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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. Lucibee

    Lucibee

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    As a relative newcomer to ME/CFS, I was keen to see what Ian Gibson had to say, particularly from a political standpoint, so I bought the book as soon as it came out. Oh my! As an editor, my heart sank. I nearly cried. There are so many things wrong with the book that I don't know where to start. Many of you have already covered some of them. If you want to get a message out there, it is absolutely crucial that it is done in the most professional manner possible. What I say might sound pedantic and nit-picky, but these things really do matter.

    Layout and appearance are important. Most of us probably bought the book for the content, but good layout helps readability. Other readers might not know about the potential content, so appearance does make a difference as to whether they decide to read it. Layout was poor and had clearly not been thought about. I counted 6 different typefaces being used within the first 4 pages. Choose 2 max - one serif, one sans serif - and stick to them throughout. Choose a book you like and found easy to read and copy what they've done. It's not rocket science!

    Inconsistencies with paragraphing and line-spacing stood out and disrupted the flow. The text was unjustified - I guess this is personal preference, but it is harder to read. There were widows and orphans everywhere, and even headings were left hanging at the end of pages. In fact, use of headings was patchy. Often the text underneath a heading didn't actually stick to the topic.

    I don't think the text had been edited. It might have seen a spell-checker, but that's probably about it. Many sentences were unreadable and simply didn't make sense. Editing isn't just about spelling and grammar. It's also about sentence structure and readability. It is also about content structure, and this was all over the place. Topics would jump about. Earlier and later chapters were referred to, but weren't where they were supposed to be. Later chapters would go over material from earlier chapters as if they hadn't already been mentioned.

    I tried very hard to see past all this to get to the content - but was not rewarded. The subtitle of the book is "A health scandal in our generation", but I failed to find any account of this, other than allusion or innuendo - a sort of nudge-nudge, wink-wink, those-who-know-what-I'm-talking-about-know-what-I'm-talking-about. As an outsider, I would think that there's some science going on, and there's some politics going on, and governments are behaving in their usual incompetent manner, and ... yeh, so what? There were no substantial details (or too much detail about really quite inconsequential things). Events were mentioned as happening, but not *what* happened. I think the authors were trying to be as uncontroversial as possible, and didn't want to upset anyone. However, in early chapters, they would allude to controversial topics in a way that was very off-putting.

    Timelines were impossible to follow - particularly over the setting up of parliamentary committees and general government business. I still have no idea what any of them actually did. The Gibson Inquiry was frequently mentioned, but again, I have no idea about the content, scope, or outcome, other than there is not enough being done about ME/CFS and there needs to be more biomedical research (which I already knew). The juxtaposition of this with "here is what Invest in ME are currently looking at," leaves the reader slightly baffled about whether there is a problem in this area at all. Although lots of science was mentioned, it was not particularly well explained.

    One of the key chapters was on The Biopsychosocial Model (Chapter 5). The model was very poorly explained, and despite the author saying, for example, "We will take time to explain the difference between general illness and disease," all we got was, "Physical disorders, distress and illness vaguely portend disability," and he (or she?) was off on another ramble about something else. The chapter was full of dropped ideas and non sequiturs, and read like a cobbled-together transcript of dictaphone notes (which I suspect it probably was!).

    Referencing seemed sort of OK (despite some omissions), but the reference list at the end of the book was woefully incomplete. The use of hyperlinks and html refs in printed books is always going to be tricky. :/

    The only good thing was the case studies. If the whole book had just been patients' accounts of what was happening, I would have been happier.

    Others here have suggested that maybe a revised version could be published. To be honest, I don't think it is redeemable other than completely rewriting it. If the authors do go down that route, the first thing they need to address is who the book is aimed at, because that is very unclear.

    And finally, if you are planning your own book, please please please get professional help. There are plenty of us around who are happy to give our advice and help for free. Damn it, it's pretty much the only thing I can do to help, so please use me!
     
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  2. Yogi

    Yogi Senior Member

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    It's great that you are a book designer and editor. This might be useful. You could contact InvestinME and let them know about this and who can put you in touch with Dr Ian Gibson.

    http://www.investinme.org/landerP5.shtml
     
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  3. Yogi

    Yogi Senior Member

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    It's great that you are a editor. This might be useful.

