Journal of IiMER of very exiting research is going on at the moment and we are gathering a piece of the puzzle but we do not have a coherent medical hypothesis so far and we do not have a clear cut diagnostic biomarker for ME. We have very different diagnostic criteria - she thinks there are more than a hundred all together. So, all in all, you can see that this is quite a diagnostic mess. She has seen ME patients when she was asked to co-author the paper on quality of life in ME patients and it was first and foremost the work of Michael Hvidberg who should have all the credit for this and who sends his regards. He used a questionnaire, a standardised nondisease specific questionnaire, which is used to describe and value healthrelated quality of life in patients. It is called the EQ-5D-3L and it has five dimensions. It describes: mobility self-care usual activities pain and discomfort anxiety/depression and each of these five dimensions can be valued in three levels of severity: Level 1: Level 3: indicating no problems whatsoever. signifying severe problems So, if you have a very good health, no problems, you will score: 1-1-1-1-1 If you are in the worst possible health condition, you will score: 3-3-3-3-3 We got these raw answers from the completed questionnaires, and then based on these each subject is given a single score. One number which is in a linear scale, from - 0.6 to 1- (1 is perfect health and - 0.6 is absolutely terrible health). And this funny scale anchored around zero which equals www.investinme.org death. So if you have a negative value, you have a health state that’s conceived worse than death. So we compare 103 Danish ME patients to the average population and we found in line with the others, that the typical ME patient is a woman, and found that the ME patients were significantly higher educated than the average population but they were not significantly more depressed than the average population. And this is actually a quite Page 59 of 82
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