New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Book out now 'Science, Politics, .......and ME' by Ian Gibson and Elaine Sherriffs

Discussion in 'Action Alerts and Advocacy' started by Jo Best, Mar 6, 2017.

  1. Sasha

    Sasha Fine, thank you

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    I'm sorry to hear this. I see that the book is published via Createspace, which means that the author simply uploads a PDF of the text and a cover image and then Amazon "prints on demand" - that is, if someone orders a copy, Amazon print one off and mail it to the customer.

    What this means is that the copy can be corrected at any stage and uploaded again. If there are extensive changes, a second edition could be put out, again, just by uploading a file. This isn't a situation where thousands of copies have been printed off and are sitting in Dr Gibson's garage (or a publisher's warehouse).

    If Dr Gibson wants to edit his book, it's not too late. Perhaps a patient who has editing experience could approach him.
     
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  2. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    I have to agree with this as well. I've managed to fight my way to about the midpoint of the book, and I'm doing my best not to give up, but it's such a hard read for all the reasons char46 gives. I read this top paragraph to my wife yesterday, and she agreed that it's very hard to follow (for reference, she's a trained accountant, so is no stranger to figuring out arcane language)
    GibsonBook 1.png
    I would love to be able to recommend this book to all, and I very much appreciate the effort by Dr Gibson, but without an extensive edit and proof-read taking place I unfortunately can't. :(
     
    Last edited: Mar 14, 2017
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  3. trishrhymes

    trishrhymes trishrhymes.wordpress.com

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    I have waded through the whole book, and ,while I really do appreciate the effort and intentions, I think the problem goes deeper than just copy editing (grammar, etc).

    I think if it is to be a gripping read for a target audience of medics, politicians, journalists and the intelligent public, the whole structure of the book needs a rethink.

    There needs to be a narrative arc, to use creative writing jargon, a story that draws the reader on to want to know the next bit. This could be historical, or built around a couple of telling case histories, or focused on the politics. Or all three woven skillfully together.

    I'd love to have a go myself, but don't have either the stamina or the skills. Maybe one day. So far all I've managed is a single blog piece.
     
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  4. char47

    char47

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    I'm afraid I would very sadly have to agree, but some decent copy editing would be a good start. - By someone who knows the subject because otherwise they wont catch the errors.... for example (& i've been careful to type this out verbatim) on page xv of the preface it says...

    "(...) Prof Tom Shakespeare (.....), who has studied and published on the subject of disabilities and how political policies are constructed and how these evolve. In particular, he has researched and published work on the biophysical explanation for disabilities and how benefit awards have arisen from the Waddell-Aylward model (see later chapter). This model related to particular benefits that are based not on biomedical explanations but on social events. As Tom said in our discussion, it relates to causes and it is claimed provides the evidence upon which policy is based."

    - eh?
    I mean i think what they're trying to say?? is that
    Waddell/Aylward's biopsychosocial model, - which claims that social & psychological factors (rather than biomedical explanations) are the main cause of disability. This idea has influenced DWP benefits policies and therefore people have not been awarded the benefits they should have been because of that.
    ??
    But if I didnt already know that, I would be none the wiser after reading that paragraph.
    And crucially for this particular part of the discussion, someone who didn't know (for example) that it should say biopsychosocial rather than 'biophysical' wouldn't catch that error.

    And the book is sadly (to my eye at least) littered with that kind of issue.

    It's a great shame.

    If anyone involved with the book happens to read this - please understand i am not seeking to critisise or 'put down' the work, it's obvious that the authors & everyone involved feel very deeply about the topic & understand the issues well, & have worked very hard on it. And they deserve a huge pat on the back for their efforts. It's just that it doesnt come over very well in print. My comments are intended to be constructive not to tear down.
     
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  5. Jo Best

    Jo Best Senior Member

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    I finished reading my copy this morning (PEM be damned) and appreciate all the constructive feedback here, from the perspective of having started the thread, and thank you @Sasha for finding out about the publishing.
     
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  6. char47

    char47

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    Just to reiterate (in case it got lost in the bigger picture of the discussion)....

    If anyone would like to have my copy I'd be quite happy to gift it to any PR member. If you PM me with your postal address i'll pop it in the post.
     
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  7. Countrygirl

    Countrygirl ME is not MUS

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    I am very relieved to hear that @Sasha .

    My copies dropped through the letter box an hour or so ago and I have been struggling with the text. The first few pages were particularly bad and I had to refrain from attacking it with a red pen. It reads like a first draft that now needs thorough editing and proof reading......and those commas!!!...........and then the lack of them. It does improve as you continue, but, apart from the case histories, it lacks punch and interest. It fails to captivate the reader. The material is good, but it needs more work if it is to capture the interest of busy people.

    I do applaud Dr Gibson for taking on this project, but I do hope he is able to proof read it, and correct the errors that make it so difficult to appreciate. It is potentially a valuable work, and one which could be of great use to the ME community.....................eventually. Perhaps there are people here who could help craft the project. @Ben Howell perhaps who has made such a splendid job writing of his experiences with Janet and Ron.???:):angel:

    Edited to add that the book much improves after the first quarter, fortunately. It is mostly just the early part of the book that requires serious attention......especially the opening section.
     
