Category: Medical Care

Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians

Abstract:

This review was written from the viewpoint of the treating clinician to educate health care professionals and the public about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It includes: the clinical definition of ME/CFS with emphasis on how to diagnose ME/CFS; the etiology, pathophysiology, management approach, long-term prognosis and economic cost of ME/CFS. After reading this review, you will be better able to diagnose and treat your patients with ME/CFS using the tools and information provided.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic medical condition characterized by symptom clusters that include: pathological fatigue and malaise that is worse after exertion, cognitive dysfunction, immune dysfunction, unrefreshing sleep, pain, autonomic dysfunction, neuroendocrine and immune symptoms. ME/CFS is common, often severely disabling and costly. The Institute of Medicine (IOM) reviewed the ME/CFS literature and estimates that between 836,000 and 2.5 million Americans have ME/CFS at a cost of between 17 and 24 billion dollars annually in the US. The IOM suggested a new name for ME/CFS and called it Systemic Exertion Intolerance Disease (SEID). SEID’s diagnostic criteria are less specific and do not exclude psychiatric disorders in the criteria.

The 2010 Canadian Community Health Survey discovered that 29% of patients with ME/CFS had unmet health care needs and 20% had food insecurity–lack of access to sufficient healthy foods. ME/CFS can be severely disabling and cause patients to be bedridden. Yet most patients (80%) struggle to get a diagnosis because doctors have not been taught how to diagnose or treat ME/CFS in medical schools or in their post-graduate educational training. Consequently, the patients with ME/CFS suffer.

They are not diagnosed with ME/CFS and are not treated accordingly. Instead of compassionate care from their doctors, they are often ridiculed by the very people from whom they seek help.

The precise etiology of ME/CFS remains unknown, but recent advances and research discoveries are beginning to shed light on the enigma of this disease including the following contributors: infectious, genetic, immune, cognitive including sleep, metabolic and biochemical abnormalities.

Management of patients with ME/CFS is supportive symptomatic treatment with a patient centered care approach that begins with the symptoms that are most troublesome for the patient. Pacing of activities with strategic rest periods is, in our opinion, the most important coping strategy patients can learn to better manage their illness and stop their post-exertional fatigue and malaise. Pacing allows patients to regain the ability to plan activities and begin to make slow incremental improvements in functionality.

 

Source: Bested AC, Marshall LM. Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians. Rev Environ Health. 2015;30(4):223-49. doi: 10.1515/reveh-2015-0026. https://www.ncbi.nlm.nih.gov/pubmed/26613325

 

What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise

Abstract:

BACKGROUND: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), in its most severe clinical presentation, can result in patients becoming housebound and bedbound so unable to access most available specialist services. This presents particular clinical risks and treatment needs for which the National Institute for Health and Care Excellence (NICE) advises specialist medical care and monitoring. The extent of National Health Service (NHS) specialist provision in England for severe CFS/ME is currently unknown.

OBJECTIVES: To establish the current NHS provision for patients with severe CFS/ME in England.

SETTING AND PARTICIPANTS: All 49 English NHS specialist CFS/ME adult services in England, in 2013.

METHOD: Cross-sectional survey by email questionnaire.

PRIMARY OUTCOME MEASURES: Adherence to NICE guidelines for severe CFS/ME.

RESULTS: All 49 services replied (100%). 33% (16/49) of specialist CFS/ME services provided no service for housebound patients. 55% (27/49) services did treat patients with severe CFS/ME and their interventions followed the NICE guidelines. The remaining services (12%, 6/49) offered occasional or minimal support where funding allowed. There was one NHS unit providing specialist inpatient CFS/ME provision in England.

CONCLUSIONS: Study findings highlight substantial variation in access to specialist care for patients with severe presentation of CFS/ME. Where treatment was provided, this appeared to comply with NICE recommendations for this patient group.

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

 

Source: McDermott C, Al Haddabi A, Akagi H, Selby M, Cox D, Lewith G. What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise. BMJ Open. 2014 Jul 1;4(6):e005083. doi: 10.1136/bmjopen-2014-005083. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4078780/ (Full article)

 

Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: a meta synthesis of qualitative studies

Abstract:

BACKGROUND: The NICE guideline for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) emphasises the need for an early diagnosis in primary care with management tailored to patient needs. However, GPs can be reluctant to make a diagnosis and are unsure how to manage people with the condition.

