Journal of IiMER June 2024 Executive summary from ‘EMEA survey of ME/CFS patients in Europe: Same disease, different approaches and experiences‘ Report by Arild Angelsen and Trude Schei This survey of ME/CFS patients in Europe has been conducted by the European ME Alliance (EMEA), which gives a voice for people with ME/CFS in Europe and is the European partner for facilitating high-quality biomedical research. This report presents the findings from the survey of more than 11 000 ME/CFS patients. The aim was to compare patients’ experiences across countries regarding disease characteristics, course of illness, and access to healthcare and support. The survey The data are based on an online survey, conducted in May - August 2021. The questionnaire was translated into 15 languages, and the survey was promoted via patient organisations in European countries. The respondents spanned 44 countries, including responses from a few non-European countries. A total of 11 297 responses were analysed. The questionnaire covered illness characteristics, factors affecting disease course, therapies tried, and support received from healthcare and personal contacts. Potential biases due to non-random sampling are acknowledged. Severely ill and undiagnosed patients are likely to be underrepresented. However, the large sample size is viewed as providing useful insights into patients’ experiences across European countries. ME/CFS is a serious and debilitating disease ME/CFS is typically categorised into four degrees of severity: mild, moderate, severe, very severe It can be argued that the use of the term “mild ME/CFS” is an oxymoron, as even “mild” ME/CFS is a severe disease, with a major loss of function compared to before disease onset. Most patients cannot work and rely heavily on support. In the survey, 24.0% answered that they had mild ME/CFS, 53.8% had moderate ME/CFS (mostly housebound), 16.0% had severe ME/CFS (mostly bedbound), while 2.4% had very severe ME/CFS (bedbound and in need of continuous care). 3.7% described their severity as “better than mild”, while only 0.2% said they had recovered. Strong similarities were found among countries for several factors such as the distribution of degrees of severity, the positive correlation between early onset and disease severity, and the factors associated with a better course of illness, such as coping and support from family and friends. Almost half report a deteriorating course of illness Persistent myths exist about ME/CFS being an illness that gradually “burns out”. Some patients do indeed get much better or even recover, but most do not. As high-quality prospective studies on typical courses of illness are lacking, large patient surveys such as the present one may provide the best information available. Whether ME/CFS is seen as a temporary or chronic condition has major implications for welfare benefits and other services provided. In the survey, 46% described mainly deterioration (26% had initial fluctuations and then deterioration, and 20% have experience mainly deterioration), while 24% answered that they had experienced major fluctuation throughout their course of illness. In total, 70% of respondents described either deterioration or large fluctuations. Only 7% reported improvement. Many patients have a severe or very severe degree of ME early on. 33% among the very severely ill had an onset before turning 20 years old, compared with 14% among those with a mild degree. Invest in ME Research Page 14 of 32
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