An exploratory study into chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia

Can anyone get hold of this, i.e. does anyone here have the necessary log-in permissions?
Or isn't it worth bothering with?

Source: University of the West of Scotland

Date: November 16, 2017

URL: http://ethos.bl.uk/OrderDetails.do?did=1&uin=uk.bl.ethos.738487

An exploratory study into the symptoms of chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia
----------------------------------------------------------
Pamela Gair McKay

- School of Health, Nursing, and Midwifery, University of the West of Scotland

 

I have just asked my son's girlfriend ( about to graduate from UWS) if she can save a PDF copy - will let you know

 

remember this is the land of Dr Pelosi...

 

I logged into my ethos account which anyone anywhere can get and was able to get a full copy. In general as I recall they ask for you not to share files as I recall so don’t think I will post file but anyone can get as I say.

 

I'd like to see this too.

 

Table of Contents
Abstract i
List of Tables x
List of Figures xiii
List of Appendices xv
Abbreviations xvi
Publications Arising
from this study
xix
Chapter 1 Introduction Page 1
Chapter 2 Literature Review Page 5
2.0 Introduction to literature review Page 5
2.1 Historical Perspectives Page 7
2.2 Epidemiology Page 11
2.3 Prevalence Page 11
2.4 Diagnosing CFS/ME Page 12
2.4.1 Diagnostic criteria available for CFS/ME Page 15
2.4.2 Management of CFS/ME Page 17
2.4.2.1 Pharmacological approaches to CFS/ME Page 18
2.4.2.2 Non-pharmacological approaches to CFS/ME Page 19
2.5 Impact of the attitudes of professionals towards diagnosis
and management of CFS/ME
Page 22
2.6 Diagnostic criteria for FM Page 22
2.6.1 Diagnosing FM Page 23
2.6.2 Management of FM Page 27
2.6.2.1 Pharmacological approaches to FM Page 27
2.6.2.2 Non-pharmacological approaches to FM Page 30
2.6.3 Impact of attitudes of professionals towards diagnosis and
management of FM
Page 31
2.7 Debating the single syndrome Page 32
2.8 The proposed study into CFS/ME and FM Page 36
v
Chapter 3 Background Literature for the Questionnaires Page 38
3.0 Introduction to the literature review for the questionnaires to
measure the symptoms
Page 38
3.1 Overview of questionnaires suitable for measuring the
symptoms of CFS/ME and FM
Page 38
3.2 Consideration of the Psychometric properties of the
Questionnaires
Page 39
3.2.1 Reliability Page 39
3.2.2 Validity Page 41
3.3 Reviewed questionnaires Page 44
3.4 Questionnaires Page 49
3.5 Specific Questionnaires and Criteria for CFS/ME and FM Page 50
3.5.1 American CDC Diagnostic criteria for CFS/ME and
Symptom Inventory
Page 50
3.5.2 American College of Rheumatology diagnostic criteria for
FM
Page 53
3.5.3 Fibromyalgia Impact Questionnaire Page 54
3.6 Generic Questionnaires to measure the symptoms of
CFS/ME and FM
Page 57
3.6.1 Questionnaire to measure Pain Page 57
3.6.2 Questionnaire to measure Fatigue Page 60
3.6.3 Questionnaire to measure Sleep Page 63
3.6.4 Questionnaire to measure Health Related Quality of Life Page 66
3.6.5 Questionnaire to measure Anxiety and Depression Page 70
3.6.6 Questionnaire to measure Locus of Control Page 72
3.6.7 Questionnaire to measure Self Esteem Page 76
Chapter 4 Methods Page 81
4.0 Introduction to methods Page 81
4.1 Hypothesis/ Objectives Page 81
4.2 Defining the Research Methodology Page 82
4.2.1 Methodology Page 84
4.3 Study Design Page 86
