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severe cognitive symptoms

Postby jodie1000 on Mon Aug 19, 2013 6:32 pm

I am finding the cognitive symptoms with longterm moderate to severe M.E. life destroying. I can't manage my affairs properly or maintain friendships or anything because my brain is so often shut down and slow and can't process what people are saying. Most of the time I can't even articulate in my own mind what I think about anything but can recognise it if somebody else describes their experience or thoughts on something. My GP says my mind is overtired. I cant think forwards or plan or respond to the unexpected. Are all these symptoms attributable to M.E.? Psychiatric illness has been ruled out by three separate psychiatrists, that basically all said I was in denial about my physical illness. What kind of professional help should I seek? Sometimes I wonder if it is a bit like dissociation disorder but I think that refers to things feeling unreal whereas this is I literally can't think to the extent I am not fit to do the basic activities of living.
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Re: severe cognitive symptoms

Postby Dr Charles Shepherd on Mon Aug 19, 2013 9:33 pm

Jodie

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.

Cognitive dysfunction can range from mild to severe and for some people with ME/CFS it isTHE most disabling part of their 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

If cognitive dysfunction is more severe, in the way you describe, it may be helpful to have a consultation with a clinical psychologist who deals with this area of medicine. I suggest you discuss this possibility with your GP.

MEA website and pdf literature form: http://www.meassociation.org.uk
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MB BS, Honorary Medical Adviser, ME Association
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Re: severe cognitive symptoms

Postby Dr Charles Shepherd on Mon Aug 19, 2013 9:34 pm

Information on psychological approaches that may be of help when cognitive dysfunction is more severe:

http://www.iapt.nhs.uk
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Re: severe cognitive symptoms

Postby suedodkin on Tue Aug 20, 2013 8:38 am

I just wanted to say " me too " to this post. It is a horrible place to be, but reassuring to know others are similarly affected, I spent months trying to hide what was going on for fear I was loosing my mind!!
Being able to share thoughts symptoms fears and remedies is so very helpful.
I feel empowered......
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Re: severe cognitive symptoms

Postby Genevieve on Tue Aug 20, 2013 5:08 pm

Dr Millar said:

"I agree with Charles that "brain fog" can be one of the most distressing, disabling and frustrating features of CFS/ME and as we have no physiological mechanism by which we can explain it, we do not have any potential targets for drug development at present."

Firstly, thank you and all the other medical experts for giving your time and giving people a chance to ask questions on this online clinic.

My questions:

1. The precise physiological mechanism behind the brain fog and cognitive symptoms may not yet be known, however I'm sure you will agree that there is an appreciable amount of objective evidence of neurological, immunological, inflammatory and biochemical abnormalities etc in ME/CFS patients.

Do you not think that all this evidence goes a long way to explaining, in broad terms, the existence and physiological basis of these symptoms?

I ask because your answer comes over as if there is no known physiological evidence which could explain these symptoms and I think that is the wrong impression to be giving people.


2. In an earlier thread, you stated your view that ME/CFS was a medically unexplained syndrome, which is synonymous with functional somatic syndrome, somatoform disorder.

As you are the medical adviser to Action for ME, I can only assume this is the view held by AfME, otherwise it would be a nonsense for them to have you as their medical advisor.

So can you please confirm that AfME do view ME/CFS as a MUS/FSS/SD?

3. In light of all the biomedical evidence do you think it is scientifically and ethically acceptable for doctors to be promoting the PACE trial and the use of CBT and GET for ME/CFS?

I ask this because as you will know the trial ignored ALL the biomedical evidence which clearly shows ongoing physical disease processes perpetuating the disease, yet the premise on which the trial was based was that ME/CFS is perpetuated by wrong illness beliefs, fear of exercise and deconditioning. The trial clearly stated that the use of CBT was to correct these supposed wrong illness beliefs and GET was to overcome the supposed fear of exercise and deconditioning.

So the trial was based on a scientifically invalid premise and the use of CBT/GET as a means of correcting the supposed wrong beliefs, fear etc is invalid, which would explain the poor results.

Thanks in advance for taking the time to answer these questions,

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