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Why few dare tackle the psychology of ME

Discussion in 'General ME/CFS News' started by Firestormm, Sep 24, 2012.

  1. barbc56

    barbc56 Senior Member

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    Once again I am not against healthy debate. In hindsight, I probably should have put this in the other thread about people's perception of us. I don't like Wessely. I don't think anyone speaking out against his views, and that would include myself, are the militants. Advocacy is not the same as being "militants" but that may be a matter of semantics.

    I think people know perfectly well the type of militancy I am talking about. Notice, I put I think.

    I grew up around debate. It was my father's occupation. Maybe that's why I get so irked when I perceive comments on a blog as well as a forum as crossing the line into accusations, conspiracies and sweeping statements that may or may not be true. That being said, I don't know what people's motives are for posting so it's difficult to discern exactly the purpose of what people are saying. This is the bane of the internet.

    I try to remember comments on a blog are not a debate forum but the responses to this article which TBH, are far less intimidating than comments I have seen on other blogs as well as internet forums, was perhaps, for me, the straw that broke the camel's back, for lack of a better term.

    I am not saying we as patients we should never speak up. Just the opposite. But the truth, for better or worse, is that we are under a microscope and advocacy can be a slippery slope. I hate it but sometimes we have to give a bit in the short term to reach long term goals.

    I advocate for me/cfs. My type of advocacy may not be the same as other's definition of this.

    I shouldn't have to explain myself any further.

    Barb. C.:>)
    Firestormm and alex3619 like this.
  2. biophile

    biophile Places I'd rather be.

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    I am glad that Angela Kennedy is advocating and I appreciate her efforts and achievements

    I wish someone could please explain to me how she has done more harm than good? I do not completely understand the history of animosity against her, but I suspect it began with her previous involvement in the OneClickGroup which she left almost a decade ago. In addition she is passionate and articulate, which can create difficulty for people that want to challenge her for challenging them, I imagine she would not be an easy opponent.

    Of course, that does not mean I necessarily agree with everything she says or does with unconditional support, or propose that she is above criticism from others, or claim that she represents everyone's wishes and opinions, or assume that anyone who disagrees with me or her must be wrong and therefore the so-called "enemy".

    I fear that advocacy in general is being judged too much on how it looks to some proportions of the public and/or other detractors. I really hope that people within the ME&CFS communities or collective are not falling for the smear campaign themselves by uncritically accepting all claims of militancy at face value. I would not appreciate the notion that we should all just fall in line so we do not look too "militant" to a bunch of uninformed prejudiced n00bs on telegraph.co.uk etc.

    As I said before, the accusations of militancy we face clearly tends to include anyone who does not agree with Wessely et al or the claims being made about militancy etc, so although it is important to denounce harassment and violence, care must be taken not to inadvertently agree with the allusion that anyone who disagrees with the claims are militants.

    I perceive myself as relatively moderate but apologetic for some arguments which I think have been inappropriately deemed by some to be "militant" or "extreme" eg speaking out assertively against establishment psychobabble and questionable biopsychosocial research or related claims about the characteristics and motives of patients. To me, attempts at reasonable critique or supporting such critique is more important than how it looks to certain others.
    maryb, alex3619 and currer like this.
  3. biophile

    biophile Places I'd rather be.

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    Well, I think we know perfectly well the type of militancy that is being claimed or alluded to. The question is, to what extent is it actually occurring as described rather than being something which "everyone knows" exists but cannot put their finger on verifiable examples? The conflation and juxtaposition which have occurred in the news media and even medical journals, of rational criticism/objections with extremism or harassment or criminal activities, has made me much more skeptical about claims of extremism and militancy. I accept the possibility or probability that it occurs to some very limited extent, but I cannot accept such claims at face value anymore.
    maryb, Nielk, alex3619 and 2 others like this.
  4. Valentijn

    Valentijn Activity Level: 3

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    She has good points sometimes, but often resorts to personal attacks/sarcasm/etc. She also tends to get repetitive, and overly spammy at times. It would be better if she could keep her responses short and to the point, and not respond to the trolls and dismissive one-liners that are not looking for discourse.
  5. barbc56

    barbc56 Senior Member

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    My concern is what I said above. The squeaky wheel gets the attention. We are misrepresented.That's why others need to speak up.
    I understand you like specific examples but I want to stay on this forum and I DO think many know the behavior I am speaking, as it can't be missed.
  6. kaffiend

    kaffiend Senior Member

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  7. Firestormm

    Firestormm Guest

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    Morning Esther,

    Yeah I kind of lost it a bit. Realised that after retiring. What I was trying to get to was that in any large 'advocacy' group, there is generally deemed (perhaps by their 'unacceptable behaviour' perhaps as some sort of 'well there must be' construct) individuals who are collectively deemed 'militant'.