4.3.1 Inclusion and Exclusion criteria of the sample Page 86
vi
4.4 Recruitment process Page 87
4.5 Ethical Considerations Page 89
4.6 Study Consent Procedure Page 90
4.7 Anonymity/Confidentiality/Data Storage Page 93
4.8 Sample Size Page 94
4.9 Protocol for Questionnaire Selection Page 99
4.10 Data Analysis Page 101
4.10.1 The CFS/ME and FM sample background Page 101
4.10.2 Reliability of the questionnaires in the CFS/ME and FM
groups
Page 102
4.10.3 The t-tests for comparing the Means of the CFS/ME and
FM groups
Page 103
4.11 Confirmatory Factor Analysis (CFA) Structural Equation
Modelling (SEM)
Page 105
4.11.1 Creation of the graphical model Page 107
4.11.2 Formulation of the Reflective Models Page 110
4.12 The procedure for performing SEM Page 113
4.12.1 Specify the model to be measured Page 113
4.12.1.2 Estimation of the model Page 114
4.12.1.3 Improving Model Fit Page 116
4.13 The Multi-group Invariance test procedure Page 118
4.13.1 The Unconstrained model Page 119
4.13.2 Measurement Weights model Page 120
4.13.3 The Measurements Intercepts model Page 120
4.13.4 The Weights Intercepts and Covariance model Page 121
4.13.5 The cause of Non Invariance Page 121
4.14 Model Fit assessment Page 122
Chapter 5 Results Page 126
5.0 Introduction Page 126
5.1 Part One Website Activity Page 126
5.2 Characteristics of the sample Page 127
5.3 Part 2 Results for the Mean and Standard Deviation from
the questionnaires for CFS/ME and FM
Page 132
vii
5.3.1 Introduction Page 132
5.3.2 American CDC Symptom Inventory Page 132
5.3.3 The American ACR number of pain points Page 136
5.3.4 Results from the FIQ Page 138
5.3.5 Results from the McGill Pain Questionnaire Page 138
5.3.6 Results from the Multidimensional Fatigue Inventory Page 150
5.3.7 Results from the Pittsburgh Sleep Quality Index Page 151
5.3.8 Results from the Health Related Quality of Life Page 152
5.3.9 Results from the Hospital Anxiety and Depression Scale Page 153
5.3.10 Results from the Multidimensional Health Locus of Control Page 155
5.3.11 Results from the Rosenberg Self esteem Scale Page 156
5.4 Part Three results Introduction Page 157
5.4.1 Reliability testing of the questionnaires measuring CFS/ME
and FM
Page 158
5.4.2 Exploring differences between CFS/ME and FM t-tests and
Mann-Whitney U tests
Page 160
5.4.3 The American CDC Symptom Inventory results Page 161
5.4.4 The Fibromyalgia Impact Questionnaire results Page 164
5.4.5 The McGill Pain Questionnaire results Page 166
5.4.6 The Multidimensional Fatigue Inventory results Page 168
5.4.7 The Pittsburgh Sleep Quality Index results Page 169
5.4.8 The Health Related Quality of Life SF-36 V2 results Page 170
5.4.9 The Hospital Anxiety and Depression Scale results Page 172
5.4.10 The Multidimensional Health Locus of Control results Page 173
5.4.11 The Rosenberg Self Esteem Scale results Page 174
5.5 Measuring the constructs across CFS/ME and FM using
SEM and Invariance Testing
Page 176
5.5.1 The American CDC Symptom Inventory SEM results Page 176
5.5.2 The Fibromyalgia Impact Questionnaire SEM results Page 182
5.5.3 The McGill Pain Questionnaire SEM results Page 187
5.5.4 The Multidimensional Fatigue Inventory SEM results Page 190
5.5.5 The Pittsburgh Sleep Quality Index SEM SEM results Page 193
5.5.6 The Health Related Quality of Life SF-36 V2 SEM results Page 197
viii
5.5.7 The Hospital Anxiety and Depression Scale SEM results Page 202
5.5.8 The Multidimensional Health Locus of Control SEM results Page 207
