Non-hospitalised Children & young people (CYP) with Long Covid (The CLoCk Study), 2021, Stephenson and Crawley

post copied from Esther Crawley - (what drives her) plus quotes


https://twitter.com/user/status/1446944817901182977

 

At least for Covid there are some medics vocal in kids' interests

https://twitter.com/user/status/1446939073873170434

 

Crawley was just on BBC One South Today news about long covid in children.
I think you can still watch it from the start otherwise it might be repeated tomorrow.
https://www.bbc.co.uk/programmes/m0010lxt

@Adam pwme

 

Thanks Sly. It's pretty much the same apart as the one on the other day. Apart from the person in the studio was different.

 

For those who haven't managed to see the child in swimming pool yesterday, this is from 10.50 -12.02.

 

(First?) publication from this team, Physical and mental health 3 months after SARS-CoV-2 infection (long COVID) among adolescents in England (CLoCk):..., 2022, Stephenson et al

 

Bizarre things happening with recruitment for this study, participants don't even appear to be told they are taking part:

https://twitter.com/user/status/1527681439642357760


Then again Crawley apparently doesn't need informed consent, or even consent, for her papers. This has been validated by research authorities. Somehow.

I had to laugh at the fact that they give the £25 voucher at the end of the 2 years. Like giving it right away would be too generous, they have to add this mediocre incentive once everything has been done just so that a few people more will fill the damn questionnaires.

 

I don't know if this has been posted or not; it just came up on a recent search. (ie the page, not the info per se).

Meet the Team

https://www.ucl.ac.uk/child-health/...d-teaching-department/champp/psychological-10

I'm guessing that the LC community are aware this study comes under 'Psychological Medicine research'

 

Re: the team, wasn't Sir Terence Stephenson the person who was allocating the funds for covid research in the first place and decided to fund this study? Is that allowed? (Okay, that's a silly question). Did I misremember that?

 

Because she runs the one place that all/most of/many of (?) the children who get ME/CFS tend to/have to (?)/generally are sent to?

If you want to research young people with ME then who else gatekeeps access to the sample you need to recruit? And 'can overseee' the ethical stuff related to medical care and observation etc? Could a private company actually take someone who wasn't under consultant/clinic-level biomed care onto a trial without feeling they'd be taking on 'work' to do with looking after said patient?

Which sort of underlines how without proper clinics that have biomed staff rather than the same old staff from irrelevant areas being told to 'try and tweak what they do to somehow seem compliant' research is hugely stymied for ME/CFS and is potentially the big sticking point?

 

CROC?