Long Covid Advocacy: Is the “greatest medical scandal of the last century" being repeated for a generation of children? (about the CLoCK study)

That’s a pretty good list of signatories and a solid letter. As far as I can see, part two (with the CLoCK response) is promised but isn’t actually available online yet. Has anyone else found a live version?

 

I had not really picked up on the CLoCK study. The letter raises some very serious issues - notably the one of informed consent.

 

Long COVID in Children and Young People

To determine the symptoms of Long COVID-19, define Long COVID-19 and determine how many young people suffer from Long COVID-19. Please note, CLoCK is a research project that is entirely separate from the provision of clinical services.

CLoCk Team
Professor Bianca de Stavola
Professor of Medical Statistics

Jake Dudley
Honorary Research Assistant

Leonard Jones
Admin Assistant

Fiona Newlands
PhD Student

Dr Manjula Nugawela
Research Fellow in Quantitative Methods

Dr Snehal Pinto Pereira
Lecturer in Population Health and Applied Statistics

Natalia Rojas
PhD Student

Professor Roz Shafran
Chair in Translational Psychology

Professor Sir Terence Stephenson
Nuffield Professor of Child Health

Laila Xu
Research Assistant

------------------------------------------------------------------------------

CLoCk Consortium Members
Marta Buszewicz
University College London

Trudie Chalder
King’s College London

Esther Crawley
University of Bristol

Emma Dalrymple
PPI Lead

Professor Tamsin Ford
University of Cambridge

Shruti Garg
University of Manchester

Dougal Hargreaves
Imperial College London

Anthony Harnden
University of Oxford

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

Michael Levin
Imperial College London

Vanessa Poustie
University of Liverpool

Terry Segal
University College London Hospitals NHS Foundation Trust

Malcolm Semple
University of Liverpool

Kishan Sharma
Manchester University NHS Foundation Trust

Olivia Swann
University of Edinburgh

Elizabeth Whittaker
Imperial College London

 

Has Part Two been published yet?

 

Beyond that, the whole set of studies funded by this round has turned out to be a terrible waste of resources. Unless I'm mistaken, they're all completed. And absolutely nothing to show for it.

Not that research is guaranteed to produce results, but the selection of proposals was very weak and not at all aligned with the needs. Clock was especially bad, for sure, but this was a terrible allocation of priorities. I think only one study even had merit, and barely at that. Zero coherent overarching strategy or effort.

 

No, not yet.

 

I sure love a good naming and shaming when it is deserved. More of this. People are failing us. Not nature. Not fate. People. Even systems are made of people. Name them. Shame them. Send them packing, they have a great career in alternative medicine if they really want to keep doing the same crap.

This indeed important. Regardless of the overall sabotage of the guidelines, they offer the only written protection from a lot of this:

Of course the guidelines are blatantly ignored and violated on purpose. But it is written that they're not supposed to be doing most of what they do. Which also shows blatant disregard for proper process, and especially for evidence. The deep irony of evidence-based medicine is that evidence is truly irrelevant to the paradigm.

Whenever research is this poor, when experts are failing miserably, it sadly falls on the public to hold them accountable and criticize them where the system is failing at it. This is their own failing, however. It does not reflect a public that doesn't understand science, so much as a profession that doesn't understand what their job is even about.

 

if you click on the tag 'clock study' at the top of this page, there are 7 threads relating to it.

 

I must have reckoned it was a waste of time!

 

Part 2 is now online

Not Reassuring – the response to the formal complaint about the Long Covid paediatric study, CLoCK.
Part Two - The CLoCK Files, the crisis in paediatric Long Covid
See https://longcovidadvocacy.substack....id=114996733&isFreemail=true&utm_medium=email

 

From the text, very interesting:

We had been made aware of a CYP who had been assigned the control group even though she had a Long Covid diagnosis and that this had been raised in the CLoCK questionnaire with no action. This raises the question that if one child has been put in the control group due to a negative test but has self-reported Long Covid and/or a Long Covid diagnosis other incidents are inevitable. This means an invalid study as the control group is contaminated.

The control group needs to be contacted to see if there are other cases of self-reported symptoms and/or Long Covid diagnosis’. This flaw will give false results and will not be in the favour of CYP. It has the ability to discredit Long Covid as connected to a Covid infection as symptoms will be seen in the control group. Relying on the unreliable, tests for Covid for a diagnosis of Long Covid, is fraught with difficulties.

This is especially important as the study;

“will assess if there are any differences between CYP who initially tested negative or positive test for covid”.​

 

Precisely

"For the study, published on the preprint site Research Square and funded by the NIHR and UK Research and Innovation (UKRI), researchers surveyed---!

Have no lessons been learned from PACE ---- have the APPGs been lobbied --- public money being wasted on flawed research --- post NICE review ---

Jonathan predicted all of this ---
[https://www.s4me.info/threads/post-covid-19-syndrome-and-the-potential-benefits-of-exercise-2021-jimeno-almazán-et-al.20964/#post-350680]

Maybe we should have some grudging respect for these scam merchants --- after all, if they keep getting paid [public money] [EDIT - for] the same flawed result, then why change ----

 

We can definitely see that it's not a clinical study. No confusion here.

But the second part is a blatant lie. I don't know how these people think they're right when they have to lie so much about everything they do, but it's even more absurd that no one in the system cares, how this practice is encouraged and nurtured. Models, already a flimsy construct when they lack evidence, built on lies have no place in healthcare. And yet here they clearly are, drawing on the exact same formulaic process drawn from psychosocial research into, well, anything, really.

Especially the "in any way" is just excessive. It's in all the ways, but they can't bother putting out a half lie, they simply go all the way and tell the most excessive possible lie. Absurd. None of this happens in other professions. People with poor ethics work in every profession, but the lack of ethics has to be checked out during work hours. Not here, work hours are the time for lying, it seems. In medicine. Of all things.

The only scenario where this is not a blatant lie is the sad fact that, truly, most of this type of research, and especially BPS research, is just universally as poor as this. So in a way they feel that it's true, since it's not just ME research that is as awful as this, they can draw plentifully from equally awful "research". But we know better, the formula is identical, and the involvement of both Chalder and Crawley makes this lie especially insulting.

But given the high % of LC that is ME, this only scenario would mean they didn't bother addressing the overlap, while doing everything identical to psychosocial garbage done on ME, which as an excuse is about right where "uh, I don't even know what room I'm in right now" level of ineptitude.

Just deeply unserious. There is no leadership anywhere to be found, no quality control, no ethical protection and a deeply disturbing obsession with pseudoscience.

 

Long Covid Advocacy are doing an excellent job at calling out this mess.