Free Booklet: The Importance of Early & Accurate Diagnosis in ME/CFS

We are pleased to announce that this very popular free booklet has been completely updated and considers the recommendations from the 2021 NICE Clinical Guideline on ME/CFS. It is a useful resource for patients and their families as well as for healthcare professionals (HCPs) when ME/CFS is suspected and a diagnosis is required. We will be sending the booklet to HCPs with the Summer issue of ME Medical magazine and hope to embark on a wider NHS Primary Care awareness campaign later in the year.

INTRODUCTION

ME/CFS (myalgic encephalomyelitis or encephalopathy/chronic fatigue syndrome) is a complex multisystem disease with a probable population prevalence of 0.2% to 0.4%. It affects around 250,000 people in the UK.

There is a wide range of symptom severity and functional impairment at all stages of the illness. Around 25% of people are severely or very severely affected at some stage – being housebound or bed-bound. This can create additional challenges when making a diagnosis in relation to both their symptom profile and access to medical care.

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 2 and 5 years.
  • 19% waited more than 5 years.

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

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

  • To reduce the likelihood of ME/CFS taking a more prolonged and severe course.
  • To exclude other potentially treatable conditions that can present with similar symptoms.
  • To prevent harmful approaches to management such as ‘working through fatigue’ and inappropriate exercise programmes.
  • To quickly develop a comprehensive care and management plan involving activity and energy management; symptom relief; information and support relating to education, employment and sickness benefits.
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