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Elements of Suffering in [ME/CFS]: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected, 2021, Fennell et al

Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Jun 1, 2021.

  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Full title: Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected

    Abstract
    People who are severely and very severely affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) experience profound suffering. This suffering comes from the myriad of losses these patients experience, the grief that comes from these losses, the ongoing stigma that is often experienced as a person with a poorly understood, controversial chronic illness, and the trauma that can result from how other people and the health care community respond to this illness. This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness. Using a systems approach, this phase framework illustrates the effects of suffering on the patient and can be utilized to help the clinician, patient, family, and caregivers understand and respond to the patient’s experiences. We highlight the constructs of severity, uncertainty, ambiguity, and chronicity and their role in the suffering endured by patients with ME/CFS. A composite case example is used to illustrate the lives of severely and very severely affected patients. Recommendations for health care providers treating patients with ME/CFS are given and underscore the importance of providers understanding the intense suffering that the severely and very severely affected patients experience.

    Open access, https://www.mdpi.com/2227-9032/9/5/553/htm
     
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Congratulations to BPS ideologues, you did this, are still doing this. This paper is more about them than about us, none of this has to be this way, it's a choice made by people with no real stake in the matter. This is how such choices usually go, being indifferent to the outcome of your work is a bad combination when there is zero oversight or even interest.
     
  3. Ariel

    Ariel Senior Member (Voting Rights)

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    I tried to skim-read much of this paper.

    Many overall problems, but putting those aside (huge caveat!), this paper is not specific to severe and v severe ME/CFS so it shouldn't be in the title. This seems important given that it purports to describe the experiences of a particular group of patients often left out of general understanding. Although it defines severe and v severe up top of the paper, they go on to describe something else. I therefore did not spend a lot of time going through the finer points and problematic overall framework.

    The composite case example they are using for illustration is not particularly severe/very severe, except perhaps at onset. If it were about severe and very severe ME/CFS, it would help to give more time to the truly disabling effect of sensory sensitivities, for example - and also use this as an example of a barrier of access to life activities and healthcare.

    At some points during this composite story "Elizabeth" seems fairly mildly affected. At one point she has "coworkers", indicating she is able to work. She has a very high functioning level at this point that would be irrelevant to severely affected patients. The composite example just changes the situation of "Elizabeth" depending on the point the authors wish to make/"illustrate", and all of these points could be made about chronic illness more generally; in that case it should not be labelled as being specifically relevant to ME/CFS at all, never mind to severe/very severe cases. All chronic illness carries stigma.

    Many of the descriptions more relevant to ME/CFS are fairly patronizing. It's unclear what we are supposed to learn from this "composite" story. The more it shifts, the less relevance it has and the more dangerous it seems as a narrative device. What are we to learn from "composite" stories pieced together this way? The authors should write their points up in a straightforward way. Case studies and anecdotes would be better than this! That would involve more engagement with particular patients' lives, however.

    TL;DR: Why can "Elizabeth" do things that by the authors' own stated definitions of what their paper is about, she cannot do? ...One wonders what the paper is about.
     
  4. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    There still seems to be too much focus on the psychological aspects (phase 4 "integration" is particularly problematic), and too little focus on the fact that the person may be suffering because many human needs are no longer able to be met due to illness. Some of these needs may be able to be solved through increased financial support, or other assistance (cleaners etc) but many of the other needs are still severely effected.

    I also agree the composite "Elisabeth" is a poor example of severe case. Severe cases are unable to work at all!
     
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  5. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Moderate cases often can't work either. I tried working a couple of times but I could only manage a few days before I was in bed for a few days and I doubt I was unusual. There was no rhythm to it either so working Monday to Wednesday then resting would not have worked.

    I managed university because I could work at home and lie down every few hours. Once I had kids I managed to do quite a lot because of continual rests and my mother coming to help when I was unable to do anything. At that point I did not know I had ME but I was still fit and able to do a lot but now I see where I rested a lot as well.
     
