Introduction

The Oxford criteria defines chronic fatigue syndrome, (CFS), / Myalgic Encephalomylitis, (ME), as severe disabling fatigue of at least six months duration, for at least fifty percent of the time. Symptoms of pain, poor concentration, and memory may also be present. It doesn’t exclude other psychiatric conditions such as depression but does exclude psychosis and drug and alcohol dependency, (Sharpe et al 1991).

I provide a collaborative treatment for CFS, as part of a multidisciplinary therapy team, at a regional centre. Affiliated to the CNCC network, the team comprises of clinical psychologists and trained therapists with nursing, psychology and medical backgrounds. The approach has been devised from extensive research, much of which was undertaken in house before the service was commissioned.  

This chapter aims to contribute my perspective of applying whole person principles in health care. I will use examples taken from my practice as a CFS therapist. However, I do not intend to detail a comprehensive treatment guide for this patient group or document outcomes for the service. Please refer to current research, the CNCC and CFS / ME organisations for further information. See references and bibliography.

Care delivery in CFS services

As a clinical therapist, my role combines a physical and psychological approach to treat physical symptoms and to enable patients to see a way forward in their condition. The programme is based on replicated research, which confirms CFS to be a physical illness. Emphasis is placed on sleep disorder, muscle deconditioning and increased nervous system activity, particularly the action of adrenaline.

My role is to encourage patients to understand what predisposed and perpetuates their CFS experience. Research shows that CFS can be triggered by illness, significant life events, increasing stress or unexpected demands. As this patient group tend to be high achievers with busy, productive lives, such triggers can result in deterioration in health that is not easily accepted. And so increased strain on physiology can create the ‘right’ conditions for CFS to develop.

By empowering patients with the knowledge of research findings and giving a clear physiological explanation of the cause of their symptoms, the team enable patients to take ownership of their health status. Personal responsibility is encouraged throughout the programme as only the patient can change their position. Patients are encouraged to find their own way through their illness. However, acceptance of diagnosis is necessary to move forward.

I would suggest that in all areas of health care delivery, if patients were encouraged to search for meaning and become active participants in the treatment process this would lead to greater compliance to pharmacological and lifestyle prescriptions. However, perhaps a change of culture is required both among health professionals and those accessing services, before outcomes such as increased attendance at consultations and improved health could be measured.

Keeping the patient central.

I agree that although obvious, the belief that the patient should be central in their journey through the health system, it is not always evident. As nursing students, my cohort and I were taught not to see the patient in the bed as just ‘the appendix’ and as referred to earlier, that familiar nursing model encouraged us to assess all aspects of the patient’s circumstances on admission, (Roper, Logan & Teirney 1986).

However, less emphasis was given to exploring the patients’ true experience of being reduced to a submissive recipient as the patient role is adopted along with pyjamas. Anxiety and fear was to be acknowledged and reassurance and explanation of procedures to be given. However, the exploration of attitudes and beliefs regarding admission was less of a priority. This, of course, means opportunities could be missed that would encourage patient engagement.

Health professionals should recognise the importance of every encounter that the patient has with their and other services. Patients today remain in awe of medics and are often unable to or discouraged from frank exchange. Services that provide a second specialist nurse consultation to follow the first, during the same visit, allow for understanding to be checked and for further information gathering to build a holistic picture.

Understanding the patients’ perception of their problems and their meaning keeps them central in the encounter. CFS therapy empathises with those circumstances, previous events and their affect that the patient is willing to share. Uniqueness is continually emphasised as patients’ become agents in their own healing; taking ownership of health status and the programme components.

Holism. A necessity in CFS services
When presenting to the CFS service the patient initially has physical limitations to be addressed, which may in themselves be obstacles to engaging in treatment. They may be unable to travel, walk, or sit comfortably for a consultation due to fatigue, pain and muscle deconditioning. The team will use a telephone triage system to make contact following diagnosis outlining the approach and gauging the patient’s suitability for a programme so as to cause the least distress.

