Submission to the Scottish Parliament by Jonathan Edwards

The reason why we have placebo-controlled trials (not just dummy-controlled) and normally blind both patient and investigator to which treatment is which is that unless you do this, if you use subjective outcomes you get uninterpretable results.

Editor here would turn it round thus:

If you use subjective outcomes, you will get uninterpretable results unless your trial is also double-blind (both patient and investigator don't know which treatment is which) and placebo-controlled (not just dummy-controlled).

But I'd add that the design of the placebo itself is crucial in this regard.
 
If you use subjective outcomes, you will get uninterpretable results unless your trial is also double-blind (both patient and investigator don't know which treatment is which) and placebo-controlled (not just dummy-controlled).

Yes, but that sounds so editorish. I used to get a lot of problems with these editors! Fortunately the Scottish Parliament just asks you if you really want to risk being sued for libel - or at least that is what I thought they meant.
 
Oh, but the problems *do* arise from lack of understanding of statistics and trial structure, because so much is reliant on psychology!

Not as I see it at present. Not understanding that if patients try to 'help' by giving the answers they think are wanted then your results are meaningless is not a quantifiable or mathematical issue and statistics is about maths, surely? Getting the placebos psychologically right isn't so much an issue of trial structure as getting them psychologically right.

What is worrying is that the manuals used by people like Cochrane techies for assessing evidence quality clearly have no mention of the crucial psychological issues. PACE passed the structural requirements of Cochrane as a 'controlled trial'. With luck we may be able to do something about that now but it is going to take quite a bit of work.
 

The author/editor relationship is by nature love/hate, I believe!


I really just wanted to get up the nose of certain people, whose organisation's name I forget, who are likely to be asked to comment, so that although they might initially think it would be a doddle pointing out how ramshackle my presentation was they would eventually realise that clearing their noses might put their heads above the parapet - to mix a metaphor or two.
 
The author/editor relationship is by nature love/hate, I believe!


I really just wanted to get up the nose of certain people, whose organisation's name I forget, who are likely to be asked to comment, so that although they might initially think it would be a doddle pointing out how ramshackle my presentation was they would eventually realise that clearing their noses might put their heads above the parapet - to mix a metaphor or two.

Even the most experienced authors need editors. I had a suggestion for one of the sentences flagged up here, but will refrain from making it! Am sure though your document is a very welcome weapon to pwME up here - our MSPs will learn lots. Emma Shorter has been fantastic in making the case to ScotParl for pwME.
 
Even the most experienced authors need editors.

Having been an editor responsible for getting manuscripts up to scratch for the last five years or so, I am not sure. There is a lot to be said for allowing people to write in their own style. I hardly ever change sentences unless they actually don't make sense. You lose the life of the text. The alternative so often ends up with creating howlers that the author has to spend hours sifting out again. I learnt early on not to write for Springer, whose subeditors caused havoc with one of my books without even telling me they had made changes. In one case I was talking about joint symptoms and they made it sound as if I was talking about pregnancy.
 
An excellent letter and summary of where things currently stand.

Do we have permission to use this with our local Community Engagement Partnership meeting which has forward programmed ME CFS onto their agenda?

We have the ear of the 2 CCGs- via chief nurse and Chief Operating Officer.
 
I read it through in one go and thought it was excellently written, obviously with the reader in mind. I didn't read anything I would change.



One of them is a woman with a fat arse on the telly and the rest of them are something to do with her.

I wondered who that was sitting on my telly!

Good document @Jonathan Edwards , but i would have added something about your not wanting to harm the Scottish cardigan industry, which, I am sure, produce the highest quality blue knitwear in the land. ;)
 
Having been an editor responsible for getting manuscripts up to scratch for the last five years or so, I am not sure. There is a lot to be said for allowing people to write in their own style. I hardly ever change sentences unless they actually don't make sense. You lose the life of the text. The alternative so often ends up with creating howlers that the author has to spend hours sifting out again. I learnt early on not to write for Springer, whose subeditors caused havoc with one of my books without even telling me they had made changes. In one case I was talking about joint symptoms and they made it sound as if I was talking about pregnancy.

I guess your 5 years trumps my 25 years then!

I've been on both sides too. And I know what it's like to have howlers created out of what I have written - but that's why it should be a collaborative enterprise.

Journals (like The Lancet) often have a strict house style, which will have certain conventions (grammatic, semantic and lexicographical). My job was to make sure that it was the science that spoke, without unwarranted spin from the author. But while this might be appropriate for articles, I agree that it is not appropriate for opinion pieces (commentary) and correspondence, so I was much more light-handed with those - and would only correct literals. Other colleagues were much more heavy handed, and would change every single sentence if they could (and did, when I was on the other side, much to my annoyance).

But arguably, it is just as important in an opinion piece to be clear. The writer always knows what they meant - the reader might not, and an editor will know where that ambiguity may lie. They won't get it right all the time - but that's why I would always check if I changed something.

But those days are gone. I won't be able to work for The Lancet again, because of my involvement here.
I guess that's why I would still like to be useful rather than derided. If I can't even offer that, then there's not much point in my being here.
 
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