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A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs, 2020, Pilkington et al

Discussion in 'PsychoSocial ME/CFS Research' started by Dolphin, Sep 21, 2020.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    https://www.sciencedirect.com/science/article/abs/pii/S0277953620305888

    Some of these have been involved with annoying papers in the past

    Social Science & Medicine
    Available online 16 September 2020, 113369
    In Press, Journal Pre-proof



     
    Last edited by a moderator: Mar 16, 2021
  2. alktipping

    alktipping Senior Member (Voting Rights)

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    what is with all these no blame frameworks ? . fraudsters in the world of medicine get away with causing immense suffering for their own personal gain and the patients are doubly insulted when said misconduct is eventually brought into focus and then dismissed as if no harm is done .
     
  3. spinoza577

    spinoza577 Senior Member (Voting Rights)

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    I ever thought that this is one of the main clues anyway. You cannot care for people if you handle them like things.

    This indeed sheds light on some carers. - I have worked with old people as well as with handicapped ones, and should know a bit what I am saying. True, things are there often not the best, but most of the carers I had encountered have indeed cared for people, not for things.

    I don´t consider myself for asking much. After all the sentence "explains" quite well why a complex disease is dismissed.
     
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    The main theme over the last few years in MUS/FND/BPS has been over how to manipulate people into accepting their delusional fantasy, how to lie better and more convincingly. They know the patients see through the BS and so put all their efforts into masking the BS. Very Orwellian.

    So obviously in building an ideology that blames patients for their imaginary non-medical illness, they have to sell the idea that they are not doing that, just like they use the ridiculous software-hardware analogy to pretend they don't mean psychogenic when they 100% mean psychogenic.

    Liars lie when you reward their ability to lie. This field has been built entirely on promoting the best liars, the best manipulators, the most skilled at getting false consent as an exercise in box-ticking, knowing full-well they have no true consent.
     
  5. rvallee

    rvallee Senior Member (Voting Rights)

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  6. ladycatlover

    ladycatlover Moderator Staff Member

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    That abstract strikes me as being a way to pull the wool over the eyes of patients and "ordinary" people. Fill it full of words that any normal person won't understand. What on earth is "meta ethnography"? I looked it up and still have no idea of what it is and what its relationship to this study is.

    But of course that is my fault. I'm over 70 so my mind must have gone. I'm stupid because I don't understand the words they use. I really object to stuff like this - if you're publishing a paper in English please use PLAIN English so normal people can at least have a chance of understanding what the hell you're going on about. Grrr.
     
  7. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    File under swallowed-a-dictionary-of-post-modernist-academic-speak gobbledygook.
     
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Merged thread

    A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs

    Abstract

    Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is indicated by prolonged, medically unexplained fatigue (amongst other symptoms), not alleviated by rest, and causing substantial disability. There are limited treatments on offer, which may not be effective and/or acceptable for all people, and treatment views are polarised. We, thus, aimed to take a step back from this debate, to explore more broadly preferences for formal and informal support among people with CFS/ME. We used a meta-ethnography approach to examine the substantial qualitative literature available. Using the process outlined by Noblit and Hare, and guided by patient involvement throughout, 47 studies were analysed. Our synthesis suggested that to understand people with CFS/ME (such as their invisibility, loss of self, and fraught clinical encounters), it was useful to shift focus to a ‘relational goods’ framework. Emotions and tensions encountered in CFS/ME care and support only emerge via ‘sui generis’ real life interactions, influenced by how social networks and health consultations unfold, as well as structures like disability support. This relational paradigm reveals the hidden forces at work producing the specific problems of CFS/ME, and offers a ‘no blame’ framework going forward.

    https://www.sciencedirect.com/science/article/abs/pii/S0277953620305888?via=ihub
     
    Last edited by a moderator: Mar 16, 2021
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    NIHR article
    People with chronic fatigue want to be taken seriously and to receive personalised, empathetic care
    Published on 15 March 2021 doi: 10.3310/alert_45455
    https://evidence.nihr.ac.uk/alert/chronic-fatigue-syndrome-people-want-personalised-empathetic-care/

    eta:
     
    Last edited by a moderator: Mar 16, 2021
  10. Sean

    Sean Senior Member (Voting Rights)

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    Wot? :confused:

    The framework for moving forward is that the people who made the mess need to be removed from the game, and new and competent people brought in to start cleaning up the mess.

