Tired of explaining

About this report

This report looks at the experiences of people with ME or CFS in Trafford and Greater Manchester. Over 1,000 people shared their experiences with us between April 2015 and Marc 2016. 

Key findings

• Lack of knowledge of the condition among GPs. 
• Lack of support from GPs.
• Lack of trust and confidence in GPs. 
• Significant variation in the availability and quality of information that people are given about ME/CFS.
• Shortage of specialists, specialist clinics and treatments, leading to long waiting times, delays in diagnosis and treatment. 
• People are expected to travel long distances for appointments. 
• Hospitals are unsuitable for those with ME/CFS. Hospital staff have particularly low understanding of their condition. 
• Unable to access medical records, making it hard to keep track of their treatment or progress. 
• People feel ignored and abandoned. 

Recommendations

• General Practitioners require thorough training on ME/CFS.
• Diagnosis times to be improved.
• Information on ME/CFS to be improved and standardised. 
• Clear mapping of services. 
• Improvements in the appointments offered. 
• Help patients understand how to access their medical records. 
• Improved training and facilities in hospitals for inpatients stays.