Submission to the Scottish Parliament by Jonathan Edwards

None of you know what sort of editor I am, because not one of you has ever asked me to do any work for you. So please stop throwing rotten eggs around about editors in general until you know. OK?

(FWIW I don't think you are going to get anywhere with PACE or any other psycho-ergo study any time soon - we need a better strategy).

 

Actually, @Lucibee , there is one of us that has benefited from some of your wisdom, and has greatly appreciated it. Or appreciated it greatly if you prefer.

I come from this in a different direction altogether. I guess, as an ex-teacher, I'd definitely describe myself more as a conversational communicator than a writer. I hate writing out things, simply because I can't get my tones, pauses, eyebrow raising etc. into it. So I rely very heavily on various people who have translated my stutterings into better flowing prose.

You know who you are, all of you. I like your editing!

 

I don't want you to go. Your posts are very interesting and informative. Even though I am not capable of commenting intelligently on any of them, I still appreciate them very much.

 

I hope you do not take my griping too seriously, @Lucibee. It is mostly teasing, although I do bear a grudge against people like Mr Horton for my own reasons.

 

Hi @Lucibee? I think so far as my comment went you have really got the wrong end of the stick. I was speaking of editors generally, and most certainly not about you specifically ... I'm sorry but I really didn't have you in mind at all when I made that comment. Why on earth would you be thinking I wanted you to leave? Very much not the case.

 

@Lucibee

Psychologists are generally slagged off here and I think there are a few psychologists around. They haven't left. Casually letting off a little steam is what happens sometimes. I'm sure it was not directed at you just as I'm sure there are editors out there that deserve every word.

 

I'm a psychologist. Some things that have been said here and at PR about my profession and discipline are overgeneral and simply not true. I haven't left, but I can't say what I would have done if I weren't a patient myself but was just offering my help, like @Lucibee.

In Psychology, there are many practices that need to change, and some individual psychologists have done poor work, sometimes leading to harm. But none of that will get addressed by turning the entire profession into a "them". Likewise for other groups whose members have contributed to the harm inflicted on PwMEs (doctors, reporters, physiotherapists and politicians).

I'm not saying anyone on this thread has done that. I'm just saying this is a good time to remember to focus our efforts not on whole professions but on social, political and psychological factors that have caused and perpetuated harm to PwMEs.

 

Speaking for myself I have been guilty of using over general terms rather than being precise. I get frustrated with my Dr or whoever with regards to pwme and instead of naming names it's just directed as a vague rant. I do generally assume that people filter that as not meaning everyone literally in that group but perhaps it pays to do a little self editing in those times.

 

As a writer and an editor, I haven't taken any offence here. There are bad editors. There are good editors. Some editors really want to change everything you write so it's written in the same way they'd write it. Some editors appreciate that individual style is an important thing to maintain, so they even leave in idiosyncrasies of punctuation and language, provided it's not outright wrong. Really, you have a very varied bunch who are doing editing work for different reasons.

The worst editors are very arrogant and think they know best. The best editors prod and enquire so that they bring out the best in your writing. Magazine editors can be more hands-on, and less likely to run changes by you, than fiction editors, but partially that's about 'house style' and tight deadlines. I couldn't say about academic journals, however, but I can bet there's a proportion of bad editors as with any medium.

 

I haven’t had a lot of experience with editors, but did have to run my scientific papers past a technical editor before publishing at the institute where I worked (a long time ago when I was a proper scientist).

I personally didn’t mind the process since scientific writing in a report or paper is not particularly personal to me and very different to how I write creatively for pleasure etc (don’t do it very often now since getting ME). I also write marketing copy, mainly brochures, point of sale, display adverts and packaging provenance statements etc ...again I don’t mind these being edited by others unless they change the meaning. Again this is less personal since it’s work and quite formulaic short?

I’m not sure how I would feel if one of my short stories written for pleasure were edited.... I’m writing it for me and the reader as oppose to just the reader?

