Long COVID – Can we deny a diagnosis without denying a person’s reality?, 2024, Little et al.

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Yann04, Jun 25, 2024 at 5:46 PM.

  1. Yann04

    Yann04 Senior Member (Voting Rights)

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    Link (Paywall): https://doi.org/10.1177/10398562231222809

    Abstract
    Objective

    The aim is to consider Long COVID not as a new clinical entity but as another example of a disabling, historical phenomenon.
    Conclusions
    A triad of polymorphic symptomatology, an elusive pathophysiological explanation and a hostile defensiveness has appeared throughout history. The reluctance to consider these contextually may delay early intervention and appropriate patient care.
     
  2. Yann04

    Yann04 Senior Member (Voting Rights)

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    Thought this was worth sharing as it blows BPS subtleness out of the water. Directly compares ME/CFS and Long Covid to “hysteria”.

    upload_2024-6-25_18-48-23.png

    Lots of Sharpes and Wessleys in the references as expected.
     
    Last edited: Jun 25, 2024 at 5:57 PM
  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Oh, for sure, this hasn't been considered so far. Definitely a true statement about actual reality. It's impossible to take seriously the possibility that they don't know that this is complete BS, but Mr Magoo level of "uh? where am I right now? who are you? and who am I?" is just standard psychosomatic ideology.

    The overlapping characteristics are impressively inept to the point of being comical. Literally two of those are entirely medicine's responsibility. The rest is basically ridiculous.

    But all in all, this is the exact same as the standard biopsychosocial nonsense, it just drops all the fake pretense and dog whistles and says out loud what everyone is itching to say in private, but know they can't admit in public because it has zero basis in fact or evidence.
     
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  4. Eleanor

    Eleanor Senior Member (Voting Rights)

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    happy unhappiness

    upward downwardness

    daytime night-timeness

    words, what even are they?
     
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  5. Yann04

    Yann04 Senior Member (Voting Rights)

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    upload_2024-6-25_20-11-29.png

    Another segment from the study.

    Note how they admit FND and MUS are a euphamism for hysteria.
     
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  6. Hutan

    Hutan Moderator Staff Member

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    I sincerely thought that that was referring to the hysteria promoters, until I got to the second post.

    Yes. And clearly they do say it in public. This is in Australasian Psychiatry, the journal of The Royal Australian and New Zealand College of Psychiatrists. And the three authors have no trouble at all in noting that their employer is Te Whatu Ora Health New Zealand. That isn't some obscure psychosomatic think tank, that's the entity that delivers public health care services in New Zealand.

    "Defensiveness"!!! I wonder how these people would feel if their lives were suddenly turned upside down and people sitting comfortably on the sidelines, in fact the people controlling access to support, were saying 'oh, it's just a bit of hysteria, it happens a lot with you women'.

    John Little
    Matthew Higgins
    Radhika Palepu
     
    Last edited: Jun 25, 2024 at 9:41 PM
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  7. JemPD

    JemPD Senior Member (Voting Rights)

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    a precise summing up of the entire argument.

    They are so pretentious... "female preponderance"

    :emoji_rolling_eyes:
     
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  8. Hutan

    Hutan Moderator Staff Member

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    I think we need to know who these people are.

    John Little was previously with the "University of Melbourne and Monash University, and formerly Director of ECT, Grampians Psychiatric Services, Ballarat, Vic., Australia". Among his publications then was
    Building an ECT [Electroconvulsive Therapy] Service: An Outcomes-Equivalent Approach

    Now he seems to be employed by the NZ Ministry of Health, with another recent paper
    Disillusionment amongst clinical staff experiencing repeated change, June 2024
    also with Matthew Higgins and Radhika Palepu.

     
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  9. Hutan

    Hutan Moderator Staff Member

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    Matthew Higgins
    Studied medicine at the University of Leicester, UK until June 2015
    Did 3 months with the Department of Psychiatry at Morriston, United Kingdom
    Then it seems that he moved to New Zealand, where he has worked since 2016 as a psychiatrist in Wellington and Rotorua.

    Radhika Palepu
    Mental Health, Addiction and Intellectual Disability Service (MHAIDS), Te Whatu Ora Health New ZealandI, Wellington, New Zealand
    She seems to be a rising star in NZ psychiatry, just completing her psychiatry training and winning awards.