Telephone consultations can also be utilised effectively to supplement group encounters. Therapists may feel patients’ would benefit from an individual consultation perhaps to increase understanding or to steer through a relapse sadly resources make this more difficult. All contact is space out to allow for patients to recover from the effects of concentration, interaction and travel. Patients also require time to consolidate information and to consider application before the next contact. 

Socially, group work reassures patients they are not alone and that others understand their experience. Understandably, much anger is brought to the early sessions, which can be effectively defused by sharing experiences. Carers are initially invited to support the patient and gain more insight into the condition. As their understanding grows, they are well placed to encourage the patient. The therapists use carers input to gain insight into relationships and social circumstances.

The team recognise that in CFS, concentration and memory problems make social contact uncomfortable and the retention of information difficult. There is attention to detail in presentations with different therapists taking alternative parts to aid concentration. The setting is informal and supplemented by written information. A huge effort is required to attend and payback is inevitable but patients often express gratitude to finally be understood and to make sense of what they are living with, for the first time. 

The team see psychological factors as important as the physical presentation and social factors. If patients are misunderstood, fear can follow, unhelpful medical contact increases anxiety and perpetuates symptoms. Cognitive behavioural therapy is employed in all sessions to encourage patients to reflect that how they think affects feelings and actions, which determines outcomes or consequences, (Trower, Casey & Dryden 2000). Therapists recognise patients’ need to be taken seriously.

Spirituality, patients have either been drawn into faith or away from it in the search to make sense of their CFS experience. They are often open to explore spirituality if they try alternative treatment options. For many a strong faith has precipitated the illness. As they gain self-awareness through the design of the programme they begin to make themselves a higher priority, often exploring alternative lifestyles and new directions as they recognise their right to full health and wholeness. 

There are similarities with other NHS group treatment / support initiatives, such as diabetes and pain management rehabilitation programmes where relationships enhance progress, (Pain Management Services 2003). They and the CFS service are aware that all factors must be explored in order to treat patients appropriately; beginning at diagnosis and continuing throughout patient contact. The interaction of these facets of the human condition is key to all areas of intervention and should be more readily accepted throughout healthcare.   

Who’s responsible?
I have found nursing to be predominately concerned with physical health issues and the administration of treatment as prescribed. The patient expects to receive intervention and so is likely to give responsibility for their health status to the health professional. To take the role of advice giver re-enforces a parental approach and fails to empower the patient to accept responsibility for change. A greater grasp of the importance of psychological processes in patients’ disease management, changes approach and improves outcome.

Nursing would benefit from more emphasis on gathering patient experiences and recognising how they influence compliance to treatment and lifestyle change. Patients should be encouraged to participate as fully as possible in any decision making around his or her own health care. The CFS service works hard to return responsibility for change in health status to patients. Patients are given knowledge of their condition and given permission to utilise as appropriate at consultant diagnosis, through triage and if appropriate psychological assessment and / or treatment.  

Story telling
Patients with CFS are likely to have been trying to tell their story over a number of years to friends and family members who may or may not do their best to understand an illness that seems full of contradictions and where it is difficult to avoid the label ‘malingerer’. The intensity and disablement of symptoms can lead a patient to be sceptical of a diagnosis reached only the exclusion of all others. However, for others it is a relief.Following consultant diagnosis the patient receives an initial intervention whilst awaiting triage and assessment. The session involves presenting research to, usually, a large group. So it is not possible for most of the group to tell of their experiences, although interaction is encouraged. Patients usually find the explanation of their symptoms revelatory and carers’ nod in agreement at what is being described. It may be the first time, following diagnosis that patients have been taken seriously in the healthcare system. 

Further intervention allows for more interaction. If a number of patients dominate discussion it can be counter-productive and highlights a negative aspect of group work. However, the therapists generally gain more insight into the patients’ experiences, personality and circumstances and record their findings. There is opportunity with those patients who share, to understand more of the events that precipitated CFS and factors, which may perpetuate the condition if not addressed. 

There is a common thread of anger towards medics, employers and those close to patients for the time taken to diagnosis, the lack of support and understanding of the condition. There are many misconceptions regarding the source of symptoms. Patients are likely to have unhelpful illness beliefs. They may still be searching for a diagnosis they feel is more acceptable and it may be the first time patients are introduced to the idea of managing their illness differently.

