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. 2023 Oct 14;21:720. doi: 10.1186/s12967-023-04587-5

Table 1.

Description of included studies and data sets. RCT = randomised control trial; UCT = uncontrolled trial

Intervention trials
Refs Type of pacing and duration of intervention (if relevant) Study design (RCT, observational cohort, etc.) Trial registered or not Participants
(n, age, gender, ethnicity, time since diagnosis)
Comorbidities Location Recruitment setting
snd study setting
Adherence Outcome measures Results (improvement or not, baseline to post-pacing intervention) PEDro Score
Antcliff et al. [50]

Six-week rehabilitation programme using the activity pacing framework (6 × 3.5 h sessions)

Programme included understanding of e.g. graded exercise, relaxation and goal setting etc. Pacing was instructed in one session but not informed or standardised by any particular guide or framework

Single-arm, repeated measures study, a non-randomised feasibility study Registered at ClinicalTrials.gov: NCT03497585

n = 107

Predominantly female (86%). Mean age 55.25 ± 12.83

Lower back pain (73.8%), CFS/ME (11.2%),

61.3% of participants reported two or more conditions of chronic pain and/or fatigue. 11.2% participants with CFS/ME, 83% reported ME/CFS as main condition, and 92% at least one comorbidity of LBP (64%), chronic widespread pain (55%), fibromyalgia (64%) or another condition (27%)

Northern England, UK One National Health Service (NHS) pain service

The median number of rehabilitation programme sessions attended of total 6 sessions was five (58.9% participants attended ≥ 5 sessions); 83.2% participants attended at least one activity pacing session and 56.1% attended both activity pacing sessions

100% of participants attended at least one activity pacing specific session and 54 (83.1%) participants attended both activity pacing sessions

APQ-28

CFQ

EQ-5D-5L

GAD-7

NRS

PASS-20

PHQ-9

PSEQ

SF-12

Pacing improved mean scores of all symptoms 5
Kos et al. [48] Coached activity pacing self- management. Three individual therapy sessions of 60–90 min/wk for three consecutive weeks of either “activity pacing self-management” or “Relaxation therapy” RCT with ‘relaxation’ as control Registered at ClinicalTrials.gov (NCT01512342

n = 33 (n = 16 in the experimental group, n = 17 in the control group)

41 ± 11 years

All female

Ethnicity and time since diagnosis not reported

Not reported Belgium

Waiting list for multidisciplinary rehabilitation and informed about the study through email

University Hospital

25% drop-out in the experimental group, 18% in the control group

CFS Symptom list

CIS

COPM

SF-36

Pacing improved COPM performance (33% of group)

Pacing improved satisfaction (42% of group)

Pacing improved CIS

6
Meeus et al. [49] One pacing and self-management education one-to-one session for 30 min RCT with one pain physiology education one-to-one session as control for 30 min Registered at University Hospital Brussels

n = 48

38 ± 11 years

Male = 8 (16.7%)

Ethnicity and time since diagnosis not reported

Not reported Belgium Medical files available at university-based chronic fatigue clinic 5% dropouts

NPQ

PCI

PCS (Dutch)

PPT

TSK

Pain physiology education session group

improved

knowledge of neurophysiology of pain compared to pacing group

Pain physiology education session group

improved Pain catastrophizing scale compared to pacing group

9
Nijs et al. [51] Pacing self-management. Five different visits at 1-week intervals. Wore accelerometer for 24 h for a week Case series Not a registered trial

n = 7

43 ± 13 years

All female

Median illness duration of 96 ± 44 months

Not reported Belgium

University-based chronic fatigue centre

University Hospital

22% dropouts

CFS

CFS-APQ

CFS Symptom list

CIS

COPM

SF-36

VAS

Pacing improved CFS

Pacing improved COPM

Pacing improved VAS

Pacing did not improve SF-36

Pacing did not improve CFS

Pacing did not improve CIS

6
White et al. [35] One year (52 weeks)of activity pacing therapy (APT) RCT with graded exercise therapy (GET) and cognitive behavioural therapy (CBT), or specialised medical care (SMC) as comparators Registered (PACE http://isrctn.org, number ISRCTN54285094.)

n = 641 (recruited), n = 630 (analysed), n = 607 (reported)

39 ± 12 years

76% women

94% white

Duration of illness 32 (16–66) months

Co-morbid psychiatric condition (47%)

Depressive disorder (33%)

UK outpatients attending six specialist chronic fatigue syndrome clinics 8% dropouts

