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Norwegian survey from 2020 https://www.me-foreningen.no/wp-content/uploads/2021/03/Norwegian-ME-Association-2021-Report-on-the-course-of-illness-English-summary.pdf

In Norway we have don several large patient surveys. A survey about course of illness in 5822 respondents from all of Norway. We asked about the severity of illness, based on the ICC-criteria. Mild - at least 50% reduction in activity, moderate - mostly housebound, severe - mostly bedbound, very...

We closed the survey today for all languages. We received 12.197 responses in total. Some of those will be incomplete, but we are still well beyond out goal of 10.000 responses. Thanks to everyone who shared, and to everyone who answered!

Quick update: The survey is now available in Hungarian. We have reached 10878 responses. The survey will be open until August 15th.

We will be happy to provide the numbers for each country to the people in that country :)

That is one possibility. Another is that there is more focus on ME than other places, and perhaps easier to be diagnosed, so there are more diagnosed patients. We also have a very active organisation, and ways to reach a ot of patients easily. The Norwegian ME Association is nearly 40 years...

We have now passed 9500 responses. A big increase in Germany, and quite a few responses from outside Europe as well.

Here is a link to the figure, I hope you can open it. https://photos.app.goo.gl/Lc31obw21Ear4ewS8

Update: We now have more than 8500 responses, the figure below shows the distribution over languages as of Friday. Big thanks to Open Medicine Foundation for sharing our post, it resulted in a large increase in English-language answers. Many UK charities also shared, and it helped. Howeverm...

We have - tentatively - set the closing date to July 31st. We may keep it open longer in order to get more answers from some countries. We only opened the Czech version today, as we have been waiting for the translation.

We really need help reaching UK respondents, so any help in sharing information about the survey is greatly appreciated.

Yes, it will be published as one report, but we will certainly look to compare data from different countries. I will, for instance, be very interesting to see if differences in percieved care in different countries affect prognosis. The differences are, in themselves, interesting. Before we...

A quick update: We now have 6573 responses. Norway is in the lead with over 2000 responses, but we have nearly 1000 responses in Swedish, over 700 in German and in English, and over 400 responses in French and Spanish. We would very much like to get more from the Netherlands, Italy, Denmark...

We asked the ME patient organisations in the participating countries to provide translations, assuming they had the expertise to do so. We will keep this in mind, but cannot change the text midway, unfortunately.

We have now received 4974 responses to the survey. Thanks to everyone who uses their energy on answering! The number of responses from the various countries varies a great deal. Norway, with a population of 5 million and an estimated 20000 ME patients, have given 1800 responses - but much...

I do understand your frustration here - and I wish we had a way of making this more detailed. In this case, answer what is true for the entire time of disease, which I understand that, on the whole, you have become worse.

Thanks for good comments. Yes, it is a trade-off between length of survey and being precise. In the Norwegian survey in 2019 we included comment boxes, to let respondents say what they believed had had positive an negative impact on the course of illness. We received 7600 responses, with a lot...

Yes. It is difficult to know which term is used ib every country in Europe, and there are also a lot of feelings concerning which term to use :( This is also why we included the description of the disease.

We have had 1974 responses to this survey so far, with Norway leading the way with more than 600 responses. We are deeply grateful for any help in promoting it! The results from the Norwegain survey has been presented for both the Norwegian directorate of health, and the Health committee in the...

I worked with arild Angelsen on the Norwegian survey, we are behind this as well. We have previously done surveys about the severely ill, young people with ME, and about rehabilitation and social services in Norway. I am the assistant secretary general of the Norwegian ME Association, Arild is a...