    Any of those 'militants' rarely I would suggest see their own actions as being anything approaching 'militancy' or 'unacceptable' or as having crossed any social line. But to some people individual behaviour and collective reflection of that is deemed to appear to.

    I dare say that those deemed to have 'hounded' and 'slagged off' Pemberton will not see their relentless activity in this light - and they may of course have a point. It is ever the case that those forming the opinion are 'wrong'.

    What is happening now - or in danger of happening - is that individual actions are seemingly being seen as a reflection of the whole. It doesn't cost 'our community' anything to play to the social model and condemn the actions of the 'extremists' when their collective behaviour crosses any socially unacceptable line.

    Now I am not comparing what has occurred (or not occurred) with Pemberton and (presumably might occur) with Thompson to anything approaching the collective 'death threats' of last year. What I am suggesting is that unlike last year people perhaps reflect more on how their actions might be construed when repeatedly responding to perceived 'threats' received on internet blogs i.e. the Daily Telegraph.

    Not sure if even that little lot makes any sense.

    Studinkawski - I referred to 'manic' behaviour not PC I admit and probably should have used a more considered term I suppose.

    'Mad' I attached to Wessely I believe and more specifically to his assumed willingness to make such comments knowing full well they would be broadcast loudly across the internet and retained for all time - possibly out of context - and regurgitated as 'evidence' of his duplicity. Hell he probably did it on purpose to - as I said - see how the animals react and 'prove' his own point, if not (as I suspect) to be sarcastic and melodramatic. He does seem to enjoy citing the one-liners after all - and with this content he was certain of again getting into the news. Assuming of course the headline quote came from him - maybe the letters of complaint will reveal that to us.

    When editing and proofing a tome from Dr Ramsay earlier in the year, I was reminded of a lesser-known repeated observation made by - I recall - pretty much all those involved in trying to piece together a clinical definition of 'ME' and that was 'emotional lability'. Now whether or not you (or I) believe that such a response is an inherent part of our condition - I think most people would agree on a basic level that 'we don't respond well to emotional stress'.

    When the articles initially hit my inbox - my stomach went through the floor. I couldn't believe it. 'here we go again' I thought, 'has all our efforts been for nought?'

    The actions of a few, the actions of the many, whatever, the repeated postings, the 'activity' level, the time of the postings, the pursuit on twitter... the overall 'reaction' to a threat perceived or otherwise, and the content of said postings... these things can and do reinforce not only the stereotype being posited by Pemberton et al. but also to me are displaying signs of 'manic' behaviour - but I also recognise that they could be signs of what has always been spoken about by medical professionals and patients alike - we don't respond well to stress and some people will go further in their reaction, by doggedly pursuing the deemed offender.

    And hell I ain't excluding myself from that either at times. But all the time? No. And taken as a collective reflection by an uninformed and 'hostile' outsider - well seems to me that that one will run and run and run. I don't understand the need to be 'as involved' to that extent as some do and to make comments that are illogical at best and at worst inflammatory themselves - or plainly wrong and characterised as being authoritative. I don't feel the need to say something, anything, repeatedly, just to knock 'them' back as hard as I feel I have been knocked myself. 'Don't they understand! I am sick here!'

    If you are going to go and comment about something that is not a reflection of your own personal experience, on a public forum, then you should at least try and ensure you are correct in what you say, or if stating an opinion then make it clear that you are doing exactly that. Hell, with this here internet malarkey and anonymous avatar's behind which to hide - who knows if you or I or anyone else even has a diagnosis of ME? And yet we all assume they do and are seemingly 'happy' to allow those with our condition to make asses of us all.

    For the record: I am Russell John Fleming. Catch me on MEA Facebook or Facebook generally. Whatever...

    Of course it is our own perception of who's comment, repeated comments, activity, actions themselves, opinion etc. are illogical, detrimental, abhorrent, and, indeed, 'militant'. And there are some who do not have ME and whilst not always qualifying why they have such an interest in our plight - are certainly (by their behaviour) creating an impression and reinforcing the (what I would deem) 'negative' collective stereotype that a few appear to cling to: and Ms. Kennedy is one of them.

