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.
- 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
- Neurology Department, Hospital Clínico San Carlos, Madrid, Spain
Eva López-Valdés, Fernando Alonso-Frech & Alejandro Horga
- Neurology Department, Hospital La Luz, Madrid, Spain
Rebeca Fernández-Rodríguez
- Neurology Department, Ljubljana University Medical Centre, Ljubljana, Slovenia
Maja Kojović
- 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:
The definition, nomenclature and diagnostic criteria for functional neurological disorders (FND) have been revisited and renewed in the past two decades to reflect their current understanding. Hysteria was the term used to label these syndromes throughout most of the 18th and 19th centuries while in the past century, they have been called dissociative, conversion, non-organic, medically unexplained, somatoform and psychogenic disorders [
[1]]. However, the purely psychological model established in the past has progressively shifted to an integrated biopsychosocial paradigm as a result of research efforts mainly driven by modern cognitive neuroscience. The change of terminology to “functional” steers away from stigmatizing labels and has the advantage of being etiologically neutral, and a well-accepted term by patients and clinicians that simply describes abnormal nervous system functioning [
[2]].
Currently, FND are defined by the presence of symptoms and signs that show internal inconsistency or incongruity with the defined patterns of neurological or other medical diseases as reflected in the recently updated international classification of diseases [
[3]]. This definition does not require the presence of psychological factors or stressors as diagnostic criteria, as reflected in the latest diagnostic manual for mental disorders by the American Psychiatric Association [
[4]].
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.
One of the first studies on this clinical combination reported the prevalence of “hysteria” in “organic” brain disease to be 67% [
[9]], while later studies point to rates of 12%–20% [
[10],
[11]]. The reported data specifically addressing FND comorbidity in movement disorders is sparse. Onofrj et al. studied a large cohort (N = 942) of patients with Parkinson's Disease (PD), Lewy Body Dementia (LBD), Alzheimer's Disease, Multisystem Atrophy, Progressive Supranuclear Palsy and Frontotemporal Dementia, finding that FND were most prevalent in LBD (12%), followed by PD (7.0%) and other parkinsonisms (0%–3%)
A recent systematic review, including these two studies along with seven others, reports rates of somatization symptoms (including motor and non-motor symptoms) in PD that range from 7% to 66.7%
And what are these unexpected symptoms that are, perversely, so common in Parkinsons?
The most frequent overlapping FMD in PD included gait disturbances and tremor [
[16],
[17]], possibly followed by paresis, dystonia [
[13]], and parkinsonism [
[18]].
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.
However, in the Italian cohort, according to medical records, functional symptoms appeared prior to PD diagnosis (up to 10 years) in the majority (96%) of patients [
[13]]. In our experience, this is not uncommon and the debate is open as to whether FMD preceding the clinical diagnose of PD should be understood as a “misdiagnosis” or as a prodromal symptom of PD.
And then they talk about how resolution of symptoms when a placebo is given is diagnostic of a functional disorder. But
However, one should be cautious since dramatic placebo response can be observed in PD patients with no FMD comorbidity, as well as in other neurological conditions.
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?
Treatment of FMD in patients with PD shares similarities with that of isolated FMD and is based on education, guided physiotherapy and addressing emotional or psychological factors if pertinent [
[49],
[53]].
Additionally, optimizing PD treatment itself may also help to improve concomitant functional symptoms in some patients.
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.