Investigating the factors associated with meaningful improvement on the SF-36-PFS ... young people, 2023, Crawley et al

Does the increase in home tuition tally with the drop out rate? So getting worse but still in education of some sorts

 

And they'll keep saying so anyway. It's been their model from the start, and these people have shown a consistent pattern over decades of not caring one bit about evidence. That's why they started with assumptions devoid of any evidence. Many other awful researchers have started doing the same with LC, the problem isn't even with just this group of ideologues.

We even saw today yet another "review" of exercise treatments that report zero adverse reactions and a high degree of success, which completely contradicts real-world data but they don't know about that, don't bother with it. Evidence is entirely irrelevant to the evidence-based medicine process.

The big issue really isn't with them at this point, it's that they are allowed to get away with it. Their services will continue getting funding, will get referrals from within the healthcare system, and they will still be allowed to make claims that they, sometimes, debunk themselves. Even though by their own published data, they deliver nothing at all. They'll keep boasting about high rates of success anyway, and get away with it.

It's like corruption. It's one thing to find corruption. It's a whole other thing to find that the people whose job it is to keep corruption in check have known about corrupt individuals for decades and keep choosing to do nothing, even when the corruption has been exposed.

I find it hard it to blame them that much anymore, this is so much bigger than this small gang of quacks. It's a lot like all the self-important MDs who called every COVID wave the last, who sneered arrogantly at anyone disagreeing that herd immunity was sure to happen in months, how any long-term symptoms are caused by fear of the virus, "lockdowns" that never really happened, and a bunch of other nonsense.

None have lost their job, in fact many have been promoted, even awarded for being wrong. Awarded by their peers. Somehow. Peers who have cheered the end of measures that protected them and vulnerable people from repeat infections, which they decided must be harmless since people aren't dropping dead on the street.

Huge parts of this system are built to incentivize people being wrong. It nurtures them, funds them at the expense of people who got it right from the start. The only people who have actually gotten disciplined are those who were right all along and told uncomfortable truths.

The foundations of medicine are rotten. Somehow. I don't know how this mess gets cleared up other than with superintelligent AIs, it's just stuck in a loop of failure. They're as detached from reality as any old aristocracy was to things happening beyond the ramparts of their castles.

 

Only glanced at a few comments - excellent analysis @Simon
Basically no objective monitoring e.g. Actimetry (Fitbit type devices), so the claimed improvement relies on the responses to a questionnaire in an unblinded study (usual crap). Add in the excellent analysis by Simon and the slight increase in scores (suggesting improvement) aligns with the PACE study where we know that participants weren't able to increase hours worked, participation in education --- return to a normal (pre-illness) life.
OK the funding was awarded pre NICE* but if the study has just been published then the UK charities should highlight their opposition to public funding of flawed research --- that message needs to get through to the public/government (TAX) funders --- fund a flawed study --- expect criticism! Sooner or later the alarm bells should ring --- inevitable criticism for funding flawed research!

@Adrian commented recently that there had been some improvement i.e. these studies shouldn't be funded now --- correct?

*
"

• Funding EC was funded by a National Institute of Health Research (NIHR) Senior Research Fellowship (SRF-2013-06-013). AB was funded by the National Institute for Health Research (NIHR Doctoral Research Fellowship, DRF-2017-10-169). ML was funded by the National Institute for Health Research (NIHR Doctoral Research Fellowship, DRF-2016-09-021). DG was funded by the National Institute for Health Research (NIHR Doctoral Fellowship NIHR300219). This report is independent research. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.
  
  
• Competing interests EC runs the specialist ME/CFS service of the data reported, has received one grant from Medical Research Council, multiple grants from the UK National Institute for Health Research (NIHR) and is an unfunded medical advisor to the Sussex & Kent ME/CFS Society. CM was a co-applicant on two UK NIHR grants in ME/CFS. The other authors declare no competing interests."

https://bmjopen.bmj.com/content/13/8/e069110

 

Yea I'm puzzled why they don't use actimetry (Fitbit type devices). Actimetry was used in the rituximab trial, which started in 2014*, so really the technology has been around for at least a decade. There's an ongoing trial in Aberdeen** and talk of a study in Canada**; so hopefully we'll see progress in applying current technology.

Crawley (one of the authors of this study) is also an author of the SMILE study***. The initial (SMILE) study protocol used school attendance as a primary (objective) outcome and questionnaires [SF-36-Physical Function Subscale (SF-36-PFS)] as a (subjective) secondary outcome. The objective outcome showed no improvement but, hey presto, switching to (subjective) questionnaires showed improvement & this was duly published!

*https://clinicaltrials.gov/study/NCT02229942
**https://www.s4me.info/threads/uk-ab...rstanding-of-fatigue.33400/page-3#post-491698

***
Outcome swapping[edit | edit source]
The primary outcome was initially to be based on school attendance.[3] This was changed to the physical function short form (SF-36) questionnaire, with most secondary outcomes also being self-assessed using the following scales: the Chalder fatigue scale, pain visual analogue scale, the Spence Children’s Anxiety Scale (SCAS), the Hospital Anxiety and Depression Scale (HADS) for children aged 14 and over,[4], and the Euroqol (EQ-5D)[5] a five-item quality of life inventory, plus school attendance.

 

I'm thinking of trying to draft something on this & sending it to the APPGs [ME/CFS & covid]
The paper states that this was funded by National Institute of Health Research (NIHR) - is that UK rather than US?

• Funding EC was funded by a National Institute of Health Research (NIHR) Senior Research Fellowship (SRF-2013-06-013). AB was funded by the National Institute for Health Research (NIHR Doctoral Research Fellowship, DRF-2017-10-169). ML was funded by the National Institute for Health Research (NIHR Doctoral Research Fellowship, DRF-2016-09-021). DG was funded by the National Institute for Health Research (NIHR Doctoral Fellowship NIHR300219). This report is independent research. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.
  
  
• Competing interests EC runs the specialist ME/CFS service of the data reported, has received one grant from Medical Research Council, multiple grants from the UK National Institute for Health Research (NIHR) and is an unfunded medical advisor to the Sussex & Kent ME/CFS Society. CM was a co-applicant on two UK NIHR grants in ME/CFS. The other authors declare no competing interests.
  

 

Yes, the solution seems relatively simple i.e. the UK Government funding bodies* adopting a policy of requiring objective outcome criteria - hours worked/school attendance/, actimetry (Fitbit type devices)---. Despite the problem being highlighted** NIHR recently funded this study - correct?

*National Institute of Health Research (NIHR) seem to be the main funders but Crawley also states "[she] has received one grant from Medical Research Council"

** e.g. debate in Westminster; in particular reference to Vink re level of disability labelled as improved yet objectively they would qualify for a transplant!
https://hansard.parliament.uk/lords...hronicFatigueSyndromeMyalgicEncephalomyelitis & https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498783/

 

Ah, I knew I remembered they did that in one trial. I thought it was PACE, but it's just another Crawley trial. Then again, the lowering threshold in PACE is just as egregious, and it wasn't just allowed, it's defended as a good thing by many.

The institutions promoting these quacks deserve just as blame for what they did. They could not possibly not understand that it was wrong, ethically but also on the most basic principles of professional duty.

 

Yea and the journal is BMJ - perhaps there's no actual link to medical professionals (is there?) but if there is then they surely/logically have a responsibility i.e. not to publish something that's basically misleading/unevidenced.