5.5.9 The Rosenberg Self Esteem Scale SEM results Page 213
5.6 CFS/ME and FM Reconciled Page 216
Chapter 6 Discussion Page 221
6.1 Introduction Page 221
6.2 Characteristics of the sample of CFS/ME and FM
participants
Page 221
6.3 Confirmation of a diagnosis of CFS/ME and/or FM Page 223
6.4 Confirmation of fulfilling the opposing criteria for CFS/ME
and FM
Page 225
6.4.1 The relationship between the CFS/ME group and the ACR
criteria for FM
Page 226
6.4.2 The relationship between the FM group and the American
CDC Criteria for CFS
Page 228
6.5 Questionnaire Reliability Page 229
6.5.1 Reliability of the questionnaires confirmed Page 230
6.5.2 Reliability of the questionnaires Page 230
6.5.2.1 Reliability of the American CDC Symptom Inventory Page 230
6.5.2.2 Reliability of the McGill Pain Questionnaire Page 231
6.5.2.3 Reliability of the Multidimensional Fatigue Inventory Page 232
6.5.2.4 Reliability of the Pittsburgh Sleep Quality Index Page 233
6.5.2.5 Reliability of the Multidimensional Health Locus of Control Page 234
6.6 Discussion of the Symptoms Page 235
6.6.1 The symptoms recorded by the American CDC Symptom
Inventory for CFS
Page 237
6.6.2 The symptoms recorded by the Fibromyalgia Impact
Questionnaire
Page 238
6.6.3 The symptoms recorded by the McGill Pain Questionnaire Page 239
6.6.4 The symptoms recorded by the Multidimensional Fatigue
Inventory
Page 243
6.6.5 The symptoms recorded by the Pittsburgh Sleep Quality
Index
Page 245
6.6.6 The symptoms recorded by the Health Related Quality of
Life SF-36 V2
Page 246
ix
6.6.7 The symptoms recorded by the Hospital Anxiety and
Depression Scale
Page 248
6.6.8 The symptoms recorded by the Multidimensional Health
Locus of Control Form C
Page 250
6.6.9 The symptoms recorded by the Rosenberg Self Esteem
Scale
Page 252
6.7 Confirming the relationships between CFS/ME and FM Page 254
6.7.1 Invariance confirmed Page 255
6.7.2 Non Invariance confirmed Page 258
6.8 CFS/ME and FM Reconciled Page 264
6.9 Study Limitations
Page 267
Chapter 7 Conclusions and Recommendations Page 270
7.0 Introduction Page 270
7.1 Contribution to Knowledge Page 270
7.2 Implications for the future Page 273
References Page 277
Bibliography Page 346
Appendices Page 360
x
List of Tables
Table 1 Cronbach’s alpha levels for reliability (Polit and Beck, 2013). Page 41
Table 2 Questionnaires selected for Study Page 49
Table 3 Summary of Reliability and Validity of the Questionnaires Page 80
Table 4 Key for HADS Questions Page 109
Table 5 Classification of selected Goodness of Fit indexes Page 125
Table 6
Total number of people who attempted each section of the 100
questionnaires
Page 127
Table 7 Gender and age distribution of the CFS/ME and FM participants Page 128
Table 8 Educational achievement of participants Page 129
Table 9 Mean and Standard Deviation for the CFS/ME and FM groups for the
American Centre for Disease Control Symptom Inventory (Fukuda et al,
1994)
Page 133
Table 10
Number of participants who responded that they had experienced each
symptom of the American CDC Symptom Inventory in the past 6 months
Page 134
Table 11
The symptom which participants confirmed bothered them the most
during the past six months on the American CDC Symptom Inventory
Page 134
Table 12
Results of the Mean and Standard Deviations on the Fibromyalgia
Impact Questionnaire for CFS/ME and FM
Page 138
Table 13
The Mean and Standard Deviation of the scores for each of the four
domains and the total score of the MPQ
