Discussion in 'Health News and Research unrelated to ME/CFS' started by Alvin, Oct 18, 2018.
A friend of mine pointed this out to me, and asked the valid question - how do we know this is not further evidence of either ME or a similar process?
They do discuss delusions, which are not normal for ME, but this is also in the context of sepsis and other crises which will severely disturb brain function.
Although I don't think I have delusions, I do sometimes find myself confabulating, unhelpfully filling in gaps in my memory with inventions without being aware I am doing so. Memory problems are regularly reported in relation to ME, but I have not come across mention of associated confabulation. The main problem with this, beside potentially appearing stupid, is that it leaves me unaware of the associated gap in my memory. It is not necessarily a problem not remembering something, but it may be a problem not knowing you can not remember that thing. (Note - obviously it can not be ruled out that this is the consequence of a separate neurological factor supplementary to my ME.)
Philosophically this is not that far from delusions, and may be part of the process by which delusions develop in dementia where the individual is struggling to make sense of impoverished data.
When working I had come across this form of dementia in the elderly, though then it was assumed that the acute state and sudden hospitalisation magnified a pre existing undiagnosed condition. Then it was generally though acute confusional states resulting purely from say an associated actuate infection would spontaneously resolve once the underlying medical issue was resolved, for example a ninety year old man with cardiovascular issues and an infection in his leg had a sudden onset dementia that completely resolved once his leg was amputated. In contrast a lady in her eighties functioning well intellectually in her home with support for her physical condition fell and broke her hip; on admission to intensive care (a considerable distance and an air ambulance flight from her small island home) she was very confused. This dementia did not resolve with the successful treatment of her fracture, but it was assumed that the acute condition and sudden loss of the props of a familiar surroundings exacerbated a pre existing ongoing undiagnosed Alzheimer's.
So it is interesting to read of acute confusional states persisting into an ongoing dementia in the absence of any other identified underlying medical factors. This does seem to have a philosophical similarity to ME [added, that is the form of ME with a sudden onset, associated with an acute infection], even if, as is likely, it turns out to be a different neurophysiological process.
As a student, my husband and I suddenly found ourselves in the position where his salary only covered the bills and we hab no money to live on for the rest of the month. He saw an advert for a barman in a local pub and got the job. They also wanted waitresses so I got that job - this was before we knew I had ME. I managed 3 nights before I collapsed (though my tips meant we could eat!)
He carried on working, out all day at his main job and then out at night. He cooked for me before he left and checked I was OK but put my quietness down to feeling ill. In fact, I was becoming more and more disconnected from reality. One day, he came in from work and I was sitting in a cupboard hiding from the seagulls as I thought I had died and they were vultures wanting to eat me.
He helped me to bed and talked me back to reality - no doctors thank god. He arranged for my parents to come the next day and having people about seemed to focus me.
Then I had a mild post partum psychosis after my second child was born, again a disconnect from reality.
Years later, he took the kids away to a caravan for a few days and I felt myself drifting again, though I knew what it was and was able to stop it. I worry about being left to live alone quite apart from all the basic ME problems.
My illness has always been mainly neurological and I have always lived in my head a lot. My mother took me to the doctors as a child as she kept finding me staring at the wall, but I wasn't epileptic, I'd realised that I could play without taking out toys and having to tidy them up just by imagining it.
Without ME I could have been a great novelist
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