During the Webinar Rosmalen also answered to the question how Lifelines determines if someone has ME/CFS or not. This is a quickly translated transcript:
Presenter: How are people in Lifelines determined to actually have ME/CFS?
Rosmalen: As Sonja said, we start with a questionnaire and we then see if people have the symptoms that fit the various diagnostic criteria that one can use to diagnose ME/CFS. But of course you can't tell from a questionnaire alone whether someone has ME/CFS. People who participate in lifelines also come to our research facilities and then they get a whole series of tests such as, for example, a lung function test, an ECG, a cognition test, a blood pressure measurement. A whole series of tests actually that they undergo. And we then also collect blood and urine. And we do that not only to determine all those beautiful metabolic products and proteins and so on but also to see if there might be diseases well that could explain the symptoms that people are experiencing.
So for example, we look at: is the liver function okay, is the kidney function okay, is the thyroid working okay. And only after medical specialists have checked all these tests and looked at: are there any reasons, are there any chronic diseases present that could possibly explain the complaints that people have indicated on the questionnaire. Only when medical specialists from all those disciplines have said: well that is not the case here, only then do we say that this is ME/CFS. So people actually get quite a lot of tests, I think perhaps more than the average ME/CFS patient who gets diagnosed in the health care system because the diagnostic services they are offered are often limited.
