “I’m never going to get better, or be able to enjoy the things I used to”, you can start to recognise that there are techniques to help you control your symptoms and that, in time, your symptoms could improve or even disappear completely.

Graded exercise therapy (GET) involves increasing your level of physical activity to improve overall function. The main disadvantage of this treatment method is that exercise may exacerbate your symptoms, therefore any physical activity must be introduced gradually to avoid a relapse.² 

Research from a randomised trial found that both CBT and GET reduced fatigue and better physical function, as well as depression and anxiety scores in patients with CFS/ME.⁵ 

Energy conservation

In CFS/ME you will likely have a limited amount of energy that you can use to complete certain tasks. The ‘spoon theory’ is a helpful metaphor to describe this limited amount of energy associated with CFS/ME and several other chronic conditions.

According to the ‘spoon theory’, depending on your sleep quality the night before, you will wake up with a certain number of ‘spoons’, for example, following a good night’s sleep you might have 12 spoons. Certain tasks will use more spoons (energy) than others (e.g. brushing your teeth may use just one spoon, while going to work uses five or six spoons).

You will need to manage your tasks based on how many spoons you have available that day. This is known as energy conservation. You may have to sacrifice some tasks, like going shopping or seeing friends, if you don’t have enough spoons, as a spoon deficit could cause a ‘crash’; this is a period when your symptoms worsen.

Energy conservation is sometimes referred to as ‘pacing’ as you need to establish a balance of rest and activity to avoid ‘crash’ periods. Keeping a symptom diary can help you identify and thus avoid activities that lead to a worsening of your CFS/ME.⁶ 

Lifestyle modifications

Good sleep hygiene is recommended for symptoms like insomnia and hypersomnia. According to the US Centers for Disease Control and Prevention, this involves:

• Adopting a consistent routine – try to go to bed and get up at the same time
• Avoid use of electronic devices close to bedtime – the blue light emitted from these devices can stimulate your brain and keep you awake
• Avoid large meals, caffeine, and alcohol close to bedtime
• Make sure your bedroom is quiet, dark, and at a suitable temperature 

Dietary changes, such as avoiding inflammatory foods, may provide relief of gastrointestinal symptoms. A gluten-free diet is recommended if you also have coeliac disease.

Pharmacological methods

Your doctor may recommend medications to target specific symptoms associated with CFS/ME as outlined below. 

Alternative therapies

You may find treatments such as acupuncture, herbal supplements, and nutritional therapies useful for managing your symptoms. There is currently no formal medical evidence to prove their effectiveness and the benefits of complementary medicine are controversial, but many patients find they are worth trying. 

Summary

CFS/ME is a long-term, multisystemic disorder, the main symptom of which is extreme fatigue. The diagnostic criteria have been updated multiple times, and you must fulfil certain requirements to be diagnosed with the condition. CFS/ME is also diagnosed by ruling out other disorders that cause fatigue.

Finally, although there is currently no cure for CFS/ME, there are several lifestyle modifications and treatment methods that can help manage symptoms. These include cognitive behavioural therapy (CBT) and graded exercise therapy (GET), as well as using medicines to address certain symptoms, such as pain and orthostatic intolerance.