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ME: bitterest row yet in a long saga

Discussion in 'General ME/CFS News' started by Omar88, Nov 25, 2012.

  1. Firestormm

    Firestormm Senior Member

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    Indeed, Valentijn, or to one's interpretation of those opinions :) I can assure you that what you perceive to be a 'pro-psychiatry' stance is nothing of the sort, but please do not take my word for it - sure IVI will come along and speak for himself.

    It is quite funny though, when you think about it, how what is said by way of comment on a forum, is taken to mean that a person 'believes' so and so, isn't it? Well I think it is.

    If someone - say me - posts a comment based on something - is that a reflection of my entire understanding? Or an invitation to debate what I might have said?

    I think sometimes people think we are here writing dissertations. I really do. It's rather like healthcare - take from it what you will - engage with it how you like - form an opinion of it but don't assume your interpretation is shared by anyone else or by the whole - or that your interpretation is correct.

    Whether I have an Oxbridge education or one from Wales, or have worked for some leading economists, or am one myself, or have made so much money in my time for others that I should not now be reliant upon the NHS, whatever my background, my comments at any particular time are not necessarily a reflection of who I am or how highly you should rate my contribution.

    It's a forum. Personally I value all contributions. I don't expect y'all to agree with mine or I to agree with yours. It's a forum. Only wish I could buy and sell fruit and veg here too :) :)

    Happy Xmas :)
    DaiWelsh likes this.
  2. Jarod

    Jarod Senior Member

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    I edited my comment.

    I won't name any names. However, there has been a big push to hang a couple of old comments from one or two people from somewhere on everybody. That is manipulation in my book.

    Shaming people in to silence with media articles (or other means) is nausiating. Many of the dirty words used in the articles are not helpful either. Dirty words like..... conspiracy theory, militants, extremists, etc...Hence I'm not suprised the people publishing these articles get some nasty emails.

    Lets face it, with dishonesty and manipluation ruling the debate, there is no way to get to the root cause of our problems. Also need government funding for non-partisan independent researchers. Because the little money given out now is getting blown.

    The problems are not limited to CFS.
    taniaaust1 and Wildcat like this.
  3. user9876

    user9876 Senior Member

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    During the first gulf war George Lakoff wrote an article examining the metaphors used. His argument was that the language used tried to minimise the impact what was happening by personifying a war as a personal battle or using neurtral words such as colatoral damage to discuss deaths.

    His point was that the language and particular the metaphor used in describing a situation has a huge impact on how it is perceived. I believe he went on to write a book about US elections making the same points but I've not read this.

    Hence the words used become important and using a word such as extremisit and militant does conjour up different images than simply talking about angry patients and their families.

    The point being the choice of language is important.
    biophile, taniaaust1, Holmsey and 5 others like this.
  4. Firestormm

    Firestormm Senior Member

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    The Countess of Mar has published an Open Letter about Wessely: 4th December 2012:

    http://www.investinme.org/Article-395a Letter from Lady Mar to SWessel.htm

    Appears to have gone down rather well - unsurprisingly - with those on Facebook. I won't post in full, I happen to think it rather misses the point of the published letter and is perhaps too much a reflection of an assumed personal slight - but I can also appreciate where Lady Mar is coming from and her request for a meeting with Wessely is good (echoing that of Prof. Hooper actually).

    There is far too much on the internet about Wessely; but I wouldn't hold my breath in getting any concrete or straight answers. Psychiatrists don't work that way!

    Kina, kindly posted this interview with Wessely from the New Scientist. Whilst published in March 2009, it perhaps gives some idea at least as to where he was coming from at the time and I hadn't read it.

    We might not agree with what he believes - why would we? but I cannot condone the threats towards him and to others engaged in research and clinical treatment - whatever their medical profession or belief or outcome of their work.
  5. alex3619

    alex3619 Senior Member

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    Hi user9876, I am currently investigating this. Lakoff has written several books on the topic. I am not sure I agree with everything he says, in some ways he seems to have a narrow view of things (I might post a review later) but the overall argument he makes seems solid. Bye, Alex
  6. user9876

    user9876 Senior Member

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    I was recommended his first book "metaphor we live with" by a psycholinguist many years ago. At the time I was looking at mental representations of language and inference. I think the idea was that different metaphors would lead to different inferences and hence different mental models for story. There is some work suggesting that on hearing a sentence we do not remember what was actually said but have a mental representaion of the outcomes - I think most of the actual experimental work was on spacial reasoning.

    The gulf war text is here:
    http://www2.iath.virginia.edu/sixties/HTML_docs/Texts/Scholarly/Lakoff_Gulf_Metaphor_1.html
    but there are more articles on his web site:
    http://georgelakoff.com/writings/allwritings/
  7. alex3619

    alex3619 Senior Member

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    My first encounter with Lakoff was with Women, Fire and Dangerous Things. This book was background reading for my PhD candidature as I was working on neural models of categorization and how categorization changes. I was into neurologically based AI.

