Ugh! It's all scary and frightening, also somewhat perplexing. She's just chosen to focus on those who are (or could be) attending school - defines severely affected as only leaving house for medical appointments. I'm sure a lot of those would still come under a moderately affected definition (many of these will be receiving LA home tutors). Does she just want to focus on the more mildy affected (that's a long list of possible activities she's giving as examples of 'high energy' use!) - those that may possibly have a shorter illness duration anyway??
That's a very intimidating & loaded statement for young people 'cognitive behaviour strategies to change thought processes to allow you to reach a goal that you have set for yourself'. It's insulting and all tied up with false illness beliefs and 'fear of moving forward'.
Nothing about validating the illness & that actually you are just often too ill to make increases - the increases have also been bumped up to 10-20% a week. A week! Used to be 'just' 10%!! Will we actually here about how often increases have been made. How many were actually able to sustain that week on increase.
& parents 'beliefs' about the illness will be looked at separately. More worry = over protective parent impeding recovery vs more worry = your child is not improving or deteriorating.
What 'stage' of the illness will these young people be at & will that be recorded. For example, if 2 years into illness & already at school that may mean 'recovering' anyway.
Will we hear about those that left the program & their reasons. But again EC is likely to interpret that (privately if not publically) as they had barriers to recovery by not being able to engage with the program. I wonder if there is a record of those who have left her current service and their reasons anywhere.
I expect she'll find what she's looking for (or interpret it in the way that fits her theory) & the even greater concern is the further pressure that will put on families to engage in such programs. She can claim it was for all except severely affected but I would dispute that she's actually just focusing on mild not moderate M.E. You would need to be reasonably high functioning to be able to cope with school attendance plus 60 minute Skype calls plus working through 19 modules. Wow!
Also, just read she is interested to know about barriers to participation on the program but is that more to do with examining what's the issue with the person who is not engaging/has left rather than what the issues are with the actual program in the first place. Sadly, everything can be 'turned around'.