2021 Pan-Europe ME Patient Survey (EMEA)

lycaena said:
@trudeschei Thank you very much for this survey!

Regarding one of the questions I had the feeling that the translation into German was not ideal.

There is a question if I feel dizzy when standing or sitting. I think this question is about OI? The german question asks if I have vertigo (Schwindel) when sitting or standing. I think "Benommenheit" would be a better translation? @TiredSam
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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.
 
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, Croatia and Serbia!

The answers are important in advaocacy work. Today I have been in a meeting with the Norwegian Directorate of Health, and could show them thar according to our - preliminary - data, the time from onset to diagnosis over the last five years has been 5,5 years on average (median time, 4 years). This is information they do not collect themselves, but it important in looking at services for ME-patients, particularly since Norwegian Social security (Nav) only gives you a temporary diability benefit for four years, after that there is a one year period without benefits. In those four years the patient should be diagnosed, treated and evaluated when it coems to capacity for work. If it takes four years just to get a diagnosis, there is problem... What will be the result of today's meeting I do not know, but at least we had numbers to supprto our arguments :)

Each ME charity that participates in this project will get the numbers for their own country, to do with as they chose.
 
Andy said:
Thanks for the update.



Will the full results, covering all countries, be publicly published as one document, or will it be down to each charity to publish the results from their country?
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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 start analysing the data, it is hard to say which aspects will be most interesting... There may be few questions, but there are so many ways to combine them in an analysis. In Norway we found a statistically significant corrolation between early onset and severe disease - will we find that here? Does it differ between countries? Will the increase in new cases that we saw be the same in all countries (and if so, why are there no epidemiologists who shout WHY???)

We will make summaries for each country, and make the numbers for each country available to that country. We do not have the capacity to make detailed reports for each country, but hope that there is someone there who will. We will be very happy to share the data.

I hope this answers your question.
 
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trudeschei said:
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.
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great, we promoted the survey in ME/CFS czech and slovak facebook group. The languages are almost the same - so the slovaks will understand as well :-)
 
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 considering that the UK population (and presumably the ME population as well) is ten times that of Norway, we would really, really have liked to have more responses.
We are also finding it difficult to reach Italian patients, so if anyone can help, it would be greatly appreciated!
Answers from all over the world are welcome, as well.


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Michiel Tack said:
Thanks.

The number of responses in the original Norwegian survey is really high. Could it be that ME/CFS is simply more prevalent in Norway than in other European countries?
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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 old, and we have 5500 members, in a country with an estimate (based on prevalence studies) of between 10000 and 20000 ME-patients. We have several moderated Facebook groups, for different groups of patients or carers, the membership of these groups exceed the membership in the association. We find the Facebook groups very useful when it comes to getting responses to surveys. We also use social media, and post weekly reminders, and ask bloggers to promote the surveys as well. We have done several surveys, and written reports we know are read by the authorities - so patients feel they are doing something meaningful in answering.

We will make the numbers for each country available to the organisation in that country, and I think that could be a way to "sell" it to respondents - that they would get information that is valuable in advocacy work.
 
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