METHODS: A meta synthesis of published qualitative studies was conducted, producing a multi-perspective description of barriers to the diagnosis and management of CFS/ME, and the ways that some health professionals have been able to overcome them. Analysis provided second-order interpretation of the original findings and developed third-order constructs to provide recommendations for the medical curriculum.

RESULTS: Twenty one qualitative studies were identified. The literature shows that for over 20 years health professionals have reported a limited understanding of CFS/ME. Working within the framework of the biomedical model has also led some GPs to be sceptical about the existence of the condition. GPs who provide a diagnosis tend to have a broader, multifactorial, model of the condition and more positive attitudes towards CFS/ME. These GPs collaborate with patients to reach agreement on symptom management, and use their therapeutic skills to promote self care.

CONCLUSIONS: In order to address barriers to the diagnosis and management of CFS/ME in primary care, the limitations of the biomedical model needs to be recognised. A more flexible bio-psychosocial approach is recommended where medical school training aims to equip practitioners with the skills needed to understand, support and manage patients and provide a pathway to refer for specialist input.

 

Source: Bayliss K, Goodall M, Chisholm A, Fordham B, Chew-Graham C, Riste L, Fisher L, Lovell K, Peters S, Wearden A. Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: a meta synthesis of qualitative studies. BMC Fam Pract. 2014 Mar 7;15:44. doi: 10.1186/1471-2296-15-44. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3973969/ (Full article)

 

Chronic fatigue syndrome: a personalized integrative medicine approach

Abstract:

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a relatively common illness, yet despite considerable investigation, current treatments have modest benefits, and the prognosis remains poor. Because CFS/ME is a heterogeneous disorder with diverse etiological factors and pathological features, a patient-centered integrative framework based on modifiable physiological and environmental factors may offer hope for more effective management and better clinical outcomes. An individualized approach may also help target interventions for subgroups most likely to respond to specific treatments. This review summarizes a number of avenues for integrative management, including dietary modification, functional nutritional deficiencies, physical fitness, psychological and physical stress, environmental toxicity, gastrointestinal disturbances, immunological aberrations, inflammation, oxidative stress, and mitochondrial dysfunction. A personalized, integrative approach to CFS/ME deserves further consideration as a template for patient management and future research.

 

Source: Brown B. Chronic fatigue syndrome: a personalized integrative medicine approach. Altern Ther Health Med. 2014 Jan-Feb;20(1):29-40. https://www.ncbi.nlm.nih.gov/pubmed/24445354

 

News from the CDC: chronic fatigue syndrome (CFS) and standardized patient videos - a novel approach to educating medical students about CFS

The Centers for Disease Control and Prevention (CDC), Division of High-Consequence Pathogens and Pathology, Chronic Viral Diseases Branch houses CDC’s chronic fatigue syndrome (CFS) research and education program. The program’s provider education and outreach initiative has conducted research and implemented activities to educate healthcare professionals about CFS diagnosis and management, including evaluating knowledge, attitudes, and beliefs among US providers [1], assessing best methods for CFS continuing medical education (CME) [2], and developing a train-the-trainer program [3]. In 2012, meetings with stakeholders and evaluations of existing outreach efforts informed the program’s decision to target medical students and residents as a way to influence CFS education at the beginning of the medical education process. This report describes the background and process for developing a CFS education curriculum using standardized patients and plans to disseminate the curriculum using MedEd Portal.

You can read the rest of this article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3830016/

 

Source: Brimmer DJ, Campbell C, Bonner K, Lin JM. News from the CDC: chronic fatigue syndrome (CFS) and standardized patient videos - a novel approach to educating medical students about CFS. Transl Behav Med. 2013 Dec;3(4):338-9. doi: 10.1007/s13142-013-0229-9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3830016/ (Full article)

 

Understanding medical students’ views of chronic fatigue syndrome: a qualitative study

Abstract:

Chronic fatigue syndrome receives little attention in the medical curriculum. This study explores UK medical students’ knowledge of and attitudes towards chronic fatigue syndrome. Semi-structured interviews (average length 22 minutes) were conducted with 21 participants (7 females and 14 males) in years 3 (n = 4), 4 (n = 11) and 5 (n = 6) of their studies. Inductive thematic analysis taking a realist perspective produced three themes: limited knowledge, influences on attitudes and training needs.

