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

FMMM1 said:
Have no lessons been learned from PACE
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Oh the BPS club have learned some lessons alright. Just not the ones they should have. But then there was never much chance of that happening, was there.
Peter Trewhitt said:
Long Covid Advocacy are doing an excellent job at calling out this mess.
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Hutan said:
It is really gratifying to see such co-ordinated and generally well-conceived push-back against the CLoCK Study. Well done to the people involved. I hope that they will keep pushing.
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I hope they understand and are prepared for just how long the haul and ferocious the resistance is likely to be for them.
 
Hutan said:
What a mess of buck-passing. I don't understand why the research ethics committee that approved the research (Yorkshire/Humber/South Yorkshire REC) isn't answering the letter of complaint. I'm not sure what 'sponsor' means, but it sounds a lot like someone marking their own homework. How can this be ok?

Edit - maybe the letter writing team need to make a submission direct to the Yorkshire etc REC?
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With Stephenson as head of the HRA, the HRA might not provide the most critical assessment of his project.
 
FMMM1 said:
Did HRA fund this and/or did they "influence" the decision to fund this --?
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Re: funding
FMMM1 said:
Seems "NIHR and UK Research and Innovation (UKRI)" funded this "research" [https://www.nihr.ac.uk/news/first-f...long-covid-in-children-and-young-people/28572]
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Re: "influence"
Highly unlikely. "our core purpose is to protect and promote the interests of patients and the public in health and social care research", https://www.hra.nhs.uk/about-us/what-we-do/
 
FMMM1 said:
Seems "NIHR and UK Research and Innovation (UKRI)" funded this "research" [https://www.nihr.ac.uk/news/first-f...long-covid-in-children-and-young-people/28572]

Did HRA fund this and/or did they "influence" the decision to fund this --?
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The HRA gave it ethical approval using their system of research ethics committees. They didn't have any influence on the decision to fund it, although I guess having the chief of the HRA on the research team would influence that...I would say that he should not be involved in research studies as head of the HRA. I was actually surprised it was allowed.

https://www.hra.nhs.uk/planning-and...ple-with-long-covid-clock-study-covid-19-uph/

These committees in my limited experience seem to focus solely on reducing the potential for direct harm to participants of taking part in the research. They rarely (probably never) have methodologists or statisticians on these committees who understand how choice of outcomes and outcome measures can bias the studies significantly, hence making the research potentially unethical before it even starts. They certainly don't seem to care about conflict of interest or adherence to the Declaration of Helsinki in terms of declaring and real or potential conflict of interest to study participants in the participant information sheets as part of the "informed" consent to take part in the research.
 
Sean said:
Oh the BPS club have learned some lessons alright. Just not the ones they should have. But then there was never much chance of that happening, was there.


I hope they understand and are prepared for just how long the haul and ferocious the resistance is likely to be for them.
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I hope so, although it's really hard to accept that it could ever get this bad, let alone that it has been this bad as a choice. But after years, you get the message.

And with time people see more context, and the more context you add, the worse it is:
I gave a professional lecture to a group of physicians on LC & towards the end talked a but about #MECFS & they practically bit my head off. Their defensiveness was utterly palpable and I’ve never been treated so unprofessionally in my life. The physician community has “issues.”
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Trial By Error: Professors Crawley, Chalder & Colleagues Investigate Pediatric Long Covid in Yet Another Study with a Stupid Acronym

"No human being should ever have to read as many papers as I have from Professor Esther Crawley, Bristol University’s methodologically and ethically challenged pediatrician, and Professor Trudie Chalder, King’s College London’s statistically and factually challenged cognitive behavior therapy specialist. Most recently, I had to ask the UK’s Health Research Authority to track down why most of the papers that Professor Crawley was ordered to correct a few years ago, per the results of an investigation into her work, had not been corrected. And Professor Chalder makes one egregious error after another–as when she declared at a PACE press conference that people in the trial got “back to normal,” a serious misstatement of the findings.

Really, I’ve had it up to here with the crap that they publish. Perhaps that’s why I have so far avoided paying attention to a major study in which they both play a role. But the time has come to discuss the project called Children & young people (CYP) with Long Covid—which the authors shorthand as the CLoCk study. (Enough with these stupid pseudo-acronyms! What the @#$ does “clock” have to do with anything???)"

https://virology.ws/2023/04/17/tria...d-in-yet-another-study-with-a-stupid-acronym/
 
rvallee said:
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.
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Yep the “in any way” is a laugh.
What is the subject that takes 2 documents and analyses them for how identical they are?

I guess that - literally showing how identical it all is to what they have been doing with ME/CFS - could be something AI could be relied on for right now.

