Below is an unedited extract of a chapter in a document I'm preparing.
"Denial of Medical Treatment and Investigation
“Don’t call an ambulance for CFS again”!
..... we as a patient group are regularly denied the ordinary medical investigations into new onset symptoms available to others – a denial of standard medical care. These are often assigned a psychiatric 'sticky label' of 'functional neurological disorder' FND, afterall we already have CFS added to the ICD-11 ME symptom presentation.
"
At first glance ME/CFS and dissociative non-epileptic seizures may seem to be unconnected, but several studies into a phenomenon known as neuronal kindling such as ‘An Etiological Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’ (Leonard A Jason, et al) stress the neurological, rather than psychological, vulnerability of ME/CFS sufferers to such events. Despite this, an individual observed to be suffering from such a seizure – at least in Scotland – may be denied access to treatment in a hospital if a psychiatrist has stated in that patient’s medical record that his or her condition is deemed ‘behavioural’.
David J Black, in a article dated 16 March 2022 for Scottish Legal News
[1]
Case history:
A woman suffering from severe ME was bedbound in a prolonged episode of PEM and was light and sound sensitive. When her husband returned from work he found her having a seizure. He noticed before entering the house that the music coming from next door was unbearably loud, to the extent that neighbours further down the street had been drawn out of their homes to see what was going on. An ambulance was called and she was taken to the local hospital. After a wait in A & E, she was seen by a female doctor who after some cursory reflex tests announced: that there was nothing wrong and that CFS was "never an emergency" and that they should "never call an ambulance for it again".
They never did.
Listening to music had been one of her pleasures in life and her husband was an avid listener. Together, they learned how to work around this new symptom. He would wear headphones and play it as loud as liked, and when they wanted to listen together, she could manage only 10mins at a low level. Any more than that, especially when she was sound and light sensitive would provoke a seizure.
Some years later, long after her husband's death, she came across a clinical case history published on Wiley, first published on 20 October 2023 titled “Musicogenic seizures—STXBP1 encephalopathy with reflex seizures.”[2]
She researched further through the References in the paper, out of curiosity, rather than self- diagnosis, as she was not going to be seen again as an ME patient for anything. Very quickly, she discovered that it was a rare type of seizure which included atypical absence seizure [3] mostly found in young babies to adolescents which was discovered in 2008.
As she was never investigated other that a few standard reflex tests taking all of 2 mins (by which time the seizure had long since finished), she would never know the answer. In any event, she had since learned how to avoid triggering them. Further trips to, or stays in, the bright and noisy environment of a hospital was not, she had established, conducive to her health.
Curiosity sated she left it at that.
That woman was me."
[1] David J Black: PACE-gate. Have we been Waddelled? | Scottish Legal News
[2] Musicogenic seizures—STXBP1 encephalopathy with reflex seizures - Desai - 2023 - Epileptic Disorders - Wiley Online Library
[3] STXBP1 Disorders - Symptoms, Causes, Treatment | NORD (rarediseases.org)
