Introduction

A compelling new report has raised alarms over the critical need for significant improvements in the diagnosis and management of myalgic encephalomyelitis (ME) and long COVID within the UK's NHS and social care systems. This urgent call for action comes from the University of Exeter and is based on comprehensive data from the 'Count ME In' survey conducted by the ME Association.

Survey Findings

The survey revealed a staggering response from over 10,000 participants, highlighting widespread frustrations regarding delayed diagnoses, low satisfaction rates with specialist care, and the demand for better self-management resources. Alarmingly, only 6.9% of individuals with ME and 14.4% with long COVID reported their care experience as good-to-excellent. Some respondents reported waiting over a decade for a conclusive diagnosis, with a startling 70% suffering from moderate to severe lifestyle impacts that necessitated significant adjustments to their daily routines.

Call for Action

Professor Helen Dawes from the University of Exeter Medical School emphasized the parallels between the experiences of ME and long COVID patients, calling for timely diagnosis and enhanced support for these conditions. "Health professionals require more education, and patients need better access to specialist services and self-management resources,” she stated. The ongoing pressure on the NHS could be alleviated through innovative digital health solutions that empower patients and facilitate quicker diagnoses.

NICE Guidelines