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1.  Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis 
Background
Needs-based resource allocation is fundamental to equitable care provision, which can meet the often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This has posed challenges both for those providing and those seeking support providers, in building shared understanding of the condition and of actions to address it. This qualitative study reports on needs for equity in health and social care expressed by adults living with CFS/ME.
Methods
The participants were 35 adults with CFS/ME in England, purposively selected to provide variation in clinical presentations, social backgrounds and illness experiences. Accounts of experienced needs and needs-related encounters with health and social services were obtained through a focus group (n = 6) and semi-structured interviews (n = 35). These were transcribed and needs related topics identified through data-led thematic analysis.
Findings
Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME impacts and regain life control, in three thematic areas: (1) Illness symptoms, functional limitations and illness management; (2) practical support and social care; (3) financial support. Access of people with CFS/ME to support from health and social services was seen to be constrained by barriers stemming from social, cultural, organisational and professional norms and practices, further heightened for disadvantaged groups including some ethnic minorities. These reduced opportunities for their illness to be explained or associated functional limitations and social disadvantages to be addressed through social support. Participants sought more understanding of bio-psycho-social aspects of CFS/ME, of felt needs of people with CFS/ME and of human rights and disability rights, for providing person-centred, equitable care.
Conclusions
Changes in attitudes of health practitioners, policy makers and general public and more flexibly organised health and social care provision are needed to address equity issues in support needs expressed by people with CFS/ME, to be underpinned by research-based knowledge and communication, for public and professional education. Policy development should include shared decision-making and coordinated action across organizations working for people with CFS/ME, human rights and disadvantaged groups. Experiences of people with CFS/ME can usefully inform an understanding of equity in their health and social care.
doi:10.1186/1475-9276-10-46
PMCID: PMC3229491  PMID: 22044797
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis; thematic analysis; social support; experiences; recognition; social welfare
2.  Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care 
BMC Medicine  2011;9:91.
Background
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or chronic fatigue syndrome (CFS) has been used to name a range of chronic conditions characterized by extreme fatigue and other disabling symptoms. Attempts to estimate the burden of disease have been limited by selection bias, and by lack of diagnostic biomarkers and of agreed reproducible case definitions. We estimated the prevalence and incidence of ME/CFS in three regions in England, and discussed the implications of frequency statistics and the use of different case definitions for health and social care planning and for research.
Methods
We compared the clinical presentation, prevalence and incidence of ME/CFS based on a sample of 143,000 individuals aged 18 to 64 years, covered by primary care services in three regions of England. Case ascertainment involved: 1) electronic search for chronic fatigue cases; 2) direct questioning of general practitioners (GPs) on cases not previously identified by the search; and 3) clinical review of identified cases according to CDC-1994, Canadian and Epidemiological Case (ECD) Definitions. This enabled the identification of cases with high validity.
Results
The estimated minimum prevalence rate of ME/CFS was 0.2% for cases meeting any of the study case definitions, 0.19% for the CDC-1994 definition, 0.11% for the Canadian definition and 0.03% for the ECD. The overall estimated minimal yearly incidence was 0.015%. The highest rates were found in London and the lowest in East Yorkshire. All but one of the cases conforming to the Canadian criteria also met the CDC-1994 criteria, however presented higher prevalence and severity of symptoms.
Conclusions
ME/CFS is not uncommon in England and represents a significant burden to patients and society. The number of people with chronic fatigue who do not meet specific criteria for ME/CFS is higher still. Both groups have high levels of need for service provision, including health and social care. We suggest combining the use of both the CDC-1994 and Canadian criteria for ascertainment of ME/CFS cases, alongside careful clinical phenotyping of study participants. This combination if used systematically will enable international comparisons, minimization of bias, and the identification and investigation of distinct sub-groups of patients with possibly distinct aetiologies and pathophysiologies, standing a better chance of translation into effective specific treatments.
doi:10.1186/1741-7015-9-91
PMCID: PMC3170215  PMID: 21794183
3.  The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers 
BMC Public Health  2011;11:402.
