Yes, we have the research issues here in Australia too. My son and I were recently invited to take part in a study at the Royal Children's Hospital in Melbourne. It's called 'Understanding CFS'. Of course it is just a survey, but we thought helping to ensure the doctors understand the impact of the illness might be help a little.
But no, most of the questions to the child/adolescent seem to be aiming to prove that the child has a psychological issue or poor sleep hygiene (eg 'Do you repeat words or numbers over and over to stop bad things happening?'; 'Are you afraid of the dark'; 'Do you chew or smoke tobacco within an hour of bedtime?'). And the questions to the parent seem to be aiming to prove that the parent is encouraging the child to be sick (eg 'Do you give your child treats when they are sick in bed?). And there are no questions on post-exertion malaise. None.
When I explained in an email these and other concerns to the researcher, I got no reply. I followed up a month later and she said 'I understand your concerns. If you wish to talk about them further, talk to the Director of Ethics'. I spoke to the Director of Ethics and explained that because the survey (title 'Understanding CFS') doesn't actually cover the symptoms of CFS, the researchers can't be sure that the respondents actually have CFS - and they can't stratify the results according to gradual or acute viral onset and so on. So they could have respondents who are fatigued for a whole range of reasons, making the data useless. The Director, after discussing with the researcher, reported back that if they need to stratify, they can look at the medical records. I did not recall giving permission for them to access the medical records and indeed the Director agreed it was a problem that the 'agreement to participate' form did not include permission to access medical records and that they would fix that.
So, we don't know whether to stick with the project (the surveys will be repeated a few times over the next two years) and ensure that there is at least one respondent who does not repeat words over and over to stop bad things happening or have a problem with bed wetting. Or to pull out of the survey and not give these people any encouragement.
Of course, the researchers might actually be wanting to prove that young CFS patients aren't in fact neurotic and coddled by doing this survey. But they refuse to tell us the aims of the project while we remain part of it in case that influences our answers, so we don't know.