The therapists are aware of the importance of these initial interactions. It is here that a relationship of trust is laid down. By capturing the patients’ attention and demonstrating expertise, confidence and professionalism, the patient will be willing to share more of their story in subsequent consultations. If the therapist is viewed with authority and perceived to have genuine interest the patient will have more faith in the approach being offered.      

 When symptoms are seen in isolation…

Patients have usually experienced extensive investigations to exclude organic disease before they present to the CFS service; including cardiovascular, muscle, gastro-intestinal, sleep, rheumatological and neurological interventions. Often extensively ‘medicalised’ when they encounter the CFS service, it is important that patients’ first encounter proves satisfactory. However, the consultant physician must employ the biomedical model and diagnoses by exclusion, which both the doctor and patient can find unrewarding.

CFS patients experience a severe and often devastating deterioration in physical and mental functioning. Research confirms no organic disease, damage or virus. However, there are many physical symptoms, which can vary in intensity and frequency such as palpitations, myalgia, neuralgia, fatigue, sleep disorder, gastro-intestinal disorder, visual disturbance, lossof balance, dysphagia. They can be very frightening and indicative of a more progressive disease process.

If the patient is not satisfied with the medical explanation, they can believe there to be another cause and be unable to work with the offer of treatment. Clarification brings acceptance and learning not to look at symptoms in isolation reduces anxiety. If the patient feels their experience is been fully explored there is greater engagement. The establishment of a therapeutic relationship begins here.

The therapy team initially employ the biomedical model to ensure treatment is appropriately prescribed. However, an assessment of psychological and environmental influences, including personality, anxiety and depression, family dynamics, support, commitments, financial status and employment status, are essential in order to treat the patient effectively and can provide prognostic outcome indicators. The whole-person approach also enables triggers and factors that pre-disposed the patient to CFS to be highlighted, such as illness, hospitalisation, persistent stress, financial or work demands.

The multi-disciplinary team
Patients are usually referred to the service by their general practitioner and following diagnosis by a consultant physician are invited to a brief intervention. There is a waiting time. However, not all patients are suitable to go on to a treatment programme, due to ambiguous diagnosis, level of severity, work commitments, family difficulties or a contra-indicated medical condition. These patients are reluctantly discharged back to GP for management.

Other patients’ who have experienced significant life events or have other mental health issues, identified during history taking, may benefit from clinical psychology before or in conjunction with the treatment programme. Such issues should be identified as the consultant takes the medical history. If not the therapists triage system should ensure patient assessment has been thorough.

NHS resources are scarce, despite numbers with the condition estimated at 250,000 with the most productive and skilled portion of the workforce affected, (DoH 2000). Primary care expertise is inadequate and all CFS services are oversubscribed. The clinical psychology arm of the CFS service, although under resourced is essential. Recognition of psychosocial factors in patient presentation is to provide the very best health care intervention.

It is important to recognise that the clinical psychology approach can have less appreciation of physical medical conditions. This may prove an obstacle to or dilute recovery. In CFS diabetes, chronic pain, orthopaedic, or cardiac disease will affect recovery, if their influence on the patients’ health status is not recognised or understood. Multi-disciplinary team -work is therefore appropriate to provide effective holisticcare.

The CFS service rely on the GP and Consultant to contribute pharmacology as appropriate, to relieve physical symptoms. Local mental health services may be more appropriate for patients whose needs are not directly resulting from CFS, such as eating disorders, childhood abuse. Patients who have chronic pain may be referred to local pain management services. The programme is self managed and home based as the patient takes ownership of its principles. However, the therapy team continue to assess at each consultation and will refer as appropriate. 

The therapeutic relationship
In every sphere of health care, capturing the patients’ attention is significant in fostering a good therapeutic relationship and a successful outcome. Central to psychological and counselling interventions is the goal of building a relationship of mutual trust, respect and understanding, (Mearns & Thorne 2006). The therapist accepts patients’ individuality, and explores fears, assumptions and obstacles to treatment. Positive regard, empathy and congruence on the part of the therapist, overcomes discrepancy, (Mearns & Thorne 2006).