    You could contact InvestinME and let them know about this and who can put you in touch with Dr Ian Gibson.

    http://www.investinme.org/landerP5.shtml
     
    Last edited: Mar 23, 2017
    MEMum, Dolphin and Jo Best like this.
  4. trishrhymes

    trishrhymes Senior Member

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    I've already had my say, so I won't elaborate, but I have to say I agree with everything @Lucibee says.

    I commend the effort that has gone into this book, but sadly cannot commend or recommend the result.
     
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  5. AndyPR

    AndyPR Senior Member

    So much this. Talking to my wife about the book, I said that that the easiest part to read, and often the most informative, was the case studies. Having seen, and heard, how difficult a read it was, she has decided not to give it a go, and I don't blame her at all. Such a disappointment and such an opportunity lost - hopefully Dr Gibson will be inclined and able to put further work into it.
     
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  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Incorrectly, so.

    Dr Ian Gibson had done several media interviews, in 2005, in which he had promised he would work towards achieving the establishment of an "independent Parliamentary inquiry" that would "get to the bottom of M.E." once and for all.

    "Some say it is psychiatric and others say it is physical but it could be a bit of both."
    Ian Gibson, Norwich Evening News

    Dr Gibson was unable to achieve the “full”, “high level” and “independent” inquiry he had been seeking within the very short time frame he had set for himself.

    When he failed to achieve an independent "full" and "high level" inquiry, he announced (without consultation with stakeholders) that he had set up a group called "The Group on Scientific Research into ME" and invited various parliamentarians as members to carry out an unofficial inquiry. Dr Gibson chaired the panel, himself, and it was Dr Gibson who decided whom he would invite onto his panel, including Lord Turnberg.

    In January 2007, Philippa Wainwright, Office of the Parliamentary Commissioner for Standards clarified that:

    “Because the group is on the Register of All-Party Groups it is entitled to use the House emblems (eg the Portcullis) on any of its documents (eg reports, press notices, agendas) and on its website, and it is also allowed to give ‘House of Commons’ as its address on its letterhead.

    “However, groups that are not on the Approved List are not allowed to use the terms ‘All-Party’, ‘Associate’ or ‘Parliamentary’ in their title, In the light of what you say, I shall write to the group reminding them of the rules on this point.”

    And clarifying the authority of the report that was e-published, only, by the GSRME, in November 2006, Ms Wainwright wrote:

    “In parliamentary terms all-party groups have no official status, and are viewed as informal. Their reports therefore have only the authority of those who produce them.”

    In terms of status, then, the GSRME sat on the lowest rung of parliamentary groups beneath that of All-Party groups. The report that came out of the “Gibson Inquiry” does not have the authority of either House of Parliament nor any government department; it was not a commissioned inquiry nor the product of a select committee, standing committee or any other Parliamentary committee. It had no funding, no dedicated administrative staff or resources and as stated above, was accountable only to itself.

    No government department responded to the "Gibson Report" and it received no media coverage. The interest of those who had sat on its committee rapidly fizzled out.

    The Secretary to the GSRME resigned the day after the report was published. The group began to disassemble and formally disbanded in May 2007, as half the committee had lost interest in attending meetings and in taking the project forward.

    Once the GSRME committee has disbanded, none of the factual inaccuracies, omissions and ambiguities contained within their report could be corrected and the document remained unfit for purpose, despite calls from ME charities, campaigning groups and individuals that the GSRME should make amendments to its report.

    So caveat: the Report still contains uncorrected errors and misconceptions.

    When drawing up the inquiry’s Terms of Reference, no procedures had been put in place by the panel for dealing with errors in the report; it was published without consultation and sent out to 600 odd MPs, to the Chief Medical Officer and various government ministers, complete with errors, before the ME community and ME patient organisations had had sight of it.


    For those who don't have a copy of the "Gibson Report" (2006), it's here:

    http://www.erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf

    Inquiry into the status of CFS / M.E. and research into causes and treatment


    November 2006
    Group on Scientific Research into Myalgic Encephalomyelitis (M.E.)


