Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

But how would they know of the existence of David's blog unless a patient had brought it to their attention? Patients who are aware of the blog may well not mention it because they are afraid of sounding bolshy. Why would an ME clinician google 'virology blog'?

If very sick patients can find it, why not clinicians with a special interest in ME?

Google? Facebook? Twitter?

Why would a clinician in today’s world NOT go and look to see what else is being said?

Maybe I’m naive in thinking they want to know?
 
How can we get this information to ME clinicians without individual patients having to be labelled bolshy? As the only person within the NHS that I’ve had any 1-1 contact with was a physio working at a CFS clinic who described AFME as “not too bad” it seems unlikely they would be open to hearing what ME Association might send them let alone MEAction. I would suggest trying to get AFME to do something to repair previous harms they’ve committed. but at this point, based on the evidence of their lack of urgency on addressing the problems of their patient materials, I have less than zero confidence that they would get right messages.
 
Why would an ME clinician google 'virology blog'?
They might not do that, but if they are writing a paper claiming to be a systematic review of paediatric ME, including treatments, they might want to look a bit more into the SMILE trial before stating that it demonstrated LP is effective, especially as it was one small trial of a commercial product not currently used in the NHS. Hardly sufficient for such uncritical endorsement.

If you google SMILE trial, the MEPedia article about it comes up number 3 on the list, which, though out of date, references many critics including Coyne and Tuller, and a letter from a Professor of Theology questioning the ethics of the trial.
And David Tuller's Trial by Error articles on SMILE are listed on the second page of google links. Not hard to find.
 
Because his name has often appeared in the general press in connection with criticism of Pace, and anyone who isn't abreast of that is not really up to date.

I don't think that is realistic. Who accesses 'the general press' these days? I read one paper online and David's name has never come up (the Guardian). I never see the other papers unless someone points something out on the forum.

And even if someone has heard of David they are not necessarily to know he has blogged about SMILE. I agree that they might have discovered this but for a busy professional trying to get their work done within the week and have a breather at the weekend rummaging through blogs is not a priority.

When I was working on RA I didn't go looking for chitchat on social media. I didn't that often read a paper I was so busy with the work. I updated twice a year at conferences.

I think maybe people on the forum may forget that the things we discuss occur in quite a sealed bubble - which is the half of the problem.
 
If you google SMILE trial, the MEPedia article about it comes up number 3 on the list, which, though out of date, references many critics including Coyne and Tuller, and a letter from a Professor of Theology questioning the ethics of the trial.

Yes but a clinical scientist does not use Google to find out about research. They go to pubmed.
I quite agree that people should see for themselves that the paper is problematic but I am sceptical that we should expect them to be aware of debate on social media.
 
I accept that, but these purport not to be mere general clinicians, but specialists at the cutting edge, publishing papers intended to advise and influence others. They have to know what is going on to take on such a role.

Alternatively they should be writing to the Journal to express their concern at the reputational damage they risk from the Journal's failure to make the caveat sufficiently prominent for it to be noticed.
 
I quite agree that people should see for themselves that the paper is problematic but I am sceptical that we should expect them to be aware of debate on social media.
So it is up to us to make them aware of the issues being raised! Hence David Tuller's letters to journals. And individuals writing letters to journals and to paper authors pointing out the things they are unaware of.
 
When I wrote to her pointing out the outcome-swapping, retrospective registration, etc. she took another look and said she didn't see those changes made any difference, even though they were unfortunate. She actually misread the concerns and affirmed her earlier statement.
The key part of that being "she didn't see". What on earth do you have to do to make people see? As the saying goes: there are none so blind as those who don't want to see.

ETA: I do wonder if it highlights a genuine lack of insight and lack of comprehension on the part of some of these folk, combined with a cussed resistance to want to understand better. I fully appreciate that in their positions they should understand, but do wonder if they are (willfully?) ignorant of some of this.
 
Yes but a clinical scientist does not use Google to find out about research. They go to pubmed.
I quite agree that people should see for themselves that the paper is problematic but I am sceptical that we should expect them to be aware of debate on social media.
I have argued that we needed greater reach for David's articles to make a difference. I was wrong on that one but i do think the more exposure his words get the greater the impact would be. If we could convince a mainstream news outlet to post his articles that would hugely increase awareness. But afaik none of us have contacts at any of them who might be interested if approached correctly. The PACE pushers do have friends in powerful media positions.

As for Pubmed they have studies but not editorials afaik. Can we come up with a way to get his articles listed?
 
When I was working on RA I didn't go looking for chitchat on social media. I didn't that often read a paper I was so busy with the work. I updated twice a year at conferences.

I think it possible to distinguish your experience from this case. Obviously you were at the cutting edge of your field. Its just that the patients were not and I guess controversy with patients did not arise. You were not working is an area of clear conflict dating back to at least 1965-to take the Slater/Walsh spat-and earlier in less clear form. Consultants who think that Lightning Process is "effective" need to have done their research.
 
