Bath M.E Children Unit - any experiences please?

[Scooby2001]

Hello ME community

Can anyone comment on the specialist children’s ME unit at Bath Hospital (run by Dr Esther Crawley)?

I am new to this forum but grateful to read posts and be part of a knowledgeable community.

My 17 year old daughter has had severe ME and EDS for over 3 years. We have seen all sorts of professionals with no improvement and now have a referral appointment date (out patient!) to go to Bath. I know however that Dr Crawley is controversial and beliefs in GET and CBT. I am very hesitant about taking my daughter but I have only heard the negative comments about Bath and not found anyone who has been helped by the hospital?

Please please do let me know if you have any info one way or another? NB. I am struggling to understand how they can only offer out patient support to chronic sufferers??

Thanks so much everyone

[Cruzgirl]

"Professor Crawley’s work is now under formal scrutiny", David Tuller explains the background as to why the UK Health Research Authority is investigating some of Esther Crawley's work.

"In the last year, I have raised multiple concerns about studies from the University of Bristol with the UK Health Research Authority, among others. The HRA is the National Health Service arm that oversees approvals for research in England; the agency’s role is to ensure that research receives a favorable opinion from an ethics committee before it begins.

Yesterday, the agency confirmed to me that, after reviewing the matter, it has raised questions with University of Bristol officials about a number of these studies and has asked them to investigate the situation. The HRA is now awaiting the outcome of that investigation."

virology.ws/2019/01/31/tria...

[Scooby2001 in reply to Cruzgirl]

Thank you for responding with this link, I’ve read / heard similar things but as the only specialist unit I wanted to make sure I wasn’t missing any positive stories from people who had had treatment from Bath and actually been helped? Maybe there aren’t any ( but then how do they continue to practise??) Uts hard to turn down an appointment when there’s so little other ‘help’ ..... thanks again to anyone who can comment

[ALKT in reply to Scooby2001]

better to turn down an appointment with people who very clearly have no real conception of M E . unless you have the same delusional belief that people just wake up one day and decide they would like to spend the rest of their lives being sick for the so called secondary gains. If you really want to understand the reasons why people in the M E community loathe esther crawley I would suggest you check out phoenix rising or science for m e . they are both active site full of useful information and some emotional support .

[Scooby2001 in reply to ALKT]

Thank you for replying. My daughter has suffered severely for over 3 years and as a carer I know only too well the unbelievable distress, loss and lack of understanding that M.E brings. I appreciate your response (it just underlines what I already thought) and did not mean to cause any irritation by asking the question.