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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. user9876

    user9876 Senior Member

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    Really effective advocay would be about getting papers to run positive stories. That might be as simple as making sure corrospondants who might write a story are aware of positive good papers.Giving them patient quotes around how optimistic we feel about this. IVI makes the point that it is their playground that we are complaining about - they control it. We need other stories, more positive ones in the press that change the playground.

    I still think bad stories should be challenged. I think it helped in the case of the Mail but it is futile with the Pemberton. Although making the editor aware that they are running such stories is probably worth while.
     
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  2. Bob

    Bob

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    That might be your perspective, but I doubt if many share it.
    You are projecting your own individual interpretations onto all the commenters and readers.

    I think all discussion is helpful, as it shines a light on subjects, and enables exploration of a subject.
    But I think we are in danger of attributing too much importance and significance to the comments in the Telegraph.
    I doubt if many people, outside our small community, are reading any of the comments.
    And it's not really 'advocacy'. It's just a public conversation.
    Most effective advocacy work is hidden from public view.
     
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  3. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I can only reply "yeah, you wish". There's a point at which naeivity stops being charming and simply stands out as crass. The venue under discussion is the Telegraph's website - who do think is there reading this stuff that would be likely to exercise "a fair, generous or compassionate nature" ? It is not unfortunate that the author includes more than one subject - it's a matter of 'design' ! It's getting the (unfortunate metaphore) black ants to fight with the red ants, or at least get them to get in each others way - end result still has the audience laughing - "look at those silly ants". If the world were made up of people with fair, generous and compassionate natures, M.E/CFS advocacy would barely be necessary, our problems aren't generated by the fair, generous and compassionate minded, it's the other ones we have engage with to achieve perceptual change. We are not going to achieve that change by acting like angry ants every time some overgrown schoolboy waggles a stick in our direction.

    IVI
     
  4. user9876

    user9876 Senior Member

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    Just to be clear I wasn't suggesting conflaiting the two issues. I was just pointing out the authors very different response to comments. As someone who has campaigned against racisim I was shocked.

    I do think though that the anti disability news stories in the UK press are very much along the lines of rasism (just a different target).
     
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  5. Adamskitutu

    Adamskitutu *****

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    Yes- your perspective here is your own and not representative of others, and one I don't agree with. I think you use odd analogies here that don't make sense. And there are many aspects to coping with being a downtrodden group which you are wrong to treat as some sort of glorification of said status, or make association with football fans seen as hooligans. From what I've seen none of your interpretations apply here.
     
    natasa778 likes this.
  6. Bob

    Bob

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    Hi user. Don't worry, your posts were clear.
     
  7. Bob

    Bob

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    Like you say, we are not going to change the minds of people like Pemberton, by posting comments under his blog.
    We will never change their minds, and progress will have to be made in other ways.
    But there is a good deal of effective advocacy going on, and progress is already happening, for example: with the FDA starting to take ME seriously, and the MRC (UK) now taking biomedical research seriously.
    I agree that the Telegraph's comments aren't going to achieve much, if anything, but I don't think that's important.
    There's always room for discussion and conversation. I don't see it as harmful, even if I don't agree with all the comments. (Some of the comments are very helpful.)
    If non-patients read the discussions, then there might be some comments which strike a chord, and make them think more deeply about the subject. And I think most people might be more generous and broad minded than you imagine.
    But, like I said earlier, I don't think the comments section in the Telegraph is particularly significant really.

    Edit:
    As someone said earlier, all publicity is good publicity. Lipkin's work, and all these recent (nasty) blogs, and Sonia Poulton, and Obama, are all raising the profile of ME. This can only be good news for us.
     
  8. Jarod

    Jarod Senior Member

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    planet earth
    I think we need a "love" button for your posts Bob. Send lots of love to people with the click of button.
     
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  9. Bob

    Bob

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    Oh, that was unexpected! Thank you, Jarod! :)

    I've been posting so many opinionated posts in this thread, that I thought everyone was probably getting sick of hearing from me by now! Thought maybe I should slow down soon!

    This has been an unexpectedly interesting thread and discussion.
    It's strange how a thread about a seemingly not-very-important subject, or a side-show, can suddenly take off.

    I know not everyone will agree with my opinions, but it's been very interesting exploring it all with everyone. Everyone's brought an interesting perspective to the issues.

    I do tend to be optimistic, but I do think that the psychiatric lobby are in trouble now, and I think those blogs are the first signs of the last desperate death throes of a dying paradigm.
     
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  10. biophile

    biophile Places I'd rather be.

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    Talking about ants ...

    [​IMG]
     
  11. Bob

    Bob

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    Are they big enough to neutralise hacks?

    (disclaimer: this is obviously a joke - I don't condone or encourage violence, using ants, or any other means.)

