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

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?

 

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.

 

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.

 

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.

 

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?

 

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.

 

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.

 

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.

 

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 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.

 

All the more reason then for prominent display by the journal of the caveat on the same page as the article.

 

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.

 

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.

 

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.

 

Totally off the subject, or perhaps not, I was idly speculating on the relationship between canards and quacks. Apparently it is closer than one might suppose. It seems that canard derives from the old French "caner"-"to quack".