    But you are of course right. It is in one sense 'wrong' to single out any fellow patient's activity and in doing so attach all blame to that person, and I didn't mean to do that. I think it was Alex that raised the question over 'ME Science' although he was spot on (though it could have been me I don't recall now).

    Thing is surely, that on any particular forum when one (or more) person's activity is so 'manic' (yeah maybe not such a PC friendly use of the word, ok), so 'active', ah hell whatever the word/term you want to use - when a person or rather an avatar is seen so often on a public forum an impression is created. And if that avatar is happily stating nonsense, or replying aggressively, or heaven's forfend, actually deeming to have insider knowledge of how the community collectively feels - that I have ever right to object. Don't I? I mean I could have gone to the Telegraph and denounced each and every one of the comments I objected to - pointed out their fallacy etc. but I chose not to. And I don't only mean ME Science either.

    As it was I 'recommended' those who did take the time to post something sensible and with which I agreed. That's alright, yeah? I mean all we're doing on these forums is expressing (to the best of our somewhat limited ability these days) our opinion, right? Our response and interpretation of what has gone before.

    You know, I too have had a couple of what might be deemed by some to be 'threats'. It ain't nice is it? Especially not when they come from my fellow (presumably) patients.

    One such 'threat' was titled: WE ARE WATCHING YOU! It proceeded to inform me that 'they' didn't feel I had ME and that I was therefore - I presumed - some sort of 'plant' by the psycho-brigade-collective. Said person, after being banned from the particular forum upon which I was a voluntary moderator - proceeded to 'stalk' me onto another forum and posed as my alter-ego-avatar attempting to 'reveal to the world' who I really was. Of course I didn't give a toss. But some do. Don't they?

    Edit:

    Added link above.
  8. Enid

    Enid Senior Member

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    I'd especially like to thank Bob for Margaret Williams (Prof Hooper's) response as usual covering all the points. The word "responsible" stands out for me seeing utterly irresponsible behaviour since SW's observations long ago trying to mislead all and letting loose a flood of what appears to be cronyism only since biomedical research findings have always been ignored or (as Pemberton recently) incorrectly reported.

    @ Bob 261.
  9. currer

    currer Senior Member

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    I object to any criticism of ME patients. Whatever their behaviour is alleged to be.

    And remember these are only unsubstantiated allegations, serving the purpose of those making them.

    The reason I would never criticise ME patients for their (alleged) behaviour is because they are SICK.
    Sick people cannot behave acording to the norms that apply to others.This is understood for other diseases, but not for us.
    How would people with kidney failure or heart disease behave if they got no medical treatment and had their disability denied? Or were required to watch their children with these diseases going uncared for and untreated?

    You would not find any other patient group able to tolerate this treatment long term any better than us. Not only are PWME sick, but they also live in a society that is abusive towards them. A degree of paranoia is a normal reaction in such a case.

    This is the main reason that some people with ME become disturbed, quite apart from the neurological involvement in ME which does affect mood and thinking. But we are not criminal, but ill.

    Why is this reality ignored, and a delight taken in mocking and humiliating us? This is unenlightened and barbaric behaviour, expressing hostility against a group of patients.
    The medical profession is trained to care for patients, and is not supposed to succumb to the more enjoyable but primitive desire to abuse its power.

    I am really concerned by the readiness of some of us here to side with our abusers
    Why this desire to identify with the powerful - even at our own cost?
  10. Firestormm

    Firestormm Guest

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    Oh before I retire -

    Mum's birthday today so excuse my lack of presents (HA!) - someone referred to the 'islamaphobia' comments on the I think Thompson blog.

    There's a 'report' function at the Telegraph and I have used it to report the twat with the 'confederate' avatar.

    As IVI mentioned previously, I am actually surprised by the relatively low number of comments in this regard on that blog. For the Telegraph I mean.

    Indeed I would have expected far more. Kind of made up for though my those pertaining to 'ME' which was only one of the issues mentioned of course - albeit the perhaps more inflammatory one.

    I also mentioned way back I think that this idiot Thompson is rather known for his lust of creating mayhem. As I think this comment early one demonstrates:

    910 comments now and counting....

    Edit: Now noticed that the most recommended post is not related to ME but to Muslim's or more specifically the debate (or lack thereof) that non-occurred on Question Time last week.
  11. currer

    currer Senior Member

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    The primary transgression, the origin of all the problems we see between patients and the establishment has come from the refusal of the establishment to research, treat or provide medical care for us or for our children.

    That is the primary abuse.