    Lakoff's views should be considered as highly controversial, but not necessarily wrong. I think there is substance to a lot of it, but as I said I am still investigating.
  8. Min

    Min Senior Member

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    Firestorm said:

    There is no proof of any threats from patients diagnosed with myalgic encephalomyelitis, the allegations that they have made threats are hearsay.
  9. alex3619

    alex3619 Senior Member

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    I am aware of at least one case where some kind of threat has been confirmed but I am not sure I should discuss details, and I do not know if it was a real threat, some kind of abusive communication, or a completely overhyped minor incident. As I have said before, I do not doubt there have been abusive communications. Some of these might have been construed as a threat, as in the person who received them felt they might be threatening. That does not necessarily mean they are threats. I suspect this is mostly hype, a diversionary tactic, yet another layer of spin. If not then they could demonstrate at least one court conviction, no? No. Or at least, they haven't so far.

    Yet even if one person was found to be making threats, the language used can sound to some as if they whole advocacy movement is engaged in these tactics. I see no evidence of that. Most of us wouldn't condone it.

    Many of the CBT/GET researchers really don't like being questioned. They want to be unaccountable. They want zero transparency of their research outside of what they deem to release. This is not what should be occuring in science. It fits other definitions of nonscientic behaviour that I am investigating for my book.
  10. Jarod

    Jarod Senior Member

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    Exactly. Nothing has been proven, nobody has been convicted. The alledged person who posted this stuff is unanimous. The context of the comments are left out with no link to the source. Nobody knows what the diagnosis or medical history of the poster was.

    It's hard to understand what actually happened without better context.
  11. Min

    Min Senior Member

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    Jarod said:
    So am I, but the person involved stated that they do not have M.E. I know of no person with a diagnosis of the discrete neurological illness M.E. who has been proven to have written threatening letters or emails.



    Also, FOI requests about M.E. are being considered 'harassment' when they are not, they are just requests. There seems to be a deliberate campaign (by those with most to lose from biomedical research being undertaken) to traduce (great word Lady Mar!) a whole patient group based on hearsay.
  12. alex3619

    alex3619 Senior Member

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    Min, the "at least one case" comment was mine. I do agree that this is an attempt to stop us from making the research accountable and transparent. FOI is always valid. If they simply released the information, became a transparent and accountable research group, then FOI requests would be unnecessary.

    So far as I am concerned many UK patients are being abused and harassed every day. Where is the discussion of their rights? This is a very one sided debate so far, at least as far as most of the media is concerned.

    Why are not researchers/psychologists/psychiatrists like Leonard Jason, Ellie Stein and Fred Freidberg being harassed? Why isn't anyone asking that question? Why is it only those promoting CBT/GET based on the dysfunctional belief model that we object to? I mean Pacific Labs has people exercise, we don't object to that. Similarly many of us are treated by psychiatrists who are not using the dysfunctional belief model, and we don't object to that. The issue is not psychiatry, or psychiatrists, its particular unproven and untestable hypotheses that are routinely presented as factual that we object to.

    When I read accounts of how many CBT/GET proponents claim we think ourselves into CFS, I have sometimes laughed. Its ludicrous. I do not know any patients that think like that from what I can tell, and I don't think like that myself. So I wonder if they have A/ ever bothered listening to real CFS patients, B/ are projecting their ideas based on unproven theories onto patients and C/ have designed studies to support their ideas without dealing with the real issues. How much bias in involved?

    These are questions they do not want asked, just as they don't want us asking why the PACE trials were such a failure, even after the changed the outcome measures so that a disabled person can enter the study, get worse, and then be considered "normal". Or why the unsubstantiated and hyperinflated recovery claims which were supposed to be retracted never have been retracted. Or why nobody, so far as I am aware, who was a part of the PACE trial, has stepped forward and tried to correct these major errors. If this was done without telling anyone it might constitute scientific fraud. Since it was so open and public then that claim cannot be made, but why then has nobody called them to account aside from a small number of patient advocates? What is wrong with the scientific community, the media, and health authorities?