The patient deserves full attention during each consultation and the health professional should reflect on the importance of the encounter from the patient’s perspective. Each is an opportunity for the patient to tell more of their story, which guides the therapist. However, the group environment can inhibit interaction and in telephone consultations both the therapist and patient have to work much harder to pick up cues that would be easier to interpret visually.

An effective CFS therapeutic relationship emphasises commitment to the patient for the duration of contact and demonstrates belief in their ability to make progress. Maintaining contact with the same health professional encourages continuity. As input is generally for about a year, more layers of the patient’s personality, beliefs and experiences are revealed as the relationship of trust develops.

The patient must have faith in the practitioner. Information from a proven research base is innovatively presented to aid comprehension. Cognitive-behavioural therapy presents alternative thought and behavioural options to patients. Motivational techniques are also employed, to encourage patients’ to move from ambivalence to sustainable acceptance, (Miller & Rollnick 1991). The wider health care setting would benefit from recognising that integral to patients’ health outcome is their interpretation of illness and response to intervention.

Empowering to change 

CFS patients have a well-documented loss of physical function. A sleep disorder has developed as a result of a significant event, illness or build up of stressors. This patient group have generally been physically fit and active and so muscle deconditioning happens quickly when they are forced to rest. The body responds to these difficulties by producing high levels of adrenaline, which traps the patient in many intense symptoms and a vicious descending cycle.     

Research confirms that patients’ are generally high achievers, conscientious, supporters of others and have high standards.  The role personality plays in predisposing and perpetuating CFS must be addressed alongside physical and mental dysfunction and patients need to be fully engaged with the prescription of behaviour modification, in order to progress. Patients’ physical health can be improved through changes to thoughts, behaviour and actions.

Miller and Rollnick, (1991), describe a cycle of change. They suggest that for patients in the contemplation stage, the therapist tips the balance in favour of change by increasing awareness of consequences.  Patients’ intrinsic motivation is enhanced by the perception of free choice to move onto determination and action without coercion. However, in CFS services as with other specialities, the therapists recognise that ambivalence, moves the patient in and out of action and relapse are common patients’ experience.

For example, the newly diagnosed diabetic can be described as incompliant if they have been unable to accept diagnosis and understand the importance of modifying lifestyle. They may fail to administer prescribed dosage of medication to control their condition and prevent deterioration. I would suggest that in CFS patients who gain understanding of the physiology and psychology of their condition are more likely to take ownership of actions and prevent deterioration and bring about improvement.

Recognising the patient’s complex dilemma in illness reduces conflict and works towards a resolution. In CFS and other group programmes the shared peer experience is conducive to progressing from contemplation through to action and beyond as patients hold others experiences in high regard. Through the programme CFS patients can become skilful at assessing the cost of going beyond energy reserves to achieve a task or an enjoyable event. The physical concepts are presented through psychological therapy.

 Outcomes 

Patients generally have input for about one year with the CFS team. At the end of the therapeutic relationship patients may still be progressing towards recovery but now possess all the tools necessary for this to continue. The holistic approach recognises that thoughts, feelings, perceptions and values influence health. The ability to manage stress, mental and emotional processing returns more slowly than their physical strength. The NHS expert patient programme has proved valuable as a resource to refer patients on to at the end of the CFS treatment programme.

Physical function and psychosocial outcomes, such as work and relationships, are formally measured in the form of postal questionnaires. Results do show improvement in physical ability and the reduction in symptoms through this long view predominately non-pharmocological treatment programme. However, other stressors, illness’, inability to make changes to commitments and personality are all factors, which may prevent or delay recovery.

Recovery. Learning lessons.
As patients themselves report, longing for physical recovery cannot be separated from the psychological effects of being ill, which can create barriers to progress. Negative thinking and illness beliefs can keep patients stuck and the emotional impact of isolation, misunderstanding, anxiety and frustration can be overwhelming. Acceptance of their condition is fundamental. The holistic treatment approach addresses these components of the condition.