Page 139
Table 14
The MPQ most popular pain descriptor words selected from each group
of words by the CFS/ME and FM participants
Page 140
Table 15
First grouping of words to describe how participants pain changes over
time on the MPQ
Page 141
Table 16
Second grouping of words to describe how participants pain changes
over time on the MPQ
Page 142
Table 17
Third grouping of words to describe how participants pain changes over
time on the MPQ
Page 142
Table 18 Description of Pain at its worst on the MPQ for CFS/ME and FM Page 143
Table 19 Description of Pain at its best on the MPQ for CFS/ME and FM Page 143
Table 20 Total Mean and Standard Deviation for the MFI Page 150
Table 21 Mean and Standard Deviation for the total score of the PSQI for CFS/ME
and FM
Page 151
xi
Table 22 Means and Standard Deviation for the Totals of the SF-36 V2 for
CFS/ME and FM
Page 152
Table 23 Number and % of participants of the sample with poor Health Related
Quality of Life measured by the SF-36 V2 for CFS/ME and FM
Page 153
Table 24 Mean and Standard Deviation for the total HADS scores for CFS/ME
and FM
Page 154
Table 25 Mean and Standard Deviation for the total score of the MHLOC form C
for CFS/ME and FM
Page 155
Table 26 Mean and Standard Deviation for the Rosenberg Self Esteem Scale for
CFS/ME and FM
Page 156
Table 27 Reliability results for the questionnaires measuring the symptoms of
CFS/ME and FM
Page 158
Table 28 The American CDC Symptom Inventory Levene’s test and t-test results Page 161
Table 29 The Fibromyalgia Impact Questionnaire (FIQ) Levene’s test and t-test
results
Page 164
Table 30 The McGill Pain Questionnaire Levene’s test and t-test results Page 166
Table 31 Multidimensional Fatigue Inventory Levene’s test and t-test results Page 168
Table 32 Pittsburgh Sleep Quality Index Levene’s test and t-test results Page 169
Table 33 Health Related Quality of Life SF-36 V2 Levene’s test and t-test results Page 170
Table 34 Hospital Anxiety and Depressions Scale Levene’s test and t-test results
Page 172
Table 35 Multidimensional Health Locus of Control Levene’s test and t-test results
Page 173
Table 36 Rosenberg Self Esteem Scale Levene’s test and t-test results Page 174
Table 37 Summary of the results from the t-tests and Mann Whitney U tests for all
the questionnaires used to measure the symptoms of CFS/ME and FM
Page 175
Table 38 Goodness of Fit tests for the American CDC Symptom Inventory
Baseline Model for CFS/ME and FM
Page 177
Table 39 Goodness of Fit Statistics Invariance testing for the American CDC
Symptom Inventory Baseline model for CFS/ME and FM
Page 180
Table 40 Significance level of individually constrained items of the American CDC
Symptom Inventory
Page 181
Table 41 Goodness of Fit tests for the Fibromyalgia Impact Questionnaire
Baseline Model for CFS/ME and FM
Page 182
Table 42 Goodness of Fit Test for the FIQ results for Invariance Testing for
CFS/ME and FM
Page 186
Table 43 Chi-square tests of the FIQ results of the significance level with each
item constrained individually for CFS/ME and FM
Page 187
Table 44 Goodness of Fit Tests for the McGill Pain Questionnaire Baseline Model
for CFS/ME and FM
Page 188
Table 45 Invariance testing results for the Goodness of Fit Tests for the MPQ for
the CFS/ME and FM groups
Page 190
xii
Table 46 Results for the Baseline Model Goodness of Fit Tests for the
Multidimensional Fatigue Inventory for the CFS/ME and FM groups
Page 191
