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talkhealth forums • Cognition and Personality Change
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Cognition and Personality Change

Posted: Wed Aug 14, 2013 7:32 pm
by Fogbound
I find cognitive problems the most disabling and distressing symptom. It is having a serious negative impact on my career, social life, mental health and wellbeing. In addition to short-term memory problems, poor concentration, etc, my long term memory and general knowledge (which used to be good) are poor. I also feel that my personality has changed and I have lost my “self”. Are these issues a “normal” part of CFS/ME or could something else be going on?

Re: Cognition and Personality Change

Posted: Thu Aug 15, 2013 8:21 am
by stonebird
I am surprised Dr Miller described your symptoms as "unusual"; neurocognitive problems - not just "brain fog" , made worse by physical or mental exertion , are one of the most frequent and disabling symptoms associated with ME .

People with ME have been shown to have large impairments in simple and complex information processing speed and in tasks requiring working memory over a sustained period of time .

Re: Cognition and Personality Change

Posted: Thu Aug 15, 2013 4:10 pm
by onlyme2013
I agree that these symptoms are not unusual. I have spoken to other parents (of children with ME) and they report, like us, similar symptoms in their children.
And again, I wonder how GET alone can be treating these symptoms? The post-exertional fatigue my son experiences makes all these symptoms worse.

Re: Cognition and Personality Change

Posted: Thu Aug 15, 2013 8:01 pm
by Fogbound
Thanks for your responses. I suspect the personality change may be due to the memory loss, because I’ve gone from being someone who loved to learn and was full of useless (and some useful!) information, to someone who is constantly saying “I don’t know”, “I don’t remember” and blagging/bluffing. And inevitably there is a loss of confidence and an inability to fully engage in conversation.

For me, this cognitive impairment has the greatest negative impact on all aspects of life (all activities require thought) and I feel utterly helpless because of the lack of effective treatment for this.

As individuals we are all responsible for managing our own health and wellbeing, however when you are unable to problem-solve, think with any sort of clarity, and have difficulty retaining information, there needs to be more than self-management skills and CBT offered by the medical profession. Managing anything is difficult when you don't have a functioning brain!

Is there any current/planned research into addressing cognitive problems?

Re: Cognition and Personality Change

Posted: Sat Aug 17, 2013 10:15 am
by dorothyt
Hi Fogbound
When I read your post it was like you were describing me. When you try to explain how you feel to people you kind of get a vacant expression back as though nobody can even begin to understand what you describe. I had to give up work as an experienced nurse due to these symptoms as it had impacted so greatly within my role and I felt colleague's eyes on me like I was brain dead. At meetings when usually my contribution was respected and taken account of and with the ME I would stop mid sentence either couldn't find the word I wanted to use or lost the train of thought. Embarrassing, lost confidence and the rest....
Nobody appears to be there to help or address any of these issues!!
Good luck and thanks for highlighting!!

Re: Cognition and Personality Change

Posted: Sat Aug 17, 2013 10:47 am
by Dr Charles Shepherd
You may find it helpful to look at some of the other discussions that have been taking place to questions about brain fog/cognitive dysfuntion in ME/CFS

This is a reply I posted to one such question:

Along with fatigue and pain, cognitive dysfunction/brain fog (= problems with memory, concentration, information processing, word finding etc) is another very disabling feature of this illness.

At present we know very little about what causes cognitive dysfunction in ME/CFS. There are a number of theories - perhaps the most plausible being that it is related to problems with the autonomic nervous system and the way this part of the nervous system helps to control blood flow to certain parts of the brain.

But without a better understanding of what causes cognitive dysfunction it's very difficult to treat.

We have an MEA information leaflet that goes into more detail about both cause and management - but I would add that drugs and supplements are of no clear value at present

MEA website and pdf literature form: http://www.meassociation.org.uk