    I'm really concerned by this paper, it's very close to home. That it appeared in the RANZCP journal means that a whole lot of people are on board with its message. It's a nasty reminder that when I am open about having ME/CFS, lots of people are passing judgement on me.

    Sorry, added the last two paragraphs.
     
    Last edited: Jun 25, 2024 at 8:39 PM
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  10. Yann04

    Yann04 Senior Member (Voting Rights)

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    More extracts:
    upload_2024-6-25_22-12-12.png

    Sorry the extracts are random, I’m just finding them on twitter, don’t have access myself.
     
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  11. Nightsong

    Nightsong Senior Member (Voting Rights)

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    I've read it all. It is quite unpleasant, but not blatantly so: rather, it drips its bile through insinuation. A "curious disregard for hysteria". The presentation of the Royal Free and Tapanui incidents as epidemic hysteria, along with examples of supposed historical incidents of social contagion.

    The authors take a Wessely-esque approach to using unpleasant quotes from historical publications: for instance, this quote from a 1977 Weintraub paper:
    Fantasies! Also:
    "Without a scientific component"? And another little flash of misdirected insight:
    The fact that they regard MUS and FND as a retreat is very telling indeed.
     
    Last edited: Jun 25, 2024 at 9:33 PM
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  12. forestglip

    forestglip Senior Member (Voting Rights)

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    From ME/GPT AI:

    Multiple Sclerosis (MS)

    Systemic Lupus Erythematosus (SLE or Lupus)


    Celiac Disease


    Hashimoto’s Thyroiditis

    Endometriosis

    Migraine


    Honorable mentions because they satisfy all but female preponderance criteria (before treatments and tests were developed):

    Peptic Ulcers, Lyme Disease, Sarcoidosis
     
    Last edited: Jun 26, 2024 at 1:31 AM
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  13. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    I think this style of affiliation listing is confusing and unhelpful. Since the health restructuring in NZ from separate district health boards to one entity, many authors are styling their affiliations as "Te Whatu Ora Health New Zealand" rather than their individual hospitals. I don't do this and list the name of my hospital as it has and will outlast political fashions and I think it leads to confusion for readers, esp. those overseas.

    A 2020 article by Little lists his affiliation as "Kapiti Community Mental Health Team, New Zealand".

    Or more recently: "Mental Health, Addiction and Intellectual Disability Service (MHAIDS), Te Whatu Ora Health New Zealand, Wellington, New Zealand"
     
    Last edited: Jun 26, 2024 at 1:37 AM
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  14. Hutan

    Hutan Moderator Staff Member

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    Good point SNT. Sorry, I contributed to the confusion. I've amended my post above.

    Te Whatu Ora Health New Zealand is the entity delivering public health care services; it's not the Ministry of Health. So these people are more likely to be clinicians than policy makers.

     
  15. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

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    I have accessed the full text which starts with this quote

    "... two societies confronting each other with conflicting universes will both develop conceptual machinery to maintain their respective universes’.1

    The 2019, SARS-CoV-2 pandemic was associated with significant mortality. Long COVID appeared as a term to describe a range of polymorphic

    symptoms persisting 3 months or more following the initial infection and has been associated with significant clinical, social and economic consequences.2 Common experiences include fatigue, headache, anxiety, in- attention (‘brain fog’), myalgia, breathlessness, dizziness, postural orthostatic tachycardia syndrome (POTS) and gastrointestinal disturbance. It is more common in fe- males and is associated with significant morbidity. The exact mechanism behind this ongoing persistence re- mains unclear and no test is pathognomonic. Putative causes include chronic inflammation, an aberrant im- mune response and viral particle persistence.2 Manage- ment is supportive and includes symptom-based pharmacology, psychotherapy, physiotherapy and oc- cupational therapy. Prognosis is guarded. However, a number of unsettling observations have appeared.

    In Long COVID, there is both a persistence and a vari- ability to the reported 203 possible symptoms. Symptoms may occur without a preceding positive test or in the presence of a negative test, and there is only a weak as- sociation between the severity of acute COVID-19 and the onset of Long COVID.2 Possible explanations include differing testing policies between countries, testing too early or too late in the disease course and an inconsistent or aberrant immune response.2 However, an older

    narrative may exist, with Long COVID having similarities to a number of named, historical disorders.

