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Just to let you know that we now have a website for FUNCAP www.funcap.no

I would have loved to look at it, but I only have an android phone :( But if there is anything I can help with, let me know!

The whole process started because Norwegian welfare authorities (Nav) asked a national fatigue network to recommend a form that could be used to assess functional capacity in patients too ill to participate in normal activities used to assess capacity (or lack therof) for work. Both Kristian...

The survey is now published through European ME Alliance: https://www.europeanmealliance.org/documents/emeaeusurvey/EMEAMEsurveyreport2024.pdf We asked about when respondents got ill, how long it took to get a diagnosis, how the course of illness had been, and about factors that had affected...

We are very aware of the cumulative aspect of PEM. I have ME myself, and the best analogy I know is having a current account and a credit card with energy, and that you can get into debt both all at once and a little at a time - and that debt will have to be paid back with interest, and that...

We have allready talked to researchers who want to use FUNCAP in upcoming studie, so it will probably tested soon. We have had positive feedback from clinicians.

Here is the preprint. https://www.preprints.org/manuscript/202309.2091/v1

No, we are not setting a cut-off score for being able to work etc. The questionnaire looks at various domains, and having a low score in certain domains, like "being upright" og "sensitivity to light and sound" may be extremely diableing, even if you score higher in other domains. For most...

That is a good question. In Norwegian, the phrase used was "gå en kort tur". The word "tur" strongly implies that the walking takes place outdoors and is for pleasure - which again implies that the patient is able to get up, get dressed and walk for enjoyment. There is no phrase in English that...

I am very happy to see this published in a peer reviewed journal. We did the survey in 2018, and published a large report on the Norwegian ME Association webiste in 2020. However, we have had problems getting Norwegian Health authoritites to listen, as they say it wasn't "proper", published...

From the IOM report: "Symptoms can be severe enough to preclude patients from completing everyday tasks, and 25-29 percent of patients report being house- or bedbound by their symptoms. Many patients feel unable to meet their family responsibilities and report having to reduce their social...

<3 I know that that is the case for so many. I am one of the lucky ones, and have a life that looks normal (ish) when others see me.

We very much thing that "limits what I do the next day" means PEM. From my own experience - and from other ME-patients' - the amount of PEM Ihave depnds on how far an exertion exeeds my limits - so if I do a lot (like going to a party or other event) I could do nothing the next day, If i do a...

Comments are always welcome, even though we cannot always accomodate all. The part of this survey that is about function has been trialled in three rounds in Norwegian Facebook groups, and we have gone through all 800 comments already :) We ask about function, and the aim is to find a way to...

Thank you! If you have any comments on the function part of the survey, please let me know. It is not cast in stone yet, and we are open to suggestions - and very happy to get them!.

No, it is not published yet. We had very few respondents from English speaking countries. Norway (with a population of 5 million) had 3000 responses, while there were only 900 form the UK (with an estimated 250000 ME patients) and around 500 from the US. With the help og OMF we are now trying to...

If anyone wants to send me ideas or comments on the subject, they are gratefully received :) My email is: trude.schei@hotmail.com

Sorry for the late answer, I am not on this forum that much - too many things to keep track of, at times, and having a bad period, ME wise. We asked members of the Norwegian Association's Facebookgroups to evaluate first one version of the form. Then we looked at the 400 answers and comments...

This is - so far - an informal project, and a work in progress. We are not - at the moment - trying to make the perfect form. We are merely - for now - trying to make a sketch that can be shown to the Norwegian social services (NAV) among others, highlighting which areas ME-patients experience...

We are working on the data. Professor Arild Anglesen is doing this in his spare time, and I have ME, and am doing this with my spare energy... The amounts of time and energy are not entirely predictable. I have had bad reactions to all three vaccine doses, but I am gradually getting better, and...