Functional Neurological Disorder (FND) - articles, social media and discussion

[Jonathan Edwards]

hands kept contracting so badly

That happens with lupus but I don't think one can assume this was ME/CFS.

 

[Cinders66]

I am not aware that spasticity has ever been recorded in the context of ME/CFS. It implies a structural upper motor neuron problem and that has not been reported in ME/CFS. Contractures will occur with prolonged postures - chiefly plantar flexion of feet and flexion of knees. Spasticity tends to force knees into extension.

It probably wouldn’t be recorded as few with severe ME have specialist care, or research, GPs never view or interpret m.e medical terms. In my view my own experience of limb and distressing muscle tightness & tensions , especially after the limb js used or stretched is more than immobility eg neck twisting over and facials grimaces, lying limbs all contorted etc, which I used to do in my crashes before becoming Bedbound and immobile. It fits with very severe ME neurological issues eg loss of swallowing , & m.e classed as neurological disturbance, .jessica Taylor

 

[Jonathan Edwards]

It probably wouldn’t be recorded as few with severe ME have specialist care, or research, GPs never view or interpret m.e medical terms.

I think that is difficult to argue. There are maybe 10,000 people with severe ME/CFS in the UK. At least a proportion of them get to be seen by physicians. Spasticity that contributes to disability is a straightforward thing to pick up that we all learn to do as medical students. Has this really been missed in every case?

Nobody has actually documented 'neurological issues' in severe ME/CFS as far as I know. If they occur then someone should go out and document them. I would be very happy to do neurological examinations on anyone who thought they might have neurological signs because if they did it would totally change the research questions we are asking. At least in the past there have been competent physicians, including neurologists like Saul Berkovitz assessing people with ME/CFS. Why is there no documentation at all of neurological deficits?

 

[Cinders66]

I think the severe figures , if 25%, are way more than 10 000. How do you derive those figures? It seems to be based on the lowest estimate of severe ME 10% of the lowest estimate of ME/CFS 100 000? However it’s going to be primarily in the very severe/ bordering on extreme cases ,and even then , not all just some. It’s not going to conform to usual rules. Eg my arms will be bent up, because of a driving force all day but at night on my side they go straight all night which has presumably prevented contractures

 

[Cinders66]

I think that is difficult to argue. There are maybe 10,000 people with severe ME/CFS in the UK. At least a proportion of them get to be seen by physicians. Spasticity that contributes to disability is a straightforward thing to pick up that we all learn to do as medical students. Has this really been missed in every case?

Nobody has actually documented 'neurological issues' in severe ME/CFS as far as I know. If they occur then someone should go out and document them. I would be very happy to do neurological examinations on anyone who thought they might have neurological signs because if they did it would totally change the research questions we are asking. At least in the past there have been competent physicians, including neurologists like Saul Berkovitz assessing people with ME/CFS. Why is there no documentation at all of neurological deficits?[/QUOTE




I think the severe figures , if 25%, are way more than 10 000. How do you derive those figures? It seems to be based on the lowest estimate of severe ME 10% of the lowest estimate of ME/CFS 100 000? However it’s going to be primarily in the very severe/ bordering on extreme cases ,and even then , not all just some. &my arms will be bent up, because of a driving force all day but at night on my side they go straight all night which has presumably prevented contractures, however some individuals can’t change positions other than either their back or one side which will probably increase vulnerability.



FWIW Along time ago now 2014
Dr Bansal wrote this for Invest in ME conference

After the conference Dr Amolak Bansal (Consultant Clinical Immunology and Immunopathology, Epsom and St. Helier University Hospitals NHS Trust, Surrey) added the following especially for Invest in ME, explaining severe ME in the following way -
"While it is presently very difficult for modern medicine to fully explain all severe ME symptoms, disordered neural function within the brain and spinal cord would come close.
How this occurs is unknown but there are counterparts in certain newly described autoimmune conditions and viral infections of the nervous system.
In addition to a direct stimulation of neurones in different parts of the brain and spinal cord there is also an impaired filtering function of the brain stem and a reduced threshold for neurones to fire off.
This allows external stimuli such as movement, light, sounds, touch and sometimes even worrying thoughts to produce widespread neuronal activation with ultimate excitotoxic damage to these cells.
The consequence is impaired activity of the brain generally but particularly the hypothalamus and prefrontal cortex leading to fatigue, disordered sleep, impaired memory, attention, faintness, palpitations, disordered respiration, temperature dysregulation etc.
Outwardly many patients appear well and routine blood and other investigations are normal.
Internally there are severe symptoms which, if unchecked, escalate leading ultimately to immobility and increasing pain and spasms in a proportion of patients.
Clearly a greater understanding of this highly disabling condition is required with a greater focus on disrupted immune and neural pathways and not just psychosocial factors as has previously been the case."