    In 1983, a seemingly new illness appeared in the small New Zealand town of Tapanui.3 Subsequently named chronic fatigue syndrome (CFS), symptoms of Tapanui Flu included fatigue, headache, anxiety, inattention, myalgia, breathlessness, dizziness and other subjective complaints that were difficult to substantiate objectively. No test was pathognomonic. The pathophysiology of CFS remained elusive despite continued inquiry including by inves- tigators whose lives had been significantly touched by the condition. CFS is more common amongst females, prognosis is guarded and treatment remains primarily supportive but now includes a more articulate inter- disciplinary support network, perhaps developed in re- sponse to a sceptical audience.

    Even earlier, a similar unexplained epidemic occurred amongst the staff at London’s Royal Free Hospital.4 Symptoms included fatigue, headache, anxiety, in- attention, myalgia and breathlessness. No pathological basis was found and no test pathognomonic. There was again a female preponderance and whilst proving rela- tively benign, some patients were affected for up to a year. A Lancet article entitled ‘A New Clinical Entity’ followed and suggested ‘benign myalgic encephalomyelitis (ME)’ as the diagnosis. However, there was an unexpected
    comment at the end of the article – ‘... we believe that its characteristics are now sufficiently clear to differentiate it from poliomyelitis, epidemic myalgia, glandular fever... and need it be said, hysteria’. McEvedy and Beard were perplexed, as the case for hysteria had not been examined and they had noted the overlapping symptoms between those reported and those they had encountered in a pre- vious epidemic of hyperventilation in 154 school children.5

    The curious disregard for hysteria

    ‘At first glance it is extremely difficult for [anyone] to grasp how such physical symptoms... may in fact be an extension of ideas or fantasies. If the mysterious leap from the mind to the body is ever to be understood, then what is needed is an attentive and understanding approach to the entire patient’.6

    It is a curious phenomenon that, every now and then, a clinical entity appears seemingly for the first time. It is given a new name, yet its signature remains identifiable – a triad of polymorphic symptomatology, an elusive pathophysiological explanation and often a dispropor- tionate defensiveness to suggestions that there may be psychological contributions.7,8 Hysteria has become pe- jorative, rather than an extraordinary attribute of an at- tuned human response. Acknowledging a female preponderance may be seen as sexist despite the obser- vation that unexplained illnesses may be associated with trauma and a unique set of societal pressures that women more often endure. Associated features of new un- explained entities include the presence of a triggering threat, re-naming of old symptoms and a personal in- vestment on the part of the investigators attempting to establish scientific legitimacy.

    That a psychological process may have a somatic effect has been long documented in both the clinical and non- clinical fields. In a review of epidemic hysteria that dated back to 1374, threats have included environmental fac- tors (contaminated water, chemical exposure and gas leaks) as well as conflict that was both high and in- escapable.8 In 1859, Briquet speculated on untoward development and life experiences including parental mistreatment and spousal abuse and described his first series in men.9 In the workplace, stress related to bore- dom, production pressures, labour-management rela- tions, job dissatisfaction or conflict between one’s job and other obligations, particularly those at home, were noted.8 When there was a fear of toxic gas being released in Tokyo’s subway, more than 85% of the 5500 people seeking hospital treatment were found to have a psy- chogenic aetiology.10 Fear was heightened by the unique challenges associated with COVID-19, including com- municated global mortality, protracted lockdowns, vac- cine hesitancy and misinformation. In the non-clinical realm, similar symptoms were reported following the extraordinarily realistic, 1938 War of the Worlds radio

    broadcast where listeners panicked, believing they were being invaded from Mars.11 In 1954, fear of a local ra- diation leak causing car windscreen pitting took hold.11 In 2016, fear of a Russian-initiated, invisible ray attack on United States12 personnel in Cuba, known as the Havana Syndrome, appeared.13 Spreading easily, contagion ap- pears enhanced by the general excitement of emergency personnel and equipment, the media, rumours and in- terestingly, labelling the illness with a specific diagnostic term.8

    In order to evaluate epidemiological observations, Brad- ford Hill suggested that for A to cause B, specific criteria might be met.14 These include a strong association that intuitively is plausible, coherent, specific and consistent in other populations. Further, the stimulus must precede the outcome and that the relevant outcome could be reproduced experimentally. With respect to Long COVID, a follow-up study of 54,960 patients showed that pre- infection psychological distress predicted an increased risk of Long COVID.15 The mortality of acute COVID-19 and persistence of Long COVID stand in contrast to the Havana Syndrome where no deaths occurred.13 The ex- perimental induction of a similar psychogenic illness has recently been reported and, interestingly, demonstrated no gender differences.16 Despite these observations, psychogenic factors often polarise rather than contribute to the understanding and management of these disabling conditions.

