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Chronic Fatigue Syndrome

  
The Chronic Fatigue Syndrome (ME/CFS/FM) Primary Care Best Practice Research and Evaluation Project is an innovative solution-focused 3-year collaborative partnership project, to facilitate team approaches to manage the Chronic Fatigue Syndrome group of complex chronic illnesses (ME/CFS/FM). General Practitioners, allied health and other community service providers, and consumers (individual & groups) are working to develop a system of monitored and co-ordinated integrated care for sufferers of these illnesses.

In 1999, when the Sharing Care Initiative (Chronic Illness Disease Self-Management Initiative), Enhanced Primary Care, and new Medicare Items were introduced, stakeholders reported that there was no consistent information or validated assessment tools to support care plans and self-management educational programs to include people with ME/CFS/FM. Using strategic stakeholder consultative processes we are working to correct this deficiency and address the loss of confidence in health and welfare services.

The current stage involves collating information from the General Practitioners, consumer surveys focus groups and educational initiatives, and comparing these findings to the literature. These will be developed into a series of working papers to be reviewed by stakeholders, in an educative quality improvement process, moving from current best practice to evidence based care.

The current stage involves collating information from the General Practitioners, consumer surveys focus groups and educational initiatives, and comparing these findings to the literature. These will be developed into a series of working papers to be reviewed by stakeholders, in an educative quality improvement process, moving from current best practice to evidence based care.

The goal is to facilitate a cost effective and rapid documentation and preliminary evaluation, of the current community best practices for the management of the Chronic Fatigue Syndrome Group of illnesses.
       
The Project aims are to improve health, wellbeing and quality of life of people with ME/CFS/FM by:
 
  • Improving access to a range of health management strategies.
  • Systematically collating useful interventions and services.
  • Improving self-management skills through information and education programs.
  • Developing a series of working papers on the MECFS/FM illnesses & management interventions.
  • Fostering shared and coordinated team management.
  • Aligning these illnesses with General Practice Enhanced Primary Care and Sharing Care Initiatives, health prevention and promotion activities, community service and Centrelink eligibility criteria
  • Establishing a taskforce reference group of providers and consumers to oversee the monitored best practice improvement process.
  • Through the above initiatives develop Australian appropriate data to inform policy, services planning, and clinical decision-making.
Chronic Fatigue Syndrome is a group of illnesses, not a single disease entity
The project focuses on clinical presentations in the Australian community, and for this reason is not limited to the research definitions of Chronic Fatigue Syndrome because many sufferers would be excluded.

Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) are frequently used as interchanging terms. The diagnostic terminology can depend upon the health professional or the symptom pattern at the time of the original diagnosis. These illnesses can include CFS, FM, Myalgic Encephalomyelitis (Encephalopathy), chronic pain syndromes, multiple chemical sensitivity, irritable bowel syndrome, post Q Fever fatigue, post viral fatigue, non-HIV auto-immune deficiency syndrome and post traumatic stress syndrome.

It appears that ME/CFS/FM can vary in geographical areas depending on the level of infectious agents and the environmental stress factors. Further difficulties have been identified when doctors use the exclusion approach to diagnose, because people who have dual diagnoses or overlapping disorders are excluded.
Background to the Project
1999-2002, our preliminary work (surveys, focus groups, feedback from providers & consumers) found that:
 
  1. Diagnoses vary, depending on the approach of health professionals.
  2. In South Australian clinical practice, the terms Chronic Fatigue Syndrome (CFS) & Fibromyalgia are used to describe a group of overlapping disorders. Illness patterns may differ from other states (infectious agents).
  3. The suggested research diagnostic criteria are not practical in clinical settings.
  4. There is no consistent approach to management amongst health providers.
  5. Information circulating at all levels of the community is conflicting.
  6. Acting upon incomplete information can place sufferers further at risk.
Poor outcomes and ongoing deterioration is a concern
The literature suggests that in ME/CFS/FM most people improve, and there is even spontaneous remission of the illness. This is of concern, because in South Australia and Interstate there appears to be sufferers who are experiencing ongoing deterioration of their symptoms. These are linked with misunderstood medication tolerances and chemical sensitivities, unmanaged pain, gut problems or food intolerances. They can eventually result in no access to consistent medical or allied health care.
Loss of confidence in the health and welfare system
The lack of information and varying even conflicting explanations by providers, about the symptoms patterns sufferers experience, the severity of the illness and the associated disabilities is leading to misunderstandings and loss of confidence in the health and welfare system.

