Keeping Me Well - Cardiff and Vale University Hospital

Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS)

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a long-term fluctuating neurological condition that affects a number of body systems and causes a range of symptoms.

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The condition affects everyone differently, and its impact can vary widely. For some people their symptoms allow them to carry out a number of activities at work, education, within their community and at home, whereas for others their symptoms make it difficult to complete basic tasks. ME/CFS is fluctuating condition in which a person’s symptoms can change in nature and severity, and can come and go, over a day, week or longer.

The 2021 NICE (National Institute of Clinical Excellence) guidelines advise that ME/CFS should be suspected if:

  • a person has had a specific set of ongoing symptoms for a minimum of six weeks in adults or four weeks in children and young people.
  • the person’s ability to engage in occupational, educational, social or personal activities is significantly reduced from pre-illness levels.
  • symptoms are not explained by another condition.

The four main symptoms of ME/CFS are:

  • Debilitating fatigue – more than tiredness. Where the experience of feeling “physically drained” or “cognitively drained”, weak and ill are not improved by sleep.   
  • Post Exertional Malaise (PEM) or Post Exertional Symptom Exacerbation (PESE)*,
  • Unrefreshing sleep and/or sleep disturbance, and
  • Cognitive difficulties with thinking, concentrating, processing information and memory.

* Post-Exertional Malaise or Post Exertional Symptom Exacerbation (sometimes called ‘payback’) is where physical, mental, sensory and emotional activities, or a combination of these, can cause a significant worsening of symptoms including exhaustion, pain, sensitivities and cognitive impairment.

People can also experience an increase in their other symptoms. The impact may be felt immediately, but it usually causes deterioration 12-48 hours after exertion. Symptoms are not significantly improved by rest and recovery may take a long time – a day, a week or longer.

Other symptoms can include:

  • Dizziness, palpitations, fainting, nausea when standing or sitting upright from a reclining position.
  • Temperature hypersensitivity, or difficulty managing hot or cold environments, resulting in profuse sweating, chills, hot flushes, or feeling very cold.
  • Neuromuscular symptoms, including twitching, jerks or muscle spasms.
  • Flu-like symptoms, including sore throat, tender glands, nausea, chills, or muscle aches.
  • Intolerance to alcohol, or to certain foods and chemicals.
  • Heightened sensory sensitivity, including to light, sound, touch, taste, and smell.
  • Pain, including pain on touch, myalgia (muscle pain), headaches, eye pain, abdominal pain, or joint pain without acute redness, swelling or the collection of fluid (effusion).

The causes of ME/CFS are still being investigated although there is evidence that viral infections, surgery, emotional and physical trauma, and other factors can trigger the condition.

Cardiff and Vale University Health Board does not have a Specialist Service for ME/CFS but individuals living with the condition can access services that may support, and investigate specific symptoms. One service is the Live Well Rehabilitation Service that can support individuals living with ME/CFS manage their symptoms.

This website also has links that you can use to support management of some of the symptoms.

  • Try to manage your energy through fatigue management strategies. Try not to use more energy than you think you have, and don’t try to ‘push through’ symptoms. Click here for more support around fatigue management. Pushing through and increasing activity may produce PEM/PESE. A Graded Return to Exercise is not recommended.
  • Plan rest breaks as needed – this might mean making changes to daily routines: work, school, and other activities. Changes may include: what you do, how much you do, and how you do these activities.
  • Lifestyle changes around eating well, and smoking cessation, and reducing alcohol may help with some symptom management.
  • Stress management strategies may help some patients to better manage available energy levels.  Click here for useful strategies.

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