1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Functional neurological symptoms as initial presentation of Creutzfeldt-Jakob disease: case series 2022 Gómez-Mayordomo et al

Discussion in 'Other psychosomatic news and research' started by Andy, Sep 30, 2022.

  1. Andy

    Andy Committee Member

    Messages:
    21,814
    Location:
    Hampshire, UK
    Abstract

    Background
    Functional Neurological Disorders (FND) are common in clinical practice. It is recognized that FND may present at onset or during the course of other neurological diseases (functional comorbidity).

    Cases
    We report a clinical series of three patients who initially presented positive signs of a functional movement disorder (FMD) and were later diagnosed with a Creutzfeldt-Jakob disease (CJD). All patients presented with unilateral functional tremor, two patients also had functional limb weakness. All patients progressed to an asymmetric corticobasal syndrome, fulfilling clinical criteria of CJD. They had a rapid progression and died within 2–3 months.

    Conclusions
    FND may be the initial clinical presentation of neurodegenerative diseases reflecting a dysfunction across brain circuits that are involved in the pathophysiology of FND. A positive diagnosis of FND is essential as it is an adequate examination and a close follow-up of these patients in neurology clinics.

    Paywall, https://link.springer.com/article/10.1007/s00415-022-11376-5
     
    spinoza577, Hutan, Sid and 3 others like this.
  2. Sean

    Sean Moderator Staff Member

    Messages:
    7,046
    Location:
    Australia
    FND is the new everything.
     
  3. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,315
    Is this trying to sell that misdiagnosing these serious illnesses into FND bucket is somehow a good thing? Or in their words 'essential'?

    Yet I've never read in any of the 'treatment for FND' papers that the most important thing is that they keep a close eye to see which ones have CJD which means they only have months to live etc?

    Is this for real? Is it daring to try and put a silver lining of fibs on what looks like utter horrific failure - if neurology miss, because they diagnose people in their last throws of CJD with 'it must be functional and to do with the mind' FND or FMD silly terms, how can they show their faces without a clear-out of their profession wake-up moment. What can they still do?

    I remember watching the TV coverage of CJD when it was first being discovered and it is a horrific illness. And surely is at a point where anyone who saw thinks 'come on' re: FND if people in the last few months of that get misdiagnosed with it - they created FND based on the claim they could see 'nothing wrong to explain it/with the hardware' for goodness sake! That is simply not possible in those with CJD at that stage - they must have been not looking, and given the level of illness something must have compelled people not to look pretty hard vs the obvious symptoms they'd have had saying something was seriously wrong.

    How can people morally live with themselves if they are part of a system suggesting that, rather investigate, buckets people and sends them off to CBT feeling like it is all functional?

    And what on earth is the usefulness of it? You'd think justifying yourself would have to be the thrust of this article, not selling it as good.

    I can't tell whether this is using the cliffhanger trick in order to get people to buy the full article is whether these people misdiagnosing meant that rather than get the heads up that allowed them to 'sort their affairs whilst they could' in what would have been a fast-declining 2-3months this was robbed of them.

    I mean I know storytelling to make things compelling is their thing but.. using someone's story to the extent where it's like a pay a £30 to find out the ending - did they die before they were diagnosed, and what happened to them in those last months did they get care?

    then in the abstract saying that misdiagnosis into FND was somehow essential whilst logic says 'what on earth twist have I missed that explains why that would at all be the case' I find this quite obscure?
     
    Last edited: Oct 3, 2022
  4. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    6,048
    Location:
    UK
    If someone is suffering from CJD then none of their CJD symptoms can be "caused by" FND or conversion disorder or hysteria.

    In many cases a diagnosis of FND will just slam shut the doors on any further investigation of any symptoms. But then the patient is doomed anyway. :(

    The only reason someone with CJD will get a diagnosis once they've been diagnosed with FND is when they develop one of the many other horrible symptoms. CJD can be fatal within months.

    https://en.wikipedia.org/wiki/Creutzfeldt–Jakob_disease#Signs_and_symptoms
     
  5. ukxmrv

    ukxmrv Senior Member (Voting Rights)

    Messages:
    847
    I am guessing that the CJD was found in post mortem or shortly before they died?

    They died very quickly once dx'd with FND so I can only imagine their suffering in that time. A tragedy in so many ways.
     
    Woolie, JemPD, Lilas and 9 others like this.
  6. Cheshire

    Cheshire Moderator Staff Member

    Messages:
    4,675
    These people can't admit they misdiagnosed someone. They can't admit being wrong. It is literally impossible to trust them.
     
    Last edited: Oct 3, 2022
    Woolie, livinglighter, Lilas and 13 others like this.
  7. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,300
    Location:
    Canada
    Nevermind how absurd this whole thing is, I can't read this sentence other than as saying that making a diagnosis of FND is itself an adequate examination and close follow-up.

