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

September 2019
National Institute for Health Research (NIHR) Research for Patient Benefit (RfPB) Programme: £149,000. Measuring Health in Children with CFS/ME: Refinement, application and evaluation of new PROM (PEACH) in routine practice. Esther Crawley and Roxanne Parslow. February 2020-2022

Has anyone heard of this? I vaguely remember that they were doing a study to look at a better fatigue questionnaire than Chalder's.
 
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/explo...nts-diagnosed-with-cfs-me-2021-crawley.19060/
 
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Another stupid title 'Clock' Would be such an easy way to screen out the guff. 1.35 million for that woman is an insult to all that is honourable. I'm seeing the results now: children have long covid because they're traumatised and not going to school.
 
Stevenson Terence PI. Crawley Esther Co-A. Non-hospitalised Children & young people (CYP) with Long Covid (The CLoCk Study). £1.35 million
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eidt: I didn't notice that the name was spelt differently, but it still looks like Terence Stevenson could be the new chair of the HRA?

In September 2019 he was appointed Chair of the Health Research Authority, succeeding Professor Sir Jonathan Montgomery.[12]
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https://en.wikipedia.org/wiki/Terence_Stephenson

edit 2: Later confirmed that it is the same guy.
 
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Stephenson was most notable for guiding the RCPCH in agreeing 10 published national standards, Facing the Future: Standards for Paediatric Services. This was the first time the College committed publicly to a defined set of standards for all children receiving inpatient care or assessment across the UK.[2][3]

Interesting as Crawley has had complaints about her treatment of child patients. Stevenson worked at ormond street hospital, which I have previously heard treated m.e. children terribly; no idea what his history with M.E. kids is. But let's hope he's of a differant caliber to his compatriot.
 
Sly Saint said:
yes I found that too but the PI for this trial is Terence Stevenson (with a ''v") so not sure its the same person.
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Thanks. It looks like I've made a mistake, but then I cannot find a Stevenson with a 'v', and this one was a paediatric doctor, and one of his top co-authors on researchgate is Rona Moss-Morris: https://www.researchgate.net/profile/Terence_Stephenson

Maybe Bristol spelt his name wrong? I'll edit my earlier post.
 
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