CFQ

CGI

HADS

JSS

London criteria for ME

SF-36

WSAS

Pacing did not improve fatigue, but CBT and GET did

Pacing did not improve physical function, but CBT and GET did

Pacing did not improve physical function, but CBT and GET did

6
Observational studies
 Antcliff et al. [25] No intervention, but assessment of perceptions of pacing. Phone interview after received postal study and APQ-38 questionnaire Cross-sectional observational Not a registered trial

n = 16

Adult patients, and were aged ≥ 18 years

Duration of illness (all ≥ 3 months’ duration)

No mention of sex or ethnicity of patients

Chronic low back pain, chronic widespread pain, fibromyalgia North West England, UK

Physiotherapy out-patients department in NHS Trust

Physiotherapy out-patients

Not reported

APQ-38

CPCI

PARQ

Most participants who implemented pacing reported it was beneficial 3
Antcliff et al. [63] No intervention, but assessment of perceptions of pacing Cross-sectional observational Not a registered trial

n = 257

Adult patients

Age, sex, and ethnicity are not reported

Chronic low back pain, chronic widespread pain, fibromyalgia and CFS/ME UK

Physiotherapy out-patients department in NHS Trust

Postal questionnaires and physiotherapy at hospital

83% enrolled were included in final analyses

APQ-38

APQ-26

CFQ

HADS

NRS

PASS-20

SF-12

Activity adjustment was associated with higher levels of current pain, depression and avoidance, and lower levels of physical function

Activity consistency was associated with lower levels of physical fatigue, depression and avoidance and higher levels of physical function

Activity progression was associated with higher levels of current pain

Activity planning was significantly associated with lower levels of physical fatigue, and activity acceptance was associated with higher levels of current pain and avoidance

4
 BacME Association [55] No intervention, but assessment of perceptions of pacing Cross-sectional observational Not a registered trial

n = 1428 (CBT = 493; GET = 233; pacing = 226)

78% female

Time since diagnosis: 1–2 years 2%; 3–4 years 6%; 3–4 years 13%; 5–6 years 12%; 7–10 years 20%; 11–21 years 29%; 21–30 years 13%; > 30 years 5%

Age and ethnicity not reported

Not reported UK

Online platform (ME Association website) launched May 2012

Open to anyone with ME, CFS or post-viral fatigue syndrome

N/A

Appropriateness of treatment experience

Common ME symptoms severity (several)

Disability benefits

Employment and education

Illness severity

PEM

Pacing was reported to be the most effective, safe, acceptable and preferred form of activity management 3
 Brown et al. [60] No intervention, but assessment of energy envelope Cross-sectional observational Not a registered trial

n = 91

83% female

87% white

Not reported Chicago metropolitan area, USA

Newspaper and physician referrals, and support groups

46% were referred by physicians, 34%

through media advertisements, and 20% from “other sources”

Setting unclear

20% drop out

bCOPE

EEQ

PEM from CFSMQ

SF-36

Cluster 1 (individuals highly outside the energy envelop)

experienced high levels of PEM severity and impaired physical

function

Cluster 2 (those better staying within their energy envelope) experienced higher levels of physical functioning, and lower PEM severity

Cluster 3 (symptomatic and mildly overextended) was comprised of individuals who were the least outside of their energy envelope, but were impaired on physical function, and had high levels of PEM

3
 Brown et al. [54]

One year of 13, 45 min sessions of CBT with GET, anaerobic activity, cognitive coping skills, and relaxation bi-weekly

Treatments were collapsed in this paper

Analysis concerned participants within and outside their energy envelope

Prospective observational Not a registered trial

n = 44

82% female

91% white

At least 18 years of age

Not reported Chicago, USA

Physician referrals, media advertisements, and ME/CFS support groups

Setting unclear

61% drop out

Actigraph

CFS

EEQ

FSS

SF-36

Pacing improved

physical

function and fatigue compared to those outside their energy envelope

3
 Geraghty et al. [52] No intervention, but assessment of perceptions of pacing and other treatments. Online survey open for 4 months Cross-sectional observational compared to BacME Association (2015) survey Not a registered trial

n = 1428

compared to n = 16,665

Average illness duration 4.4 years

Most respondents were female (79%)

Not reported UK Online platform advertised nationally and open for 4 months N/A

Appropriateness of treatment experience

Common ME symptoms severity (several)

Disability benefits

Employment and education

Illness severity

PEM

(same as BacME Association [2015] survey)

Pacing improved symptoms (44% of respondents), or worsened symptoms (14% of respondents) 2
 Jason et al. [53] No intervention, but assessment of energy envelope Prospective observational Not a registered trial

n = 110

At least 18 years old

Physically capable of attending scheduled sessions

Sex and ethnicity not reported

Not reported Chicago, USA

Newspaper and physician referrals, and support groups

46% were referred by physicians, 34%

through media advertisements, and 20% from “other sources”