Table 47 Results for Invariance Testing of the Multidimensional Fatigue Inventory Page 192
Table 48 Goodness of Fit Tests for the PSQI Baseline Model for the CFS/ME and
FM groups
Page 193
Table 49 Goodness of Fit Statistics for Invariance Testing for the PSQI Page 196
Table 50 Goodness of Fit Test for the SF-36 V2 Baseline Model for CFS/ME and
FM
Page 197
Table 51 Goodness of Fit Statistics of the Invariance testing for the Health
Related Quality of Life SF-36 V2 questionnaire
Page 200
Table 52 Goodness of Fit Tests for the Hospital Anxiety and Depression Scale
Baseline Model
Page 202
Table 53 Goodness of Fit Statistics for Invariance Testing for the HADS for the
CFS/ME and FM group
Page 206
Table 54 The significance level when each item on the HADS is constrained
individually
Page 206
Table 55 Goodness of Fit Tests for the MHLOC Form C Page 207
Table 56 Goodness of Fit Indices for Invariance testing for the MHLOC Form C for
CFS/ME and FM
Page 212
Table 57 Goodness of Fit Tests for the RSES Baseline Model without
modifications
Page 213
Table 58 Goodness of Fit Indices for Invariance testing for the RSES for CFS/ME
and FM
Page 216
Table 59 Goodness of Fit Tests for the Syndrome Model Baseline without
Modifications
Page 217
Table 60 Goodness of Fit Indices for Invariance testing for Syndrome Model for
CFS/ME and FM
Page 218
Table 61 Summary of the results from the Invariance testing of the questionnaires
used to measure the symptoms of CFS/ME and the FM groups
Page 220
xiii
List of Figures
Figure 1 Image of the 18 tender points used to diagnose Fibromyalgia as
recommended by the American College of Rheumatology (Wolfe et al.,
1990)
Page 24
Figure 2 Consent Procedure for Study Page 91
Figure 3 Example Baseline SEM Model for the HADS (Zigmond and Snaith,
1983).
Page 109
Figure 4 Direct Reflective Model Page 110
Figure 5 Marital Status of CFS/ME and FM participants Page 128
Figure 6 Employment status of CFS/ME and FM participants Page 130
Figure 7 Country of residence of CFS/ME and FM participants Page 131
Figure 8 Medical professionals who diagnosed CFS/ME and FM participants Page 131
Figure 9 American CDC Symptom Inventory number of symptoms selected by
CFS/ME and FM participants
Page 135
Figure 10 The ACR diagnostic criteria. Number of pain points selected by the
CFS/ME and FM participants
Page 137
Figure 11 Results from the posterior view of the body adapted from the MPQ
incorporating the American College of Rheumatology Pain points for
CFS/ME and FM
Page 145
Figure 12 Results from the anterior view of the containing the American College of
Rheumatology Pain points for CFS/ME and FM
Page 146
Figure 13 Results MPQ anterior view of body with no pain points indicated for
CFS/ME and FM
Page 148
Figure 14 Results MPQ posterior view of head with no pain points indicated for
CFS/ME and FM
Page 149
Figure 15 Unconstrained Structural Equation Model of the American CDC
Symptom Inventory
Page 177
Figure 16 Unconstrained Modified Model American CDC Symptom Inventory Page 178
Figure 17 Fully Constrained modified model American CDC Symptoms Inventory
for both CFS/ME and FM
Page 180
Figure 18 Unconstrained Model of the FIQ Page 183
Figure 19 Modified Unconstrained Model of the FIQ Page 184
Figure 20 Fully Constrained Modified FIQ Model Page 185
Figure 21 Unconstrained Baseline Model of the MPQ for both CFS/ME and FM Page 188
Figure 22 Fully Constrained MPQ Model for CFS/ME and FM Page 189
Figure 23 Unconstrained Baseline Model for the MFI Page 191
