No there isn't detailed psychological surveys for the teenagers to my knowledge.
That's great. Perhaps you can just keep an eye out for such surveys.
There are behaviour surveys for guardians. Closest thing to what you are asking that is used is the HADS I think.
What specific survey tools are used for the 'behaviour surveys' for the guardians?
HADS has a lot of problems when used in chronic illness samples. If you haven't had a close look at HADS, I recommend doing so, imagining how you might answer the questions if you had ME/CFS. Given the inaccuracy, it is probably better to just ask simple direct questions with a scale, about feelings of sadness, depression and anxiety.
Which investigator used a question on spiders? They only use standard scales, its possible that sometimes you might get a odd question on a scale but these scales are standard for all manner of disease.
I won't answer that here, as I think the investigator means well but it looks as though you have a good idea of who they are. Yes, that was the answer I got when I queried the survey, that it was a standard one. But, as Kitty says, 'we always do it this way', or 'everyone always does it this way' is not good enough. Questions about fear of spiders, or whether the young person repeats actions in order to try to prevent bad things happening, or whether the young person chews tobacco or whether they always think the worst about what is going to happen should have no place in most ME/CFS studies. The problem is particularly acute with ME/CFS - there are lots of people questioning your sanity and keen to apply a 'conversion disorder' label. Even psychologically robust people do ask themselves 'am I just imagining all of this, could I be well if I tried harder?'.
I encouraged my son to participate to attend the Royal Children's Fatigue service and to participate in the study that we were told about there. I think both caused harm to his perception of himself and the disease, although the clinic appointments were a lot more consequential. He subsequently refused to see any more doctors about his illness. He is by no means overly sensitive or anxious; it was a reasonable decision based on the likelihood of the doctors helping (low) versus the likelihood of the doctors making him feel bad in various ways (high) and the effort of getting there (also high).
Also, before consent the patient and guardian are given full details and able to talk through any questions.
That was not the case in the earlier study.
Do you think researchers do a good job explaining all the dangers of being involved in research broadly?
So, no, my experience is that they do not.
We all here think that me/cfs is not a psychiatric disease, but we should still conduct psychiatric tests to prove or disprove our theory.
I agree with that, but in many cases there have been a long series of studies e.g. trying to prove people with ME/CFS are perfectionist or catastrophisers. While there is no credible evidence for either, that does not stop further investigation of these ideas. And, as we are saying here, informed consent is required and there is the likelihood of harm to consider. If you study adults using a flawed survey tool applied after disease onset and then write a paper saying that ME/CFS people are catastrophisers or anxious, many of the participants will be able to dismiss that idea because they have had many years living their life to know who they are. But, if that paper is about a sample of young people, that can do damage to their developing self-image. In much the same way as we are cautious about drug trials in young people with developing bodies and brains, we should be cautious about psychological studies.
Maybe making it clear you can ask for data to be deleted instantly at any point. Would that help?
Yes. But I think it is more important that it is made clear that it is not necessary to participate in detailed psychological surveys in order to participate in a study that has a biological focus. I mean, hopefully the surveys aren't there, especially in studies of young people, but, if they are, it should be clear that they are optional and there should be some discussion of possible harm. (That of course may skew the type of person who completes the survey, making the results even more dubious. I think psychologists may need to think hard about the approach they take to gathering data as self-report surveys have so many problems.)
but sadly it somehow gets reflected on the people who’ve seen it all and have to warn people or double check