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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
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
 
"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 ?
 
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.
 
Ariel said:
This is disgusting. But it's a familiar tactic of using and co-opting the language of the potential "enemy" and thus neutralising them.
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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.
 
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.
 
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.

rvallee said:
It is being used massively here to promote the conversion disorder.
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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'.
 
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:
Caoimhe McLoughlin*, CCBS, University of Edinburgh and NHS Lothian

Ingrid Hoeritzauer*, CCBS, University of Edinburgh and NHS Lothian

Caitlin Adams (Functional Neurological Disorder Unit, Division of Cognitive Behavioral Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts. Inpatient Psychiatry, Department of Psychiatry, Mass General Brigham Salem Hospital, Salem, Massachusetts)

Selma Aybek, Neurology Department, Psychosomatic Medicine Unit, Inselspital University Hospital, Bern; and Bern University, Bern, Switzerland

Janet Baker (Private Practice, Randwick Specialist Centre, NSW; Adjunct Associate Professor, Flinders University, South Australia.

Harriet A. Ball Population Health Sciences, Bristol Medical School, University of Bristol

Kim D. Bullock Department of Psychiatry and Behavioral Sciences, Stanford School of Medicine, Stanford, California, US

Chrissie Burness, The Walton Centre NHS Foundation Trust, Liverpool, UK

Veronica Cabreira, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK; Neurology department, Centro Hospitalar Universitário de São João, Porto, Portugal


Trudie Chalder Department of Psychological Medicine, Institute of Psychiatry, Psychology and Psychiatry, King’s College London, DeCrespigny Park, SE5 8AF.

Barbara A. Dworetzky, (Dept of Neurology, Brigham and Women’s Hospital, Harvard Medical School, Boston MA, USA)

Sara Finkelstein, Department of Neurology, Massachusetts General Hospital, Harvard Medical School Boston, Massachusetts, USA

Paula Gardiner (Tutor MSc in Psychological Therapy in Primary Care, Dundee University; NeuroSpecialist Physiotherapist, Stirling)

Beatrice Garcin (Department of Neurology, Hospital Avicenne, Sorbonne Paris Nord, Bobigny, France)

Jeannette Gelauff, Department of Neurology, Amsterdam UMC, Vrije Universiteit Amsterdam, de Boelelaan 1117, Amsterdam, Netherlands

Laura H. Goldstein, Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, De Crespigny Park, London SE5 8AF, UK

Cordelia Gray (Specialist Psychotherapist, Neurology Psychotherapy Service, Sheffield Teaching Hospital, Academic Neurology Unit, University of Sheffield, Sheffield, UK)

Anika Jordbru, PhD, Head of Department, Faculty of Humanities, Sport and Educational Science, University of South-Eastern Norway

Eileen M Joyce UCL Queen’s Square Institute of Neurology, Queen’s Square, London, WC1N 3BG, UK

Anne-Catherine Huys,

Aoife Laffan, Department of Neurology, St. James’s Hospital, Dublin, Ireland

Sarah Lidstone, MD PhD, University Health Network and the University of Toronto, Toronto, Canada

Stefanie Linden, PhD, Department of Health, Ethics and Society, Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, The Netherlands

Lea Ludwig, Clinical Psychology and Psychotherapy, Institute of Psychology, Faculty of Psychology and Movement Sciences, Universität Hamburg, 22146 Hamburg, Germany

Julie Maggio, PT, DPT, Board-Certified Neurologic Clinical Specialist, Department of Physical Therapy and Functional Neurological Disorder Unit and Research Program, Department of Neurology, Massachusetts General Hospital, Boston Massachusetts

Elizabeth Mallam, The Rosa Burden Centre, Southmead Hospital, North Bristol NHS Trust, Bristol, UK

Sarah McRae CCBS, University of Edinburgh and NHS Lothian

Francesca Morgante, Neurosciences Research Centre, Molecular and Clinical Sciences Research Institute, St George's, University of London, SW17 0RE, London, UK; Department of Experimental and Clinical Medicine, University of Messina, 98125, Messina, Italy

Rachel Newby

Clare Nicholson; Department of Therapy Services, University College London Hospitals NHS Foundation Trust, National Hospital for Neurology & Neurosurgery, London, United Kingdom

Mary O’Neal (Department of Neurology, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, USA)

Suzanne O‘Sullivan (National Hospital for Neurology and Neurosurgery, Queen Square, London

Isabel Pareés (Movement Disorders Program, Neurology Department, Hospital Ruber Internacional, Madrid, Spain], Movement Disorders Unit, Neurology Department, Hospital Ramón y Cajal, Madrid, Spain),

Panayiota Petrochilos The National hospital for Neurology and Neurosurgery, UCL, Queen Square, Box 19, London, WC1n 3BG

Susannah Pick (Department of Psychological Medicine, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, De Crespigny Park, London SE5 8AF, UK)

Karin Roelofs (Donders Institute for Brain Cognition and Behaviour: Donders Centre for Cognitive Neuroimaging [DCCN], Radboud University Nijmegen, The Netherlands; & Behavioural Science Institute, Radboud University Nijmegen, The Netherlands)

Biba Stanton (Department of Neurology, King’s College Hospital)

Eileen M Joyce (UCL Queen Square Institute of Neurology, Queen Square, London WC1N 3BG, UK

Marina AJ Tijssen. Expertise Center Movement Disorders Groningen, University Medical Center Groningen (UMCG), University of Groningen, Groningen, Netherlands

Margaret Tuttle MD, Massachusetts General Hospital Functional Neurological Disorder Unit, Havard Medical School

Valerie Voon, Professor, Department of Psychiatry, University of Cambridge; Distinguished Professor, Fudan University, Shanghai, China

Laura McWhirter, CCBS, University of Edinburgh
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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.
 
Trish said:
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.
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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? :(
 
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
 
The terms used in these historical descriptions vary – hysteria for example is used as a broad classifier that encompasses heterogenous presentations, some which would be recognisable as FND to a modern reader. This was a diagnosis much more frequently applied to women than men, and some sociologists and scientists have opined that the diagnosis was used as a “patriarchal tool” to silence or ignore complaints of women[18]
We, a group of clinicians and academics who research and treat patients with FND, recognise that many people do feel ignored or dismissed upon receipt of an FND diagnosis. Some perceive that the diagnosis of FND has been used euphemistically to denote an illness that is imagined, or worse, feigned[19]. Labels such as “psychogenic” or “pseudo” may have been used to dismiss or deny the disabling impact of symptoms, and may arguably be used as a reason for inaction from healthcare professionals. That said, when appropriately diagnosed, we do not agree that FND is any longer a tool used to silence women or dismiss their symptoms.
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This paper is such a perversion.

In our experience, clinicians, patients, and caregivers raise the following tropes about FND that can perpetuate stigma: 1) FND represents a missed alternative diagnosis;
To address the first point; although we cannot ignore occasional misuse of the term, FND diagnoses when made appropriately are stable, reliable, and unlikely to represent a missed alternative diagnosis.
This is an important point to highlight because despite a waxing and waning interest by clinicians and researchers, the clinical presentation of FND does not seem to have changed.
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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.
 
It has been shown that costs per admission for FND are increasing at a higher rate than that of other neurological disorders, with iatrogenic harm and inappropriate investigations likely inflating costs[16].
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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.

Nothing I accept about myself can be used against me to diminish me. ― Audre Lorde, Sister Outsider
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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.
 
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