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Submission to the Scottish Parliament by Jonathan Edwards

Discussion in 'Open Letters and Replies' started by Jonathan Edwards, Jul 7, 2018.

  1. Lucibee

    Lucibee Senior Member (Voting Rights)

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    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).
     
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  2. Graham

    Graham Senior Member (Voting Rights)

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    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!
     
  3. Trish

    Trish Moderator Staff Member

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    Strange the subject of editing should come up. I spent most of Sunday writing an 'article' about ME aimed at the general reader which turned into a marathon 6000 words of what is probably drivel. It's something that's been brewing in my head for ages, and finally splurged out on my screen. I would love someone to read it and tell me whether it's drivel and whether it can be rescued and turned into something readable, but I wouldn't dream of inflicting it on anyone else - it's far too long. I'll probably just plonk it on my blog and leave it to molder unread by anyone but the odd wandering bot.

    I'm saying this, not to ask for readers, but to point out that there may well be people among us with things they want help putting into readable prose and don't know where to turn for such help. But that may be rather different from honing a scientific paper into clear and accurate language.

    Next time I want to write something more purposeful and focused, like the letter I wrote some time ago to Bristol University about Crawley, I'd love to be able to turn to you, @Lucibee, for help.
     
  4. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    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. :hug:
     
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  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    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.
     
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  6. Barry

    Barry Senior Member (Voting Rights)

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    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.
     
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  7. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    @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.
     
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  8. Woolie

    Woolie Committee member

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    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.
     
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  9. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    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. :speechless:
     
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  10. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    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.
     
  11. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    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 ?
     
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  12. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    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.
     
  13. Trish

    Trish Moderator Staff Member

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    We seem to have strayed somewhat from the subject of this thread, namely @Jonathan Edwards' submission to the Scottish Government petition committee.

    Since it has already been submitted, there's not much point further discussing the finer points of editing, or indeed the broader topic of good and not so good editors.

    I'd like to look more closely at the key arguments Jonathan makes which I haven't seen before put so clearly and succinctly. I have just re-read the document, and found these points particularly valuable, and worth emphasising in submissions to NICE and organisations that commission care.

    Points that I found particularly helpful are:

    Some history of how it went wrong - no medical specialism taking ownership of ME, so it ending up in the backwater of rehab. and therapy and psychiatry where it doesn't belong.

    The problems with PACE - definitely worth spelling out, and a good idea not to go into all the flaws, but to focus on the ones that make the data invalid.

    I particularly like the conclusion that PACE was useful in demonstrating that the 'unhelpful beliefs' theory is false.

    And the focus on what to put in place of CBT/GET is important, as there seems to be an argument that these treatments have to be left in place because there's nothing else to offer. The point is well made that it is better to stop wasting money on treatments that are 'causing unnecessary distress' and instead to provide proper diagnostic services and 'useful care'.

    I think I'll send it to my MP when I finally get around to writing to him...
     
  14. Nasim Marie Jafry

    Nasim Marie Jafry Senior Member (Voting Rights)

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    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.
     
  15. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    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]
     
    Last edited: Jul 12, 2018
  16. Emsho

    Emsho Established Member (Voting Rights)

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    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
     
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  17. Esther12

    Esther12 Senior Member (Voting Rights)

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    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
     
  18. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    All of the criticisms, presumably.
     
  19. Nasim Marie Jafry

    Nasim Marie Jafry Senior Member (Voting Rights)

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    This is awful, Emma - who is pulling the strings at NHS Lothian?
     
  20. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Last edited: Jul 14, 2018

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