    Getting the name right by understanding the problem

    ‘Refusing to acknowledge its existence or changing its name will not make it go away. The way we formulate the diagnosis and the way society responds to patients with the disorder do have consequences for course and outcome’.17

    Described as the social construction of reality, knowledge is not just made up of objective inquiry but also of the result of communicable social perceptions, values and beliefs. In an attempt to comprehend complexity and uncertainty, differing narratives may reflect the prevailing discourse in the only available currency at the time. For example, given the predominance of gynaecological- and obstetric-related symptoms, Hippocrates suggested the uterus (‘hyster’) was a central factor in ‘female com- plaints’. When spirit possession was at the fore, exorcism dominated. Influenced by the notion of planetary and magnetic forces on the human body, Mesmer suggested magnetism as a treatment. In 1697, Sydenham conceived hysteria as an emotional condition, moving the source of the disorder from the uterus to the brain with Freud emphasising unbearable conflicts presenting as physical manifestations.18 Comparing the similar symptoms of neurasthenia in the East and CFS in the West, social in- fluences were described, including the respect accorded to neurasthenia which confirmed those affected were often hard working and high achieving.19"

    then comes the table pasted in an above comment. more copy and paste...

    Currently, inquiry is typically molecular with virological, immunological and intracellular mechanisms attracting most attention.2 Described as the seductive allure of neu- roscience, even explanations based upon fallacious science are preferred over those without a scientific component.20 Thus, despite an inability to explain or to replicate features outlined in the historical clinical and non-clinical examples above, microscopic mechanisms are preferentially endorsed. Psychiatry itself seems to have retreated and created a series of euphemisms including ‘medically unexplained symp- toms’ and ‘functional neurological disorder’ (Table 1). Thisflight may be a genuine response to not knowing but also to the fear of repeating historical errors. Of the 85 patients in Slater’s series who had an illness labelled as hysteria, 12 died, 4 of whom by suicide.21 Bradford Hill makes an important observation: ‘All scientific work is incomplete. All scientific work is liable to be upset or modified by advancing knowledge. That does not confer upon us a freedom to ignore the knowledge we already have, or to postpone the action that it appears to demand at a given time’.14

    Conclusion

    There has been an uneasiness in writing this article. An un- easiness for fear of its misinterpretation and in so doing of being distracted from its overall aim, namely, to contextualise social and psychological factors in unexplained illnesses, both current and historical. The narrative offered here necessarily reflects the values and beliefs of the authors, all of whom are psychiatrists. Long COVID has similarities to other historical, clinical and non-clinical events that have appeared across time and cultures. The clinician can be alerted to this pos- sibility by recognising familiar polymorphic presentations that remain pathologically elusive but are associated with a disproportionate defensiveness. Reacquaintance with his- torical lessons may offer an appreciation of the agility of the mind and body and an opportunity to intervene early with a focus less on the molecular and more on the context from which the person presents.

    Disclosure

    The author(s) declared no potential conflicts of interest with respect to the research, au- thorship, and/or publication of this article.

    Funding

    The author(s) received no financial support for the research, authorship, and/or publication of this article.

    References

    1. Berger PL and Luckman T. The social construction of reality. NY: Anchor Books, 1966. 2. Davis HE, McCorkell L, Vogel JM, et al. Long Covid: major findings, mechanisms and

    recommendations. Nat Rev Microbiol 2023; 21: 133–146.
    3. PooreM,SnowPandPaulC.AnunexplainedillnessinWestOtago.NZMedJ1984;97:

    351–354.
    4. The Medical Staff of the Royal Free Hospital. An outbreak of encephalomyelitis in the

    royal free hospital group, London in 1955. Br Med J 1957; 2: 895–904.

    5. McEvedyCPandBeardAW.Royalfreeepidemicof1955:areconsideration.BrMedJ1970;1:7–11.

    6. Weintraub MI. Hysteria – a clinical guide to diagnosis. Clin Symp 1977; 29: 1–31.

    7. Newman M. Chronic fatigue syndrome and long Covid. Br Med J 2021; 373: n1559.

    8. BossLP.Epidemichysteria:areviewofthepublishedliterature.EpidemiologicalReviews 1997; 19: 233–243.

    9. Millon T. Masters of the mind. New Jersey: John Wiley & Sons, 2004.
    10. OkumuraT,SuzukiK,FukuyamaA,etal.TheTokyosubwaysarinattack.AcadEmergMed

    1998; 5: 613–628.