    It's worth reviewing John Sayer's commentary on the "Gibson Report"from 30 November 2006:

    http://www.sayer.abel.co.uk/MES-Ngibsonreport.html


    Also see:

    https://twentysixsoldiersoflead.wor...ughts-on-the-gibson-report-by-angela-kennedy/

    More thoughts on the Gibson Report by Angela Kennedy

    An edited version of a commentary first published in December 2006 by social scientist, Angela Kennedy, following publication of the “Gibson Report”.
     
    Last edited: Apr 18, 2017
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  7. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Note at point 3.2 in the Report, it states:

    "Wessely gave up the research side of his work possibly due to extreme harassment he received from a very small fringe section of the ME community."

    Dr Gibson was asked to provide the references the panel had used for the basis for their statement. His response was that he was unable to do so.

    It also states in point 3.2:

    There is conflicting evidence available regarding Wessely’s true opinions. The
    Group invited Wesseley [sic] to speak at an Oral Hearing, however he declined the
    offer and sent his colleagues Dr Trudie Chandler [sic] and Dr Anthony Cleare. The
    Group were disappointed not to have the opportunity to discuss this important
    issue with such a key figure. Wessely did not submit a written piece to the Inquiry,
    however in a letter to the Inquiry he did set out his belief that CFS/ME has a
    biological element which needs further research and investigation.


    Since the content of Prof Wessely's communication to the inquiry panel had informed the content of their report, Dr Gibson was asked to place a copy of the letter in the public domain. The response was that it was a piece of personal correspondence and not intended for public domain and no permission was given to release it.
     
    Last edited: Apr 18, 2017
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  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    I bought a copy of Dr Gibson's self published book, took one look at the layout (as a graphic designer, these things matter), skimmed the first couple of pages and stuck it on the shelf. There is sits. Can anyone tell me whether it covers the Science Media Centre's egregious campaign?

    If I do get round to reading it - I'll gift it afterwards to anyone in the UK who would like a free copy.
     
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  9. Jo Best

    Jo Best Senior Member

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    I wasn't on the scene at the time of the Gibson report (I was severely ill but not online nor aware of the politics until 2010) so I respect the commentary on that. It seems to me that he has made a valuable contribution to progress since the report, such as his involvement in the Invest in ME international conference and colloquium events (developing year on year since the first in 2006), his of support of the proposal by the charity to establish a Centre of Excellence for ME, and as a member of the Invest in ME Resarch Scientific Advisory Board. I listened to his comments on the report on the 2016 Invest in ME Conference DVD after noting from Mark Berry's blog on the 2016 Invest in ME Conference:
     
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  10. AndyPR

    AndyPR Senior Member

    If it does cover the actions of the SMC it must only be mentioned obliquely. I couldn't remember it being talked about so I went back to my copy and skimmed through the sections most likely to cover it and I couldn't spot any reference to them. Of course, I may have missed it but at the moment my answer would be no, it doesn't.
     
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  11. Jo Best

    Jo Best Senior Member

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    The book inspired a call to UK government to:
    'Debate in Parliament the absence of an effective policy for the treatment of M.E.'

    The petition got 7,000 signatures in one month, and at least one from each constituency I believe (there is map link on the site). It's not my petition but I supported it and I have only seen it generate support, with the exception of one NHS doctor who politely claimed that CBT and GET are effective, but asked for evidence that he had missed.

    100,000 signatures would have been needed for government to consider a debate.
    10,000 would have prompted a written response.

    All petitions on the UK Government and Parliament petition site now have a deadline of midnight 3rd May when Parliament dissolves because of the general election, so just posting the link here fyi: https://petition.parliament.uk/petitions/190618

    ETA hot off the press as the petition site has just replied to a thread on Twitter with these FAQs so it looks worth trying to reach 10,000 for those agreeing with the call for debate.
    http://www.parliament.uk/business/c...arliament-2015/petitions-2017-election--faqs/

    My petition got 10,000 signatures before the site closed. Will the Government still have to respond?
    The Government can’t respond during the election period. It will be up to the new Government to decide whether it wants to respond to petitions from before the election.
     
    Last edited: Apr 21, 2017

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