(I wasn't sure where to post it, so feel free to move it to the appropriate subforum if there's a better one.) In short, they want to do something like that pretty interesting Norwegian survey with 6000 pwME participating that showed there was a peak in onsets in 2009, probably due to H1N1. But this time with a Europe-wide study, about the onset, progress etc of the disease. Takes a bit less than 10 minutes, available in multiple languages. The survey: http://www.euro-me.org/pan-european-survey2021.shtml Introduction and background National ME-patient surveys, conducted by the ME organisations within EMEA, have become an important source of information and knowledge regarding the situation of ME-patients in a number of countries. The idea for a pan-European survey among ME-patients originated when a patient survey carried out by EMEA Norway - Norges ME Forening (the Norwegian ME Association) NMEF - and later supplemented with a similar survey in EMEA Denmark - identified strong similarities in the time of onset of the illness among ME-patients, with a peak in 2009 – the year of the swine flu pandemic. Was there a similar pattern occurring in other countries? This then led to a discussion and posed other questions on the similarities and differences across European countries. EMEA now will perform a pan-European survey that will be carried out by NMEF which since 2011 has conducted a total of six patient surveys, focusing on different sub-groups (e.g. young patients, severely ill patients etc) and their experiences with various parts of the public health and welfare systems. Experience from previous surveys suggests that the longer the survey, the lower the number of respondents. So the intention is to create a short survey with a defined set of questions to complete. Purpose of survey This survey will be the first of its kind comparing the situation and experiences of ME-patients across European countries. As such, it permits cross-country comparison of a number of aspects: The pattern in the occurrence (debut) of ME over time The course of the illness The positive and negative factors influencing the course of the illness The availability and experiences with various treatments of symptoms The time span between the onset and the diagnosis The (dis)satisfaction with the handling/treatment of ME in the health and social security system The acceptance of ME among family members and friends Our aim is to receive several hundred respondents from each of the EMEA member countries, and a total number of respondents of minimum 10,000. This may seem ambitious, but the most recent survey (a very brief one on the course of the illness) among Norwegian ME-patients had 5,822 respondents. Take Part in the Survey The data collection and publication of the survey will use SurveyMonkey. After collection and analysis of the data a report will be produced. No personal data will be published or held by Norges ME Forening, who will be analysing the data. We also hope to feed these results into EMERG and EMECC discussions.