Background
Diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS is largely based on clinical history, and exclusion of identifiable causes of chronic fatigue. Characterization of cases and the impact of interventions have been limited due to clinical heterogeneity and a lack of reliable biomarkers for diagnosis and outcome measures. People with ME/CFS (PWME) often report high levels of disability, which are difficult to measure objectively. The well being of family members and those who care for PWME are also likely to be affected. This study aimed to investigate the functional status and well being of PWME and their lay carers, and to compare them with people with other chronic conditions.
Methods
We used a cross sectional design to study 170 people aged between 18 and 64 years with well characterized ME/CFS, and 44 carers, using SF-36 v2™. Mean physical and mental domains scores (scales and component summaries) were calculated and compared internally and externally with reference standards for the general population and for population groups with 10 chronic diseases.
Results
SF-36 scores in PWME were significantly reduced, especially within the physical domain (mean norm-based Physical Component Summary (PCS) score = 26.8), but also within the mental domain (mean norm-based score for Mental Component Summary (MCS) = 34.1). The lowest and highest scale scores were for "Role-Physical" (mean = 25.4) and "Mental Health" (mean = 36.7) respectively. All scores were in general lower than those for the general population and diseased-specific norms for other diseases. Carers of those with ME/CFS tended to have low scores in relation to population norms, particularly within the mental domain (mean = 45.4).
Conclusions
ME/CFS is disabling and has a greater impact on functional status and well being than other chronic diseases such as cancer. The emotional burden of ME/CFS is felt by lay carers as well as by people with ME/CFS. We suggest the use of generic instruments such as SF-36, in combination of other objective outcome measurements, to describe patients and assess treatments.
doi:10.1186/1471-2458-11-402
PMCID: PMC3123211  PMID: 21619607
4.  A Disease Register for ME/CFS: Report of a Pilot Study 
BMC Research Notes  2011;4:139.
Background
The ME/CFS Disease Register is one of six subprojects within the National ME/CFS Observatory, a research programme funded by the Big Lottery Fund and sponsored by Action for ME. A pilot study in East Anglia, East Yorkshire, and London aimed to address the problem of identifying representative groups of subjects for research, in order to be able to draw conclusions applicable to the whole ME/CFS population.
While not aiming for comprehensive population coverage, this pilot register sought to recruit participants with ME/CFS in an unbiased way from a large population base. Those recruited are constituting a cohort for long-term follow-up to shed light on prognosis, and a sampling frame for other studies.
Findings
Patients with unidentified chronic fatigue were identified in GP databases using a READ-code based algorithm, and conformity to certain case definitions for ME/CFS determined. 29 practices, covering a population aged 18 to 64 of 143,153, participated.
510 patients with unexplained chronic fatigue were identified. 265 of these conformed to one or more case definitions. 216 were invited to join the register; 160 agreed. 96.9% of participants conformed to the CDC 1994 (Fukuda) definition; the Canadian definition defined more precisely a subset of these. The addition of an epidemiological case definition increased case ascertainment by approximately 4%. A small-scale study in a specialist referral service in East Anglia was also undertaken.
There was little difference in pattern of conformity to case definitions, age or sex among disease register participants compared with subjects in a parallel epidemiological study who declined to participate.
One-year follow-up of 50 subjects showed little change in pain or fatigue scores. There were some changes in conformity to case definitions.
Conclusions
Objective evaluation indicated that the aim of recruiting participants with ME/CFS to a Disease Register had been fulfilled, and confirmed the feasibility of our approach to case identification, data processing, transmission, storage, and analysis. Future developments should include expansion of the ME/CFS Register and its linkage to a tissue sample bank and post mortem tissue archive, to facilitate support for further research studies.
doi:10.1186/1756-0500-4-139
PMCID: PMC3118997  PMID: 21554673
5.  Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adults: a qualitative study of perspectives from professional practice 
BMC Family Practice  2010;11:89.
Background
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) can cause profound and prolonged illness and disability, and poses significant problems of uncertainty for healthcare professionals in its diagnosis and management. The aim of this qualitative study was to explore the nature of professional 'best practice' in working with people with CFS/ME.
Methods
The views and experiences of health care practitioners (HCPs) were sought, who had been judged by people with CFS/ME themselves to have been particularly helpful and effective. Qualitative semi-structured interviews following a topic guide were carried out with six health care practitioners. Interviews were audio-recorded, transcribed and subject to thematic analysis.
