EUROPEAN ME ALLIANCE SURVEY AND REPORT - a summary (part 1)

Bonjour, 

Between May and August 2021 the European Myalgic Encephalomyelitis Alliance (EMEA) conducted an online survey of ME/CFS patients in Europe.

More than 11,000 people from 44 countries responded to the survey. A small minority were from three non-European countries: the US, Canada and Australia. 

Now the report has been released and translated into 15 languages. 

The full report is very long and obviously difficult for people with ME/CFS to read and interpret. So, as my cognitive skills are reasonably sufficient, I thought that I would provide a brief summary of some of the outcomes from the report. 

AIM 

The main purpose of the survey was to explore similarities and differences across European countries on a number of aspects related to the illness: distribution of patients across variables such as age, gender, severity, diagnosis period, course of illness and factors affecting it, experience with health care systems and other public services, and support from family and friends. 

• 84% of the respondents were female, 15% male, 1% no gender stated 
• the average age of the respondents was 50 years of age

DISEASE TRIGGERS

• infectious diseases was the most common trigger mentioned by 58% of the respondents
• 18% mentioned accident, physical trauma or surgery 
• 4% of the female respondents mentioned pregnancy and birth 
• most associated onset with a single event
• 8% with a combination of events 
• the most combination was infectious disease in combination with long term stress or traumatic life event
• or infectious disease and accident/injury 

YEAR OF ONSET

• 50% became ill before 2009
• on average it took 6.8 years to receive a diagnosis 
• becoming ill varies by age 
• the peak for women is between 35 and 39 
• a smaller peak between 15 and 19
• no similar peaks for men 
• many of those who had been ill for 25 years or more became ill as children 
• data from the survey indicates that ME/CFS often lasts for a long time and in many cases is lifelong 

DIAGNOSIS STATUS AND DIAGNOSTIC PERIOD 

• case definition used, diagnosis guidelines and practices vary greatly across European countries
• the more severe the disease the more likely the respondents received a diagnosis 
• among the severely ill 95% had been diagnosed and 77% among the better and mild group 
• the average age at diagnosis was 39 years of age 
• men on average diagnosed earlier than women

So what are your thoughts on the above? There's more to come from me when I've finished reading and done a brief analysis. 

In the meantime if you feel up to it you can download and read the full report for yourself. Here is the link. Choose your language by clicking on the relevant flag.

 

Au revoir 

The French Femme 

xxx