    Which sounds about right. In a hand-waving process, the hand-waving is the process. But this says a lot about how the intellectual and moral bankruptcy of this ideology. They genuinely cannot accept the fact that they have been completely wrong about this and prefer to continue making stuff up.

    Seriously, there are cults out there that are less silly than this. That does not make them any serious or good, but they are clearly more concerned with making some minimal sense and would avoid hurting people if it's the only way to prosper.
     
    Lilas, alktipping, Hutan and 7 others like this.
  8. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    6,048
    Location:
    UK
    If a patient has CJD how can a diagnosis of FND be essential? I simply don't understand this at all. It is just time-wasting in what will be the patient's last few months of life.
     
    Woolie, livinglighter, Amw66 and 11 others like this.
  9. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,300
    Location:
    Canada
    It can avoid costly investigations. As far as I can tell, the only goal of BPS medicine is to reduce costs. Everything else is superfluous.

    So no benefit to patients, in fact it makes it worse, but it's cheaper and easier for healthcare services, as long as they don't mind neglecting their duties and harming patients in the process. Which is easy to wash away with a systematic process of lying and pseudoscience.
     
  10. ukxmrv

    ukxmrv Senior Member (Voting Rights)

    Messages:
    847
    The videos are very distressing (scroll down to the bottom of the abstract and keep going. The videos are at the end)

    Something in Video 2 of possible note. The videos are split into parts.

    From the exercises that they are asked to do on these videos, I have a feeling that they give the label of "functional" when (for example) the cognitive challenge stops the tremor? Is this their theory about thinking distracting the person from their "hysterical" movements.
     
    Lilas, Arnie Pye, alktipping and 4 others like this.
  11. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,315
    If that is what their observation saw then surely it blows out of the water their 'not hardware' nonsense as it would have been caused by the prions issue (nerve cells dying leaving the cortex like a sponge with holes in it from where this left gaps). They have their condition that proves them wrong. And worse those given FND certainly aren't guaranteed to not have something concerningly wrong to have been ruled out at all.

    I slightly bet many other very hardware and un-mind-related conditions also have the same situation where concentration on one thing might 'divide resources' (like in an energy limiting condition) so all their 'talk' only shows their stupidity anyway of their hypotheses being based only on not bothering to consider any other alternative logical and not hard to think of possibilities that fit with what they should know about the human body.


    CJD treatment is really going to move on if that's their attitude. How many even get post-mortems then or are they getting disappeared too if you can misdiagnose them long enough? Sound familiar? So no mapping of how these patients fare going into research because you misdiagnose them - what sensibly downside is missing that should be there stopping these people from doing this ie it counting as 'missed diagnoses' or bringing down their stats for FND recovery (do they even have to properly repor on 1,5,10yr survival and condition like cancer)?

    And there is the circle as to how they 'prove' their FND rubbish. What does said diagnosis mean for access to post-mortems or anything else that can prove their 'narrative' wrong? I guess people who die count as 'drop-out' so don't have to count in their 'success figures' for some reason? and for some reason no system is calling them out on these rates 'because they would have died anyway' - so let's not bother to move science on?

    Why is noone checking these death rates and the circumstances leading up to death?

    What is it that neurology themselves actually do bother to push science forward on? I'd guess their pact with psychiatry they've got into of recent years where there seems to be a trend for certain types to seek double-certs and do storytelling (rather than do the job in such a way that the stories tell themselves), and put things like alzheimers and Parkinson's under mental health rather than neurology perhaps coincides with this change in attitude?
     
  12. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,315
    Why aren't they getting sued? I know you can't save these patients currently but by doing this you reduce the chances of science moving forward, and of said patients having dignity and getting the months before they can no longer function worked out so they can have peace going through that hell. It is the most inhumane thing ever not to try - and is making decisions for people to 'not tell them' by not looking.

    'hope' can't be the excuse here. It doesn't make a blind bit of difference to outcome. So blows that nonsense they use to lie about ME out of the water (which does lead via misleading prognosis advice to people getting more permanently worse than necessary).

    And if they can't spot a melted sponged brain from 'nothing wrong with the hardware' with their processes then their claims of 'nothing physically wrong with the hardware' mean nothing. And just show up how they don't strive for decent diagnostics before saying that phrase. It means nothing from them.

    If you can't (or won't) tell the difference between less than 6months to live CJD and your pet conversion disorder should you really be claiming the money and calling yourself a professional in this area? Just another one they don't fancy having to deal with?
     
    Last edited: Oct 2, 2022
    ukxmrv, alktipping, Hutan and 4 others like this.
  13. Sid

    Sid Senior Member (Voting Rights)

    Messages:
    1,054
    In other words, all the “positive signs” that are supposed to rule-in a functional disorder (as opposed to it being a wastebasket diagnosis) that FND proponents like Stone keep bleating on about can in fact be caused by a neurological disease. We were assured by FND advocates that no known neurological disorder can account for these symptoms.
     