    Bye, Alex
    biophile, taniaaust1 and Min like this.
  13. Enid

    Enid Senior Member

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    Sigh - we keep going round and round this - very simple - an illness (researches now identifying the pathologies involved) - psychiatry as always the stumbling block/fastest to leap in as biomedics take their necessary time to discover the aetiology and cause of ME. This thread is about a long bitter saga - of course real medicine against old superstitions who have the capacity to see someone lying flat (without recall) term "all your mind"

    And all I know locally here quite simply never recovered health - we live with it.
  14. Esther12

    Esther12 Senior Member

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    I just had another quick look there, and the discussions around CFS seemed (again) pathetic. Really thoughtless, lazy stuff which sidesteps any of the specific criticisms that were being made (I saw ch00b made some points about the way statistics were manipulated in PACE which were totally ignored). I'm sure that they've had some rubbish posted by CFS patients too, but aren't sceptics meant to be able to rise above such things due to being committed to a careful and critical analysis of the evidence? Instead it's the usual narrative of morons: 'it's so insulting to those with mental health problems to point out that the results from PACE have been spun... don't you realise the mind and body interact... Cartesian dualism... 'all in your head'... CBT can help those with cancer'.

    (Please don't anyone bother going over there to complain about this, but I just want to mention one thing as an example):

    One poster (Chris Preston) was claiming that saying the PACE researchers were lying in their claims about efficacy was an example of harassment.

    Then later another poster said this

    The next post was another from Chris Preston condemning harassment. The Countess of Mar's, for what she'd said about Wessely.

    Now I don't want to get all precious about what people write or say. I like to give people quite a bit of leeway to express themselves however they prefer, and think that the use of violent language can be fine for expressing emotional responses, creating a sense of drama, humour, etc... but my impression is that were a male CFS patient to say that they wanted to give a female CFS researcher a really good slapping: hard enough to bruise his hand, that this would be viewed as unacceptable, and the excuse 'I didn't mean it' would not be viewed favourably.

    Having said all that, when I last looked there the non-CFS discussions seemed fine and often useful. There's loads of stuff I disagree with on this site too, but when self-declared sceptics get caught up in their prejudices it's much more irritating to me than when random patients do.
    Adamskitutu likes this.
  15. Firestormm

    Firestormm Senior Member

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    Hi Esther, am having a rough night - hence the hour :)

    Were they referring to Wessely's response to Lady Mar perchance? http://www.meactionuk.org.uk/Simon-Wessely-to-Lady-Mar.htm I mean it was unfortunately predictable and undermining of any argument raised. If you can't get your facts straight then the foundations crumble and you look foolish. Having said that I have yet to check the transcript he included...

    N.B. I haven't visited Bad Science Forums to actually see what was written. Haven't been there for some time. Never get round to it. Can't be everywhere :)

    Edit:

    Was bored so took a gander at Bad Science. There is some interesting debate occurring there Esther. You didn't include a link, but I was reading this one: http://www.badscience.net/forum/viewtopic.php?f=3&t=31452&hilit=Lady Mar&start=350

    I think much of it echo's what we have been talking about lately. There are some good references from 'jeff' that I hadn't seen before. The one from 'you and yours' on Radio 4 about CBT featuring Charles Shepherd and Atkinson for example from 2007: well that's my own experiences of this intervention to a 'T' :)

    Interesting quote from Trudie Chalder:

    See: http://www.bbc.co.uk/radio4/youandyours/transcripts_2007_45_wed_03.shtml
  16. barbc56

    barbc56 Senior Member

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    It was really a small portion of the thread. You almost need to read the whole thing, which would probably be too time consuming, to get the tone of the forum as at that time there was mud slinging on both sides. I believe it was the same time when Jonas had reported Myhill but need to look that up. Not saying it was okay what was said but explaining the context in which it was said. Not true on the whole thread, though.
  17. Firestormm

    Firestormm Senior Member

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    Have added an edit above :) What you doing up?
  18. barbc56

    barbc56 Senior Member

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    It's only 11:30 here. I am usually up at this hour as I'm a night person. Anyway, I just went back and read the citation and other than the first couple of posts I didn't think it was that bad. I've read things that are just as insulting towards Wesseley on this and other sites. Not that this justifies anything but my point being that it's so easy to criticize others and not realize that we are doing the same thing. I am still dumbfounded that many of the posts about Wesseley on this forum are not seen as rather spiteful.
  19. Adamskitutu

    Adamskitutu *****

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    This is shocking in its sexism and expression of wish to do violence, especially within the context of accusations of intimidation by big bad ME patients allegedly bullying scientists. Firestormm and Barb, I have to ask: aren't you shocked by this?
    peggy-sue likes this.
  20. Firestormm

    Firestormm Senior Member

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    Adam, you think that's bad. You should read the language employed a couple of posts prior to that one I think! Of course I don't but I can't control what the forum considers language moderation.

    I think the poster you refer to might have been implying rather strongly that Lady Mar was experiencing a tantrum with her comments about an unpaid for lunch. I think this was raised earlier on that thread.

    You must admit, it was rather 'odd' to raise that issue in a letter supposedly of a serious nature. It actually, I think, allowed Wessely to reply as he did: http://www.meactionuk.org.uk/Simon-Wessely-to-Lady-Mar.htm

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