there should be symmetrical scrutiny over conflicts of interest - said some people who oppose her do crowdfunding to support people who oppose her.
Q- is there a role for data papers that describe data without giving access to datasets.
A - interested in where they can combine data with other studies
Q - what real risk is there to people who are identified
A - if you have CFS as child and get better then you can't get job in the services, stigmatisation at school, parents don't want to be identified. If you recover and declare that then you get attacked by patient organisations for not having CFS in the first place.
Q - would it be a compromise to share data with researchers and not public
A - thrilled to do that
Q - you have lots of problems with public and groups challenging, does anyone challenge you in that you shouldn't lead the research as you are a paediatrician
A - yes people say that - lots of people say I am a psychiatrist and I'm not (lots of laughing)
Q - reminds her (questioner) of friends who do animal research and people go to their children's sports matches etc. What protection can be put in place for researchers doing valuable research
A - Bristol Uni is v good at protecting people. CFS is considered the worst area. Lots of people don't talk about it though. Everything she does gets reviewed and is used for governance and people say to her not to worry as it's all been reviewed and to just get on with the research
Q - how much of the abuse is because you are a woman
A - a lot of energy goes into cyberstalking....(didn't really come to any point)
questioner then says there is lots of data out there ie HIV where data has been shared and people have not been identified
Talks about doing her bit to protect the children
It was a very different style of presenting to any that I have seen but I won't comment here because it would just be my personal view.