    At that point patients and professionals can all sit down and have a long hard constructive merry old chat about the best way to proceed from there.
     
    Last edited: Mar 19, 2021
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    "PWME have been complaining a lot that the treatment is no good and they have turned out to be right which is rather embarrassing so the best thing is to forget all about arguments about quality of evidence and focus on why the patients keep whinging by explaining that it isn't our fault that things have been screwed up."
     
  12. cassava7

    cassava7 Senior Member (Voting Rights)

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    The NIHR article is titled: "People with chronic fatigue want to be taken seriously and to receive personalised, empathetic care"

    The first paragraph reads:
    People with chronic fatigue syndrome (CFS) have extreme tiredness which lasts at least four months. The condition is also known as myalgic encephalomyelitis (ME). Other common symptoms of CFS/ME include headaches and problems with sleep, memory or concentration.
    Surely, the NIHR staff involved in writing this article should have known that the misrepresentation of ME as "chronic fatigue" is a primary reason why people with ME are not taken seriously, and that is distressing for them [1]. As is their definition of the disease, which omits post-exertional malaise as the hallmark feature of ME. One would have expected them to read the diagnostic criteria proposed in the draft NICE guidelines, which they otherwise refer and link to...

    :banghead:

    [1] Johnson ML, Cotler J, Terman JM, Jason LA. Risk factors for suicide in chronic fatigue syndrome [published online ahead of print, 2020 Jun 12]. Death Stud. 2020;1-7. doi:10.1080/07481187.2020.1776789
     
    Last edited: Mar 16, 2021
  13. cassava7

    cassava7 Senior Member (Voting Rights)

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    I sent a mail to the NIHR Evidence contact address.
    --

    Dear Madam or Sir,

    I am writing to you regarding a NIHR Alert article on a study
    on ME/CFS that was published on 15 March ("People with chronic fatigue
    want to be taken seriously and to receive personalised, empathetic
    care") [1].

    I would like to thank the authors for reporting on the
    study by Pilkington et al. [2], which highlights the many aspects in
    which the healthcare of people with ME/CFS is lacking. However,
    there are a number of issues with the article.

    First, the title "People with chronic fatigue want to be
    taken seriously (...)" does not help to achieve this stated aim.

    The misrepresentation of ME/CFS as "chronic fatigue" is a primary reason
    why people with ME/CFS are not taken seriously. As the US National
    Academy of Medicine concluded, the emphasis on chronic fatigue "can
    result in stigmatization and trivialization", in that it fails to
    account for the fact that "ME/CFS is a serious,
    chronic, complex, and multisystem disease that frequently and
    dramatically limits the activities of affected patients", with many
    debilitating symptoms [3]. This emphasis on "chronic fatigue" has also
    been shown to be a risk factor for suicide in people with ME/CFS, the
    rate of which is estimated to be 7-fold greater than that in the general
    population [4, 5].

    The title of the article should be amended to "People with ME/CFS
    (...)", or at the very least, "People with CFS/ME" as used by
    Pilkington et al. [2]

    (Note that NICE has now switched to using the term "ME/CFS" rather than
    "CFS/ME", per the new draft guideline [6], so as to match the
    international terminology in the scientific literature that is used by
    other academic and research bodies -- e.g. in the US, the National
    Institutes of Health, the Centers for Disease Control and Prevention,
    the National Academy of Medicine --).

    Second, the first paragraph of the article defines CFS as "extreme
    tiredness which lasts at least four months". This is repeated under
    the section "What's the issue?": "CFS/ME is a long-term condition that
    causes severe fatigue".

    This definition seems to be derived from that of
    the outdated 2007 NICE guideline for CFS/ME (CG53) [7] but it omits the
    hallmark feature of post-exertional malaise, even though the guideline
    requires it and that it is now adequately set forth in the revised
    definition of the 2020 draft guideline [6] -- which the article refers
    to --. This is in line with the emphasis of modern diagnostic criteria
    for ME/CFS on post-exertional malaise, and not fatigue or "tiredness"
    [3, 8, 9].

