2021 Pan-Europe ME Patient Survey (EMEA)

(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:

1. The pattern in the occurrence (debut) of ME over time
2. The course of the illness
3. The positive and negative factors influencing the course of the illness
4. The availability and experiences with various treatments of symptoms
5. The time span between the onset and the diagnosis
6. The (dis)satisfaction with the handling/treatment of ME in the health and social security system
7. 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.

 

I'm assuming that 'Great Britain Northern Ireland' is UK. (never seen it put that way before).

 

Is this how it looked to everyone else? I find that quite hard to read.

Click for full image.

 

https://twitter.com/user/status/1392124464301805577

 

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 professor in Economics at the University of Life Sciences (NMBU).

If there are any questions, I am happy to answer as best I can.

We are very grateful for all help in promoting the survey!

 

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 Norwegian Parliament, and we find it sheds light on aspects of ME where there is little or no studies.

We will make the results from this survey available to the participating countries, so they can make reports for their country, and we will also look at Europe as a whole. WE hope to get some answers about how long it takes to get a diagnosis, how the health system is perceived (in Norway our respondents felt that the health system was more often a cause for deterioration than improvement in the patients' condition, and Nav (disability benefits etc.) was a large contributor til ill health. We are no using these results in our advocacy work. We find the surveys of great value in working with the healt systems and politicians.

Thank you so much to everyone who shares!

http://euro-me.org/pan-european-survey2021.shtml

 

I have one question. I have been diagnosed with CFS. The term ME doesnt exist in my country. Should I answer the question "Do you have me?" - Yes, I have been diagnosed with ME?

 

Thank you Trude Schei!

I was happy when I saw that a questionnaire would examine the development of the disease over time.
I really think it’s needed, and is important for both patients, doctors, researchers and authorities to understand how a young person with ME suddenly can turn spontaneously better, be stable for decades and then suddenly or gradually deteriorate.

I think ignorance of this both leads to a lot of problems with psychologization, frustration between patients and misunderstanding of vulnerability of deterioration.

But I was disappointed when I saw the few alternatives to tick.

There was no alternative that suited my course of the illness that that I think have been described as not very uncommon by experienced clinicians like Dr Bell, Jason and Komaroff.

I fell ill in my teens, then gradually got better in 1-5 yrs. Then I was on a good platform for 15 yrs with a reasonably functioning life (70-90 % but still most ME-symptoms), followed by a gradual deterioration between 40-45, and then a sudden bad relapse. Since then (6 years now) I have a moderate-severe but stable ME.

What alternative should I tick?
One has to choose something to be able to complete the questionnaire. I think it would have been better to be able to jump that question, instead of being driven to contribute to a false understanding of the disease.
Is it possible to add another box for this question, maybe open for ones own words?

Otherwise, the questions worked well.
Many thanks to everybody involved!

 

It’s hard to do something like this thoroughly. I didn’t get support when in education. But I was only mildly affected, didn’t really look to the system for help and was undiagnosed (there was no real option to reduce the workload in secondary or third level without a diagnosis). I would have liked a reduced workload but I’m not sure I can complain about the education system with regard to ME so ticked n/a.

I’m not sure I am happy with definition of moderate as mostly housebound and severe as mostly bedbound. I spend basically my whole day with my feet up, mostly lying down but don’t go to my bed for sleep hygiene reasons. Anyway I accept it’s a compromise between having a short survey that won’t put off people and a more long-winded one so not really complaining.

Maybe a comments box at the end would have been good.

Thanks to all involved.

 

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.

 

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 of very valuable information. However, it took more than three months to go through the comments, categorise and analyse them (all in Norwegian) We are doing this survey in 12 languages and aim for 10000 responses, and it would require a large, multilingual, team to go through open ended answers.

The questions we ask in this survey, however, are based on what we found in the Norwegian survey. This way we will get numbers, and that enables us to analyse answers regardless of the language.

 

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.

 

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 larger countries, with presumably much larger ME populations, have given far fewer.
Since I live in Norway, has conducted several surveys here, and works for the Norwegian ME Association, I have the contact network and the channels I need to reach many of the patients.

I would be very, very grateful for all help and assistance in promoting the survey in other European countries! Many, many thanks in advance!

Please share on social media or blogs. If you need any material, feel free to use the report from the Norwegian survey, or contact me.
https://www.me-foreningen.no/wp-con...-on-the-course-of-illness-English-summary.pdf

 

@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

edit: I think the question is taken from official diagnostic questionnaires, so it's not the fault of the survey creators. In the future I would like to see a better question about the symptom OI. Dizzyness doesn't describe the symptom OI very well either.

 

The #MEAwarenessHour every Wednesday is still activ and a good opportunity to share this surxey on twitter.

 

4974 responses is starting to look like useful numbers.

 

I'm much more confident translating German into English than I am translating English into German. I've always thought that "schwindlig" just meant dizzy, I didn't realise it was confined to vertigo. I thought Benommenheit had more to do with drowsiness, ie when you've been drinking. But it's probably best to ask a German about the finer points of German vocabulary.