Have any of the listeners even contemplated for a moment -- to what end?
Why would so many sick people be going to such lengths to stop (supposedly) helpful science into their illness?
What is there to be gained?
Is the explanation here mass hysteria?
How is that justified?
Spot on
@Snowdrop
I think what she has said that children & families need help now (whilst waiting for biomedical research to come to fruition).
The prob is that her 'help' is still marketed & perceived as a 'cure'.
I think I made this point on another thread but if she was actually honest & transparent about what her service could deliver/not deliver then this would be a huge step forward.
They may be able to help families understand pacing better, they may be able to support young people with CAHMS referrals (who have anxiety in addition to their M.E), they may be able to help families deal with a difficult school.
What they can't do is 'cure' M.E.
The young people who get better whilst in their service would have improved regardless (as long as they paced reasonably well & didn't do anything stupid).
There are many young people who don't improve whist under her service, or deteriorate, or leave the service yet we never hear about these.
I don't believe she is offering anything that a good GP couldn't - the trouble is that there are still too many GPs who are M.E doubters or don't want to support a 'difficult case' & that's what needs to be targeted.
She has the 'mantle of the expert' in paediatric M.E so she is left alone to get on with it. Parents & young people don't need specialist services. They need GPs in their community & schools that fully understand M.E; they need to feel empowered & not have to hand over responsibility to a service that has nothing to offer them other than writing letters for schools to ensure they provide appropriate education.