    Any subsequent problems stem from this failure, and this only, not from us, the patients.
  12. Adamskitutu

    Adamskitutu *****

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    You are entitled to your opinion of course (which I don't agree with), but from what I see she's very knowledgeable about strategies and use of language, probably related to her field of expertise.

    I think she's effective, and I wonder how other people would feel about their advocacy efforts being put under the spotlight, judged and criticized, especially under their own name.
    currer, alex3619 and Min like this.
  13. Bob

    Bob

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    It's not my place to tell other people what they can and can't discuss, but I think if we continue to discuss specific individuals, then this thread will quickly degenerate. Discussing advocacy methods, without naming individuals, would be more constructive, IMO.
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  14. user9876

    user9876 Senior Member

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    I think that was me. Infact there are some really unpleasent comments on the blog not relating to the ME story. As well as the islamaphobia someone has started placing antisemitic comments and some pretty nasty comments aimed at Damian Thompson. I've reported some and they are being blocked. The point is though I bet he doesn't talk about these comments and the issues of racism but instead chooses to play up a discussion of ME into being comments getting at him and Pemberton.
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  15. In Vitro Infidelium

    In Vitro Infidelium Guest

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    But that's the deal - it's their playground and they get to make the rules. I'm only further confirmed in my perception that those who insist on partcipating in these unwinnable battles, ultimately wish to maintain the status quo. At no point has a clear message about M.E/CFS emerged in a way that anywhere outside the flash mob (frankly I'd chose a more derrogatory two word term suggesting group fornication) an increased appreciation of the difficulties and seriousness of M.E/CFS has been achieved. It doesn't matter how much anyone of us with the illness is impressed by the various flag wavers and stormers of the battlements when what has been achieved is a conflation of M.E/CFS with racism and bigotry, and urther confirmation of bias aganst M.E/CFS affected people amongst an already unsympathetic audience. That's not even a Pyrrhic victory, it's the equivalent of a public bath in sewerage. Still I doubt that will stop the orgy of self congratulation that now flows here and elsewhere. All fine and good if you really are happy at being in a MIllwall FC bunker pretty dumb for anyone who actually wants change.

    IVI
  16. Adamskitutu

    Adamskitutu *****

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    That is very strong language. But I don't understand what you mean. Where has ME/CFS been conflated with racism and bigotry, for example? Who is in a Millwall FC bunker? How do you know people commenting have only made things worse? Where is the orgy of self-congratulation?
  17. In Vitro Infidelium

    In Vitro Infidelium Guest

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    In principle I agree with avoiding 'names', but it is difficult to avoid when you have individuals advancing a very particular perspective, while claiming authoratative or representative status or at least not not stating the particularlity (I, me, my) of that perspective. And is the issue here advocacy - or is it personal free speech ? The two are rarely the same thing, with effective advocacy requiring a great deal of caution in what, where, how and by whom a message is delivered, promoted and defended. Mobs (flash or otherwise) and/or opinionated self promoters, are rarely good mediums for the advancement of effective advocacy.

    IVI
  18. Nielk

    Nielk

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    What is effective advocacy then? Keeping silent in the face of bias reporting?
  19. Bob

    Bob

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    I don't think that has happened, IVI. It's unfortunate that the author includes more than one subject in one webpage, but the subjects are very separate, and there's no overlap of subjects in the discussions. Anyone reading the main blog, who has a fair, generous or compassionate nature, will understand that it is misanthropic, unfair, unjust and nasty.
    Jarod likes this.
  20. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The 'sliming effect' merely requires close proximaty - it's not fair of course but it's the way it is, in this case an M.E/CFS 'horde' is contending ground alongside a racist 'horde' and in terms of image become one and the same thing. Those who are enjoying the fray will of course deny this is the case, they will defend what they are doing because they see it as important and discount the possibility of negative imagery extending onto M.E/CFS territory.

    As far as the bunker is concerned - it's a question whether one is interested in actually changing perspectives of those who currently do not support fair and reasonable judgements about M.E/CFS, (that endeavour I would class as effective advocacy) or whether one is happy to maintain a wholly oppositional view and in so doing confirm the bias against M.E/CFS . To confirm the bias is a bunker view, one that embraces being perpetually on the outside (of whatever) - like Millwall FC (or at least some of its supporters) who actually celebrate teir outsider status and in so doing perpetuate it, it's a position that will suit some people's self perception; I consider it to be utterly defeatist and the antithesis of effective advocacy.

    If you don't see self congratualtion (and justification) in this thread and on other fora, then we are clearly irrevocally divided by perspectives.

    IVI

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