The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Generating a Social Movement Online Community through an Online Discourse: The Case of ME

Discussion in 'Latest ME/CFS Research' started by Bob, Apr 14, 2016.

  1. Bob

    Bob

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    Norway.

    (Behind a pay wall.)

    Generating a Social Movement Online Community through an Online Discourse: The Case of Myalgic Encephalomyelitis.
    Lian OS, Grue J.
    J Med Humanit. 2016 Apr 8. [Epub ahead of print]
    http://www.ncbi.nlm.nih.gov/pubmed/27059618
    http://link.springer.com/article/10.1007/s10912-016-9390-8

     
  2. duncan

    duncan Senior Member

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    Sounds more like a stab at an off-Broadway play than a meaningful analysis.

    Probably as scientific as well.
     
  3. TiredSam

    TiredSam The wise nematode hibernates

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    Be interested to see how we've been contesting the dominating biomedical perception of our condition :confused:
     
  4. Justin30

    Justin30 Senior Member

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    Why dont they spend money on researching our bodies instead of what we say online????
     
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  5. worldbackwards

    worldbackwards A unique snowflake

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    That could work...
     
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  6. halcyon

    halcyon Senior Member

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  7. alex3619

    alex3619 Senior Member

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    The entire biopsychosocial movement is a social construct as well. Very little of it is sound science. So is much of psychiatry. Oops. Investigation of social movements in CFS and ME has the potential to conflate important issues.

    We do indeed write some very satirical pieces .. and publish satirical videos. However this is medical politics, not medical science, and entirely to be expected.

    Indeed this construction of the view that ME and CFS patients are collaborating to create a distorted view is itself a story and subject to the same issues.

    Almost nobody would deny, I think, that many patients, particularly new ones, have distorted or incomplete views. That observation also applies to many doctors, bureaucrats and academics. Double oops.

    Since I have not read the paper I cannot comment further. I wonder whose satirical (political) pieces they are looking at.
     
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  8. halcyon

    halcyon Senior Member

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    They don't seem to cite them directly.
     
  9. daisybell

    daisybell Senior Member

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    Both texts analysed come from Norwegian websites - one is an online forum and the other a Facebook page. I just had a quick glance through the paper - there's nothing particularly surprising in it, but it didn't appear unsympathetic to ME. I think most people reading it who knew nothing of ME would come away with a feeling of unease around how people with ME have been treated..
     
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  10. TiredSam

    TiredSam The wise nematode hibernates

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    Sociologists using long words. I made it to the middle of page 1.
     
  11. adreno

    adreno PR activist

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    What junk. Incredible what passes for "research" these days.
     
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  12. aaron_c

    aaron_c Senior Member

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    Their voice is so distant I feel like I am being dissected by an anthropologist...I have never before had a viewpoint so close to my own explained as though it is 1900 and the speaker just returned from Darkest Africa.

    For those of you who stopped before the good stuff:

    There is now reason to fear that a majority of participants in both the Norwegian and the international Chronic Fatigue network are suffering from the post-viral disorder MUPS.

    MUPS stands for Medically Unexplained Psychosocial Stupidity, a diagnosis that is widespread in the health service throughout the western world. The condition leads to delusions, lack of empathy and selective loss of hearing and vision, affecting in particular the ability to read and take in bio-medical research literature.

    Almost 1500 international studies point towards a clear causal link between an aggressive intellectual infection mechanism and this chronic and progressive complaint, which has spread from medical professors to health-service bureaucrats and health-care staff.

    For the time being, it has naturally enough not been possible to isolate contagious micro-organisms in active professorial brain tissue. On the other hand, no randomized studies have been published that can disprove that known or unknown pathogens invade and infect academic brain matter. In recent years, Norwegian research interest has focused particularly around the lion virus Panthera leo kverulantis as a likely cause of the manic MUPS condition.

    Because no-one has yet succeeded in discovering a unifying, objective marker of the disease, some isolated groups of researchers still claim that MUPS is a functional disease. Others suggest that MUPS is caused by mass hysteria and that people with unrealistic ambitions and authoritarian personality features are particularly susceptible.

