How are we going to stop this before any children become sicker than they need to be?!
It seems to me that it requires influencing the right people more than making lots of noise. My partner is an academic and she thinks the ethics Committee who have just approved it is probably the best starting point. (What do you think
@Keith Geraghty?) They won't be experts on ME, they'll probably just have read the proposal and approved it on its own merits as a self contained document. They should be fairly risk adverse, especially when it comes to children who will have a hard time withdrawing consent if they experience harm. Concerns raised in the peer review will be useful for this, as will the ME Association's survey and patient account of harm.
Could our concerns (to be organised into a letter to the committee) be summed up as:
1) We feel harm from GET is too high a likelihood for a study on children who are unlikely to be able to give properly informed consent and who will probably feel too coerced to be able to leave the trial at any time
2) GET is a treatment in which the majority of patients report harm rather than benefit (Inc various evidence) in conflict with claims made in this proposal
3) For this to be ethical, researchers would need to inform of potential risks to such an extent that it would undermine the study (nocebo effect or difficulties recruiting) see below
4)Similar research has cost a lot of money and produced null or negligible benefit to pwme.
5) This study is a misuse of public research money long term, because the methodology is confused meaning that replication would likely have different results. For example, some people will also have CBT in a fairly haphazard manner. More effort needs to be made to avoid bias in this controversial area, such as analysis from neutral researchers.
6) There are very promising areas of ME which could be invested in (eg...) and patient groups feel that money would be much more productive long term if it was spent on other areas of ME research
Also is this previous thread relevant
BTW this took ages to write so I'm not up to speed on the thread