    11. Heyer P. America under attack. Can J Commun 2003; 28: 149–165.

    12. Medalia NZ and Larsen ON. Diffusion and belief in a collective delusion: the Seattle windshield pitting epidemic. Am Socio Rev 1958; 23: 180–186.

    13. Bartholemew RE and Baloh RW. Challenging the diagnosis of ‘Havana Syndrome’ as a novel clinical entity. J R Soc Med 2020; 113: 7–11.

    14. Bradford AB. The environment and disease: association or causation. Proc Roy Soc Med 1965; 58: 295–300.

    15. Wang S, Quan BA, ScD C, et al. Associations of depression, anxiety, worry, perceived stress and loneliness prior to infection with risk of post COVID-19 conditions. The Journal of the American Medical Association Psychiatry 2022; 79: 1081–1091.

    16. Broderick JE, Kaplin-Liss E and Bass E. Experimental induction of psychogenic illness in the context of a medical event and media exposure. American Journal of Disaster Medicine 2011; 6: 163–172.

    17. Eisenberg L. The social construction of mental illness. Psychol Med 1988; 18: 1–9.

    18. Trimble M and Reynolds EH. A brief history of hysteria. Handb Clin Neurol 2016; 139: 3–10.

    19. AbbeySEandGarfunkelPE.Neurasthenicandchronicfatiguesyndrome.AmJPsychiatr 1991; 148: 1638–1646.

    20. Hopkins EJ, Weisberg DS and Taylor JCV. The seductive allure is a reductive allure. Cognition 2016; 155: 67–76.

    21. Slater E. Diagnosis of “hysteria”. Br Med J 1965; 1: 1395–1399.
     
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  16. NelliePledge

    NelliePledge Moderator Staff Member

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    Militant Freudinista Activist Tract
     
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  17. rvallee

    rvallee Senior Member (Voting Rights)

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    As far as I'm concerned, this is what mainstream medicine thinks about us. As is said in a quote above about euphemisms for hysteria, including "functional", psychiatry has indeed been doing this, rebranding constantly what words they use in public, but this paper is 100% in line with what most in medicine believe. It's actually refreshing in a sense, it's a mask off moment.

    There's been a lot of dancing around for decades, but the truth is that nothing has changed since the days of Freud, the profession is still stuck at the same phase. Whatever they don't understand, there be dragons. Even if not everyone condones or participates, no one objects out loud. This is why the authors and the health care services are comfortable publishing this. Reactionary movements always go back and forth between hardening and loosening, we're probably going to see some years of just openly saying the quiet part loud. Then probably back to better euphemisms, the same old ones.

    Only research taking this away from them will break the cycle. And likely AI trashing this heap of nonsense. Whatever happens, the people who bought into this will not let go of their own free will.
     
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  18. Deanne NZ

    Deanne NZ Established Member (Voting Rights)

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    I don’t understand how these author’s get a paper like this published when they include no clinical experience of treating or curing Long Covid or ME/CFS to back up their theory. Does Te Whatu Ora endorse their paper?
     
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  19. bobbler

    bobbler Senior Member (Voting Rights)

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    It is in the realms of just a mad manifesto for misogyny. I mean there’s no science or analysis it’s just a propaganda based rant against people they don’t like for no well-justified reason. Then telling made up angry stories to try and incite others.

    The sort of thing that if you write it and your job/profession is outside medicine and position of responsibility should be a red flag for a mental health referral, training in values and oversight (eg if managing or interacting with others as colleagues or customers). Like if someone did a manifesto for another bigotry in such poisonous terms?

    but I’m always astounded medicine lets these issues fester in its ranks

    this isn’t even charading as ‘help’ it’s just hate with not even pretending it has any intentions even if they were deluded of anything but disparagement. They just want to call certain people names. People who I doubt did anything to them , they just don’t want to analyse their own unfounded anger towards an unwitting group so instead are trying to just co-opt others to hate them too so that they feel at home in the ad populous fallacy? The whole thing makes little sense and doesn’t square any of its circles.

    I wouldn’t have been surprised if pre-edit each para started with: ‘oh and here’s another thing about them ..’
     
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  20. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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