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Functional Neurological Disorder is a Feminist Issue 2023, McLoughlin, Chalder et al

Discussion in 'Other psychosomatic news and research' started by Sly Saint, Mar 23, 2023.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Abstract
    Functional Neurological Disorder (FND) is a common and disabling disorder, often misunderstood by clinicians. Though viewed sceptically by some, FND is a diagnosis that can be made accurately, based on positive clinical signs, with clinical features that have remained stable for over 100 years. Despite some progress in the last decade, people with FND continue to suffer subtle and overt forms of discrimination by clinicians, researchers and the public. There is abundant evidence that disorders perceived as primarily affecting women are neglected in healthcare and medical research, and the course of FND mirrors this neglect. We outline the reasons why FND is a feminist issue, incorporating historical and contemporary clinical, research and social perspectives. We call for parity for FND in medical education, research, and clinical service development; so that people affected by FND can receive the care they need.

    https://kclpure.kcl.ac.uk/portal/en...ue(0f8eec4a-af62-4982-9c5d-eeb8d496e714).html
     
    Laurie P, MSEsperanza, Hutan and 2 others like this.
  2. CRG

    CRG Senior Member (Voting Rights)

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    "Following centuries of neglect, gender and sex discrimination in healthcare now receives more widespread attention; but despite improved awareness, inequality remains common in biomedical settings. Research funding is disproportionately directed towards the investigation of diseases that primarily affect men at the expense of those that affect women[1, 2]. Clinically, gender bias affects the management of medical complaints such as dizziness, pain, or fatigue, with women less likely to receive appropriate diagnostics, treatment or follow up[3, 4]. The mortality rate in cardiovascular disease is much higher in women than men, but diagnostic criteria and treatment thresholds generally don’t take account of sex or gender[5]. Female participants have historically been under-represented in clinical studies, and were essentially excluded from clinical trials up until the nineties [6, 7]. These inequalities are not unique to the scientific realm. Women suffer disproportionately from the health effects of violence, poverty, and social exclusion – this is a global problem.

    The impact of implicit biases on the basis of sex and gender can be seen in the lack of recognition of marginalised, stereotypically ‘female’ medical disorders such as Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Anorexia Nervosa and Migraine[2]. We argue that Functional Neurological Disorder (FND) is similarly marginalised."

    Authors are an impressive list of 'professional' women but not a single patient - reminiscent of the kind of position that has been criticised as White feminism . Are the authors actually concerned with the welfare of women as patients - or women as grant recipients ?
     
  3. Arvo

    Arvo Senior Member (Voting Rights)

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    I'm not going to read this today, and I'm not well-versed in FND or its background, but if it's the rewrapping of conversion disorder then this is absolutely grotesque.
     
  4. Trish

    Trish Moderator Staff Member

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    Chalder pleading the case for more research on ME/CFS etc is a very sick joke. I'm lost for words.
     
  5. CRG

    CRG Senior Member (Voting Rights)

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    Just an encouragement to anyone who felt able and 'qualified' but this monstrosity really demands a feminist/patient response, perhaps as a guest post on Trial By Error if the good offices of @dave30th were to assist/support ?
     
  6. Ariel

    Ariel Senior Member (Voting Rights)

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    This is disgusting. But it's a familiar tactic of using and co-opting the language of the potential "enemy" and thus neutralising them.
     
  7. rvallee

    rvallee Senior Member (Voting Rights)

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    Ironically, yes. But this is like Aunt Lydia (The Handmaid's tale) writing about how handmaids are a feminist issue. Yes, they would be, but this is the perspective of the perpetrator, not the victim. Which makes this extremely creepy and just hits all the damn banality of evil buttons.

    This is what I mean by us having to entirely bypass the healthcare system and do all the work. There is nothing to work with here, these people are completely lost gazing at their own navel and take responsibility for nothing. It's all kabuki theater and we're their props.
     
    Mithriel, JoanneS, obeat and 10 others like this.
  8. CRG

    CRG Senior Member (Voting Rights)

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    Agree although in this case I would use the term 'colonising' rather than 'co-option' - it's a total claim, there is no enemy because there is no place in which an enemy can have legitimate identity. The authorial 'feminists' are (in their terms) speaking for all women and any disagreement can be axiomatically dismissed as anti woman. I'm not sure that this is a consciously Machiavellian colonisation - in some ways that would be less worse than my sense that this staking of claim is borne entirely out of entitlement, they really believe that they are carrying the feminist flag as appointed by fate.
     
  9. rvallee

    rvallee Senior Member (Voting Rights)

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    Astroturfing also applies. It's a term that contrasts grassroots efforts, like the ME community, to attain justice. Astroturf is the fake grass they use in some sports.

    It is being used massively here to promote the conversion disorder. RecoveryNorway is a good example of astroturfing, they claim to represent patients, and yet the entire patient community is against them. As is this transparent attempt.

    It's using the same playbook as the tobacco and oil industries, co-opting disorganized mass movements simply by being able to out-resource us easily. All it takes is basically a few dozen people and they can pretend to speak for an entire population while explicitly acting against their interests.

    Recent attempts with the conversion disorder have been to claim to advocate for the patients, it's clearly the current strategy. They know fully that the patients reject this ideology, it is heavily documented in their own literature.

    But here the power imbalance is so total, it's basically like some powerful aristocrats who take the mantle of populists while being the most devious players behind the scenes.

    This really teaches a lot about human nature. It doesn't even take the threat of harm or death from an authoritarian government for the banality of evil to manifest itself. All it takes is a permissive environment that is ignorant and indifferent to the outcomes it creates.