 

[Jonathan Edwards]

I think the severe figures , if 25%, are way more than 10 000.

Sure, I was being as conservative as possible for the sake of the argument. I probably meant to put 'very severe'. If there are 60,000 then it is even more peculiar that no physician has found spasticity in ME/CFS (if it occurs).

 

[Jonathan Edwards]

Bansal seems just to be using autoimmune encephalomyelitis as an example of widespread brain abnormality: How this occurs is unknown but there are counterparts in certain newly described autoimmune conditions and viral infections of the nervous system. He doesn't say anything about specific neurological signs or processes in ME/CFS.

At the time Bansal was interested in looking for antibodies to brain in ME/CFS and that was why we got Angela Vincent involved in that conference or maybe the next one. But nothing was found.

 

[DigitalDrifter]

https://www.michiganmedicine.org/he...uctural-abnormalities-brain-scans-study-shows
https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2022.803145/full

Functional Seizures show up upon scans (I've not read the full articles due to not being well enough).

 

[Utsikt]

https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2022.803145/full

The PNES are probably a dissociative and emotional pathology. Indeed, emotional processing in PNES is probably different from a healthy state, and overwhelming emotions must be suppressed. The PNES would be the result of an excessive suppression or an emotional inhibition of this emotion (4).

The lack of critical thinking and reflexivity is baffling.

 

[rvallee]

How... exactly Freudian. Just the same old recycled crap going on for over 150 years.

 

[Sean]

The lack of critical thinking and reflexivity is baffling.

At this stage there is no possibility left that they are merely incurious, ignorant, or incompetent. That excuse simply does not exist.

 

[Arnie Pye]

I thought this short might be of interest in relation to so-called "functional" seizures :

https://www.youtube.com/shorts/sfV9vt01IBE

 

[Utsikt]

An anonymous user with a dutch IP that also edits Paul Garner’s wikipedia page added the following section to the functional somatic syndrome wikipedia page:

Chronic fatigue syndrome is widely regarded within mainstream medical science as a functional somatic syndrome, despite severe opposition from many patients and their advocacy groups.[1][2][3][4][5]

1. Donnachie E, Schneider A, Enck P (2020-06-17). "Comorbidities of Patients with Functional Somatic Syndromes Before, During and After First Diagnosis: A Population-based Study using Bavarian Routine Data". Scientific Reports. 10 (1): 9810. doi:10.1038/s41598-020-66685-4. ISSN 2045-2322.

2. Fink P, Schröder A (2010-05). "One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders". Journal of Psychosomatic Research. 68 (5): 415–426. doi:10.1016/j.jpsychores.2010.02.004. ISSN 1879-1360. PMID 20403500. {{cite journal}}: Check date values in: |date= (help)

3. Linde A (2007-10). "[Chronic fatigue syndrome--a functional somatic syndrome]". Therapeutische Umschau. Revue Therapeutique. 64 (10): 567–574. doi:10.1024/0040-5930.64.10.567. ISSN 0040-5930. PMID 18214210. {{cite journal}}: Check date values in: |date= (help)

4. Henningsen P, Zimmermann T, Sattel H (2003). "Medically unexplained physical symptoms, anxiety, and depression: a meta-analytic review". Psychosomatic Medicine. 65 (4): 528–533. doi:10.1097/01.psy.0000075977.90337.e7. ISSN 1534-7796. PMID 12883101.

5. Wessely S, Nimnuan C, Sharpe M (1999-09-11). "Functional somatic syndromes: one or many?". Lancet (London, England). 354 (9182): 936–939. doi:10.1016/S0140-6736(98)08320-2. ISSN 0140-6736. PMID 10489969.