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  6. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Academic Editors: Kenneth J. Friedman, Lucinda Bateman and Kenny Leo De Meirleir

    It just defies my understanding.

    It's like they've never met a person with ME. My experience is not reflected in this precious compilation.

    If ME was represented metaphorically by a human body this description is an homunculus.
    It's full of exaggerated tropes like they were writing a drama not a documentary.
     
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  7. Perrier

    Perrier Senior Member (Voting Rights)

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    Well, this was written by a health management individual and two psychologists. So, I am not really surprised by this item at all. And it seems to be directed at physicians--i.e how to treat the patient. Actually, the piece that Whitney Dafoe wrote is much better in every way.
     
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  8. rvallee

    rvallee Senior Member (Voting Rights)

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    It's become impossible to ignore the fact that clearly people who don't experience this illness simply do not have the mental capacity to imagine it, it's too removed from normal experience and too difficult to grasp and too many people who should have understood it by now have shown huge gaps in their understanding.

    That should mean something and impact how things move forward but unfortunately medicine works exactly the other way around. This needs an entire paradigm shift in how medicine works, precisely the kind of shift that has been delayed by the obsession over psychosomatics.
     
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  9. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    FFS with the art therapy & journaling!

    Losing your job, at risk of losing your home, significant relationships & life as you know it mainly because of a decades long smear campaign by the very people who were supposed to help you and in order to help turn that all around they suggest art therapy and a diary.

    What colour is the sky on your planet?
     
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  10. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    They even have Larun in the references:

    Larun, L.; Malterud, K. Identity and coping experiences in Chronic Fatigue Syndrome: A synthesis of qualitative studies. Patient Educ. Couns. 2007, 69, 20–28. [Google Scholar] [CrossRef]

    For anyone who has the capacity, I wonder if this article merits a very blunt response letter.
     
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  11. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    1) Definitions need checking. Their definition of severe and very severe (as described in Elizabeth’s life throughout the piece) is what we’d tend to call mild-moderate here. She is severe in PEM but only moderate on average and even mild in many ways. Remember: to be mildly affected with ME/CFS you need to have lost at least 50% of your function.

    2) I recognise a number of experiences described here. But I also see a sort of scattergun of descriptions that remind me of reading a horoscope. The danger here is that, by describing multiple very different people in parallel as a single entity, someone who is not affected by ME/CFS can read almost anything into it and take whatever they like out of it. But this criticism is really dependant on what this is for.

    3) Is the four-stage model something they are taking from somewhere else and applying to ME/CFS? The idea of forming new ways of looking at chronic illness so that we’re not stuck in a badly fitting model for acute illness is a good one. The basics I can see of the four stage model might be a good draft. It makes sense in a context where it would be applied to any chronic illness.
    But again the question is what is it for?
     
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  12. cfsandmore

    cfsandmore Established Member (Voting Rights)

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    Patricia Fennell used to write articles for the CFIDS Chronicle. Her "The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life" is poor at best. I think her workbooks are used at the Bateman Horne Center.

    edit: spelling
     

    Attached Files:

  13. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    All I get is an image of the cover page, no document.
     
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  14. cfsandmore

    cfsandmore Established Member (Voting Rights)

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    If I upload the full book, I will be breaking the copywrite.

    She uses a four step system, 1-Crisis 2-Stabilization 3-Resolution 4-Integration. It's a roadmap to PEM. Severe and very severe people with ME could not perform the tasks in her workbook. As a patient with moderate ME, I don't have the energy to compete the tasks. It's as if she has no clue that mental and emotional exertion causes PEM.

    BHC has a series of BPS videos on Youtube, "The Psychology of Chronic Illness".
     
  15. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Good point. My brain just blew right past that thought. That and a personal attitude of wanting these sorts of things exposed to the light of scrutiny that might have helped my brain over-look the point.
     
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