Students acquired their knowledge and attitudes largely from informal sources and expressed difficulty understanding chronic fatigue syndrome within a traditional biomedical framework. Incorporating teaching about chronic fatigue syndrome into the medical curriculum within the context of a biopsychosocial understanding of illness could encourage more positive attitudes towards chronic fatigue syndrome.

© The Author(s) 2013

 

Source: Stenhoff AL, Sadreddini S, Peters S, Wearden A. Understanding medical students’ views of chronic fatigue syndrome: a qualitative study. J Health Psychol. 2015 Feb;20(2):198-209. doi: 10.1177/1359105313501534. Epub 2013 Sep 20. https://www.ncbi.nlm.nih.gov/pubmed/24058124

 

Adolescents and mothers value referral to a specialist service for chronic fatigue syndrome or myalgic encephalopathy (CFS/ME)

Abstract:

BACKGROUND: Paediatric chronic fatigue syndrome or myalgic encephalopathy (CFS/ME) is relatively common and disabling. Current guidance recommends referral to specialist services, although some general practitioners believe the label of CFS/ME is harmful and many are not confident about diagnosing CFS/ME. Aim Explore whether or not adolescents and their mothers value referral to a specialist service for young people with CFS/ME.

METHODS: A qualitative study nested within a feasibility study of interventions for CFS/ME [Specialist Medical Intervention and Lightning Evaluation (SMILE)]. In-depth interviews were undertaken with 13 mothers and 12 adolescents participating in the SMILE study. Transcripts were systematically assigned codes using the qualitative data organisation package NVivo and analysed thematically using techniques of constant comparison.

RESULTS: Gaining access to the specialist service was difficult and took a long time. Mothers felt that they needed to be proactive and persistent, partly because of a lack of knowledge in primary and secondary care. Having gained access, mothers felt the CFS/ME service was useful because it recognised and acknowledged their child’s condition and opened channels of dialogue between health-care professionals and education providers. Adolescents reported that specialist medical care resulted in better symptom management, although some adolescents did not like the fact that the treatment approach limited activity.

CONCLUSIONS: Adolescents and their mothers value receiving a diagnosis from a specialist service and making progress in managing CFS/ME. General practitioners should support adolescents with CFS/ME in accessing CFS/ME specialist services, consistent with current guidance.

 

Source: Beasant L, Mills N, Crawley E. Adolescents and mothers value referral to a specialist service for chronic fatigue syndrome or myalgic encephalopathy (CFS/ME). Prim Health Care Res Dev. 2014 Apr;15(2):134-42. doi: 10.1017/S1463423613000121. Epub 2013 Apr 25. https://www.ncbi.nlm.nih.gov/pubmed/23731646

 

Diagnosis and management of chronic fatigue syndrome/myalgic encephalitis in black and minority ethnic people: a qualitative study

Abstract:

AIM: This study aims to explore the possible reasons for the lower levels of diagnosis of chronic fatigue syndrome/myalgic encephalitis (CFS/ME) in the black and minority ethnic (BME) population, and the implications for management.

BACKGROUND: Population studies suggest CFS/ME is more common in people from BME communities compared with the White British population. However, the diagnosis is made less frequently in BME groups.

METHODS: Semi-structured qualitative interviews were conducted with 35 key stakeholders in NW England. Interviews were analysed using open explorative thematic coding.

FINDINGS: There are barriers at every stage to the diagnosis and management of CFS/ME in people from BME groups. This begins with a lack of awareness of CFS/ME among BME respondents. Religious beliefs and the expectation of roles in the family and community mean that some people in BME groups may choose to manage their symptoms outside primary care using alternative therapies, prayer or spiritual healing. When accessing primary care, all participants recognised the possible influence of language barriers in reducing the likelihood of a diagnosis of CFS/ME. Stereotypical beliefs, including labels such as ‘lazy’ or ‘work shy’ were also believed to act as a barrier to diagnosis. Patients highlighted the importance of an on-going relationship with the general practitioner (GP), but perceived a high turnover of GPs in inner city practices, which undermined the holistic approach necessary to achieve a diagnosis.