I mean there were plagiarism programmes that could show how identical documents were a decade ago.
 
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Hutan said:
What a mess of buck-passing. I don't understand why the research ethics committee that approved the research (Yorkshire/Humber/South Yorkshire REC) isn't answering the letter of complaint. I'm not sure what 'sponsor' means, but it sounds a lot like someone marking their own homework. How can this be ok?

Edit - maybe the letter writing team need to make a submission direct to the Yorkshire etc REC?
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Agreed it should surely be the case - in any sensible world- that if either committee had concerns it should veto any project. And certainly the sponsor relying on the ethics of another university’s committee regarding whether what they are sponsoring is ethical is extraordinary.

I’m guessing sponsoring means money and people and time and reputation so they absolutely should be checking it meets their own institutional ethical limits and decisions.

Leeds/South Yorkshire might fit all they know be thinking ‘well we are focusing on the hit that doesn’t involve sponsoring this just allowing it to whatever they are doing’ in their remit of ethics.

Talk about strange given nothing more reputations than ethics, safety and large sums of money.
 
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Hutan said:
One of the biggest problems is that the CLoCK study is going to say 'oh, these symptoms are very common. Look, the children who weren't infected with Covid (as evidenced by a negative test) have just the same sort of symptoms. So, Long Covid isn't a thing.'

So, again, there's trouble with a vague WHO definition of Long Covid, this time a paediatric one. I think Long Covid as a term needs to be abandoned now. Instead, refer to post-Covid ME/CFS (requiring PEM) and post-Covid fatigue syndromes (not requiring PEM).

And trouble with assuming that a negative Covid test equates to not having had Covid.

I guess we can't stop the CLoCK study, but perhaps, like the fairy godmother in Sleeping Beauty, we can limit the damage. We could demand some additions to the protocol that make it less harmful. e.g.
* require periodic testing of the young people in the Covid negative group for Covid antibodies (not the ones given in vaccinations)? If they test positive to the antibodies, remove them from the Covid negative group.

* if people in the Covid negative group report having Long Covid symptoms (eg debilitating fatigue), take a family history of Covid infections around the time of the Long Covid onset in the young person. If close family members did have a Covid infection around the time of onset, then it can be assumed that the young person did in fact have a Covid infection, but, for some reason tests haven't found the antibodies, and so they should be removed from the Covid negative group.

* require the assessment of all young people in the study to be assessed for PEM, and for ME/CFS using a criteria that requires PEM (e.g. the NICE one, or the IOM/NAM one)


Regarding the UCL reply that it is standard practice when assessing the mental health of young people to use a questionnaire that asks about things like stealing, I think it is right to push back about this. Just because it's a standard questionnaire and has been used in assessing mental well-being in cancer, that doesn't make it right. It just compounds the harm. I can recall filling out a questionnaire for my 13 year old son, for an ME/CFS study, on whether he smoked or chewed tobacco, and if he was afraid of spiders. Enough with these stupid surveys. If it's a standard questionnaire, then update it, amend it, chuck it out and create a new one.

I think we could ask that the data from the questions of very limited relevance to Long Covid are deleted and not analysed. At the very least, we could ask that parents and the young people in the study are asked whether they would like to withdraw their data on these questions.

Edit - I note that the letter writers are calling for any reference to lockdown to be removed from the study. That seems like a good idea.
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Yep on that crap harmful questionnaire stuff, and I’d add a not unreasonable addition: ‘and apologise and admit your inappropriateness’

there is enough in the social psychology schools even if this weird are this lot sit under pretend it doesn’t exist to suggest such things are just ethically bad that we all shouldn’t have to pretend black is white anymore with these people.

‘it’s ok cos we asked it to people with cancer’ talk about distorted thinking patterns.
Someone should get whatever cancer charity to put out via Twitter a survey and open responses how ok they are with those questions and what the implications are gif their kids - MAKING SURE the oh so confident it’s fine individual is name-checked. Time for these people to stand by their own actions and history at least whilst their ‘Noone else would be bothered’ is tested
 
Andy said:
Trial By Error: Professors Crawley, Chalder & Colleagues Investigate Pediatric Long Covid in Yet Another Study with a Stupid Acronym

"No human being should ever have to read as many papers as I have from Professor Esther Crawley, Bristol University’s methodologically and ethically challenged pediatrician, and Professor Trudie Chalder, King’s College London’s statistically and factually challenged cognitive behavior therapy specialist. Most recently, I had to ask the UK’s Health Research Authority to track down why most of the papers that Professor Crawley was ordered to correct a few years ago, per the results of an investigation into her work, had not been corrected. And Professor Chalder makes one egregious error after another–as when she declared at a PACE press conference that people in the trial got “back to normal,” a serious misstatement of the findings.

