“She used to be Tigger and then she was Eeyore”: young people, CFS/ME, exploring predictors of recovery, 2021, Clery, Crawley et al

[Amw66]

What do AfME advise children to say?

I don't know @MEMarge . Sonya has mentioned that children use noticably different language - I think that she mentioned the use of fatigue more ( but could be wrong).
The kids page on AfME was revamped after input from parents on Educate ME project as it simply did not reflect the seriousness of the illness and did not define PEM adequately. It was posiitve that AfME listened and changes were made; there is always room for improvement.

On forums there are exapserated posts of children's sympoms simply being dismissed at Bath if they do not correlate to expected responses, so it could very much be a learned response.

 

[Peter T]

That makes it more insidious- it could be learned language - and this is providing the " lived experience " voice.

This is particularly relevant given the Bristol researchers seem to be increasingly basing their research on child subjects who have had a year or more input from the associated Bath clinic, as in this study.

 

[Amw66]

This is particularly relevant given the Bristol researchers seem to be increasingly basing their research on child subjects who have had a year or more input from the associate Bath clinic, as in this study.

indeed. Kids used to simply be discharged....

 

[Peter T]

indeed. Kids used to simply be discharged....

I wonder if a reason for this is that as parents and families become more aware of concerns about Crawly’s research that it is harder for them to recruit subjects without the opportunities offered by the Bath clinic to pre train (groom) future subjects.