CONCLUSION: Training is required for health professionals to challenge inaccurate assumptions about CFS/ME in BME groups. The focus on the individual in UK primary care may not be appropriate for this group due to the role played by the family and community in how symptoms can be presented and managed. Culturally sensitive, educational resources for patients are also needed to explain symptoms and legitimise consultation.

 

Source: Bayliss K, Riste L, Fisher L, Wearden A, Peters S, Lovell K, Chew-Graham C. Diagnosis and management of chronic fatigue syndrome/myalgic encephalitis in black and minority ethnic people: a qualitative study. Prim Health Care Res Dev. 2014 Apr;15(2):143-55. doi: 10.1017/S1463423613000145. Epub 2013 May 23. https://www.ncbi.nlm.nih.gov/pubmed/23702254

 

Chronic fatigue syndrome–a patient centred approach to management

Abstract:

BACKGROUND: Chronic fatigue syndrome (myalgic encephalomyelitis) is a diagnosis that can attract feelings of stigma in the patient due to the lack of a definite diagnostic biomarker. To ensure that the patient firstly understands the diagnosis, and subsequently is comfortable with the treatment suggested, a patient centred approach is advised within the consultation.

OBJECTIVE: This article presents a hypothetical case and uses this to give guidance on methods for negotiating the diagnosis and treatment of chronic fatigue syndrome.

DISCUSSION: It is important to reassure the patient that negative investigation results and the suggestion of treatment options that are also used for depressive illness (eg. antidepressants and cognitive behavioural therapy), does not mean that their illness experience is fabricated or that they are being treated for depression. Once red flag features are ruled out and any exclusory illnesses identified, a multidisciplinary pragmatic rehabilitation program can be implemented. This includes strategies for increasing social support, liaising with employers and graded return to activities in a ‘What matters to you?’ approach.

 

Source: Arroll M, Arroll B. Chronic fatigue syndrome–a patient centred approach to management. Aust Fam Physician. 2013 Apr;42(4):191-3. http://www.racgp.org.au/afp/2013/april/chronic-fatigue-syndrome/ (Full article)

 

Developing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) in primary care: a qualitative study

Abstract:

BACKGROUND: NICE guidelines emphasise the need for a confident, early diagnosis of Chronic Fatigue Syndrome/ Myalgic Encephalitis (CFS/ME) in Primary Care with management tailored to the needs of the patient. Research suggests that GPs are reluctant to make the diagnosis and resources for management are currently inadequate. This study aimed to develop resources for practitioners and patients to support the diagnosis and management of CFS/ME in primary care.

METHODS: Semi structured interviews were conducted with patients, carers, GPs, practice nurses and CFS/ME specialists in North West England. All interviews were audio recorded, transcribed and analysed qualitatively using open explorative thematic coding. Two patient involvement groups were consulted at each stage of the development of resources to ensure that the resources reflect everyday issues faced by people living with CFS/ME.

RESULTS: Patients and carers stressed the importance of recognising CFS/ME as a legitimate condition, and the need to be believed by health care professionals. GPs and practice nurses stated that they do not always have the knowledge or skills to diagnose and manage the condition. They expressed a preference for an online training package. For patients, information on getting the most out of a consultation and the role of carers was thought to be important. Patients did not want to be overloaded with information at diagnosis, and suggested information should be given in steps. A DVD was suggested, to enable information sharing with carers and family, and also for those whose symptoms act as a barrier to reading.

CONCLUSION: Rather than use a top-down approach to the development of training for health care practitioners and information for patients and carers, we have used data from key stakeholders to develop a patient DVD, patient leaflets to guide symptom management and a modular e-learning resource which should equip GPs to diagnose and manage CFS/ME effectively, meet NICE guidelines and give patients acceptable, evidence-based information.

 

Source: Hannon K, Peters S, Fisher L, Riste L, Wearden A, Lovell K, Turner P, Leech Y, Chew-Graham C. Developing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) in primary care: a qualitative study. BMC Fam Pract. 2012 Sep 21;13:93. doi: 10.1186/1471-2296-13-93. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3573921/ (Full article)