    .
     
  12. Enid

    Enid Senior Member

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    I've just posted again on the DT Bob. All very reasonable - a colleague of his has been diagnosed with ME, cannot be explained by psychosomatic fatigue and (he thinks) described as ME just because doctors don't know what's going on. Bit like a "home goal" ???
     
  13. biophile

    biophile Places I'd rather be.

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    Careful Bob, that may be misconstrued as a "death threat". ;)

    I found that image here : http://en.wikipedia.org/wiki/Myrmecia . These bad boys can grow over 40mm (1.6 inches) long!

    "These ants are well known in Australia for their aggressive behaviour and powerful stings."
     
  14. Bob

    Bob

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    Yes, I noticed that as well, Enid. It's interesting how Thompson thinks his colleague has been mis-diagnosed with ME, because he is so ill with a severe and systemic illness, which he says is obviously a physical process. Thompson hasn't bothered to find out that's exactly how we are all affected. But, instead, he declares that all other ME patients have a psychiatric illness. All of us except his colleague. I wonder how his colleague would react if he directly accused him of having a personality disorder. He tip-toes around his colleague, but It's OK to insult the whole of the rest of the ME patient population.
     
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  15. Bob

    Bob

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    Ah yes, I don't want to be added to the statistics!

    I was worrying about that, after I posted it, so I've added a disclaimer!!! o_O

    Ah, so ants aren't so useless after all!

    And do they make effective advocates? ;)
     
  16. Enid

    Enid Senior Member

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    Well you can read my comment Bob, I've spoken about the multisystem nature of ME etc, hold by the psyches since the Royal Free and the fact that the MRC are doing biomedical research. The important wording is "breakdown of one part of ....body after another" which cannot be explained by psychosomatic fatigue. Home goal for sure but won't go into how would you like it things .... reason better here. But I see your point.
     
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  17. Bob

    Bob

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    Great post, Enid! :thumbsup:
     
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  18. Enid

    Enid Senior Member

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    Link added here - thanks Bob. Comment here.

    Fingers crossed the Williams(Hooper) letter gets published this time round. One doubts if anyone reads the now over 1,000 comments on Damian Thompson.
     
  19. alex3619

    alex3619 Senior Member

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    Bull ants is the local name. Ouch. They don't swarm in numbers fortunately, unless you poke a nest, but their bite will go through light clothing easily. I should know, I encounted more than a few as a child. Children learn to stay away from them.

    Bye, Alex
     
  20. urbantravels

    urbantravels disjecta membra

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    One thing to consider in all of this is the fact that the news outlet in question apparently does not moderate comments. This isn't unusual among newspaper websites - it's expensive to have staff on hand to moderate comments and especially so when a comment thread becomes heated. But it tends to improve the quality of discourse about 1000%, if it's done conscientiously by consistently applying rules of conduct and content to all participants.

    It couldn't be more clear that the paper in question is NOT interested in rational discourse, but are perfectly happy to host a general brawl extending over hundreds and hundreds of posts. Isn't this what the British tabloids are known for - sh*t stirring with the conscious intention of scaring, ridiculing or angering the target of the moment?

    Now by my understanding, the Telegraph is not considered a "tabloid" but one of the more "respectable" papers - but the British media universe is a little strange to me, since it seems that various forms of yellow journalism are often practiced across the spectrum of papers, "respectable" or not.

    I do glean that the Telegraph is a Conservative paper, which to me unfolds a little farther the reasons why they are happy to have this mess on their site. While the release of the Lipkin paper was the proximate excuse for this particular journalistic hate piece, it seems like it fits pretty well into the overall narrative about ALL disabled people that those in power are encouraging among the populace - that they're mostly faking, exaggerating, work-shy, etc. It's all of a piece with hate crimes against the disabled and the horrors of Atos.

    If the "common people" can be encouraged to believe that there are relatively few "deserving sick," and that the rest of the "disabled" are running a nice scam to get working people's money, then you can get the public to act as your goon squad - one you don't have to pay. That seems to come out pretty clearly in many of the comments on the Telegraph piece - sure, most of those people probably thought we were lazy tossers all along, but the climate has become favorable to expressing that bigotry very openly and viciously.

    The really neat trick in ME/CFS bigotry is depicting the patient community as some sort of powerful entity - because they're a "militant" or even "armed" mob determined to deny the truth of their disease and intimidate and oppress the poor scientists who only want to pursue that truth. Any claim of mistreatment and disempowerment on our part is just part of our madness, you see?

    And, of course, if we're well enough to speak for ourselves (even if it's via laptop from bed) we can't possibly be *that* sick. That message is pretty explicit - the "deserving sick" are those who shut up.

    It is not necessary to invoke "conspiracies" merely to observe the way things go when powerful interests happen to be aligned.
     
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