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Yes, definitely a good idea :) You can find ME-foreningen's email address on the following page, below the heading "E-post: Generelle henvendelser": http://www.me-foreningen.info/om-oss/kontaktinformasjon/ Trude Schei's (one of the authors of the report) email address can be found on the same...

@Hutan, I only know what's in the report, so I'll add a few more quotes: (Edited a few spelling mistakes.)

As far as I know there's no English translation as of now. It doesn't say anything on the webpage nor in the report about whether they are planning on publishing an English version or not. There are pdf splitters online where you can upload your file and divide it into several smaller pdf files...

Yes, correct.

Another Google translated one (again, sorry about the low quality). Figure 3: Functional level of people very severely ill with ME ("How often can you perform these activities?") Edited! The heading in the previous version of the image was wrong. Should say "very severely ill".

No, what is translated here as "extremely severely ill" (ekstremt alvorlig syke) is not the same as "very severely ill" (svært alvorlig syke). The extremely severely ill is a subgroup from within the very severely ill group of respondents.

Figure 5: Functionality of the extremely severely ill (the 9 most sick patients in the study). Sorry for the low-quality job on these translations and images. Please let me know if you find any mistakes.

Editing the images in the report is probably not allowed, but they are so striking that I couldn’t help giving it a try and quickly translate at least a couple of them, just to give you a bit of an idea. Figure 15: Disease course. Figure 22: Percentage who have experienced that contact with...

@Jonathan Edwards If you haven't already seen it, the Norwegian ME Association has published a report on severe ME which is very much relevant to this discussion. Thread here.

From the introduction, Google translated: "This report illustrates the situation of the sickest 25% of people with ME in Norway with regard to the burden of disease, support and the role of relatives. In the report we try to balance hard numbers and facts with thousands (literally) of free-text...

This is brilliant, thank you so much! :) I've started a thread here with some quotes from the summary, translated into English.

I've only read the summary so far, but it looks amazing. Here are a few Google translated quotes from the summary: "A key message in the report is: The most ill ME patients are an extremely vulnerable group with minimal or no margins, where even small mistakes can lead to prolonged and severe...

Thanks a million, @Hutan! Your notes are very very much appreciated, super helpful :hug:

If you hang out in Swedish ME groups online you will from time to time see posts saying things like "When I got diagnosed with ME by a doctor in [city], I was offered ECT [...]". It's not a one-off, it happens in several different parts of the country, and it has been happening for many years.

ECT is sometimes used in Sweden too, to treat people with ME diagnosis :wtf::cry: Even young people (last one I read about is 18-19 years old). Patients are being told it will help with fatigue, memory issues, brain fog, sleep and/or that it will "kickstart" the immune system, among other...

Avoiding them, if at all possible, seems like a very sound policy to me. I'm so sorry they have put you in this difficult situation :( It's horrible that we/pwME so often have to expose ourselves to the risk of "out of the frying pan into the fire" every time we seek medical care :cry: Please be...

From the MED Study thread, info relevant to this study too:

https://staff.ki.se/people/gabber

Some examples of current ME/CFS research at Karolinska Institutet: The MED Study https://www.s4me.info/threads/the-med-study-bo-christer-bertilson-sweden.8443/ Clinical, radiological and immunological findings in ME/CFS, other pain conditions or fatigue...

Thank you! I too googled Mehlsen earlier, but those links didn't show up in the search result for me. Instead, I got links to his paper with Per Fink et al The Danish study of Functional Disorders, among other things... Very helpful to get some insight from the perspective of Danish pwME and ME...