Really, I’ve had it up to here with the crap that they publish. Perhaps that’s why I have so far avoided paying attention to a major study in which they both play a role. But the time has come to discuss the project called Children & young people (CYP) with Long Covid—which the authors shorthand as the CLoCk study. (Enough with these stupid pseudo-acronyms! What the @#$ does “clock” have to do with anything???)"

https://virology.ws/2023/04/17/tria...d-in-yet-another-study-with-a-stupid-acronym/
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At least I can now be reassured it’s reading and living under their crap that is responsible for this reasonable and accurate reaction and one doesn’t have to actually have ME to get it.

It’s shocking isn’t it that these grubby/grabby(?) people crawl around collecting funding like some dirty slot machine for all this crappy lowest common denominator into a non-identifiable condition then fixate on a poorly define measure, Association-based non-methodological nonsense.

and then you remember they are experimenting not just on kids but seriously ill ones and ones they tend to do research on and infer with their diagnoses removes their ability to speak about their own bodies. And that at least one of them didn’t care enough about past ethical errors that they even corrected the statements on them. God knows how the people who cite ‘good intentions’ as if the pretence of that negates anything, think that one stands after those got pulled up and ignored.

EDIT: Can we now say definitively by now that we can literally say as fact that Crawley doesn’t care about ethics/ethical sign-off being accurate? Or whatever the best statement of what that means is? On basis she did it repeatedly in the first place, even when it knowingly had the issue pointed out as wrong yet still done it so many times you’ve got that many multiple scenarios to remedy and then had been informed of those for so long on so many papers and had in in your power to fix them but chose not to make those short tasks any priority?
 
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Their defensiveness was utterly palpable and I’ve never been treated so unprofessionally in my life. The physician community has “issues.”

Sure does. I used to work in a hospital before I got sick. I have closely worked and socialised with, and even gone out with, doctors. They are very reflexively defensive and rank-closing. Not all, but as a group, definitely.
 
Hutan said:
It is really gratifying to see such co-ordinated and generally well-conceived push-back against the CLoCK Study. Well done to the people involved. I hope that they will keep pushing.
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Hutan said:
What a mess of buck-passing. I don't understand why the research ethics committee that approved the research (Yorkshire/Humber/South Yorkshire REC) isn't answering the letter of complaint. I'm not sure what 'sponsor' means, but it sounds a lot like someone marking their own homework. How can this be ok?

Edit - maybe the letter writing team need to make a submission direct to the Yorkshire etc REC?
Click to expand...

I think the key thing is to focus on the politicians [particularly the Minister] i.e. they are ultimately responsible for funding very low quality research.

Jonathan Edwards has highlighted that MRC generally funds sound research but NIHR [and UK Research and Innovation (UKRI)?]" basically exist to fund the (political) "other stuff". It may be helpful that this hasn't gone down well with the Long Covid community.

The APPGs and supportive politicians ---- may be the best way to challenge this ---. Potentially the NICE finding (re ME/CFS Guideline) that studies were "low or very low" quality, may be useful --- here we are again ---

A proper fix may be @Caroline Struthers suggestion of a body to assess applications --- before the (public) funding is awarded --- e.g. publish brief outline & ask for comments
 
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Wonder if APPGs have identified poor quality of research as an issue --- if they have then, possibly, one way to approach this would be to praise their (APPG's) efforts to improve research and highlight this as a example of poor quality research which is highly unpopular --- politicians/need to get elected/re-elected ---.

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

Any idea why Long Covid Kids aren't saying much about this?
A friend is on the Long Covid Kids group & said they were recruiting & helping the clock study doing the PPI. Quite a few parents weren't happy that their kids were being signed up and having to answer the questionnaires but no warning from the charity.
It's known though that the CEOs daughters doctor is Esther Crawley so looks like they are close.
 
Sly Saint said:
they might not be completely aware though of her past research, bad methodology and dubious ethics.
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although I note that several of the signatories (see op) are LCK Champions.
LCK Champions (longcovidkids.org)
so some of them must know about Crawley, and Chalder for that matter.

eta: I wonder if this might have something to do with Crawley not being a 'co-author' on the latest PDW publication? IE as she no longer has the alliance with AYME anymore, maybe she sees LCK as a potential 'patient partner' for future research on LC in children?
 
It does both her and Chalder were very quick to see the 'gap in the market' when long covid came in esp in kids. You'd hope LCK would know something about it? it's good practice to know the researchers history when engaging with them. Or are they going down the route Action for Me went in not signing open letters and working with controversial researchers? Suppose only time will tell.
 
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