ETA: I'm realising now you might have meant how did she know the process involves keeping secrets? If so, that's something that's been documented online by former participants.
Yes, that was it. I was trying to get to how solid the information is for this, beyond just hearsay. The more solid the knowledge that children are asked to keep secret their treatment details, the stronger the case would be for child protection violations. But it would be harder to instigate any sort of proceedings without having confidence that secrecy is actually 'part' of the treatment. If that could be clearly shown, then there is a possible case for showing manipulative control of children and their parents.
 
They have to know what is going on to take on such a role.

I just don't think it is necessarily fair to think they would have an obvious way of finding out. We are bombarded by information but we are used to specific channels. Those of us here think David's blog is blaring out across the Atlantic. But for 99.95% of the population it is completely invisible.
 
Yes, that was it. I was trying to get to how solid the information is for this, beyond just hearsay. The more solid the knowledge that children are asked to keep secret their treatment details, the stronger the case would be for child protection violations. But it would be harder to instigate any sort of proceedings without having confidence that secrecy is actually part of the treatment.
I’m assuming that Parker hasn’t challenged Coyne about the content of his blog which would indicate he doesn’t want to draw attention to the issues raised.

I’m sure if Parker had challenged Coyne would have written about it.
 
So it is up to us to make them aware of the issues being raised! Hence David Tuller's letters to journals. And individuals writing letters to journals and to paper authors pointing out the things they are unaware of.

Indeed. But so far the stuff on SMILE has not as fr as I can see reached visibility. That is un the hands of the editors. But unless the editors choose visibility things remain hidden.
 
It's from Bristol local authority's own safeguarding/child protection policies. She checked those with a colleague. However, it's a key point in many policies for protection of children and vulnerable people more generally, so the point should apply wherever the research is conducted.

The old policy for protecting vulnerable adults, for instance, was literally called 'No Secrets': https://en.m.wikipedia.org/wiki/No_Secrets_(adult_protection). This became part of the Care Act 2014 (i.e., it's now law).

Most policies talk about transparency, openness, etc. Children must be safe to talk about what's going on in their lives and adults should always be vigilant to maintain safety.

Adults are allowed to keep children's own secrets if appropriate (e.g., 'My mum walks around naked,' which could be embarrassing or lead to bullying) but can't if they suggest a risk of abuse or an unsafe environment to the child or a vulnerable person ('I can't do my homework because we don't have any pencils at home,' for instance, might suggest neglect).

Adults should not ask kids to keep a secret, though, because that's a classic red flag for abuse. Obviously, there are some things parents will ask their kids not to tell people, which are private but not a risk to the child ('Auntie Sally is a lesbian, but she doesn't want anyone to know.'). But there shouldn't really be a situation where a teacher, doctor, researcher or trainer tells a child to keep a secret.

The Lightning Process falls into that secondary category because the 'trainers' are responsible adults with a duty of care. Researchers likewise have a duty of care and shouldn't let the trainers tell children to keep secrets about the process.

It is worrying, because how can you ensure the process is safe and that abuse isn't involved if no one in the room is allowed to talk about what happened? From a research perspective there's an additional problem in that you can't know which element, if any, is effective (or harmful).
Yes, that was it. I was trying to get to how solid the information is for this, beyond just hearsay. The more solid the knowledge that children are asked to keep secret their treatment details, the stronger the case would be for child protection violations. But it would be harder to instigate any sort of proceedings without having confidence that secrecy is actually 'part' of the treatment. If that could be clearly shown, then there is a possible case for showing manipulative control of children and their parents.
It's all anecdotal. But that's sort of the problem of a proprietary training programme like this--none of it has been properly analysed or vetted, and the 'creators' have no impetus to share such information. It's in their best interests to keep it secret, which is a huge problem.
 
Obviously you were at the cutting edge of your field. Its just that the patients were not and I guess controversy with patients did not arise. You were not working is an area of clear conflict dating back to at least 1965

There were all sorts of controversies that occasionally I got to hear of. Particularly in the alternative medicine area - which is what this is. There was a big scandal in the 1970s about rheumatologists doing trials with dodgy methodology. I knew about the detail because I worked for one of the people involved for a while. It got into the papers when they all drank too much beer going down the Rhine but you wouldn't have learnt much from that.

Things were different but I not so very different.
 
All the more reason then for prominent display by the journal of the caveat on the same page as the article.

Exactly. David is doing his best to change that. I have been in a difficult position with potentially being accused of competing interests (although I don't have any). However, I think my position may be a bit less difficult now so I am considering getting involved.
 
It's all anecdotal. But that's sort of the problem of a proprietary training programme like this--none of it has been properly analysed or vetted, and the 'creators' have no impetus to share such information. It's in their best interests to keep it secret, which is a huge problem.
Which of course means the key argument that we should be pushing (and I know @dave30th does) is: How can any kind of ethical approval ever be given to a childrens' treatment for which the details are concealed? It's absurd, and one of the most blatant and flagrant violations of children's and parental rights. It should be some of the tick boxes an ethics committee is legally obliged to check: 1) are the treatment details open to scrutiny? 2) has it been scrutinised? and 3) does it pass that scrutiny? No to any of them should be an automatic fail on ethical grounds, and child protection.
 
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