    I assume we will be seeing more of this. It's clear that ethics have essentially disappeared, lack of consent is basically just a challenge to get to yes now.
     
  10. Sid

    Sid Senior Member (Voting Rights)

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    This is truly despicable. I’m actually speechless.
     
  11. Hutan

    Hutan Moderator Staff Member

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    Wow. To have Chalder, who has probably done as much as nearly anyone to reduce the level of credibility women have when presenting to their doctors, telling the world about feminism in health care is truly monstrous.

    Yes, I saw a comment by someone in social media lately promoting FND as a disorder where sufferers face unfair discrimination, 'just like Long Covid'. There is evidence of a concerted campaign to promote the idea 'if you are against FND, you are against women, against people from difficult backgrounds, against people who suffer from discrimination'.
     
  12. Hutan

    Hutan Moderator Staff Member

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    Caoimhe McLoughlin, Ingrid Hoeritzauer, Caitlin Adams, Selma Aybek, Janet Baker, Harriet A. Ball, Kim D Bullock, Chrissie Burness, Veronica Cabreira, Trudie Chalder, Barbara A. Dworetzky, Sara Finkelstein, Paula Gardiner, Beatrice Garcin, Jeannette Gelauff, Laura Goldstein, Cordelia Gray , Anika Jordbru, Eileen M. Joyce, Anne-Catherine Huys Aoife Laffan, Sarah Lidstone, Stefanie Linden, Lea Ludwig, Julie Maggio, Elizabeth Mallam, Sarah McRae, Francesca Morgante, Rachel Newby , Clare Nicholson, Mary O’Neal, Suzanne O'Sullivan, Isabel Pareés, Panayiota Petrochilos, Susannah Pick, Karin Roelofs, Biba R. Stanton, Eileen M. Joyce, Marina AJ Tijssen, Margaret Tuttle, Valerie Voon, Laura McWhirter

    Full list of authors. Suzanne O'Sullivan has been prominent in writing and talking about the BPS view of CFS.

    Edit to add version with affiliations:
     
    Last edited: Mar 24, 2023
  13. Trish

    Trish Moderator Staff Member

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    I assume the signatories are CBT therapists treating things like ME/CFS, FND, MUS etc. and probably some of their students and anyone else they can persuade that this is a feminist issue. It saddens me as a feminist that so many presumably intelligent and caring women are being drawn into this travesty, probably mostly completely unaware of the harm the very therapy they practice and support harms so many women.
     
    Mithriel, obeat, bobbler and 16 others like this.
  14. Ariel

    Ariel Senior Member (Voting Rights)

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    I was just thinking this, and realizing that most of the students of this sort of thing are women so the article really plays to that. Truly gross. What can be done? :(
     
    Mithriel, obeat, bobbler and 8 others like this.
  15. Charles B.

    Charles B. Senior Member (Voting Rights)

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    McWhirter is an Alan Carson underling if I recall correctly. I believe her area of interest is the pseudoscientific realm of “functional cognitive disorder.” If it’s not dementia, it must be psychogenic. This is like a religious cult. I think it must give a lot of these folks a sense of immense purpose
     
  16. Hutan

    Hutan Moderator Staff Member

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    This paper is such a perversion.

    FND diagnoses are stable partly because, even when the person is later conclusively found to be suffering from some catastrophic neurological or endocrinological disease, the people who initially diagnosed them with FND continue to claim that there is a 'functional overlay'. I can think of at least two published case studies where this has been the case and surely many more must just be quietly swept under the carpet. Another reason is because people given this diagnosis will often, sooner or later, stop seeing the medical professional that gave them that diagnosis, seeking more useful care elsewhere. Thus, the FND physician never gets to appreciate how inadequate their diagnosis was.
     
    Mithriel, obeat, bobbler and 14 others like this.
  17. Hutan

    Hutan Moderator Staff Member

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    In one breath they say that people with FND need better care, but they also seem to want to reduce investigations that might identify other causes of the reported symptoms.

    They include this quote in the paper. Which illustrates just how limited their understanding is. Of course things that we think about ourselves can be used to diminish us. Indeed, we can end up diminishing ourselves before anyone else gets the chance if society is set up to encourage that.

    Encouraging people to believe that they would not be ill if they just thought differently is a perfect example of how someone can be diminished by what they accept - some can be diminished to the point of actually no longer being living. Whole diseases affecting millions of people can be so diminished that they are scarcely recognised and desperately under-researched.

    I find the inclusion of quotes from Audre Lorde and Margaret Atwood (We lived in the gaps between the stories. The Handmaid's Tale) incredibly distasteful given the harm that at least some of the authors of the FND paper have inflicted on women, not just their patients, but on the general impression of women. The whole BPS story where people, especially women, are taught to negate their own experience of the world would fit very neatly in an Atwood dystopia. It really is as if a public relations firm has provided advice on how to DARVO, on how to confuse a message.

    The only positive aspect of this paper is that the authors seem to be pleading to be taken seriously, to be accepted by their medical peers - and so perhaps they are not at present. To the authors, I say, learn about good practice in experimental design and find some real evidence for your treatments. If you can do that, then respect will be due.
     
    Last edited: Mar 24, 2023
    Mithriel, obeat, bobbler and 15 others like this.
  18. Sean

    Sean Moderator Staff Member

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    Including on the health and stamina front. Which is a bitter irony.
     
  19. Sean

    Sean Moderator Staff Member

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    This.
     
  20. bobbler

    bobbler Senior Member (Voting Rights)

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    Just like the ME/CFS classic of when people criticise those who are damaging others health and mental health we have certain anti-mental health individuals using the classic point and call the victims anti-mental health.

    You'd think everyone would be wise to such people by now.
     

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