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Simon Wessely Quotes

Discussion in 'Information and Resources' started by Valentijn, Dec 22, 2012.

  1. Valentijn

    Valentijn Activity Level: 3

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    Goals
    This is the first in what will hopefully become a series of threads with quotations from various doctors, researchers, and whoever else, which are relevant to ME/CFS. The purpose of these threads is to create a clear record of what has been said, to 1) edify patients who are not sure what their doctor really thinks, 2) provide a context to help clarify vague statements, and 3) to have an easy-access repository of reliable quotations on hand when needed.

    It is hoped that eventually there will be a better format for these pages, namely in a wiki, where pages can be created in a collaborative manner, researched for accuracy, discussed in a manner that does not detract from the accessibility of the quotes themselves, and deleted or edited to ensure accuracy.

    Format and Content
    Until that happens, I do expect these pages to be something of a mess. One post at the beginning of the thread (the one after this post, most likely), will be updated to contain the current list of quotes that are suitably relevant, accurate, appropriately cited, and contextual enough to be comprehensible. Quotes shouldn't be overly long. 1 sentence is ideal, though of course sometimes a few more sentences may be necessary to provide context. Anything longer than a typical paragraph is probably less suitable.

    Contributors can elect to delete their own posts after their suggested quote has been added to this post, or discussion about the quotes has been resolved to everyone's satisfaction. This might help to reduce spam to make active discussions more accessible, but is of course completely optional.

    EDIT: As an additional note, I think direct quotes are the strongest. In many cases these papers are saying "People say this" and "The CBT model of CFS says that", which is not so useful. Although the authors are basically endorsing those statements by citing them in their papers/books/etc, they can also just say they're summarizing what other people say and that they don't necessarily agree with all of it. These authors' own conclusions are much more effective.

    EDIT #2: The quotes don't all fit into one post (character limit isn't high enough), so some categories are being added to the end of this post instead.

    BIOLOGICAL INVESTIGATION AND TREATMENT

    DISABILITY PAYMENTS AND CARER ASSISTANCE

    CAUSE AND PERPETUATION
    PROGNOSIS AND OUTCOME
    biophile, Bob, taniaaust1 and 2 others like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    TREATMENT
    BIAS AGAINST MENTAL ILLNESS AND PSYCHIATRY
    MENTAL ILLNESS - INVOLVEMENT AND COMPARISON
    CRITERIA, DEFINITIONS, DIAGNOSIS, AND CLASSIFICATIONS

    EPIDEMIOLOGY

    Attached Files:

    Roy S and Wildcat like this.
  3. alex3619

    alex3619 Senior Member

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    I like this idea Valentijn however I do have one concern. While date with letters is fairly clear, with papers its the submission date and not the publication date that really sets the time stamp. There can be years difference, particularly back in the 90s or prior.
    Valentijn likes this.
  4. Valentijn

    Valentijn Activity Level: 3

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    Any idea how to cite to abstract, and/or how to cite to both a proper source and an easier to access internet source? An example from http://www.sciencedirect.com/science/article/pii/S0163834397803155:

    taniaaust1 likes this.
  5. Valentijn

    Valentijn Activity Level: 3

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    That is a good point. And looking back over Wessely's collected BS, I'm finding a fairly large amount of useful quotes. Sorting them primarily by subject matter and then by year might result in a more comprehensible list, and make it easier for ME patients that want to look for quotes on a certain subject. Then if some wants to see how his opinions on a specific matter have (d)evolved over time, or find something recent, they can go to the end of the list for that subject.

    The papers on his website have been extremely useful so far. And I'm only on paper #24 out of over 200 :p A lot are missing in the early years, and not all have useful quotes, but I am seeing some easy categories emerge: ME = atypical depression, ME = cognitive-behavioral problem, doctors should withhold biological investigation, agencies should withhold benefits unless trying therapy, ME patients = psychiatry haters, ME perpetuation = due to biological beliefs.
    Wildcat, Bob and alex3619 like this.
  6. taniaaust1

    taniaaust1 Senior Member

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    You missed another important thing he's pushed.. avoid medications except maybe a trial of anti depressants. (Im so glad you found that quote of his. Its due to him working with gov on thier policies on treating ME/CFS and his views against other medications, why they used to only recommend GET and CBT). His recommendation that no other meds be used for our symptoms proves once again he thinks this illness is only in our heads.

    I agree if the list of quotes can end up being put in the years said.. it would be even more helpful.
    Valentijn likes this.
  7. Esther12

    Esther12 Senior Member

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    Good work doing this and including links to the papers. If you're linking to the original papers, I think that you've got a lot of leeway in how you cite them. Lots of papers include their abstract within their main text, so just that needs to be cited. If this is not the case, I'd just say 'The abstract for...'

    Ta.
    Valentijn likes this.
  8. Valentijn

    Valentijn Activity Level: 3

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    Updated the first two sections ("Biological Investigations and Treatment" and "Disability Payments and Carer Assistance") through 1997. Will update the rest through 1997 in a couple days - off now for Christmas Day #2 with the in-laws :thumbsup:

    After that will do 1998-2000 quotes, then move into the more recent stuffs.
    Wildcat and Bob like this.
  9. Valentijn

    Valentijn Activity Level: 3

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    All updated through 1997. Now to wade through more of "Sir" Simon Wessely's crap.
    Bob and Roy S like this.
  10. alex3619

    alex3619 Senior Member

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    Thank you for this Valentijn. It may make my investigations in the next two years easier.
    Valentijn likes this.
  11. Valentijn

    Valentijn Activity Level: 3

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    Updated through 2000. Oddly, there were very few viewable sources listed for 2000, and the only one available wasn't relevant enough to quote.
    Bob likes this.
  12. Bob

    Bob

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    From another thread...
    Great work, Valentijin! Nice synopsis.
    Thanks for doing all of this.
    I haven't read through your quotes yet, but I've bookmarked it, and I will do soon.
    Most of what you've said, corresponds to my own reading and interpretation of Wessely's work.
    Have you thought about attempting a review of Wessely's work for publication?
    It would be a difficult project, but your interpretation could be very useful.

