What is ME∕CFS

NICE Guidance 2021 states that:


• is a complex, chronic medical condition affecting multiple body systems and its

pathophysiology is still being investigated

• affects everyone differently and its impact varies widely – for some people symptoms

still allow them to carry out some activities, whereas for others they cause substantial


• is a fluctuating condition in which a person's symptoms can change unpredictably in

nature and severity over a day, week or longer

• can affect different aspects of the lives of both people with ME/CFS and their families

and carers, including activities of daily living, family life, social life, emotional wellbeing,

work and education.”

  • Factors that exacerbate fatigue

    We find that there are various factors triggering and exacerbating fatigue symptoms. We explain the contribution of each factor in the video below, using a ‘fatigue pie’.

    We realise that no two fatigue patients are the same, and therefore no two personalised fatigue pies would look the same. Perhaps you feel that some of the factors described in the fatigue pie do not apply to you, and equally, you may think that some slices of the pie are more pronounced. Your personalised fatigue management should involve the factors that constitute your unique ME/CFS experience, and the coping strategies tailored to relieving those factors.

  • Symptoms and Diagnosis

    Symptoms of ME/CFS are:

    • Debilitating fatigue that is worsened by activity, is not a result of excessive cognitive, physical, emotional, or social exertion, and is not significantly relieved by rest.
    • Worsening of symptoms after activity (post-exertional malaise) can be delayed in onset, is disproportionate to the activity, and has a prolonged recovery time.
    • Unrefreshing sleep, and/or sleep disturbance, which may include flu-like symptoms.
    • Cognitive impairment (‘brain fog’), such as difficulty finding words, problems with memory, difficulty concentrating etc.

    To suspect ME/CFS, these symptoms should be lasting over 4 months for an adult and 3 months for children.

    Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management, NICE, 2021

    To receive an ME/CFS diagnosis, you would go through a medical assessment to exclude other conditions that may cause these symptoms, for example, inflammatory conditions such as rheumatoid arthritis and lupus, neurological conditions, such as multiple sclerosis, sleep disorders such as insomnia & narcolepsy, endocrine conditions such as thyroid dysfunction, mental health conditions such as depression, anxiety, bipolar disorder, anaemia, or active infectious diseases such as Lyme’s, HIV.

    In addition to the above symptoms, people with ME/CFS also usually experience muscle and/or joint pain, increased sensitivity to temperature, light, sound touch, intolerance to alcohol or other food, flu-like symptoms.

    No two ME/CFS patients will have the same symptoms and prognosis. While some people may make a full recovery, most patients with ME/CFS would need to adapt their lives to manage their condition in the long-term. Therefore, flare-ups are expected, and the severity of symptoms may fluctuate at any given time.

  • Stigma

    As a service, we acknowledge that ME/CFS patients may have long experienced disbelief and lack of understanding of their suffering, from healthcare professionals, family, and friends. We understand the bigger negative impact of this lack of recognition on their physical and emotional wellbeing, over and above the ME/CFS symptoms. Therefore, we endeavour to understand the journey a patient goes through until they start their treatment in our service and establishing a trustworthy working relationship is the first step in the therapies we offer.

  • Overlap with some other conditions

    The following conditions are often reported at the same time as ME/CFS:

    Fibromyalgia/persistent pain:

    • Pain that continues for more than 3 months after an injury / mechanical problem / initial onset, or even when sufficient time was allowed for healing / recovery 
    • Pain that occurs even when there is no injury, damage, or apparent trigger and even if scans or investigations come back as “normal”
    • Pain that can spread over more areas of the body than the original problem or include the whole body

    For more information on persistent pain, you can visit Versus Arthritis and Pain Toolkit.

    Irritable Bowel Syndrome (IBS): a digestive system disorder that causes abnormal bowel activity and/or sensitivity. For more information, please visit Guts CharityThe IBS Network.

    Restless legs syndrome: an irresistible urge to move legs. For more information, please visit The Sleep CharitySleep Foundation.

    Hypermobility: a heritable disorder of connective tissue, causing pain and laxity in multiple joints. For more information, please visit HypermobilityPain Toolkit.

    Postural Tachycardia Syndrome / Postural Orthostatic Tachycardia Syndrome (POTS): increased heart rate within 10minutes of standing, by 30bpm (in adults), lasts for more than 30s and with additional symptoms of light-headedness / dizziness on standing, disorientation/imbalance, fainting. It can be linked to hypermobility and also sympathetic nervous system over-activity. For more information please go to our page ‘POTS’ 

    Depression & Anxiety: there can be a link between ME/CFS and low or anxious mood. If you are struggling with your emotional wellbeing, this is likely to have a negative knock on effect on your ME/CFS symptoms and at the same time, ME/CFS symptoms would in turn cause low mood and anxiety. If you would like to seek help for low mood or anxiety, you can self-refer to your local IAPT, or speak to you GP. For information on self-help, please refer to our page on the role of emotions and our resource hub