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

"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.

 

@Trish - typo - title says 2109.

 

The words intensive rehabilitation fill me with dread. When is that ever appropriate for ME?

 

Strange that they mention the intensive physiotherapy in the same sentence as abrupt extreme cognitive loss, but do not consider any possible connection.

 

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.

 

This sent a cold shiver down my spine.

 

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

 

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.

 

How can you possibly say that based on n=1?

 

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

 

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.

 

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.

 

My interest is in the plausibility of the idea that cognitive ability declined due to disuse. Presumably this is what the authors think.

 

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.

 

It's "alternative" science. It relies on the "second brain", you know, the one that's full of crap.

 

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?

 

Whilst other research shows ...
https://twitter.com/user/status/1130281099525906432