NHS Wales - Primary fatigue service

Sly Saint

Senior Member (Voting Rights)
I've only skimmed through the info on this website.

Fatigue a common symptom seen in ME/CFS and Long COVID.

Fatigue is not the same as ‘tiredness’. We are all familiar with the normal feeling of sleepiness, or tiredness after exercise, a long period of concentrating or ‘burning the candle at both ends’, but fatigue is different and does not feel normal.

Fatigue is an overwhelming sense of tiredness, lack of energy and a feeling of exhaustion.

Fatigue can affect your ability to think clearly, balance on your feet, or organise your thoughts. It can also affect your physical energy levels and can make you much more emotionally unsteady when it is bad.

Fatigue can be worsened or triggered by:

  • stress and anxiety
  • emotional upset
  • multitasking
  • driving
  • lost sleep
  • an irregular eating pattern
  • and many other things that are often specific to the person and are not limited to physical exertion.
You may experience what we call a ‘boom-bust’ effect where some days you feel okay and others you are exhausted. Some people describe fatigue as feeling like ‘moving through treacle’ or ‘hitting a wall’.

If you are suffering from fatigue, it is important that you manage your energy levels throughout the day and try to improve your sleep patterns at night. This is best done using the 3Ps: Prioritising, Planning and Pacing.

The only reference to PEM comes a bit later on this page

Although we use the same word, we consider the fatigue experienced by people living with ME/CFS, Long COVID or Post Viral Fatigue to be central, debilitating, and encompassing PEM/PESE and the array of symptoms that go with it. For this reason we use “Primary Fatigue” to make a distinction.
but the link doesn't appear to work (404).(?)

https://ctmuhb.nhs.wales/services/primary-fatigue-service/fatigue/
 
I'm not sure PEM should be put in the fatigue category no matter how it's worded. But I guess for the time being it's ok?

The risk of categorising PEM under fatigue is that it increases the chance of confusing it with increased fatiguability, that is getting fatigued by an activity more rapidly than previously. Increased fatiguability is an apparent exaggeration of the normal process found in many conditions where as PEM is a qualitatively different phenomenon.
 
I had a lot of fatigue when I was ill with Me/CFS. PEM was moderate for me and lasted a few hours.
 
This page provides a bit more info: https://ctmuhb.nhs.wales/services/primary-fatigue-service/more-about-the-service/

This service is only available to those in the Cwm Taf health board area (Merthyr and S Wales valleys), not all Wales.

Also...
The Primary Fatigue Service Team includes Physiotherapy, Occupational Therapy, a Therapy Technical Instructor, Psychologist, Psychology Assistant, a GP with Special Interest in ME/CFS, Long COVID or Post Viral Fatigue and a Clerical Officer.

This is what ME Association and other ME charities in Wales have to say about healthcare provision for those with ME and Long Covid (as of March 2023):
https://meassociation.org.uk/2023/03/welsh-long-covid-nhs-services-expanded-for-me-cfs/
 
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