Severe ME/CFS cognitive impairment

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andybee44
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by andybee44 on Thu Aug 15, 2013 12:30 pm

Severe ME/CFS cognitive impairment

My wifehas ME. I have looked after her as her sole carer for 18 years while her condition was mild (1995-1998), moderate (1999-2009) and severe since 2010.
In spite of every effort to make “pacing” work for her, the progress of her illness has been always downwards. It is like a ratchet – each dip can never be undone. I’m not sure if this is a pattern seen in a recognisable sub-group of ME patients, but it is unremitting and very depressing.
Six weeks ago she suddenly went from about 30% on the AYME Ability Scale to 5-10% - probably due to a virus - and has since lost her speech, is chewing with real difficulty, has very weak arms and extremely high anxiety levels in addition to significant brain fog.
She desperately wants help and advice on how to overcome the highly significant severe cognitive impairment that she is experiencing. Her brain is racing. She calls it “brain shriek” and is terrified by what is happening to her.
We need advice on how to tackle this severe cognitive impairment, so that she can become more calm, less frightened and anxious. Are there any techniques – beyond the “visualisation”, “relaxation” methods already mentioned in Charles Shepherd’s book or Emily Collingridge’s AYME book (both of which are, and have been, our bibles!)?
Any advice you could give would be helpful.
Thank you,
Last edited by andybee44 on Fri Aug 16, 2013 10:33 am, edited 2 times in total.

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Dr Charles Shepherd
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Joined: Wed Aug 07, 2013 11:30 am

by Dr Charles Shepherd on Thu Aug 15, 2013 12:40 pm

Re: Severe ME/CFS cognitive impairment

Andy

We have already covered possible causes and management of cognitive dysfunction (problems with short term memory, concentration, information processing, word find ability etc) in a previous posting - you should be able to find it

In summary:

Cognitive dysfunction (CD) is a very characteristic feature of ME/CFS and the disability it causes can range from mild to severe - as your history shows

We do not know what causes CD in ME/CFS but one plausible explanation is that it is related to autonomic nervous system dysfunction (part of the nervous system that controls heart rate, blood pressure etc) and that this may result in decreased blood flow to key parts of the brain that are involved with mental activity.

There are no simple solutions - drugs, supplements - to managing this aspect of ME/CFS but practical self-help measures can be very useful

The MEA has an information sheet covering both causation and management of CD

MEA website and pdf literature order form: http://www.meassociation.org.uk
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

andybee44
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Joined: Thu Aug 15, 2013 12:26 pm

by andybee44 on Thu Aug 15, 2013 3:35 pm

Re: Severe ME/CFS cognitive impairment

Thank you Dr Shepherd, I will explore the other streams to find the information that has already been put out. I have all or most of the MEA helpsheets and will revisit them again. Best regards, Andy

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