The primary care health centres used to be able to send referrals to Danderyds Sjukhus (DS, “Danderyd’s Hospital”), where Indre Bileviciute-Ljungar used to work. At the time, it was Stockholm’s only ME specialist centre. It had a bad reputation, and
a report on, and written by, the centre — which had been run in the form of a project — led to its closing in 2015.
Thorough medical investigations had to be done before sending a referral there, and at the centre the doctor could then make a diagnosis. Before coming to the centre, one received a large amount of questionnaires in the mail. The questionnaires appeared to be a part of the medical investigation, in order to try to exclude depression, to check if there are pain issues etc. There are lots of ‘yes or no’ questions, boxes to tick and scales to draw lines in. There are no fields where you can add your own comments or clarifying explanations.
Despite this massive amount of questions, there’s nothing that allows you to put anything about PEM in there. No questions at all to find out if PEM is present or not. For example, there are no follow-up questions, that easily could have indicated which kind of activities are causing it etc.
When you registered at the centre, you were asked if you wanted to take part in this project, that would be used for research purposes. You signed an agreement then and there, and it said that you can withdraw at any time. However, you didn’t get a copy of the agreement to keep.
The news about the centre’s closing was very welcome, and we were hoping that the doctor in question would stop using these questionnaires for research, since the data really doesn’t give a fair representation of the ME-patients at all. However, the doctor has continued using these questionnaires even after the project ended [and, even though she relocated to another county, and is now working at a different ME/CFS centre]. She still has some connections at [the medical university] Karolinska Institutet in Stockholm, and is therefore still able to access the questionnaire data, although Stockholm county council owns it. She is doing several studies based only on these questionnaires.
For example, one of the questions was: can you walk x meters? If your answer is yes, you are saying that you can do it (without problems). If your answer is no, you are saying that you are unable to walk. For this question to give a fair picture, it needs to be followed up by another question; one more question would have to be added in. Does this affect your symptoms, either immediately or later?, in order to show PEM, which is the main criterion, and that I feel has to be included if you’re studying this diagnosis.
Another question was if you care about your looks/appearance as much as you used to. Yes or no.
Has anyone close to you passed away? Has anyone commited suicide?
Rate your pain on this scale by drawing a line where you are.
When you meet the doctor (I saw her twice), during the registration process you go through the questionnaires very quickly. I very clearly explained about the problems with the questions, and also explained in detail that in order to give a fair picture of how I view my own current health situation, the answers have to be expanded with explanations. She allowed me to tell her, but she took no notes.
The project was run for a number of years. Unfortunately it looks like she will continue doing studies based on these questionnaires.
It’s possible to contact the archive to ask them to remove your questionnaire data. However, it is complicated and not at all clear whom to contact, or how. Some of us started looking into it a while ago, and managed to find out whom to contact and how. Many of the patients who took part in the project had no idea how these questionnaires were being used, they were unaware of their right to withdraw, didn’t even know that they were still being used by this researcher who is now working in another county, within a different county council.
The questionnaires are available to researchers in Stockholm, they can apply to use them. In other words, people who have never ever met a ME patient can study ME based on these questionnaires, even though they don’t even include our main issues.