    The definition in the article should be amended to emphasize
    post-exertional malaise rather than fatigue or "tiredness", and to match
    that of the draft NICE guideline which requires all four of [6]:

    1. Debilitating fatigability that is not caused by excessive
    cognitive, physical, emotional or social exertion and is not
    significantly relieved by rest

    2. Post-exertional symptom exacerbation after activity that:
    (a) is delayed in onset by hours or days, (b) is
    disproportionate to the activity, (c) has a prolonged recovery
    time lasting hours, days, weeks or longer

    3. Unrefreshing sleep, which may include: (a) feeling
    exhausted, flu-like and stiff on waking, (b) broken or shallow
    sleep, altered sleep pattern or hypersomnia

    4. Cognitive difficulties (sometimes described as ‘brain fog’),
    including problems finding words, temporary dyslexia or
    dyscalculia, slurred speech, slowed responsiveness, short-term
    memory problems, confusion, disorientation and difficulty
    concentrating or multitasking

    I hope these corrections can be made so that, when reading your
    otherwise supportive article, people with ME/CFS do not
    feel that their condition is being trivialized, as has sadly been the
    case too often in the past.

    Sincerely,

    X

    --
    References

    [1]
    https://evidence.nihr.ac.uk/alert/chronic-fatigue-syndrome-people-want-personalised-empathetic-care/

    [2] Pilkington K, Ridge DT, Igwesi-Chidobe CN, et al. A relational
    analysis of an invisible illness: A meta-ethnography of people with
    chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their
    support needs. Soc Sci Med. 2020;265:113369.
    https://doi.org/10.1016/j.socscimed.2020.113369

    [3] Institute of Medicine. 2015. Beyond
    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an
    Illness. Washington, DC: The National Academies Press.
    https://doi.org/10.17226/19012.

    [4] Johnson ML, Cotler J, Terman JM, Jason LA. Risk factors for suicide
    in chronic fatigue syndrome [published online ahead of print, 2020 Jun
    12]. Death Stud. 2020;1-7. https://doi.org/10.1080/07481187.2020.1776789

    [5] Roberts E, Wessely S, Chalder T, Chang CK, Hotopf M. Mortality of
    people with chronic fatigue syndrome: a retrospective cohort study in
    England and Wales from the South London and Maudsley NHS Foundation
    Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive
    Search (CRIS) Register. Lancet. 2016;387(10028):1638-1643.
    https://doi.org/10.1016/S0140-6736(15)01223-4

    [6] https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline

    [7] https://www.nice.org.uk/Guidance/cg53

    [8] Bruce M. Carruthers, Anil Kumar Jain, Kenny L. De Meirleir, Daniel
    L. Peterson, Nancy G. Klimas, A. Martin Lerner, Alison C. Bested,
    Pierre Flor-Henry, Pradip Joshi, A. C. Peter Powles, Jeffrey A. Sherkey
    & Marjorie I. van de Sande (2003) Myalgic Encephalomyelitis/Chronic
    Fatigue Syndrome, Journal of Chronic Fatigue Syndrome, 11:1, 7-115,
    https://doi.org/10.1300/J092v11n01_02

    [9] Carruthers BM, van de Sande MI, De Meirleir KL, et al. Myalgic
    encephalomyelitis: International Consensus Criteria [published
    correction appears in J Intern Med. 2017 Oct;282(4):353]. J Intern Med.
    2011;270(4):327-338. https://doi.org/10.1111/j.1365-2796.2011.02428.x
     
  14. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    @cassava7 thank you for sending this concise and very much to the point response.
     
  15. NelliePledge

    NelliePledge Moderator Staff Member

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  16. Andy

    Andy Committee Member & Outreach

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  17. Dolphin

    Dolphin Senior Member (Voting Rights)

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    The summary could give the impression that the patients had been asked what they wanted from professionals. However my guess is few if any of the papers actually asked that; most were probably general qualitative research studies. Asking patients specifically what they wanted might have yielded different results.
     
  18. Andy

    Andy Committee Member & Outreach

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    Don't know if you received a response @cassava7 but the article has been revised broadly in line with your requests, https://evidence.nihr.ac.uk/alert/cfs-me-people-want-personalised-empathetic-care/
     
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  19. Simbindi

    Simbindi Senior Member (Voting Rights)

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    However, they still write (bolding mine):

     
  20. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Bolding mine.

    Am I being particularly obtuse here?

    If they don't listen in the first place how will they be able to help with the physical symptoms? Especially if they just make knee jerk attributions to the causes of those symptoms.

    If I want a therapist I'll book an appointment to.go.see one. I want my doctor to be my doctor not just bl@@dy sit there with an empathetic look on his face while listens but does naff all to help. Otherwise I might just as well stay home and talk to the dog. An excellent listener - unless he needs to tell me it's dinnertime.
     
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