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Recursive Debility: Symptoms, Patient Activism, and the Incomplete Medicalization of ME/CFS, 2022, Lim Rogers

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Andy, Mar 11, 2022.

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  1. Andy

    Andy Committee Member

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    Abstract

    This article examines the contestation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Lacking consistent diagnostic definitions, agreed-on biological indicators, or approved treatments, ME/CFS is an incompletely medicalized condition. It is defined by intractable and debilitating exhaustion after any form of exertion. Through an ethnographic exploration of an American ME/CFS patient activist group, I develop the concept of “recursive debility.” Symptoms form the very basis for disease activist groupings in the absence of biomarkers, but they also present a significant barrier to traditional forms of activism. Ironically, then, debilitation blocks the means through which debilitation might end. Patients contest systems of knowledge but always in bodies that experience exhaustion without end. This article presents a disability studies intervention in suggesting that the recursivity of debility demonstrates the profound interdependence of the bodily aspects of impairment and the sociopolitical aspects of disability. [ME/CFS, chronic illness, medicalization, symptoms, debility]

    Paywall, https://anthrosource.onlinelibrary.wiley.com/doi/10.1111/maq.12701
     
    Andy, Mar 11, 2022
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  2. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

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    Shame that Sci Hub isn’t doing recent articles any more. Is there a control group in the shape of a group of patients who are also under threat from a group of vested medical interests, but whose disability doesn’t prevent activism, and who therefore regularly win battles over funding and public health policy? A comparator would make the notion of recursive debility rather more compelling.

    But it’s still a good question to ask, and from the abstract at least, looks to be on the side of the angels, and is perhaps unfairly categorised with BPS research. It looks more like social science predicated on anti-BPS premises.
     
    Shadrach Loom, Mar 11, 2022
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  3. Trish

    Trish Moderator Staff Member

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    Is this saying that ME/CFS gets less research funding and disease recognition because we are all too sick to fight for better recognition and funding?
     
    Trish, Mar 11, 2022
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  4. Kitty

    Kitty Senior Member (Voting Rights)

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    Possibly?

    I find this a really odd idea. It seems to suggest that all you need to do in order to get answers to intractable biomedical problems is shout loud enough.

    I'm not sure I accept that ME patients have significant problems in engaging in patient activism. Even severely ill people have made major contributions over the years, and effective activism isn't always about going on marches and waving placards. We've been up against a particularly influential set of vested interests, true, but we've probably fought as vigorously as any illness community of a similar size.
     
    Last edited by a moderator: Mar 12, 2022
    Kitty, Mar 11, 2022
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  5. Trish

    Trish Moderator Staff Member

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    To clarify, I was just trying to wade my way through the jargon to find some meaning.
    I don't actually agree. As you say, it shouldn't be about who can shout loudest, and we have some really good advocates.

    What we struggle with is people who deliberately put barriers in the way recognition that ME is not psychosomatic, and deliberately limit research funding.
     
    Trish, Mar 11, 2022
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  6. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Patient activism has been hobbled for the past thirty years because we are not able to fight for recognition. What some patients have managed to achieve is wonderful and incredible considering much of it has been done while bed ridden.

    I can't be the only person to go to sign a petition or send a form letter to my MP but be defeated by illness. Most illnesses do not need patients to be advocates but that is a different position. Let's face it, despite heroic things being done we have not managed to get mainstream medicine in the UK to have a clue about how ME actually affects us!

    Our level of ill health has meant that the charities were never forceful but after ME became CFS the ones who were most likely to be active in local charities were the ones least likely to have ME. The widening of the definitions should have been fought tooth and nail but instead the biopsych school were given decades to become entrenched in the establishment so even with a NICE guideline that is good (even if not great) there is not the change we need.

    Compare that with AIDS where patients could protest and get healthy people to fight with them to demand research money and fight the stigma.
     
    Mithriel, Mar 11, 2022
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  7. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Snow Leopard, Mar 12, 2022
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  8. Hutan

    Hutan Moderator Staff Member

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    I'd argue that it's the stigma of the disease that has been the biggest hurdle to activism, not the debility.

    Think about people like Michael J Fox for Parkinsons. He had symptoms that made it harder for him to advocate. But with ME/CFS, high profile people with the disease often don't want to admit to having it, or are given some other name for their illness. People are initially confused and somewhat embarrassed, when the doctors they see are suggesting the illness can be fixed by thinking positively, and that it's really not that much of a big deal, that it's just a matter of being over-sensitive to every day sensations. Parents don't want to shout from the rooftops when the psychologist says their child has conversion disorder - even with no history of mental health issues in the family, tackling that can feel like inviting criticism.

    We often lose the networks we had. Yes, our lack of energy to engage is part of it. But, I think a big part of it is, in our embarrassment, and our shame that we couldn't keep up with our responsibilities, we stopped talking to people. And some people wrote us off as having some lazy person's mental illness.

    By the time we've emerged from the initial haze of 'what the hell has happened?' and have learned enough about the politics and the disease to usefully advocate, it's harder to re-establish the connections - and, even if we reach out and try, there's still that stigma to deal with. If ME/CFS can be fixed by getting off the sofa and not ruminating so much, then why is there a need for money to be spent on biomedical research?

    And in our desperation, some of us latch onto weird ideas and try to promote them, and so we add to the stigma that surrounds ME/CFS.

    I think, if no one was suggesting ME/CFS is a psychosomatic condition, our disability would not be a major hurdle in advocating. For a start, we'd have a whole lot more healthy allies advocating with and for us.
     
    Hutan, Mar 12, 2022
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  9. Sean

    Sean Moderator Staff Member

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    Sean, Mar 12, 2022
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  10. Hutan

    Hutan Moderator Staff Member

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    It's a bit hard to know from the abstract, but, having looked at one of the links Snow Leopard provided, Emily probably does deal with things comprehensively, including exploring the issue of stigma.
     
    Last edited: Mar 12, 2022
    Hutan, Mar 12, 2022
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  11. Mithriel

    Mithriel Senior Member (Voting Rights)

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    It would be easier to get people onside too. The characterization of us as unhinged terrorists striking fear into the hearts of hero researchers whose only crime was trying to help us made it very difficult to admit to having ME.

    Things have improved since then. People fund raise for those who are unable to do it for themselves. No one I know with MS has to be their own doctor either.

    The sickness role they talk about means that outsiders have compassion, patients are supported and their debility is taken as a sign they need more help rather than seen as a moral failing. We have lost out both ways. No one has been willing to champion us but we are too sick to change the narrative on our own.

    Of course, there has been notable exceptions among patients, lay people and researchers and it is thanks to them we have gotten this far. I will be eternally grateful for this as it lessens the fears I have for my children and grandchildren.
     
    Mithriel, Mar 12, 2022
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  12. cfsandmore

    cfsandmore Senior Member (Voting Rights)

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    cfsandmore, Mar 12, 2022
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