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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Paper by white reviewed by wessely

Discussion in 'Latest ME/CFS Research' started by pollycbr125, Feb 5, 2013.

  1. pollycbr125

    pollycbr125 Senior Member

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    http://shortreports.rsmjournals.com/cont...type=HWCIT

    Views on the nature of chronic fatigue syndrome: content analysis
    Zahra Hossenbaccus1 and Peter D White2⇓

    Abstract

    Objectives Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), has provoked much controversy and led to arguments between the medical profession and patient organizations. A particular focus for debate is the categorization of the condition as physical or psychological in its nature. The aim of this study was to compare how the written media, patient organizations and medical authorities regard the illness.

    Design Content analysis of newspaper articles, ME patient organization websites, and medical websites and textbooks were assessed by two independent assessors.

    Setting Three national UK newspapers, UK ME websites, and UK medical websites and textbooks, were accessed during 2010.

    Participants 146 source files were scored from 36 patients' organizations, 72 media articles and 38 medical authorities.

    Main outcome measured The overall opinion of an article or website was rated using a five point Likert scale, from ‘extremely psychological’ (scored as 1), ‘moderately psychological’ (2), ‘both psychological and physical’ (3), ‘moderately physical’ (4) or ‘extremely physical’ (5).

    Results Eighty-nine percent (32 of 36) of ME patient organizations considered the illness to be physical, compared with 58% (42/72) of newspaper articles, and 24% (9/38) of medical authorities. Sixty-three percent (24/38) of medical authorities regarded the illness as both physical and psychological. The inter-group differences of the Likert scores were statistically significant (χ2 = 27.37, 2 df, P < 0.001).

    Conclusion The considerable disagreement, particularly between ME patient organizations and medical authorities, may help to explain the gulf in understanding between doctors and patients and the consequent reluctance of some patients to engage in behavioural treatments.


    to read full paper click on link above .
  2. SOC

    SOC Moderator and Senior Member

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    This would have been more interesting if they had also somehow measured how familiar patient groups, media, and "medical authorities" were with the past 10 years' research on ME/CFS.
    Dolphin, taniaaust1 and Jarod like this.
  3. peggy-sue

    peggy-sue

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    Do the 63% of "medical authorities" who view it as being "both physical and psychological" subscribe to the bio-psycho-social model?
  4. Min

    Min Senior Member

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    Funny how myalgic encephalomyelitis was just a physical illness with no controversy involved until they and their colleagues redefined it, invented 'CFS'; they have spent their time since denigrating patients with it and extending the definition of CFS to include anyone feeling a bit tired, whilst misappropriating all research and treatment funding.

    - is this them gloating about their vile achievement?
    beaverfury and taniaaust1 like this.
  5. peggy-sue

    peggy-sue

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    I thought it was just another bit of "getting something published with no work involved" in order to bump up the number of publications and recursive citations they can quote as being part of the "massive literature" (choke) they have produced on the subject...
    ukxmrv, Min, Valentijn and 2 others like this.
  6. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Here's the money shot:

    http://shortreports.rsmjournals.com...id=1&FIRSTINDEX=0&fdate=//&resourcetype=HWCIT

    Trying to categorize illnesses into either biological or psychological models has created division among healthcare professionals, patients and their advocates. This division simply creates unnecessary arguments instead of consensus. The concern that the condition should not be perceived as psychological has driven some healthcare professionals and many patient organizations away from supporting effective behavioural treatments. This illustrates the importance of the biopsychosocial model, first expressed by George Engel.19 The advantage of this model is that it incorporates both mind and body approaches to the benefit of the patient.1,20 The main problem of regarding the illness as purely physical is that it may produce a nocebo effect to behavioural treatments, and discourages patients to engage with these treatments, which have now been shown to be safe and moderately effective.21 This is particularly important because doctors use ME organizations and the media as their main source of information.22
    Firestormm and Simon like this.
  7. Marco

    Marco Old blackguard

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    So a 'superplacebo' effect (SMT plus CBT or GET) is fine but a nocebo effect is a 'no-no'?
    Valentijn and wdb like this.
  8. peggy-sue

    peggy-sue

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    Obviously. :p
  9. alex3619

    alex3619 Senior Member

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    Actually from about 1970 ME has widely been regarded as psychological, largely due to a paper that without evidence attributed the Royal Free Hospital outbreak to mass hysteria. CFS was not coined for another 18 years after this. The label ME has been tainted ever since, quite unjustifiably.

    While the idea of BPS is touted as a balanced systemic view of disease factors, in practice and indeed in Engel's original paper it is clearly a rebranding of psychosomatic medicine. Emphasizing balance then only discussing the psycho part in any depth is deceptive at best. This is psychospin in action, justification for a failed and failing branch of medicine.
    GhostGum, Valentijn, Shell and 3 others like this.
  10. pollycbr125

    pollycbr125 Senior Member

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    Im wondering what the next load of crap is that is heading our way as Alex says this is psychospin in action they know they are on a sinking ship and are willing to pull any old rabbit out of the hat in order to try and save their skins . I think there may be more papers like this to come . What a waste of money , I wish someone would put money into studying folk like myself who are positive on the ANA test and have several other abnormal results yet are still labelled as ME because nobody seems capable of joining the bloody dots . I despise papers like this when I know I am suffering a physical illness , getting sicker and having to fight on a daily basis yet folk like White and Wessely are getting rich on the back of shoddy science whilst denying people like myself a proper diagnosis and the tests and treatments which could possibly make a huge difference to our lives . rant over ...........:zippit:
    rosie26, Min, Valentijn and 4 others like this.
  11. wdb

    wdb Admin

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    I would have liked to see 'both psychological and physical' split into two categories as there is a huge difference between those who believe the psychological components are a result of living with a long term debilitating illness and those who believe the physical components are a manifestation of a psychological illness.

