Apologies in advance for a long post! I am seeking advice for my daughter who has had M.E. for the past seven years. The thing that she finds hardest to live with is the impact on her brain. Cognitive functioning has always been a particularly bad symptom and was one of the first to develop, before many of the physical effects.
Her most severe phase, where she was down to about 5-10% functioning, lasted a year. However, she has developed new cognitive symptoms since she came out of that. For example, feeling less conscious/aware. She says it's like blacking out, though she can see fine - as if she's just about to lose consciousness completely.
She finds it very hard to rest when she needs to, even when trying not to focus on anything or think, it feels like her brain is pushed past it's limit. She never feels her brain rests at all.
She's extremely sensitive to both light and sound. Since the ME began she's found it difficult to take in new information or remember things. At her worst, she often couldn't recognise people around her and follow the simplest conversation. Her recognition's improved but she still has great difficulty maintaining a conversation. If there are more than two people talking, it's impossible for her to follow. She used to listen to audio books quietly in the dark, but now feels like any stimuli is more than her brain can cope with.
There's a recurring pattern where when her other ME symptoms are better, most notably: having more physical energy; more light tolerance and being able to stand and walk further, she says her brain feels, "so stretched and unhealthy, like something's ripping apart in it or about to explode ." It feels like worse cognition could be a response to other symptoms. She feels that not enough oxygen/blood is reaching her brain, like it's in a constant seizure.
In conjunction with the consciousness/awareness problems, she's noticed an increase in compulsive behaviours (comfort eating etc.).
She had an MRI scan of the brain, which didn't indicate any swelling or damage. She had an assessment by a neurologist (who arranged the MRI) but their only advice was to try graded exercise. She's also seen a psychiatrist who was unable to suggest anything to help. We've tried a range of supplements such as ginseng and L-glutamine but haven't noticed any benefits. She also practised meditation for a long time but is no longer able to.
We are interested in any treatments or tests that other people have found useful for improving their cognitive function.
Her most severe phase, where she was down to about 5-10% functioning, lasted a year. However, she has developed new cognitive symptoms since she came out of that. For example, feeling less conscious/aware. She says it's like blacking out, though she can see fine - as if she's just about to lose consciousness completely.
She finds it very hard to rest when she needs to, even when trying not to focus on anything or think, it feels like her brain is pushed past it's limit. She never feels her brain rests at all.
She's extremely sensitive to both light and sound. Since the ME began she's found it difficult to take in new information or remember things. At her worst, she often couldn't recognise people around her and follow the simplest conversation. Her recognition's improved but she still has great difficulty maintaining a conversation. If there are more than two people talking, it's impossible for her to follow. She used to listen to audio books quietly in the dark, but now feels like any stimuli is more than her brain can cope with.
There's a recurring pattern where when her other ME symptoms are better, most notably: having more physical energy; more light tolerance and being able to stand and walk further, she says her brain feels, "so stretched and unhealthy, like something's ripping apart in it or about to explode ." It feels like worse cognition could be a response to other symptoms. She feels that not enough oxygen/blood is reaching her brain, like it's in a constant seizure.
In conjunction with the consciousness/awareness problems, she's noticed an increase in compulsive behaviours (comfort eating etc.).
She had an MRI scan of the brain, which didn't indicate any swelling or damage. She had an assessment by a neurologist (who arranged the MRI) but their only advice was to try graded exercise. She's also seen a psychiatrist who was unable to suggest anything to help. We've tried a range of supplements such as ginseng and L-glutamine but haven't noticed any benefits. She also practised meditation for a long time but is no longer able to.
We are interested in any treatments or tests that other people have found useful for improving their cognitive function.