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

With Stephenson as head of the HRA, the HRA might not provide the most critical assessment of his project.

 

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 --?

 

Re: funding

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/

 

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.

 

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:

https://twitter.com/user/status/1647094788863270914

 

They pretty much seem to approve anything. I'd like to see some proposals they have actually turned down.

 

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/

 

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.

 

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.

 

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

 

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?

 

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

 

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.

 

they might not be completely aware though of her past research, bad methodology and dubious ethics.

 

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.