  12. user9876

    user9876 Senior Member

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    I particularly liked the way they described themselves as independent raters as if they don't have a view and haven't been involved in the chosen british medical websites and press releases for their work.

    I thought it was more normal to develop a coding scheme in a textual analysis so that you describe the articles.

    Still another independant person completely unconnected with any press coverage and who never makes public statements and is also an expert in such analysis reviewed the paper so it must be ok
  13. user9876

    user9876 Senior Member

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    They can't separate these things out because White et al refuse to clearly state their hypothesis so they talk of a psychological component which makes no sense unless you present a model and explain the role of the component.
    Svenja, peggy-sue, Valentijn and 3 others like this.
  14. taniaaust1

    taniaaust1 Senior Member

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    I too wonder how someone like Dr Peter White can get away with saying he's "independent" and make it sound he hasnt a side when all of us know exactly which side of things he's always pushed. All these psych people try to mislead other doctors and the public whenever possible.


    Doh..so he needed to do a study to show this?? Tell us something that everyone dont already know. When will study funding stop being wasted on the obvious. I think he just wanted to see his name on yet another journal article so he can say he's up with research. He's one of the CFS experts hahaha
    peggy-sue, Valentijn and ukxmrv like this.
  15. Esther12

    Esther12 Senior Member

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    White seems so much more reasonable than patient organisations.

    Seeing as three of the four examples of the views of patient organisations come from 'The One Click Group', that must be by far the largest patient organisation. That so many patients seem to support them just shows how angry, militant and unreasonable CFS patients are We cannot trust them when they claim that there are problems with the way CFS is treated.

    I'm glad that they had Wessely review this paper, in order to ensure that only balanced and reasonable pieces of work enter in to the literature. Hopefully this article will go on to be widely cited - or at least, used repeatedly by White to help make it clear that his own beliefs are 'evidence based'.

    When he cites his own work with references 20 and 23, we can be confident that they prove his point.

    peggy-sue, wdb and Valentijn like this.
  16. Firestormm

    Firestormm Senior Member

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    Who were all the patient groups Esther? I haven't obviously read this paper. When was it published? Am sure I've come across this one before. And if 'one-click' were one of those featured I am disgusted. Talk about deliberate. Hope they chose some more reasoned websites in their other selections.

    Interesting to note that the bio-psychosocial model has had such a poor effect isn't it? Methinks they need to improve the olde sales patter because da message ain't been as effective as they would have liked! Time for a rethink. Time for some rebranding. Time for a relaunch. Must convince the world. Their report card would read: 'Tries hard but simply not good enough.' :)
    barbc56 likes this.
  17. barbc56

    barbc56 Senior Member

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    I don't think a complete division of psychological vs. physical is absolutely necessary. I prefer to think of it as a continuum.

    Both need to be included to treat the "whole patient" for any condition and more so for a chronic condition. Even something like acne if severe enough would contain a psychological component. I have no idea where that example came from :rolleyes: I DON'T AGREE THAT ME/CFS HAS MUCH OF A PSYCHOLOGICAL COMPONENT IF ANY, OTHER THAN A SIDE EFFECT OF ANY CHRONIC ILLNESS and it's too bad I have to keep emphasizing that, but it's important to look at all factors, some of which may be big contributors while others small to almost nil.

    Barb
  18. barbc56

    barbc56 Senior Member

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    Talk about subjective and vague. The above is a prime example.

    Barb
    overtrain likes this.
  19. Purple

    Purple Bundle of purpliness

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    I would word this differently. I don't think any 'psychological component' in the way that most will understand this phrase, is part of ME/CFS. If someone develops any e.g. psychological distress as a result of living with a misunderstood chronic painful illness with little support from society etc., this is NOT part of the said chronic illness - this is a separate issue on top of the original illness that should be addressed separately (but within the context of the chronic illness). E.g. if someone develops depression or anxiety *as a result of* of living with ME/CFS, these are *not* part of ME/CFS. This does not make it *part of* ME/CFS and should not be presented as such.

    I think this is very important for patients to differentiate. And patients need to understand this so as not to mislead others about their illness. If a depression/anxiety etc develops as a result of ME/CFS, then it's not part of ME/CFS. Yes, it's part of the person - the continuum etc - but a separate issue from ME/CFS.
    Svenja, Dolphin, golden and 2 others like this.
  20. barbc56

    barbc56 Senior Member

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    This is what I said or at least I thought. I fought the fog and the fog won? I need to go back and read my post. Yeah, I could have worded it a bit differently, but you get the gist. It's written in Americanize, which may be the problem.;)
    Barb

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