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

Yann04 said:
Anyone know something I could send?
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https://jnnp.bmj.com/content/83/3/248
One advantage of ‘functional’ may thus be as a simplifying euphemism, allowing neurologists to use the same term to mean one thing to colleagues and another to patients. It may be precisely this ambiguity which has allowed the construct to survive despite the uncertainty and conflicts underpinning its meaning at any point in time.
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'I went into hospital for four days and came out two years later (FND)

Megan Dixon was 13 years old when she started feeling unwell.

By 16, her health had deteriorated to such an extent that she was taken to hospital after losing the ability to speak. Doctors believed she may have had a stroke.

She had only been due to remain there for four days for tests, but came out two years later completely paralysed. Unable to walk, talk or open her eyes, she was told she would never move again.

Megan was diagnosed with Functional Neurological Disorder (FND), which meant there was a problem with how her brain received and sent information to the rest of the body.

https://www.bbc.co.uk/news/articles/cx2x13k170do
 
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Contractions in the knees? Is that an ME/CFS symptom?


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She said: "I can move everything now. Obviously I can talk, I can see. I can't walk and I'm never going to be able to walk again, but that's because I've got contractions in my knees.

"I need surgery in order to bend them because my legs are stuck straight. It's very painful, but I'm waiting on surgery, and it means I'm never going to be able to walk again.”
 
To be honest it sounds very m.e type but no post-exertional malaise mentioned so unclear. Everything else I’ve heard of in severe me. I have contractures in my ankles and know someome else with LC/ME in their knees and we would tbf be devastwd if surviving the horror of severe ME amd Hanging on through the dark ages of scorn and neglect to be given some form of treatment for m.e but never be able to walk again.regarding contractures Afaiu well known risk & management is t always simple. Jessica Taylor ,a famous severe case, with similar age to this girl , deterioration into zero function , had to have her arms splinted and required surgery on improving and there was girl decades ago featured on the Esther rantzen m.e tv program who had a badly contractured hand drs would not believe she could not move. She posted years later that was a lot better on Facebook but I was sad to see her hand still twisted
 
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Kitty said:
No, but I guess anyone could get contractures from very prolonged immobility?
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for me the issues are not just arising from immobility, but I think hyper Tone, spasticity, the type of issues seen in neurological conditions. I get a lot of muscle issues all over, including facial grimaces and the bent arms, claw hands, we see when people have neuro injury but it's my ankle feet that are worst as I can hardly ever move my left foot. I can't say this conclusively as I have no medical care and have had little time with neurologists. The nhs gp etc were keen to put it down to immobility but I don't think so & I have had nhs physiotherapists diagnose hypertonic muscles. https://www.wsh.nhs.uk/CMS-Document...agement-advice-positioning-for-spasticity.pdf
 

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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.
 
Jonathan Edwards said:
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.
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I remember reading (in an Action for ME magazine, I think) about 35-40 years ago an account by a man of his wife with ME whose hands kept contracting so badly that she had to have her fingers broken. I may be misremembering that, and of course she may have been misdiagnosed with ME or the hands issue may have been separate. I don't think I've heard of a similar case since.
 
Jonathan Edwards said:
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.
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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
 

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Cinders66 said:
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.
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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?
 
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
 
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Jonathan Edwards said:
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."
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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 said:
https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2022.803145/full
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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).
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The lack of critical thinking and reflexivity is baffling.
 
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