Results
Five main themes were developed: 1) Diagnosis; 2) Professional perspectives on living with CFS/ME; 3) Interventions for treatment and management; 4) Professional values and support for people with CFS/ME and their families; 5) Health professional roles and working practices. Key findings related to: the diagnostic process, especially the degree of uncertainty which may be shared by primary care physicians and patients alike; the continued denial in some quarters of the existence of CFS/ME as a condition; the variability, complexity, and serious impact of the condition on life and living; the onus on the person with CFS/ME to manage their condition, supported by HCPs; the wealth of often conflicting and confusing information on the condition and options for treatment; and the vital role of extended listening and trustful relationships with patients.
Conclusions
While professional frustrations were clearly expressed about the variability of services both in primary and specialist care and continuing equivocal attitudes to CFS/ME as a condition, there were also strong positive messages for people with CFS/ME where the right services are in place. Many of the findings from these practitioners seen by their patients as helping them more effectively, accord with the existing literature identifying the particular importance of listening skills, respect and trust for establishing a therapeutic relationship which recognises key features of the patient trajectory and promotes effective person-centred management of this complex condition. These findings indicate the need to build such skills and knowledge more systematically into professional training informed by the experience of specialist services and those living with the condition.
doi:10.1186/1471-2296-11-89
PMCID: PMC2994803  PMID: 21078171
6.  The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review 
BMC Public Health  2009;9:458.
Background
We aimed to review systematically the needs for support in managing illness and maintaining social inclusion expressed by people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)
Methods
We carried out a systematic review of primary research and personal ('own') stories expressing the needs of people with CFS/ME. Structured searches were carried out on Medline, AMED, CINAHL, EMBASE, ASSIA, CENTRAL, and other health, social and legal databases from inception to November 2007. Study inclusion, data extraction and risk of bias were assessed independently in duplicate. Expressed needs were tabulated and a conceptual framework developed through an iterative process.
Results
Thirty two quantitative and qualitative studies, including the views of over 2500 people with CFS/ME with mainly moderate or severe illness severity, met the inclusion criteria. The following major support needs emerged: 1) The need to make sense of symptoms and gain diagnosis, 2) for respect and empathy from service providers, 3) for positive attitudes and support from family and friends, 4) for information on CFS/ME, 5) to adjust views and priorities, 6) to develop strategies to manage impairments and activity limitations, and 7) to develop strategies to maintain/regain social participation.
Conclusions
Although the studies were heterogeneous, there was consistent evidence that substantial support is needed to rebuild lives. Gaining support depends - most importantly - on the ability of providers of health and social care, colleagues, friends and relatives, and those providing educational and leisure services, to understand and respond to those needs.
doi:10.1186/1471-2458-9-458
PMCID: PMC2799412  PMID: 20003363
7.  Involve the patient and pass the MRCGP: investigating shared decision making in a consulting skills examination using a validated instrument 
Background
Shared decision making is an important aspect of patient centredness. Lack of this consulting behaviour is a common reason for failure in the Membership of the Royal College of General Practitioners (MRCGP) consulting skills examination.
Aim
To investigate candidates' performance in shared decision making and overall performance in the MRCGP consulting skills assessment compared with an independently validated measure, the OPTION (‘observing patient involvement’) scale.
Design
Cross-sectional study.
Setting
MRCGP examination, UK.
Participants
Two hundred and fifty-two consultations submitted by 36 GPs submitting seven consultations per videotape.
Method
A stratified sample of 63 candidates, 21 each from fail, pass and merit selected from candidates in the MRCGP consulting skills examination, were approached for participation. Participants' examination videotapes were independently assessed for shared decision making using the OPTION scale by two non-clinical raters.
Results
Thirty-six candidates (of 63; 57%) who participated were no different from non-participants. Candidates who passed the ‘sharing management options’ in the MRCGP had significantly higher OPTION scores than those who did not (35.4 versus 27.3; mean difference = 8.1, P = 0.044). There was a significant difference between OPTION scores of MRCGP candidates with ‘fail’ and ‘pass’ (including pass with merit): 28.6 versus 36.1, 95% confidence interval CI = 1.13 to 13.87. Scores decreased as clinician age increased but were not significantly associated with sex of GP, age or sex of patient or consultation duration. The probability of passing the MRGCP increased as OPTION scores increased.