    Have you read his 2005 CFS review yet? I'm going to try to get hold of it in the new year.
    I think it's his most recent review, so it might be his most current overview of CFS.
    Valentijn likes this.
  13. Valentijn

    Valentijn Activity Level: 3

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    I'm certainly thinking of doing it now, after reading through what I have thus far of his work. Maybe a free or near-free self-published ebook or something.

    I just finished reading through 2001 last night, so probably haven't read the 2005 review unless it was part of a discussion on the forum somewhere. Looking forward to it though ... it's his most editorial work that is usually the most plainly stated.
  14. Valentijn

    Valentijn Activity Level: 3

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    Updated through 2002.
    Bob likes this.
  15. Esther12

    Esther12 Senior Member

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    By heck'n'balls you've read a lot of Wessely! My mind would be jelly after a condensed dose like that. You've picked out a lot of interesting stuff. Thanks. You should be making notes for yourself, so you can write up a post of your own thoughts at the end of all this. In a two week period, you've probably read more of his work than anyone else!
    Bob likes this.
  16. Valentijn

    Valentijn Activity Level: 3

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    Yeah ... my mind does sort of feel like a bowl of outraged jelly after reading a bunch of his stuff :p

    I especially want to go back and look over his "seeing specialists and having tests run will harm ME patients" statements to see what he's citing to for that. It's a rather outrageous thing to suggest without strong evidence to back it up, and even Wessely is attributing only a subset of ME cases to somatization disorders. So even with proof it could apply to such disorders, making such a blanket statement is rather dodgy.
    taniaaust1 likes this.
  17. taniaaust1

    taniaaust1 Senior Member

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    oh wow.. You've put together so much there.

    If this site is going to pay some $50 for a very interesting blog post.. I think what you got there once its finished, with a little touch up, it could make a very interesting comprehensive blog post which could be of great interest to many who have got ME/CFS for various reasons.

    It will interest many ME/CFS advocates, it will also interest those from ME/CFS people to media people to others, who dont understand why on earth Dr Wessely is seen as a villian in the ME/CFS circles. These quotes give a good indication why this guy is so hated among the ME/CFS patient group which the media tells people over and over we have issues with him.. but without giving the full story of why this guy is really disliked. Maybe PR being our voice..would help to raise understanding of the real reasons why the ME/CFS community dislikes this guy by considering this comprehensive info with the links, made into an blog article at some point when its finished.

    hey I esp like the one where he says fevers can be a sign of psychological illness!! can that be at all true?? I wonder if he referenced that fact anywhere or made it up? since when can actual fevers be a psych issue? There is so much far out stuff in the stuff you quoted from him which Ive never read him say before.

    I can imagine many wanting to bookmark a blog page with all his quotes for future referance... could be very handy when doing advocacy work and needing to refer to some of the false perceptions we often have to deal with with this illness. This quote page also could be titled.. "Why those with ME/CFS have an issue with Dr Wessely" Im sure if all his quotes being very pubically available and put together in such an easy to find quotes on certain subjects like you've done... it could help bring more understanding from others towards to the ME/CFS community (so in other words is good advocacy for us as it brings more understanding) and the crap we have to put up with. Im sick of the media consistantly hearing a biased one sided view of our illness from ones such as him and not being able to analyse his writings or understand us.

    Im not sure thou if this site would want to have info like that on its patient blog thou.. to controversal for a ME/CFS patient site sharing facts like this???? Its going to interest me now that Cort is gone.. where this site will head and if it wil head into territory where it hasnt gone before. (suggest thou to leave controversial things out of blog posts for time being thou till the site adjusts and settles down).
    Valentijn likes this.
  18. Valentijn

    Valentijn Activity Level: 3

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    Another note regarding Wessely-involved biological studies: when abnormalities are found, there is typically no correlation between the level of those abnormalities and levels of fatigues in individual patients. Wessely then uses this lack of correlation to conclude that the biological abnormality is not particularly important.

    For example, in Skowera A, Hotopf M, Sawicka E, Varela-Calvino R, Wessely S, Peakman M. High levels of type 2 cytokine producing cells in chronic fatigue syndrome. Clin Exp Immunology 2004: 135: 294-302 evidence of an immune shift was found. But "we were unable to identify any correlation between the degree of type 2 responsiveness and any clinical measurement of illness severity", thus "such immune changes are not suitable for the development of an objective diagnostic test."

    There is always the unproven assumption that 1) fatigue is the symptom of importance and 2) the methods of determining fatigue are accurate. If there is any contradiction between levels (or improvements) of fatigue versus biological findings, this discrepancy is presumed to call the biological findings into question, especially regarding relevancy. There is never any doubt expressed regarding the importance of fatigue and the methods used to measure to fatigue.

    The Nijmegen group in the Netherlands sometimes uses a similar tactic, when forced to explain lack of objective improvement via actometers despite finding subjective improvement via questionnaires.
    taniaaust1, Marlène and Bob like this.
  19. Valentijn

    Valentijn Activity Level: 3

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    The quotes post exceeded length limits, so now the first several categories are in the first post of this thread, and the rest are still in the second post of this thread.
    taniaaust1 and Bob like this.
  20. Valentijn

    Valentijn Activity Level: 3

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    Updated through 2004! When I'm caught up to the present, I'll probably go through the longer categories and remove any older quotes that are repetitive or more ambiguous than some of the others.
    Sam Carter and Bob like this.

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