Sufferers report that the lack of understanding of the organic basis of ME/CFS/FM, and having a disease outside current medical frameworks, and without any known cures, increases the burden of their illness. It often causes them to be labelled as having psychiatric or psychological conditions. Some describe how medical care worsens their disabilities because of their sensitivities to the normal levels of medications and chemicals used in health services.

Many people with ME/CFS/FM have given up on mainline health care because of what they perceive as the limited approaches and the stigma and fear of having their condition labelled as psychological or psychiatric, rather than organic. For this reason many do not attend medical practitioners and only attempt to access care in crisis situations.
Access to care and support is a priority issue for stakeholders
In South Australia there have been no recent epidemiological studies or documentation of the natural history of the illness. There is no data on the range of presentations in the community, or the management strategies used by health providers, medical and alternative, and how or why some sufferers appear to make a complete recovery, while others deteriorate over time.

This lack of clarity around ME/CFS/FM influences people's access to services. There are no Australian validated assessments to meet the eligibility criteria. Patients frequently say they are misunderstood and fall through the gaps. Their failure to access health, welfare and support services is a major issue that compounds their illness experience.
 
For providers who accept these people as patients, there are no peer reviewed management strategies or agreement on medical or other specialist care.

For health management and service access there are no validated assessment tools for Australia, documented cures; no evidence-based care; and most management interventions used in the community have not been evaluated or peer reviewed. This includes medical, allied and integrated health, and other services and lifestyle modifications that limit the illness experience.

For General Practitioners, who are initially the main providers of care, the delays between implementing research into clinical protocols leads to professional dilemmas. Consumers access the extensive medical research literature on the Internet, and the media promotes "miracle cures", but these have not been evaluated for those who daily seek to work for positive health outcomes.

In the acute care system, there is a lack of hospital protocols for the management of people severely ill with ME/CFS/FM and those with crisis needs. These include their sensitivities to recommended levels to medications, and the frequent environmental and chemical intolerances.
Project Work    
This project is centred at the primary care community service interface. Using Australian appropriate consultative community development and evaluation processes, similar to those used in the recent Public Health, General Practice reforms, co-ordinated trials and Enhanced Primary Care initiatives, we aim to systematically build up a picture of the range of suffers' presentations and management strategies found in the Australian community.

Consistent with the current emphasis on team approaches and integrated care management we are including medical, allied health, holistic, integrated services, providers and carers, all stakeholders who have been identified as improving the health-related quality of life of people with ME/CFS/FM.

Interventions include multidisciplinary clinical approaches, skills development, information, carers support, and educational programs for sufferers and providers, including early intervention and health promotion approaches, to limit the impact of the illness over the life span.

Data on ME/CFS/FM is being collated using the same frameworks, integrated approaches and indicators as the wider current Governments chronic illness reforms. In this way we plan to provide information on these illnesses in a format that can be directly used in policy, program and service development, and compared to the findings of the currently funded demonstration projects.

For practical purposes and consistency with interstate work, we are using the Divisions of General Practice as the epidemiological grid for Australia.

Information received so far suggests there are management strategies that are helpful in limiting the illness experience, but at this stage there is not enough data available and evaluated, to support informed decision-making.

Respondents have identified that people with ME/CFS/FM access a range of fee paying and subsidised services to improve their health related quality of life.

The cost of helpful interventions is a prohibitory factor because many sufferers contacted claim they cannot afford the ongoing costs of interventions and services that they believe could help them improve.
Hidden Sufferers a Special Case  
The preliminary findings described above highlight the problems to reach and measure the full range and extent of ME/CFS/FM in the community.

