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

[NelliePledge]

I bet the model assumes any swag gets hidden in a shopping bag

 

[Adam pwme]

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

 

[Amw66]

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

 

[Sly Saint]

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

 

[Adam pwme]

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.

 

[MEMarge]

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

 

[Andy]

(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

 

[Hutan]

Posts about a new paper from the CLOCK study have been moved here:
Developing a model for predicting impairing physical symptoms in children... after SARS-CoV-2 ...: CLoCK Study, 2022, Nugawela, Crawley et al

 

[rvallee]

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



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.

 

[Trish]

they give the £25 voucher at the end of the 2 years

Given current rocketing inflation in the UK, that will be worth about 25 pence.

 

[Sly Saint]

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

CLoCk Team
Prof Sir Terence Stephenson
Nuffield Professor of Child Health

Dr Manjula Nugawela
Research Fellow in Quantitative Methods

Dr Snehal Pinto Pereira
Lecturer in Population Health and Applied Statistics

Natalia Rojas
Research Assistant

Emily Cheung
Honorary Research Assistant

Prof Roz Shafran
Chair in Translational Psychology

Prof Bianca de Stavola
Professor of Medical Statistics

Leonard Jones
Admin Assistant

Fiona Newlands
PhD Student





CLoCk Consortium Members
Marta Buszewicz
University College London

Esther Crawley
University of Bristol

Tamsin Jane Ford
University of Cambridge

Anthony Harnden
University of Oxford

Isobel Heyman
Consultant Child and Adolescent Psychiatrist at Addenbrooke’s Hospital

Vanessa Poustie
University of Liverpool

Malcolm Semple
University of Liverpool

Olivia Swann
University of Edinburgh

Trudie Chalder
King’s College London

Emma Dalrymple
PPI Lead

Shruti Garg
University of Manchester

Dougal Hargreaves
Imperial College London

Terry Segal
University College London Hospitals NHS Foundation Trust

Kishan Sharma
Manchester University NHS Foundation Trust

Michael Levin
Imperial College London

Elizabeth Whittaker
Imperial College London




UKHSA Team
Michael Lattimore
Operations Manager

Ruth Simmons
Epidemiologist

Maria Zavala
Immunisation Department

Kelsey McOwat
Senior Data Scientist

Shamez Ladhani
Consultant Paediatrician and Epidemiologist

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'

 

[Ariel]

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?

 

[bobbler]

Another grant, how does she get all this £ ?
Esther Crawley: Sanofi: Exploring the prevalence of Pompe’s disease in patients diagnosed with CFS/ME: £550,000

"What is Pompe disease?
Pompe disease is a genetic disorder in which complex sugar called glycogen builds up in the body’s cells. The disease results from the deficiency of an enzyme called acid alfa glucosidase (GAA), which breaks downs complex sugars in the body. This buildup occurs in organs and tissues, especially in muscles, causing them to break down.

Mutations in the GAA gene, which helps break down glycogen, cause this disorder."

from: https://my.clevelandclinic.org/health/diseases/15808-pompe-disease

Thread on this study here:
https://www.s4me.info/threads/exploring-the-prevalence-of-pompe’s-disease-in-patients-diagnosed-with-cfs-me-2021-crawley.19060/

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?

 

[bobbler]

After Anthony Burgess' novel, I would have advised against naming any behavioral study using either the word "clock" or the word "orange."

CROC?