Hmm, interesting.
Dr Sarah Knight is the lead researcher on another study that I and my son are participants in. I've talked about it elsewhere. It is titled 'Understanding CFS'. It has no questions about PEM or the full range of symptoms beyond fatigue that are part of the illness. Questions to the child seem to be testing whether the child is neurotic (are you afraid of the dark?; do you repeat words or numbers to stop bad things happening?) and has poor sleep hygiene (do you smoke or chew tobacco in the hour before bedtime?). Questions to the parents seem to be testing whether the parent is facilitating the sickness (do you give your child treats when they are sick?). We fill out these questionnaires every 6 months I think.
There are many problems with the questionnaire. It seems to have been formulated by people who do not understand the illness. Perhaps this is because it is using assessments established for other illnesses in order to aid comparisons, but the result is that the amount of disability resulting from the illness is not adequately quantified. For example, from memory, it asks about whether you can walk or run a certain distance. My son can do many of these things, but he may well be in bed with joint and muscle pain and fatigue for several days after - or sleep 16 hours a day for weeks after.
I had questions about the selection criteria. The questionnaire itself has no questions that could confirm a CCC diagnosis. Presumably my son was invited to participate in this study because of the single consultation he had with a very junior doctor at the Royal Childrens Hospital in Melbourne. The study did not seek permission to access my son's medical record, so there is no way that the study authors could group the participants according to particular symptoms or co-morbidities, for example, depression.
I have asked about plans to report the aggregated results and report to the participants and have received no reply. Sarah is not willing to share the hypothesis that they are investigating with the participants and their families. It is possible that the hypothesis is that children with ME/CFS are no more neurotic or sloppy with sleep hygiene than the typical well child and their parent is no more or less solicitous than the average parent of a child with a chronic illness - but I don't think the characterisation of the participants has been sufficiently stringent to really test that.
There are that many strands to the questionnaire that it will probably be possible to find one way or another to blame the behaviour of the parent or child or both for the perpetuation of the illness.
I have raised these and other issues with Sarah every time we have completed the questionnaire. Sarah has not engaged with me in any way to address the issues. One time she directed me to the Ethics person of the Royal Children's Hospital. The Ethics person was leaving the position a couple of weeks after I initiated contact and although very polite, clearly wasn't interested. She did get a little excited about the fact that the study paperwork had not included the participants' guardians giving permission for the accessing of medical records, and admitted that was a mistake. She promised that paperwork would be sent out to rectify this. It was never sent.
I note that Sarah has been careful to be non-committal about the utility of CBT and GET in the interview above and is only seeing biomedical issues as the possible cause of some of the the symptoms of ME . As others have noted elsewhere - if people are not clearly against the use of CBT and GET to cure ME, then it is pretty safe to assume that they are probably not on our side.
I'd be wary of any research managed by Sarah until such time as she states clearly that the cause of ME is unequivocally biomedical.
I attribute weight to the fact that she chooses to present material in a conference that includes the likes of Esther Crawley rather than the IiME conference.
Edited a few times to improve readability.