    Last edited: Mar 14, 2017
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  8. Jo Best

    Jo Best Senior Member

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    In the meantime, please don't fret too much, as it has had positive feedback and impact in other quarters already :)
     
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  9. slysaint

    slysaint Senior Member

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    I came across this report (64 pages):
    "In the Expectation of Recovery"
    MISLEADING MEDICAL RESEARCH AND WELFARE REFORM
    by
    George Faulkner published by the Centre for Welfare Reform.
    http://www.centreforwelfarereform.org/uploads/attachment/492/in-the-expectation-of-recovery.pdf
    It was done last year; I haven't finished reading it yet but it seems to be covering the same as Gibsons book.

    There is a thread on PR from last year where an article by the CfWR about PACE was discussed.
    This report is easy to read and lays out the whole BPS approach.
     
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  10. cinderkeys

    cinderkeys

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    Hoo boy.

    I'm an editor and a book designer who deals quite a lot with self-published works. Having glanced at some of the text, I can tell you that I've seen much worse. It's probably had some editing already. That doesn't mean it wouldn't benefit from more substantive editing, mind you, just that it's better than it could've been under the circumstances.

    The design is pretty bad, though. The cover features Comic Sans-ish font for the title, multi-dotted ellipsis in the title (gahhhh), and a boring image. The interior layout is worse. There are spaces between paragraphs even though the paragraphs are indented. There are running heads on chapter-start pages. In every way, it's an amateur effort. Even if the content were perfect, it would be hard to get anyone outside the community to take this thing seriously.

    Does anybody know either of the authors? Would they be amenable to having the book further edited and completely redesigned? The nice thing about self-published books is that you can revise them any time you want.
     
  11. trishrhymes

    trishrhymes trishrhymes.wordpress.com

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    I think you're right, @cinderkeys that it could do with a more professional edit and design, but that would still not encourage me to give copies to doctors or politicians or friends.

    Although I commend the effort that has gone into this book, i think it does not make it's case clearly or compellingly enough for such people to either continue reading beyond the first chapter, or gain a clear understanding of the situation, let alone persuade them to take any action.

    I keep asking myself, what is this book for?
     
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  12. Joh

    Joh Senior Member

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    I guess you've already seen this review on Amazon? Is Dr. EMG Dr. Ellen Goudsmit? What is she (or someone else?) talking about, who are the two people who "spent more than a decade writing quite a lot of inaccurate things about the illness" that the authors are "fond of"? It's hard to imagine that the book offers a "simply wrong" definition of ME? Bolding is mine.

    https://www.amazon.co.uk/review/R26...annel=detail-glance&nodeID=266239&store=books
     
    Last edited: Mar 17, 2017 at 4:52 AM
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  13. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    That is a question that I still haven't found an answer to. I think it might be one of those impossible to answer things.. ;)
     
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  14. slysaint

    slysaint Senior Member

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  15. A.B.

    A.B. Senior Member

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    A self-proclaimed expert's reluctance to expose their views in detail suggests something isn't quite right. Can the views stand up to criticism or do they fall apart without the protection of vagueness? In the worst case, is the expert just making **** up as they go?
     
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  16. Valentijn

    Valentijn Activity Level: 3

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    Probably. She does spend most of her time criticizing other patients to establish her superiority. She's a generally destructive "advocate", and I don't take anything she says seriously.
     
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  17. Chrisb

    Chrisb Senior Member

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    There is one aspect of the content of the book which disturbs me. On page 7 it states that the first documented outbreak of ME, that at Los Angeles County Hospital in 1934, "followed a polio immunisation trial of the Brodie vaccine across the US and included children and staff at the Los Angeles County Hospital."

    The unsuspecting reader is clearly invited to infer that the first outbreak arose as a result of vaccination with the Brodie vaccine.

    We had a thread on this subject a little time ago. "Did the Brodie polio vaccine of the '30's cause ME?"

    If this claim is to be made without qualification it needs to be substantiated and references provided. The evidence for the claim seemed to be Dr Hyde's statement that he had spoken to an elderly former doctor who had been affected by the condition and who claimed that compensation was paid. The claim was taken up by Heckenlively who claimed to have found a potential source of the funding.

    Against this was an article published by Brodie in the medical literature in 1935 claiming that the first trial of the vaccine took place on 12 children in June 1934. This would hardly account for the illness amongst adults, even if the trial took place in LA. Possibly this could be part of a cover up, but the problem with such a suggestion is that it must have been known to just about every doctor in LA if such a trial had taken place with adverse results, and no one mentioned it to anyone.

    What might have confused the issue is that trials of prophylactic serum, and two other types of sera were undertaken amongst patients by the medical authorities.. These appear to have been reported in a normal manner. Links are on the other thread.

    It may be that new evidence is now available, but if so it should be referred to. This is of fundamental import.

    It
     
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  18. alex3619

    alex3619 Senior Member

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    The first two patients at the LA County outbreak were in 1932 if you read the official government report. If I recall correctly thousands may have become sick in 1934, but most were not investigated. The hospital in question was doing a lot of viral research using monkeys and other animals. So something may have happened there. Or not.
     
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  19. Chrisb

    Chrisb Senior Member

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    I have read the report into the 1934 Hospital outbreak which does not purport to deal with earlier cases. Presumably the cases from 1932 were the first of the polio outbreak. I am sure that what you say about viral research is correct but that does not provide evidence for a link to the specific Brodie vaccine, which is what was claimed.

    A claim of that nature should be supportable by, at least, persuasive evidence, or it should be qualified in some way to show the limitations of the available evidence.
     
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  20. alex3619

    alex3619 Senior Member

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    As I currently see it there is no credible evidence either way that proves vaccine causation at that point and time. I think the question is unanswerable after all this time, at least unless further tangible evidence is uncovered.
     
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