Conclusion
This study demonstrated concurrent validity of the MRCGP consulting skills assessment of sharing management options against an independent validated instrument for shared decision making, the OPTION scale. Candidates who performed best in the MRCGP exhibited high scores with OPTION. This study provides the basis for further work to demonstrate evidence for the potential of training for professional assessment to improve consulting competence.
PMCID: PMC1927094  PMID: 17132353
assessment of competence; cross-sectional studies communication; referral and consultation; shared decision making
8.  Complex consultations and the ‘edge of chaos’ 
Complexity theory has attracted considerable attention in recent years, both within medicine and in the wider world. Its themes of uncertainty and non-linearity resonate deeply with the experience of working in general practice. Describing the consultation as a complex, adaptive system provides a coherent theoretical basis for understanding the consultation, which has so far been lacking. Understanding the consultation as a complex, adaptive system offers insights into the consultation of that may prove to be of practical use to clinicians.
PMCID: PMC1266243  PMID: 15667766
chaos; complexity theory; consultation
9.  New perspectives—approaches to medical education at four new UK medical schools 
BMJ : British Medical Journal  2004;329(7461):327-331.
With the expansion in UK medical student numbers, four new medical schools have been established. The authors, all senior faculty members at these new schools at the time of writing, discuss how much the schools have in common in their approaches to medical education
PMCID: PMC506854  PMID: 15297339
16.  Self-help in primary care: preliminary findings of a study in Liverpool 
Self-help groups are an important, but often neglected, resource in primary care. This paper reports the preliminary findings of a study of the origins and natural history of self-help groups in Liverpool, and considers the role for general practitioners in mobilizing resources to facilitate community participation in health through this diverse, and informal, sector of the health care system.
PMCID: PMC1711689  PMID: 3256669
18.  Evaluation of a controlled drinking minimal intervention for problem drinkers in general practice (the DRAMS scheme) 
Sixteen general practitioners participated in a controlled trial of the Scottish Health Education Group's DRAMS (drinking reasonably and moderately with self-control) scheme. The scheme was evaluated by randomly assigning 104 heavy or problem drinkers to three groups – a group participating in the DRAMS scheme (n = 34), a group given simple advice only (n = 32) and a non-intervention control group (n = 38). Six month follow-up information was obtained for 91 subjects (87.5% of initial sample). There were no significant differences between the groups in reduction in alcohol consumption, but patients in the DRAMS group showed a significantly greater reduction in a logarithmic measure of serum gamma-glutamyl-transpeptidase than patients in the group receiving advice only. Only 14 patients in the DRAMS group completed the full DRAMS procedure. For the sample as a whole, there was a significant reduction in alcohol consumption, a significant improvement on a measure of physical health and well-being, and significant reductions in the logarithmic measure of serum gamma-glutamyl transpeptidase and in mean corpuscular volume. The implications of these findings for future research into controlled drinking minimal interventions in general practice are discussed.
PMCID: PMC1711039  PMID: 3448228
19.  General practitioners' care of the elderly: studies of aspects of workload 
This paper reports trends in the volume and nature of general practitioners' contacts with the elderly patients on their NHS lists in Dundee during the 1970s. It forms part of a larger project involving 32 general practitioners collaborating in a continuing study concerning the introduction of the first health centre in Dundee.
During the decade contacts with the elderly increased as a proportion of the general practitioners' total work, broadly commensurate with the increase in Dundee's elderly population. Indirect contacts, mainly reissue of prescriptions for longterm medication, showed a greater proportional increase than direct consultations. Home visiting of the elderly remained relatively constant, while house calls to other age groups declined. Hospital referrals remained a small proportion of the general practitioners' work. Entry into a health centre was not associated with obvious changes in patterns of workload.
If more might be done in planning and implementing changes in care of the elderly at general practice level, such changes should be the result of consensus among the professionals concerned, and should take account of the views of recipients of care.
Images
PMCID: PMC1959834  PMID: 6502555
20.  Epiglottitis 
A case of acute epiglottitis due to Haemophilus influenzae is described. The problems of making this diagnosis as early as possible are discussed, with a review of the literature.
PMCID: PMC1972448  PMID: 6982331

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