Patients who recover are unanimous in their conviction that CFS has not been a wasted experience. It has generated self-awareness, highlighting unhealthy expectations and behaviours, often taking patients in new directions where their life-balance is more realistic and relationships are more equal. Chronic stress, high expectations, perfectionism and low esteem issues are often highlighted as contributory to CFS. In recovery patients have learnt the importance of choice in behaviour and to put themselves as a higher priority.

Conclusion
In this chapter I have contribute my perspective of applying whole-person principles specifically in the treatment of patients with CFS, in an NHS regional therapy service, although experience in adult nursing has influenced my approach. I have offered my working definition of CFS, causation of symptoms, precipitating and perpetuating influences, as supported by NHS based research. I have outlined the services’ collaborative approach.

I believe the team understands the importance of physical, psychological, social and spiritual factors in a patient’s journey through CFS and their encounters with the health care setting. Every experience is explored as permitted. Meanings, beliefs, fears and misconceptions are all central considerations. However, the team recognise that the patient must feel empowered to take ownership of their health status and the decision to move forward.

Within the constraints of NHS allocation and funding of resources, the team encourage full story telling to avoid viewing symptoms in isolation and maintain a multi-disciplinary approach. The therapeutic relationship, builds trust and respect through the demonstration of understanding, empathy and commitment, as the therapist accompanies the patient through the change process from contemplation, through ambivalence to determination and action.

However, the complexity of the dilemmas and difficulties facing patients with CFS means that not all will recovery full function but many report improvement. Other medical conditions, family circumstances and financial pressures are a few of the many obstacles patients face and an inability to see how personality style affects the condition will be a barrier and may dilute recovery. I believe this condition cannot be treated effectively or appropriately without whole person principles and nor should others.     

REFERENCES

Action for ME                      www.afme.org.uk

Chief Medical Officer’s independent working groups
Report (2000)                       report into CFS/ME.
                                              HMO. Department of Health
                                              www.doh.org.uk

CNCC                                    www.doh.org.uk

Mearns, D. & Thorne, B.       Person-Centred Counselling in action.
(2006)                                    Sage publications. London.

Miller, W. R. & Rollnick, S.   Motivational Interviewing. Preparing
(1991)                                     people to change addictive behaviour.                                                                                            
                                                            

Pain Management                  Pain Management Services good practice.
Services. (2003)                      www.rcoa.ac.uk

Roper, N. Logan, W. W.        Activities of daily living nursing model.
& Teirney, A. (1986)             Elements of nursing. Churchill Livingstone.
                                               London.

Royal, J. & Walsh, M.           Watson’s medical - surgical nursing and
(1996)                                    related physiology. Balliere Tindall.                             
London.

Sharpe, M. Hawton, K.          Chronic Fatigue Syndrome: Guidelines
Simkin, S. Surawy, C.             for research. Journal for the Royal Society
Hackmann, A. Clare, L. K.    of Medicine. 1991: 84:118-21.
David, A. W. (1991)

Trower, P. Casey, A.               CBT Counselling in action.
& Dryden, W. (2000)              Sage Publications. London.

The Author
Debbie Roberts has a general adult nursing background of thirteen years. I trained under Project 2000 and after qualifying, nursed in adult intensive care: cardiothoracic, neurosciences and general. I gained in depth knowledge of emergency medicine and built up experience of caring for the whole family when faced with a sudden critical illness and at times death.

More recently I practiced in primary care with responsibility for delivering treatment, for all ages with a wide variety of conditions and circumstances. I experienced health needs in both poor and affluent communities, whilst on the district and carried a large palliative care caseload. I now treat patients with chronic fatigue syndrome, (CFS), / Myalgic Encephalomylitis, (ME), as a therapist at a regional service.

Throughout my nursing experience the concept of holism has influenced patient care. I am familiar with the popular nursing model, termed ‘activities of daily living’, Roper, Logan & Tierney, (1986), assisting the nursing process to guide care, evaluate progress, assist in discharge planning and to structure nursing interventions, (Royal & Walsh 1996). The whole person approach remains a central concern to my current role as a therapist, delivering treatment to patients with CFS. Debbie has been a practising Christian for 23 years.

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