A particular concern is the severe end of the illness. In the 5 years since the project commenced, we have received calls from sufferers who have symptom severity, are homebound, who cannot access medical care or who describe adverse outcomes of care.

Some sufferers do not tell health services of their full condition for fear of being labelled as having a psychiatric or psychological condition, others having given up on mainline health care only using alternative providers. The stigma means that sufferers do not always identify with the ME/CFS consumer groups, while the severe can be totally isolated and homebound.
Epidemiological Study a priority
As described above the lack of recent South Australian or comprehensive Australian epidemiological and case history studies is a major limiting factor in addressing the current knowledge and limitations in care for people living with ME/CFS//FM. Important data is scattered across the range of providers used. Information received in our communications with interstate groups suggests that the illness profiles are not identical. We suspect this may be related to the different types and amounts of infectious agents and environmental factors occurring. Evidence suggests that stress agents including environmental factors cause ongoing deterioration of health and relapses that compound the situation.
Priority issues identified by stakeholders to improve management, include information on:
 
  • Diagnostic criteria for clinical use, to allow early intervention and to reduce the compounding factors that increase the burden of illness.
  • Validated outcome measures, assessment and monitoring tools.
  • Management strategies used in General Practice.
  • Best Practice models of care that include allied health & alternative interventions.
  • Services and other strategies available to support Enhanced Primary Care care planning and Sharing Care initiatives.
  • Information on sensitivities to medications.
  • Severe patients or "reactive" stages of the illness.
  • Pain Management strategies.
  • Validation and accreditation of local and overseas primary care management models and systems of care, skills and educational programs.
  • Hospital protocols
  • Management of multiple chemical sensitivities.
  • Sentinel site for receiving and reporting of clinical practice information.
  • Risk Management.
For Consumers: This research process is empowering, providing opportunities to contribute to the consultation processes (surveys, focus groups, case studies, evaluations); and to evaluate targeted health management strategies, to improve their health outcomes, and to work to limit the affects of the illness processes.

For Providers and Researchers: The Best Practice improvement process serves as a means of submitting work and practice experience, in a non-threatening pre-evaluation environment.

For the wider community: The overall aim is to limit the burden and costs of these illnesses on the Australian health and welfare system.
Networks with International ME/CFS/FM Primary Care Groups
The major goal of our project is to facilitate a cost effective and rapid documentation and preliminary evaluation of the current best practices for the management of the Chronic Fatigue Syndrome groups of illnesses. We are working to address the professional dilemmas for providers, to bridge the gaps and delays between the research literature and practice protocols, and thus in the area targeting the gaps of the current literature to provide comprehensive evidence based Clinical Guidelines.

An unexpected finding during consultations for our submissions for the "Priorities of Primary Care", Feb 2001, and the "Models and Systems of Care for Chronic Illnesses", April 2001, was International Groups working on similar multidisciplinary care team, and rehabilitation programs for ME/CFS/FM.

The work of our Project will be complemented by global partnerships to evaluate their work to improve clinical care in Australian contexts.

In this way it will bolster the work of traditional biomedical medical researchers.
Project Activities September - December 2002 Included:
 
  • Completion of the National ME/CFS Needs Survey
  • Completion of pilot evaluations of 3 self-management modules
  • Consumer focus groups on Enhanced Primary Care Plans and community services
  • MECFS illness specific Lorig Self-management course
  • General Practice models and system of care for ME/CFS
  • Development of hospital protocols Setting up of Sentinel site for adverse affects
Other initiatives of Bridges & Pathways Institute Inc. include:
 
  • Chronic Disease Self-management / Sharing Care Evaluation Initiatives.
  • Chronic Illness Enhanced Primary Care Working Group.
  • Comprehensive Assessments and care management.
  • Skills Development and Educational Initiatives
  • Chronic Illness Empowerment Project.
  • Chronic Illness Collaborating Links Network SA
  • Bridges & Pathways Institute Inc. consultant team are also
    available for Credentialing, Auditing and Consultations by request.
 
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