The word ' cognitive dysfunction ' covers a wide range of distressing and disturbing communication difficulties which seem yet again to be down played , under-described in symptom lists and not taken seriously enough by the medical profession.
"Brain fog" is the classic name we use to cover over the horrible reality of living with a brain that is not working properly. In my experience the cognitive dysfunction is profound , intimately connected with and difficult to separate from the interaction with profound noise sensitivity, eye pain, blurred vision , photophobia, loss of motor control and ability to control physical function .
For me cognitive dysfunction causes massive problems with receiving, processing and comprehending information, whether visual, auditory, tactile, from an external source, as well as thinking ,imagining, visualising, remembering and comprehending information and speaking it.
Answering questions directly becomes virtually impossible. I can lose all connection between my thoughts and my ability to speak them.
I may hear but not be able to understand.
I may want to communicate in writing , yet I am completely unable to hold a pen, type a single letter, connect with my thoughts to explain them verbally.
Anything requiring information coming into my brain - then some thought process, followed by action is unlikely to happen 99% of the time.
I simply have breaks to connection and action and communication in every way. This is not conveyed in my opinion nor taken seriously by the medical profession and certainly not in the poor criteria used to supposedly identify ME, which fails us all so profoundly.
We live in effect with a form of dementia, yet it is not treated as such.
We live with damaged brains yet how many doctors do you see representing it like that and trying to treat it with the medical respect and acknowledgement it deserves?
I am able to convey some outward thoughts if they happen to be accessible in my brain at a particular connected moment. They come rarely.
I am frustrated by the lack of integrity surrounding the representation of ME and hope to put together with Greg's help ,at some point, a document to raise awareness of just how very severely affected the person with Severe ME actually is.
Greg also intends highlighting these issues in the coming update of his book," Care for Someone with Severe Myalgic Encephalomyelitis."
If you are able to and are willing to share your own experience, conveying if possible how complex and disabling brain fog actually is - and you do not mind being quoted anonymously, please tell us; it may not be possible to use all material.
We live with horrendously disturbing and distressing symptoms. We deserve much better recognition of what we go through.
Re : Roberts D (2016) Diagnosing and managing chronic fatigue syndrome Nursing in Practice 89 http://www.nursinginpractice.com/article/diagnosing-and-managing-chronic-fatigue-syndrome
Every nurse has a duty to speak up about wrong practice, or the potential to do harm, I have grave concerns over the serious errors and the misrepresentation of Myalgic Encephalomyelitis (ME) contained
in the article "Diagnosing and managing chronic fatigue syndrome".
Last year I was awarded third place in the BJN Nurse of the Year Award, for my contribution to and advocacy for Severe ME. My article “Supporting people with severe myalgic encephalomyelitis”
(Crowhurst 2005) is referenced by NICE. In 2006 I represented people with Severe ME in parliament at the Gibson Inquiry (Hooper 2006). I have conducted a national (Crowhurst 2005) and local survey of Severe ME. (Crowhurst
2007) I am the author of "Severe ME, featuring justice for Karina Hansen" (Crowhurst 2013) and "Severe ME, …
Joint Commisioning Panel for Mental Health has recently published
for commissioners of services for people with medically unexplained
symptoms, specifically listing Myalgic Encephalomyelitis as a "Functional Somatic Disorder". This
is not the first time that an incorrect reclassification has been
attempted. In October
attempt was made to have ME ‘unofficially’
reclassified, as a mental disorder in a U.K adaptation of a WHO
publication, the ‘WHO Guide to Mental Health in Primary Care’, developed by the Collaborating Centre of the Institute of
Psychiatry, London and included under the classification F48.0
After a reprimand from the WHO, an erratum was eventually issued,
acknowledging that the
anyone wishing to challenge this report, the following may be of
Encephalomyelitis (ME) has
by the World Health Organisation since
as an organic neuro…
Myalgic Encephalomyelitis, a neurological disease with multi-system dysfunction is continuing to
disappear from view, lost in a fatigue focus that does not
clinically represent the reality of this severely disabling chronic disease.
There should, you would think, be no compromise on identifying and separating Myalgic Encephalomyelitis from other conditions and recognising the
need for a full medical service with a biomedical pathway, for people with Myalgic Encephalomyelitis (ME).
This is sadly not the case and that has profound implications for those people who have ME especially the most severely affected, who are so isolated as to be almost
invisible to health services, social services and society generally, too ill to engage with them.
It is unlikely that anyone outside the situation really know what life is like for people with Severe and Very Severe ME, who
are house and or bed bound, unable to interact in a normal way and separated from ordinary life by acute environmental hy…