Fatigue – management

  Managing

Here is a detailed guide to pacing, an activity management strategy.^new     It is from MEpedia, a crowd-sourced encyclopaedia of ME/CFS.    The core pages set out consistent guidance.     Click icon to view.

Here is a detailed guide to pacing, an activity management strategy.^new     It is from MEpedia, an encyclopaedia of ME/CFS.     It is crowd-sourced, so articles may have some differences.     The core pages set out consistent set of guidance, though.     It is a project founded by The MEAction Network.     Click icon to view.

More specifically, ME/CFS self-help website has a page about minimising relapses.     This is a key aspect of effective management of ME/CFS.^new     This website also offers guidance on its core pages.

There has been disagreement related to graded exercise plans in NICE’s guidance as recently as Oct 2021.     It is not recommended.

We, at GAIN, are not qualified to give advice, but if it seems difficult, perhaps making the amount of exercise more consistent from one day to the next may be worth a try. 

 ME/Chronic Fatigue

Here is the NHS guide to Chronic Fatigue (CFS/ME).      Click icon to browse.

It seems to have taken a good few years for ME to become widely recognised across the medical profession as a genuine and disabling condition but things seem to have improved a fair bit in that respect.     This has been in no small part due to the work of groups like the ME Association.     They are a UK national support group for people with ME.      Click icon for their website.

Dr Charles Shepherd writes for the ME association.      In a similar vein, here is his response to a BMJ article.²⁰²¹

See also their factsheet: what you need to know^PDF

Also, tap button to download their factsheet, then open in PDF viewer.  

Download PDF – 1.4MB

Autistic fatigue

Autistic fatigue and burnout are gaining wider recognition.    The National autistic society (NAS) has a range of pages about autistic fatigue and burnout.    They set out how the two things are different for autistic people, the causes and the coping strategies.    Select the link that suits you best:

There are weblinks at the bottom of each page that provide more detail.     For example, Ronnie Pinder writes and talks about his constant feeling of tiredness.     He has been diagnosed with autism and is a self-advocate, consultant, mentor and trainer.

Formal study of autistic fatigue still seems to be at an early stage.²⁰²⁴

Formal study of autistic fatigue still seems to be at an early stage.²⁰²⁴

Autistic burnout

Amythest Schaber was talking about autistic burnout before the NAS.     It seemed to be an informal phrase used in the autistic community at the time.     Click play button to watch her video.    She seems to have a clear understanding of the issues and presents them well.    Also:

• They thought I was lazy … when I was just actually autistic.     This is one of many perceptive reflections on life through one female Asperger’s lens.     See article.
• Is it just me, or do other people with autism feel tired all the time?     See autism & tiredness to view article.