    An increasing number of MUPS researchers, however, base their studies on irrefutable, academically-formulated theories that one or more pathogens trigger a genuine and serious illness in the brain of particularly susceptible individuals, particularly within the health sector. In Norway it is thought that the contagion attacks the area of the hypothalamus, to which it apparently attaches itself in autonomous, bow-shaped drapes
    which presumably maintain the condition even once the lion virus has been defeated.

    Those infected with MUPS are supporters of Erasmus Montanus and believe in Bsustained arousal.^ Recent British research holds out the hope of partial recovery or, at any rate, an improved ability to cope with the help of cognitive therapy (pure thoughts) and graduated self-training (cold showers). Lightning Process or other illumination is also recommended.​
     
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  13. Valentijn

    Valentijn Senior Member

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    Bit of a weird article. They are obviously not familiar with ME/CFS, given the way they summarize the symptoms, but they cite to to the ICC for criteria. Then they go into Neurasthenia as the original "exhaustive" illness :bang-head:

    It's odd that they claim to look at online communities, but avoid forums. A blog cannot be presumed to have much impact or viewing by the community, and Facebook is ill-suited for large group interactions. My guess is that they found the material they wanted to use, and worked backward to justify it as being representative of community attitudes. They observed 14 Norwegian sites over 3 years, but only came up with two written pieces to scrutinize.

    Ultimately this isn't a scientific paper at all. It's philosophical musings based on two online posts which were carefully selected by the authors to support their pre-existing views. I don't find it particularly offensive, aside from the general cluelessness about the basics ... while they are looking at social aspects, the are not making any widespread claims about the cause of the disease in that regard. It's just not contributing anything useful that I can see.
     
  14. TiredSam

    TiredSam The wise nematode hibernates

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    I wouldn't even call it an academic paper.

    Apart from the fact that another group of wannabes who couldn't think their way out of a paper bag have decided that our illness / community is a suitable vehicle for their pathetic ramblings.
     
  15. Bob

    Bob

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    I think that sentence in the abstract misrepresents the full paper which I found very sympathetic to the biomedical model.
     
    Last edited: Apr 15, 2016
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  16. Bob

    Bob

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    Actually, I really enjoyed this paper, on first reading. I found it to be a light, amusing, and interesting read. It's not a scientific paper. I didn't find it at all offensive, but found it supportive. It gently mocks the people who promote the biopsychosocial model, and it promotes and validates the intelligence, integrity, value and knowledge of patients. As @Valentijn says, they may be a bit loose on some finer details about the illness, but I didn't find it ridiculous. If reading, I'd advise skipping their first text example (the discussion with the bioengineer - I didn't find it interesting) and moving onto the second (MUPS) which is much more interesting and entertaining. If you don't feel like reading it, you won't have missed anything except a mildly entertaining read.
     
    Last edited: Apr 15, 2016
  17. sarah darwins

    sarah darwins I told you I was ill

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    This is just postmodern psych/sociology from a special needs education department, and in itself meaningless (on several levels). But it is worrying that psych students and postgrads seem to feel, and be encouraged by their professors to feel, that ME is a suitable sand-pit for anyone to try out their half-baked theorising about the human condition. Imagine the same article written about women with breast cancer and their online activities —except, of course, that is unimaginable; they simply wouldn't do it.
     
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  18. JohnCB

    JohnCB Immoderate

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    I think so, as they say "The community consists of individual actors" ...

    Mostly they are hiding behind big words. I'm not even sure they know what they are really talking about.

    Edit: correction, added word "sure"
     
    Last edited: Apr 15, 2016
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  19. Snow Leopard

    Snow Leopard Hibernating

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    It's hilarious that they wrote this article, without actually talking to the people who wrote the texts in question, nor those who have read it.

    I know all about humans, through watching them on the internet! I don't need to speak to a human to understand them!
     
  20. Dolphin

    Dolphin Senior Member

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