Figure 24 Fully Constrained MFI Model for CFS/ME and FM Page 192
Figure 25 Unconstrained Baseline Model for the PSQI Page 194
xiv
Figure 26 Modified Unconstrained PSQI Model Page 195
Figure 27 Fully Constrained Modified Model for the PSQI Page 196
Figure 28 Unconstrained Baseline Model for the SF-36 V2 Health Related Quality
of Life Questionnaire
Page 198
Figure 29 Modified Unconstrained Model for the SF-36 V2 Health Related Quality
of Life for CFS/ME and FM
Page 199
Figure 30 Fully Constrained Modified Model for the Health Related Quality of Life
Questionnaire SF-36 V2 for CFS/ME and FM
Page 200
Figure 31 Fully Constrained Modified Measurements and Intercepts Model for the
SF-36 V2
Page 201
Figure 32 Baseline Unconstrained Model for the HADS Page 203
Figure 33 Unconstrained Modified Model for the HADS for CFS/ME and FM Page 204
Figure 34 Fully Constrained Modified Model for the HADS for CFS/ME and FM Page 205
Figure 35 Baseline Unconstrained Model MHLOC Form C Page 208
Figure 36 Unconstrained Modified Model for the MHLOC Form C Page 210
Figure 37 Fully Constrained Modified Model for the MHLOC Form C Page 211
Figure 38 Unconstrained Baseline Model for the RSES Page 214
Figure 39 Fully Constrained Model for the RSES Page 215
Figure 40 Unconstrained Syndrome Model Page 217
Figure 41 The Unconstrained Modified Syndrome Model Page 218
xv
List of Appendices
Appendix 1 Tests for CFS/ME a Process of Elimination Page 360
Appendix 2 Criteria for Diagnosing CFS/ME (NICE, 2007) Page 361
Appendix 3 Current US Case Definition of Chronic Fatigue Syndrome (Fukuda
et al., 1994) and Symptom Inventory
Page 362
Appendix 4 Fibromyalgia Impact Questionnaire (Burckhardt, 1997) Page 370
Appendix 5 McGill Pain Questionnaire (Melzack, 1975) Page 372
Appendix 6 Screen Shot from Website of MPQ with ACR pain points Page 373
Appendix 7 Multidimensional Fatigue Inventory (Smets, 1985) Page 374
Appendix 8 Pittsburgh Sleep Quality Index (Buysse et al., 1989) Page 375
Appendix 9 SF-36 V2 Health Related Quality of Life Page 378
Appendix 10 Hospital Anxiety and Depression Scale (Zigmond and Snaith, 1983)
Page 381
Appendix 11 Multidimensional health Locus of Control Form C (Wallston, 1995) Page 382
Appendix 12 Rosenberg Self Esteem Scale (Rosenberg, 1967) Page 383
Appendix 13 Advert for Research Page 384
Appendix 14 Ethical Approval Letter Page 385
Appendix 15 Screen Shot of Welcome page from Website Page 386
Appendix 16 Participant Information Sheet Page 387
Appendix 17 Scholarship Letter Page 390
Appendix 18 Demographic Questionnaire Page 391
Appendix 19 Revised ACR Criteria Page 396
Appendix 20 Journal Article Arising from Research Page 398
xvi
Abbreviations
American CDC
Symptoms
Inventory
American Centre for Disease Control Symptoms Inventory

 

i have got a copy of this now .PM if of interest

 

Possibly people with fibromyalgia who go to a forum are more ill or even more likely to have ME/CFS than those with fibromyalgia on average? I’ve a relative with fibromyalgia who has always been able to work who wouldn’t go to fora.

Some doctors have a tendency to give a diagnosis of fibromyalgia even when patient had ME/CFS. I know people who have gone to a pain clinic who have said “I have ME” and the doctor replied “No, you have fibromyalgia”/similar.

I think our movement could be bigger if more of those with fibromyalgia were assessed for ME/CFS.

I suspect this could happen with some other comorbidities also e.g. migraine, IBS, etc.