Setting unclear

3.5% drop out

BAI

BDI-II

BPI

CFS

DSM-IV

FSS

GSE

PSS

PSQI

SF-36

QOLS

Pacing was associated with less PEM incidence, less depression, less anxiety, less fatigue, better sleep, better quality of life, better physical functioning and vitality, less difficulties with work or daily activities

Pacing was associated with less frequency of exercise avoidance, and less fatigue impairing daily activities

3
 O’Connor et al. [58] No intervention, but assessment of energy envelope Cross-sectional observational Registered s (institutional review board approval #LREC 1 – 08/H0906/5)

n = 181

83% female

98% Caucasian

Age and Time since diagnosis not reported

Not reported UK and Norway Hospital setting Not reported

DSQ

EEQ

SF-36

Pacing was associated with better physical function scores, total symptom scores, and engaged in more hours of activity 4
Sub-analysis of pace
 Bourke et al. [61]

PACE Trial re-analysis so APT

Duration of 52 weeks

RCT with GET, CBT, and SMC as comparators Registered (PACE http://isrctn.org, number ISRCTN54285094.)

n = 641

Around 90% at least caucasian

Mean age 39 years

Mostly female 76%

Depressive disorder 34% UK Patients from secondary-care specialist CFS clinic Drop out 5%

ACR

CDC criteria

Oxford criteria for CFS

CBT and GET improved pain more than APT and SMC 7
 Dougall et al. [59]

PACE Trial re-analysis so APT

Follow-up interviews were conducted 12, 24, and 52 weeks after randomisation

RCT with GET, CBT, and SMC as comparators Registered (PACE http://isrctn.org, number ISRCTN54285094.)

n = 641

Sex, age and ethnicity not reported

Not reported UK

Patients from six secondary care clinics with a

diagnosis of CFS

Not reported

AES

CBRQ

CDC criteria

CFS

DSM-IV

PHQ-15

HADS

JSS

London criteria for ME

Oxford criteria for CFS

SF-36

SEMCD

Pacing worsened physical function (25% of group) more than SMC (18%), GET (11%) and CBT (9%)

No other between-group differences

4
 Sharpe et al. [56]

PACE Trial re-analysis so APT

12, 24, and 52 week, and long-term follow-up measures

2 year follow-up of RCT with GET, CBT, and SMC as comparators Registered (PACE http://isrctn.org, number ISRCTN54285094.)

n = 481 (75%) participants from the PACE trial

39 ± 12 years

76% female

94% white

Duration of illness 32 (16–66) months

Psychiatric disorder (46%)

Depressive disorder (32%)

UK PACE trial database

75% of participants from the PACE Trial responded

Adherence N/A

CFQ

PCGI

SF-36

WSAS

Pacing improved fatigue and physical function similar to CBT and GET at follow-up 7
 White et al. [57] PACE Trial re-analysis so APT. 52 weeks follow-up after randomisation RCT with GET, CBT, and SMC as comparators Registered (PACE http://isrctn.org, number ISRCTN54285094.)

n = 640

39 ± 12 years

76% female

94% white

Duration of illness 32 (16–66) months

Co-morbid psychiatric condition (47%)

Depressive disorder (33%)

UK PACE trial database 0.2% drop-out

CDC criteria

CFQ

CGI

London ME criteria

Oxford criteria for CFS

SF-36

Pacing participants were less likely to recover (8%) than the CBT group (22%), or GET group (22%)

Pacing participants were as recover (as the SMC group (7%)

6

APT = Adaptive Pacing Therapy. BMI = Body mass index. CBRQ = Cognitive Behavioural Responses Questionnaire. CBRQ-SF = Cognitive Behavioural Responses Questionnaire symptom focussing sub-scale. CBT = Cognitive Behaviour Therapy. CFQ = Chandler fatigue questionnaire. CIS = Checklist individual strength questionnaire for fatigue. DSQ = DePaul Symptom Questionnaire. EDAq: Avoidance resting score on Symptom Interpretation questionnaire. FSS = Fatigue severity scale. GAD = Generalised anxiety disorder. GET = Graded Exercise Therapy. HADS A = Hospital Anxiety and Depression Scale anxiety score. JSS = Jenkins sleep scale. 6MWT = Six metres walked in six minutes. PASS-20 = Escape and avoidance subscale of the Pain Anxiety Symptoms Scale-20. SF-36 = 36-Item Short Form Health Survey questionnaire. UK = United Kingdom. USA = United States of America. WSAS = Work and Social Adjustment Scale