RCPCH conference 2019 abstract: When chronic fatigue syndrome leads to mutism, Moeda et al

Trish

Trish

Moderator
Staff member
When chronic fatigue syndrome leads to mutism

Abstract
Chronic Fatigue Syndrome (CFS) impacts negatively the quality of life, school attendance and social and family functioning. Cognitive dysfunction represents one of the most common and disabling symptoms. We report a severe case of CFS with extreme cognition loss.

A previously healthy and athletic male adolescent developed weakness and fatigue following a viral illness at 10 years old. Mobility progressively deteriorated over two years, requiring wheelchair and admission. Investigations, including brain and spinal MRI, were unremarkable and CFS diagnosed. He started intensive physiotherapy but, while his physical activity improved, an abrupt extreme cognitive loss took place. He reported ‘brain fog’ and formal testing showed incredibly slow cognitive and sensory processing (e.g. score of 4/10 in processing incoming language). After little improvement, he restarted deteriorating and stopped attending school.

Aged 16, he was referred to our specialist CFS team, lying mainly in bed and unable to feed himself. He had diminished ability to speak and slow comprehensive processing. He struggled with significant anxiety, low mood, poor sleep and socially isolation. Further investigation, with EEG and neurological reassessment, was normal. He initiated a regular multi-disciplinary rehabilitation program, including patient and family support, pacing, graded exercise, sleep hygiene and pain relief. He indicated that he chose to use his energy on physical improvement at the expense of communication, hence, while his mobility slowly improved over one year, his cognitive ability notably deteriorated. He became gradually more non-verbal and uncommunicative, initially using signboards, but then refusing. Once his physical activity had markedly improved from being bedbound to walking, he restarted communicating by smiling and using thumbs up/down, slow speech with lags between words, then rapidly increasing to full sentences. After two years of therapy his improvement has been remarkable. Currently he walks, sleeps regularly, speaks fluently and engages with family and friends. He has home-tuition and has future goals.

This case supports that establishing the accurate diagnosis and early symptom management are crucial for rehabilitation in CFS. Cognitive impairment may be significantly debilitating. Physical and cognitive recovery occurs at different stages. A multi-disciplinary patient-centred approach, working with families and local services, can be very effective.
Click to expand...

For more on the conference see this thread:
https://www.s4me.info/threads/me-cf...cs-and-child-health-conference-may-2019.9555/
 
"This case supports that establishing the accurate diagnosis and early symptom management are crucial for rehabilitation in CFS"

Maybe. Or maybe the infection took two years to resolve (or go into remission) and the child improved despite these interventions, or with their help. Point being, perhaps the hero here is the child's immune system.
 
Last edited:
This case supports that establishing the accurate diagnosis and early symptom management are crucial for rehabilitation in CFS. Cognitive impairment may be significantly debilitating. Physical and cognitive recovery occurs at different stages. A multi-disciplinary patient-centred approach, working with families and local services, can be very effective.

This seems to have nothing to do with the story - which in contrast seems to confirm the claim from other patients that intensive rehabilitation methods may lead to rapid deterioration.
 
Perhaps without the intensive physio age 12 the child would not have spent 4 years seriously affected and might have recovered by age 14. By the look of it age 18 he’s still moderate to severe. perhaps his youth is having a protective effect and allowing improvement despite all.
What’s worrying is that our nhs might still be Doing this, led by people who really don’t know enough what they’re doing. When I first became bedridden years ago a visiting head of practice told my parents by looking after me they were keeping me sick and that I should be taken down stairs (which I couldnt climb) for walks around the garden. Casual arrogance. What is surprising to me is that one aspect can seemingly improve as another declined and yet eventually his trajectory was upwards
 
Last edited:
He indicated that he chose to use his energy on physical improvement at the expense of communication, hence, while his mobility slowly improved over one year, his cognitive ability notably deteriorated.
Click to expand...

