Investigating the effectiveness ... of FITNET-NHS compared to Activity Management to treat paediatric CFS/ME, 2018, Crawley et al. Protocol

[MEMarge]

this is a gargantuan waste of research money...[/QUOTE]

Good for further motivation to support DT.

 

[Sly Saint]

as AYME have been absorbed into AfME is FITNET now under their 'supervision' like PACE was?

 

[Esther12]

as AYME have been absorbed into AfME is FITNET now under their 'supervision' like PACE was?

I don't know. It had been stated AYME were assisting with FITNET-NHS, so if that has changed, should participants and ethics committees be informed of the change?

I just looked at the FITNET-NHS FAQ, and see that they have added a link to Crawley's TEDx talk, even though the video itself has now been unlisted on youtube.

 

[Sly Saint]

@dave30th
do you know what the situation is/should be. IE presumably ethics approval was given partly because she had the backing of a patient organisation (AYME)(?)

 

[dave30th]

My impression is that in this domain of research, the ethics committees, at least in the Bristol neck of the woods, appear to give approval for whatever the researchers ask to do--no matter what the proper approach would ordinarily be.

 

[Amw66]

Video been quoted on twitter by Dr Geraghty querying recovery rates.
So so poor

 

[Amw66]

 

[Amw66]

 

[Amw66]

 

[Amw66]

Sorry for duplication - i' m pretty crap at twitter ...

 

[Trish]

Sorry for duplication - i' m pretty crap at twitter ...

I'm even crapper. Still don't know how to put tweets here.

More tweets about this.
https://twitter.com/emmapsychology
And here's the video referred to:

 

[Inara]

I can't watch that video. It makes me too angry. Shame on them, especially Mrs Crawley!

 

[Joh]

 

[JohnTheJack]

I was poking around on the Bristol Uni site today and noticed that they're flogging Fitnet with Crawley's TEDx talk.
https://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/fitnet-nhs/faq/

 

[chrisb]

I was poking around on the Bristol Uni site today and noticed that they're flogging Fitnet with Crawley's TEDx talk.
https://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/fitnet-nhs/faq/

I noticed that on another page. This looks like an error of judgment. You would think they would wish to conceal evidence capable of causing serious reputational damage.

The first talk could possibly be excused as a case of "misspeaking", but not the second one.

 

[Jonathan Edwards]

That page seems to be blank for me.

 

[Sly Saint]

I was poking around on the Bristol Uni site today and noticed that they're flogging Fitnet with Crawley's TEDx talk.
https://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/fitnet-nhs/faq/

https://www.s4me.info/threads/esther-crawley-what-drives-her-plus-quotes.1139/page-5#post-86388

 

[JohnTheJack]

That page seems to be blank for me.

Odd. Loads OK still for me.

 

[TiredSam]

And for me.

 

[Andy]

Still recruiting, https://bepartofresearch.nihr.ac.uk/trial-details/trial-detail?trialId=7400&location=&distance=