Ok the journalist/Editors of the Times could have done better to frame that statement and make it clear how controversial it really is. Although I think it is common to write an article with testimonies and quotes from people reporting a problem and then to end it with a response to the accusations from the agency responsible for the situation.
I think we shouldn't be too focused on the messenger (the journalist/editors of the Times) for telling us how the Royal College of Paediatrics and Child Health thinks. I don't have experience with the UK system but I suppose the RCPCH is spreading that message to doctors and paediatricians with many other means than this press article.
The controversial statement in question is:
“Very occasionally, some parents have been reluctant to, even with support, supervise and encourage children and young people to follow rehabilitation plans and this may result in the health needs of the child being neglected. If this situation becomes severe paediatricians have an ethical duty to share their concerns with children’s social care.”
The evidence for rehabilitation plans in children with ME/CFS is even poorer than for adults (for example: there aren't any randomized trials on GET as far as I'm aware).
From memory:
There's the
2005 study by Stulemijer et al. It had a waiting list control and at long term follow-up there was no difference between the percentage of clinically significant improvement in physical functioning and school/work attendance between the two groups (only for fatigue were the results significant).
The FITNET study originally reported spectacular results, but at
long-term follow up the usual care group caught up and had similar recovery rates.
Chalder et al. did a randomized trial of family-focused CBT versus psychoeducation where there were no significant difference between the two groups.
I think that's pretty much it. Crawley is now doing two larger studies (
FITNET-NHS and
MAGENTA) but if I remember correctly both of these compare two rehabilitation approaches so they won't be able to tell us if rehabilitation is effective or not.
So even if you don't consider the poor quality of these trials and take the results at face value, there still isn't much evidence that the rehabilitation approach for adolescents with ME/CFS is effective. Therefore the statement by the RCPCH seems unfounded. How do they know that if parents don't want their children to follow a rehabilitation plan that tries to push their limits by exercises, that this "may result in the health needs of the child being neglected"?
Given the testimonies of parents, it is quite likely that their advice is harmful. I hope that patient organisations, doctors, politicians and researchers in the UK will bring this to the RCPCH's attention.