Am I the only one that finds this strange? It may well be true that the patient preferred physical activity over talking but this shouldn't normally result in notable deterioration of cognitive ability. Am I wrong? The authors seem to suggest that the cause of the cognitive deteriorarion was dis-use.
 
When professionals still do not understand PEM, what chance do kids and their parents stand?
It' s the same crass supposition that " fatigue" is the most important aspect- that somehow cognitive function is not an intrinsic part of an energy envelope :banghead:
 
strategist said:
Am I the only one that finds this strange? It may well be true that the patient preferred physical activity over talking but this shouldn't normally result in notable deterioration of cognitive ability. Am I wrong? The authors seem to suggest that the cause of the cognitive deteriorarion was dis-use.
Click to expand...
To be fair, if I'm over-exerting myself then my ability to communicate and think clearly drops dramatically, in order to get some things done I can't talk to people - my perception is that any momentum I've built is lost as I have to stop, let my brain process what has been said and needs to be said, and then say it, and then cope with any reply.
 
Andy said:
To be fair, if I'm over-exerting myself then my ability to communicate and think clearly drops dramatically, in order to get some things done I can't talk to people - my perception is that any momentum I've built is lost as I have to stop, let my brain process what has been said and needs to be said, and then say it, and then cope with any reply.
Click to expand...
Same. My cognitive ability declines rapidly if I overdo it physically, and a quick drained sort of feeling sets in, with physical weakness and blurriness of thought. Speech is one of the first things to go, which is really frustrating if you're used to being chatty and articulate.
 
Andy said:
To be fair, if I'm over-exerting myself then my ability to communicate and think clearly drops dramatically, in order to get some things done I can't talk to people - my perception is that any momentum I've built is lost as I have to stop, let my brain process what has been said and needs to be said, and then say it, and then cope with any reply.
Click to expand...

My interest is in the plausibility of the idea that cognitive ability declined due to disuse. Presumably this is what the authors think.
 
Me too even as a person with ME at the not severe end I get to the point of over exertion where I can still talk but I can’t concentrate enough and find the right words so it’s a big effort to try to communicate. so just have to stop shut my eyes feet up and take a break. But I can be online for a good few hours each day when I’m at home having a quiet low activity day. I can drive locally. my cognitive limitations are not being able to sustain work level cognitive activity, long conversations or being affected when I do too much physical activity.
 
It is intrinsic to PEM - and distinguishes it from post exertional fatigue in other illnesses - that physical exertion can cause cognitive decline and vice versa. This has been known since long before CFS was invented.

Speech difficulties were a major difficulty for me as a teenager. My voice would go completely and I was terrified anyone would find out. I still have times when I go mute which feel different from when I am too tired to talk. In fact it makes me want to giggle and my husband thinks that is part of what is going wrong rather than just a reaction to the situation, who knows.

The idea that he chose to work on his physical strength so let his speech and cognition deteriorate is a very strange interpretation by them.

With what we know (and they should) about ME he appears to have decided to use his available energy and more to improve certain things so he experienced cognitive payback.
 
Mithriel said:
It is intrinsic to PEM - and distinguishes it from post exertional fatigue in other illnesses - that physical exertion can cause cognitive decline and vice versa. This has been known since long before CFS was invented.

Speech difficulties were a major difficulty for me as a teenager. My voice would go completely and I was terrified anyone would find out. I still have times when I go mute which feel different from when I am too tired to talk. In fact it makes me want to giggle and my husband thinks that is part of what is going wrong rather than just a reaction to the situation, who knows.

The idea that he chose to work on his physical strength so let his speech and cognition deteriorate is a very strange interpretation by them.

With what we know (and they should) about ME he appears to have decided to use his available energy and more to improve certain things so he experienced cognitive payback.
Click to expand...
I do wonder about choice in an asymmetric power situation.
Many kids agree to things to either " please" the authority figure, or in the hope it makes them/ the situation go away.

If you are in an intensive therapy environment , ( do you have parents/ advocates?) , how much control do you have, how free is the choice?
 
You must log in or register to reply here.
Back
Top Bottom