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

Cinders66 · Apr 27, 2025 at 3:46 PM

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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Click to expand...

Jonathan Edwards · Apr 27, 2025 at 4:07 PM

Cinders66 said: ↑

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

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 · Apr 27, 2025 at 4:11 PM

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.

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

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