Symptoms of chronic fatigue syndrome/myalgic encephalopathy are not determined by activity pacing when measured by the chronic pain coping inventory.

Sly Saint

Senior Member (Voting Rights)
Physiotherapy. 2018 Mar;104(1):129-135. doi: 10.1016/j.physio.2017.07.005. Epub 2017 Aug 4.
Symptoms of chronic fatigue syndrome/myalgic encephalopathy are not determined by activity pacing when measured by the chronic pain coping inventory.
Thompson DP1, Antcliff D2, Woby SR3.
https://www.ncbi.nlm.nih.gov/pubmed/28843450#
Abstract
OBJECTIVES:
Chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) is a chronic illness which can cause significant fatigue, pain and disability. Activity pacing is frequently advocated as a beneficial coping strategy, however, it is unclear whether pacing is significantly associated with symptoms in people with CFS/ME. The first aim of this study was therefore to explore the cross-sectional associations between pacing and levels of pain, disability and fatigue. The second aim was to explore whether changes in activity pacing following participation in a symptom management programme were related to changes in clinical outcomes.

DESIGN:
Cross-sectional study exploring the relationships between pacing, pain, disability and fatigue (n=114) and pre-post treatment longitudinal study of a cohort of patients participating in a symptom management programme (n=35).

SETTING:
Out-patient physiotherapy CFS/ME service.

PARTICIPANTS:
One-hundred and fourteen adult patients with CFS/ME.

MAIN OUTCOME MEASURES:
Pacing was assessed using the chronic pain coping inventory. Pain was measured using a Numeric Pain Rating Scale, fatigue with the Chalder Fatigue Scale and disability with the Fibromyalgia Impact Questionnaire.

RESULTS:
No significant associations were observed between activity pacing and levels of pain, disability or fatigue. Likewise, changes in pacing were not significantly associated with changes in pain, disability or fatigue following treatment.

CONCLUSIONS:
Activity pacing does not appear to be a significant determinant of pain, fatigue or disability in people with CFS/ME when measured with the chronic pain coping index. Consequently, the utility and measurement of pacing require further investigation.

https://www.ncbi.nlm.nih.gov/pubmed/28843450
 
Well if the used the Chalder fatigue scorecard this is more likely a measure of how sh*t that scale is?

I wonder when anyone is going to look at a wider range of symptoms (cognitive, inflammation, muscle weakness etc etc) and measure these over a longer period of time (6 months) against actual heart rate activity. It’s about time they ditched all these stupid “fatigue” scales.
 
The pain scale used was from a study of "chronic musculoskeletal pain intensity measured on a numerical rating scale" extended to chronic pain populations in general.

But ME/CFS is not always a pain disorder, and patients may not have chronic pain. Some have only episodic headaches. Some have no pain at all.

Even CCC doesn't require chronic body pain (headaches count as pain). SEID doesn't require any pain at all for diagnosis.

I'm not convinced that classifying ME/CFS exclusively as a "widespread pain disorder" is valid.
 
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