ME Association New Free Leaflet – The Importance of Early & Accurate Diagnosis in ME/CFS

Dr Charles Shepherd, Hon. Medical Adviser, ME Association

Introduction

Dr Charles Shepherd

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a complex multisystem disease with a population prevalence of at least 0.2% to 0.4%.

It probably affects between 2 and 4 per 1,000 of the population and up to 265,000 people in the UK.

There is a wide range of severity at all stages of the illness. Around 25% are severely affected at some stage – being house-bound or bed-bound – and this can create additional challenges when making a diagnosis.

Many people experience a long delay in obtaining a formal diagnosis. A 2016 MEA website survey involving 656 respondents found that of those who were diagnosed by a doctor:

  • only 18 % were diagnosed within six months of the onset of symptoms.
  • 15% waited between 7 and 12 months.
  • 17% waited between 13 and 24 months.
  • 26% waited between two and five years.
  • 19% waited more than five years.

The remainder could not remember or had never received confirmation of the diagnosis from a doctor.

Fatigue and Chronic Fatigue

Fatigue is a very common symptom and some people with chronic fatigue are being misdiagnosed with ME/CFS when they have another, sometimes perfectly treatable, explanation.

ME/CFS is a distinct clinical entity with a characteristic set of core symptoms. It should not be used as a diagnostic label for people with unexplained chronic fatigue.

Why is making an early and accurate diagnosis so important?

The New FREE 6-Page Leaflet
  • To reduce the likelihood of ME/CFS taking a more prolonged and severe course.
  • To check for other conditions that can present with similar symptoms.
  • To prevent harmful approaches to management such as ‘working through fatigue’ and inappropriate exercise programmes.
  • To organise a comprehensive management plan involving activity and energy management; symptom relief; information and support relating to education, employment and sickness benefits.

Topics discussed in this leaflet, include:

  • Taking a good clinical history
  • Diagnostic criteria and characteristic core symptoms
  • Physical examination
  • Baseline investigations
  • Further assessment and investigation
  • Differential diagnosis
  • Timescale
  • Children and Adolescents
  • Specialist referral
  • Further information and research references

Diagnostic criteria and characteristic core symptoms

Extract

Symptoms characteristically fluctuate in severity, throughout the day, day to day, and from week to week. The pattern of symptoms, along with severity, may change over time. People will often describe a pattern of ‘good days’ and ‘bad days’.

The New FREE 6-Page Leaflet

Overall, there should a substantial (50% or more) and sustained reduction in both physical and cognitive/mental activity.

This results in a substantial reduction in the person’s ability to carry out pre-illness levels of occupational, educational, social, or personal activity.

Where the diagnosis has been delayed the clinical presentation is likely to be more complex with a wider range of symptoms and symptom severity.

Exacerbations and relapses are commonly caused by infections, trauma, and other immune system stressors. This can include a pre-menstrual or menstrual exacerbation in some cases.

People with severe ME/CFS are  often very sensitive to bright light, noise, movement, touch, and smell. They may have substantial neurological impairments including atypical seizures , unwanted muscle activity/myoclonus and speech problems. Swallowing difficulties may require nasogastric (tube) feeding.

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