I think how you view the editing process as an author depends on context and how passionately you feel about it or perhaps how detached you are from the reader you are writing for ?

 

In general, the more I write, the less I usually care about edits. But creative writing is always more personal that journalism, marketing copy or PR, so there rightly is a different attitude towards that. I usually accept most edits, unless I feel the editor is dumbing me down or writing in their own style (which would of course feel jarring).

The thing I would edit least is poetry, because every comma usually has some very detailed consideration behind it. That said, most editors of poetry I've worked with have been very good (all poets themselves), so that hasn't been an issue.

 

Absolutely agree with @Jonathan Edwards when he says: 'ME became a backwater in terms of education, research and service development and drifted into rehabilitation medicine, clinical psychology, and the hands of alternative practitioners. Apart from
some useful epidemiology much of the research published has been poor.'

When I was diagnosed by Behan with ME in late 1983/early 1984 - that is, ME as described by the late Dr Melvin Ramsay - there *was* a wee window of research/hope, I was part of that window and I don't know what happened but there was clearly a research vacuum and psychiatry expediently filled it with unsubstantiated nonsense from 1990s on - with the reframing/repackaging as 'CFS' tied up with a huge misleading glittery bow - the rest is history. ME was effectively 'disappeared' as the devastating neuroimmune illness it is. Wessely became a CFS hero, thanks to his well-oiled PR. This is how PACE even became possible.

 

True in science but I’ve always thought that many literary writers strive for ambiguity. I used to loathe it but I’ve come to embrace it more over the years – if used appropriately.

I don’t have much experience of science writing but my letter in Nature this year went to and fro the editors about seven times – partly because of their concern that the PACE authors would accuse them of defamation, and partly because of my wish to add extra content (about Cochrane) that I had not included in my original letter. It became something of a negotiation in the end, with me agreeing to X if they would concede to Y, but, as a former poker player, I quite enjoyed that – not least because I respected the editor’s greater experience and I felt she was on my side.

In the good old days, if The Times published a letter they would always phone you up to agree their edits. Now that budgets are tighter they just edit them as they see fit without letting you know. It’s an extra challenge to get a letter published with no edits.

Enter Simon Wessely, stage left.

[edit – typo]

 

Fantastic to have your support @JonathonEdwards and thanks again for writing such a great submission.

I thought people interested in this topic might like to see this submission from NHS Lothian, this is the healthboard in which Scottish folks involved in PACE have set up a CBT/GET clinic and are the “ME experts”:
“NHS Lothian do not accept all the evidence in the petition background information as accurate. In particular the Scottish Good Practice statement reviewed the claim that 1 in 4 people were house/bed bound with ME and found it to be unsupported. ME is now defined by the World Health Organisation ICD11 as 8E49 ‘post viral fatigue syndrome’ under the heading ‘Other disorders of the nervous system’ with the synonyms ‘benign myalgic encephalomyelitis’ and ‘chronic fatigue syndrome’. Evidence taken by a survey of all British neurologists did suggest that over 80% would not support the underlying view given of ME in this petition. NHS Lothian do not accept the petitioners criticisms of the PACE trial.”
http://www.parliament.scot/S5_PublicPetitionsCommittee/Submissions 2018/PE1690__A.pdf

 

That's interesting.

"NHS Lothian do not accept the petitioners criticisms of the PACE trial.”

They were a bit low on specifics there. What do they not accept?

Here's the petition: http://www.parliament.scot/gettinginvolved/petitions/PE01600-PE01699/PE01690_BackgroundInfo.aspx

 

All of the criticisms, presumably.

 

This is awful, Emma - who is pulling the strings at NHS Lothian?

 

Who do you think?

https://www.scotsman.com/news/capital-clinic-gives-hope-to-me-sufferers-1-931697

Edit I should be more specific - Alan Carson and Michael Sharpe have coauthored manuscripts before. This clinic was involved in recruiting patients for the PACE trial.