Trial By Error: No Ethical Review of Crawley School Absence Study

Daisymay

Daisymay

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In his article, Dave Tuller said:

In her response, Professor Crawley also referenced top-level admiration for her work. “The project has been of great interest to the Department of Education who included it last year as an exemplar in their training for attendance officers in the UK,” she wrote.

I find this rather chilling, but maybe I'm reading too much into this..... for adults with ME we have DWP co-funding PACE, now for youngsters we have the Department of Education showing great interest in EC's research. So do they want to catch them young and change their aberrant behaviour before it gets engrained to save the state benefit system money down the line?

And if the children don't improve with CBT/GET and their school attendance remains poor it can all be blamed on the children and/or parents.
 
Molly98

Molly98

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the more I read and begin to understand about this, the more it seems very unethical to say the least.

As several have pointed out above, attendance officers are not medical at all. They are not welfare, they are not neutral.

Generally they make parents and kids lives hell.

I am very puzzled by this method of recruiting patients.
Is this ever heard of for other childhood diseases?

What makes them assume that unauthoried absent is down to illness or health issues. Most are not. otherwised they would be authorised.

If parents have a child who is sick with ME, most parents would be worrying like crazy what is wrong with the child and taking them to the doctor many times, they would likely to be discussing with the teacher or schools their concern about their child's health, that they are sick and possibly that doctors don't know whats wrong.

I don't get how trawling unexplained absence picks up ME. I just don't buy it.

Do they do this for depression? asthma? gluten intolerance? anaemia?
or anything else health related. they don't even trawl for head lice anymore, in fact if a child has head lice, the teacher can not even tell the child or parent but has to send an indiscriminate letter to all class parents just asking all parents to check their kid's hair for head lice as there has been a case in class.

It seems to me that this was about recruiting for trials that she was perhaps struggling to recruit for and trying to find evidence that would keep her in a job and grow her clinic and justify funding, because so many kids have ME and she knows best how to treat them, when in actual fact a good proportion probably had depression, nutritional deficiencies or too many late nights on the Xbox.

The other thing that seems rather odd is that if they wanted to identify kids who potentially had ME, surely the school nurse or even local gp clinics would be better equipped to know who is not attending school because they are feeling unwell as opposed to identifying all kids indiscriminately through attendance records. So kids who for many good reasons may hate school, or have been bullied, or have school anxiety or a million other reasons, such as having to care for a parent or sibling are called to one of these meetings to be interrogated on whether they may have ME.
 
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user9876

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Although Crawley is the main author there are two other authors who are professors at Bristol. We should see them as equally culpable of failing to get ethical approval. As senior members of staff they should be checking.

Also Bristol University should be exercising governance over the medical research processes. Clearly they are failing to do so.

It doesn't seem like there is any actual comeback to anyone for failing to gain ethical approval but I think at the very least it should reflect badly on the reputation of those involved and the institutions.
 
Cheshire

Cheshire

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Does someone remember what actually happened with the SMILE trial (Lightning Process) ethical review?
I remember that there was a problem because this "treatment" was tested on children while it had never been tested on adults, which is normaly impossible. But I don't recall on what ethical grounds it was finaly accepted.
 
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Invisible Woman

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It also strikes me that Crawley is putting herself in a position where she can cherry pick cases, as she is the one who is, presumably, diagnosing ME.

As there doesn't seem to be any independent verification of her diagnosis she could be using any old criteria she likes. Now, obviously I cannot say that she has done this, but she could simply be choosing children who do not have ME but who could be candidates for making her chosen therapy seem effective. There is no form of independent oversight or mechanism to police this.

Given how threatening this must seem to both parents and children alike, I should think that there must be an element of coercion felt by some parents and their kids. Again no layer of protection or independent analysis.
 
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user9876

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Cheshire said:
Do someone remember what actually happened with the SMILE trial (Lightning Process) ethical review?
I remember that there was a problem because this "treatment" was tested on children while it had never been tested on adults, which is normaly impossible. But I don't recall what on what ethical grounds it was finaly accepted.
Click to expand...

I think Crawley claimed that CFS is different in children and therefore the trial should go ahead.
 
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user9876

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Invisible Woman said:
It also strikes me that Crawley is putting herself in a position where she can cherry pick cases, as she is the one who is, presumably, diagnosing ME.

As there doesn't seem to be any independent verification of her diagnosis she could be using any old criteria she likes. Now, obviously I cannot say that she has done this, but she could simply be choosing children who do not have ME but who could be candidates for making her chosen therapy seem effective. There is no form of independent oversight or mechanism to police this.

Given how threatening this must seem to both parents and children alike, I should think that there must be an element of coercion felt by some parents and their kids. Again no layer of protection or independent analysis.
Click to expand...

One of the additional reasons that objective measures should be used in ME trials for children is the coercion felt by parents to agree to treatments and give good reports. With the number of child protection cases that happen in the UK the threat is a very real consideration even when not made to a particular family. Crawley is doing trials with only subjective measures as she has learned how to get better results from PACE but I suspect the results will still disappoint her because her treatments are crap.

I think that Bristol University should be made to pay back money to research funders where open label trials are only using subjective measures as they should know the results will be meaningless. The problem is some academics seem to think research funding is to further their careers not to help patients - which is why so many were saying they can't share data in case others publish papers before them.
 
JoanDublin

JoanDublin

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Mithriel said:
I wasn't able to comment on the site, I have real difficulty with the technology so if anyone thinks it would be useful, feel free to make this point there.

I don't think DT or many ME patients get the point about an Attendance officer being present. It made my stomach turn over. Parents in the UK are often threatened with court and prison if their children don't attend school, it is used as a threat to the kids as well.
My grandson has severe anxiety and was unable to cope with secondary school. His form teacher and deputy headmistress were very good with him, though we know know it was futile as the anxiety was masking quite bad autism.
But their efforts were totally undermined by the Attendance Officer and Headmaster who wanted to make a contract with penalties for breaking it, as if he did not WANT to go but simply couldn't. Prison for mum was mentioned which did nothing for his stress levels.

A friend's granddaughter was not so lucky. I think her absences were caused by her mother's sever depression - she was scared to leave her alone, but court cases were used as threats and being sent to a residential special school felt like prison for her as well as the torment of her concern for her mother. These people have really power over the children and mess them up.

If I was meeting EC with an Attendance Officer there I would be too frightened to refuse to join her research which is coercion pure and simple.

(As an aside, my grandson was suicidal because he felt so guilty, being reassured that it was not his fault solved that problem, thank god. Being told by creepy crawly that your ME is all your own fault makes me weep for those children. How evil can you be.)

Mithriel
Click to expand...

I've posted this on your behalf under David's blog as I think you articulate so very well the sheer horror that children and parents face in these type of situations, when their very liberty and well-being is threatened to the point where they would agree to anything or contemplate suicide
 
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anni66

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Valentijn said:
That was PACE (unless there's been another incident), where the principal investigators didn't disclose their financial ties to the insurance industry. It appeared in the published articles, but not in the patient consent forms.
Click to expand...
I thought consent was given for research which in effect was a clinical trial, but could be wrong
 
lilpink

lilpink

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Unfortunately the merging of these threads makes for some confusion I think. I have asked the mods to re-title it to reflect Tuller's blog title and also to give me the opportunity to edit the first post to make it easier for newcomers to understand what's going on. It seems a merged post is un-editable in the normal way.
 
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