    Gradzy, Woolie, cassava7 and 19 others like this.
  14. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    2,182
    yes, this is a very perplexing study.
     
    cassava7, bobbler, Cheshire and 6 others like this.
  15. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,860
    Umm yeah this sentence…so glad this went rigorous peer and editorial review.
     
    Lilas, rvallee, bobbler and 4 others like this.
  16. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,860
  17. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,534
    Location:
    Aotearoa New Zealand
    In what must be the Freudian slip of 2022:
    Here's a screen shot, just in case you think it is too incredible to be true.

    Screen Shot 2022-10-03 at 10.42.14 am.png
     
  18. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Messages:
    4,256
    Location:
    Aotearoa New Zealand
    Genius, well spotted. And it's in the article PDF I've just download.
     
  19. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,534
    Location:
    Aotearoa New Zealand
    The videos won't play for me, but it's appalling that the caption of the first one points to the infantile speech of a patient, as if it was a confirmation of FND.

    I think the names of the authors and Spanish and Slovenian clinics involved are worth recording here, in the hope that people with debilitating symptoms who are looking for answers will not seek them from these people.
    1. Neurology Department, Hospital Universitario Infanta Elena. Instituto de Investigación Sanitaria de la Fundación Jiménez Díaz (iiSFJD). Universidad Complutense de Madrid, Madrid, Spain
      Víctor Gómez-Mayordomo

    2. Neurology Department, Hospital Clínico San Carlos, Madrid, Spain
      Eva López-Valdés, Fernando Alonso-Frech & Alejandro Horga

    3. Neurology Department, Hospital La Luz, Madrid, Spain
      Rebeca Fernández-Rodríguez

    4. Neurology Department, Ljubljana University Medical Centre, Ljubljana, Slovenia
      Maja Kojović

    5. Neurology Department, Hospital Ruber Internacional, Madrid, Spain
      Isabel Pareés
    It is also notable that Jon Stone is an author of four of the 13 references.

    Isabel Parees, one of the authors of this paper, is the author of another of the references: 'Functional movement disorder comorbidity in Parkinson’s disease: unraveling the web 2020.' There's so many points in that paper that leave me completely amazed.

    First off, FND is defined as the presence of any symptoms that the doctor doesn't think are part of the clinical picture of the neurological disease the patient has been diagnosed with:
    Then they note that FND is common in neurological diseases with up two thirds of people with Parkinsons disease being labelled as having somatisation symptoms. There seems to be that completely unconscious attribution of somatisation to anything that doesn't fit with the doctor's idea of a disease.
    And what are these unexpected symptoms that are, perversely, so common in Parkinsons?
    Yep, gait disturbances and tremor in Parkinsons. But clearly, not the right sort of gait disturbance or tremor. And symptoms that improve with distraction seems to be a big giveaway that the patient has a functional overlay. Also people who 'huff and puff' to over-display exertion.

    They then note that it's very common for FND to precede the Parkinsons diagnosis, and even go as far to (briefly) consider if in fact FND might be a misdiagnosis.
    And then they talk about how resolution of symptoms when a placebo is given is diagnostic of a functional disorder. But
    I find it all incredibly strange. Surely, even if a clinician thinks a Parkinsons patient is making a bit much of their symptoms, kindness, understanding that the person may be feeling quite overwhelmed by what they are going through and a bit of recognition that the clinician isn't in that person's body would stop them from slapping a functional overlay label on the person?
    What, treating the Parkinsons disease optimally makes the functional symptoms go away?

    The whole FND idea smacks of a 'gotcha-mentality'. There's some nasty victim-blaming in that Parees 2020 paper.
     
    Woolie, livinglighter, Lilas and 13 others like this.
  20. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,860
    The Journal of Neurology is an international peer-reviewed English-language journal which publishes on all aspects of clinical neurology from diagnosis to treatment. Founded in 1891, Journal of Neurology has reliably published excellent research in Neurology for over 130 years. The journal publishes Original Communications, Reviews, Commentaries, Letters to the Editor and Pioneers in Neurology as well as the invited Neurological Updates and Journal Clubs.


    Editors
    Joint Chief Editors

    Dr. Roger A. Barker
    Cambridge Centre for Brain Repair
    University of Cambridge
    The E.D. Adrian Building
    Forvie Site, Robinson Way
    Cambridge CB2 2PY, UK
    Tel.: +44-1223 331160
    Fax: +44-1223 331175
    E-Mail: rab46@cam.ac.uk

    Professor Dr. Massimo Filippi
    Division of Neuroscience
    San Raffaele Scientific Institute and
    Vita-Salute San Raffaele University
    Via Olgettina 60
    20132 Milan, Italy
    E-Mail: filippi.massimo@hsr.it

    Prof. Dr. Michael Strupp
    Universität München
    Klinikum Großhadern
    Neurologische Klinik
    Marchioninistrasse 15
    81377 München, Germany
    Fax: +49-89/7095-8883
    E-Mail: Michael.Strupp@med.uni-muenchen.de




     

Share This Page