Another user with a Russian IP then edited it to (and added some more sources):

ME/CFS has been regarded by some as an FSS condition.

 

[Yann04]

An anonymous user with a dutch IP that also edits Paul Garner’s wikipedia page added the following section to the functional somatic syndrome wikipedia page:






Another user with a Russian IP then edited it to (and added some more sources):

The first edit is a pretty clear breach of this wikipedia policy
[URLunfurl="true"]https://en.wikipedia.org/wiki/Wikipedia:Citation_overkill[/URL]

In controversial topics, sometimes editors will stack citations that do not add additional facts or really improve article reliability, in an attempt to "outweigh" an opposing view when the article covers multiple sides of an issue or there are competing claims.

Edit: Wait this isn’t an official wikipedia policy? I’m a bit confused. Better not take it too seriously.

Edit 2: Okay here’s the official “policy” or more like style guide

Template:Excessive citations inline - Wikipedia

en.wikipedia.org

 

[rvallee]

An anonymous user with a dutch IP that also edits Paul Garner’s wikipedia page added the following section to the functional somatic syndrome wikipedia page:






Another user with a Russian IP then edited it to (and added some more sources):

This page should be flagged. It definitely doesn't meet wikipedia standards.

 

[SNT Gatchaman]

Reddit thread in the Long Haulers' group: Anybody else get told it’s “Functional Neurological Disorder” (FND) ?

Including this comment, which quotes a neurologist's discussion with the patient —

“you’re having panic attacks you don’t know about, and that’s what’s causing the uncontrollable spasms in your hand and foot.”

“you have strong emotions you’re not aware of and they’re manifesting without your knowledge.”

In case anyone was wondering what the practical "thinking" is at the coal-face.

Counterpoint:

My endocrinologist is very mad about all the long COVID patients who are being told they have FND. He thinks it’s BS.

Good man

 

[Utsikt]

Reddit thread in the Long Haulers' group: Anybody else get told it’s “Functional Neurological Disorder” (FND) ?

Including this comment, which quotes a neurologist's discussion with the patient —





In case anyone was wondering what the practical "thinking" is at the coal-face.

Counterpoint:



Good man

Ah, the good old panic attacks..

I’ve had a couple of full on panic attacks and lots of anxiety before getting sick. So when I had a HR of 120+ for 30 hours straight (it’s usually ~70) when lying down and was unable to sleep at all with lots of chest pain and tightness, they said it was a panic attack. The fact that it didn’t at all feel like any of my panic attacks or anxiety wasn’t relevant.

Luckily my psychologist called bullshit on it and essentially said that there is no reason to suspect any psychosocial causes for my problems.

I’ve had a complete workup wrt the heart after that and everything was fine, so I’ve got no idea about what actually happened.

 

[dave30th]

Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you. - The Sick Times

Some people with Long COVID are receiving potentially unhelpful diagnoses of functional neurological disorder (FND), a condition in which people experience neurological symptoms that cannot be attributed to known or currently identifiable pathophysiological causes.

thesicktimes.org

 

[Hutan]

That's an important article Dave, @dave30th.

A clinical guide for managing people with ME, Long COVID, and related disorders, from the Bateman Horne Center, a clinic near Salt Lake City, Utah, specifically advises medical providers to “monitor for inappropriate psychiatric relabeling (e.g., functional neurological disorder […]) by any member of the care team.”

That was interesting. I haven't seen that in a clinical guideline before, but it makes good sense.

 

[Liie]

The concepts "functional disorder" and "functional neurological disorder" seem to be on the rise.

Do any of the forum members have a feeling for generally what kinds of conditions are given those diagnoses?

Are these diagnoses mainly constructed for conditions like ME/CFS, long covid, fibromyalgia, IBS etc, where most patients, many researchers and many clinicians believe that there is a underlying biomedical problem?

Or are these diagnoses primarily constructed for people with mental health problems, such as anxiety and depression, which manifest as physiological symptoms? And that ME/CFS and the other chronic conditions are kind of are swept up by the expansionist tendencies of the psychology field? Even if the diagnoses were not constructed specifically for ME/CFS etc to start with.

Maybe what I'm thinking about is whether the concepts "functional disorder" and "functional neurological disorder" have some justification, even if their application to ME/CFS is invalid.