Resting-state functional connectivity, cognition, and fatigue in response to cognitive exertion: a novel study in adolescents with CFS (2019) Josev

MyalgicE said:
I’m profiling Dr Josev in Meet The Scientists soon and wrote a summary of this study:
https://meaustralia.net/2019/06/24/teenagers-with-me-and-cfs-use-same-energy-to-think/

Reading the ME Research UK summary was interesting (and interesting that Australia’s scientists seek fund from so far away as the situation here is dire).
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The adolescents with Paediatric ME and CFS had slower reaction times before cognitive exertion and even slower after exertion.

That could be key. Also in adults.

In my case I noticed the more severe I became the slower it was.

It graduly improved with taking the immunemodulator.

A while ago I noticed not only I can respond more quickly but even my memory is much better. I responded very fast when somebody mentioned something from a long time ago. The memory came back in a split second.
 
From the MERUK write up it reads as though testing followed a 90mins exertion period - if delayed impact/ delayed energy availability (like PEM) is part of the illness profile would it not have been illuminating to have looked at a number of time points. 90 mins exertion may impact more significantly after a few hours/ next day/ 48 hours later.
That may have been more interesting?
 
lansbergen said:
In my case I noticed the more severe I became the slower it was.

It graduly improved with taking the immunemodulator.

A while ago I noticed not only I can respond more quickly but even my memory is much better. I responded very fast when somebody mentioned something from a long time ago. The memory came back in a split second.
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Hi @lansbergen, can I ask which immune modulator you have been taking?
 
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Interestingly, CFS/ME adolescents reported significantly lower levels of subjective sleep quality than healthy adolescents on the ASWS, despite similar sleep hygiene levels on the ASHS.
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Just wanted to highlight this finding from the study again for the NICE review committee - @Keela Too; @adambeyoncelowe

Fine if the guidelines suggest sleep hygiene issues are discussed if required, but it should be made clear that poor sleep hygiene is not an underlying cause of ME/CFS. Excessive focus on sleep hygiene, e.g. not using a laptop in bed, complicated bedtime rituals, from medical professionals doesn't make life easier and can easily feel like patient-blaming.
 
lansbergen said:
I think that makes it worse. To much strain.

I just let nature take its course and my insommia disappeared with overall improvement.
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Sleep hygiene was a disaster - it panned out as less overall sleep and worry. Medical staff cannot understand that it will not work for everyone. Most recent appointment saw this rearing its head again with a patient blaming tone that sleep had never been addressed ( loud sigh)
 
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