CPD: Fit to drop? Managing chronic fatigue syndrome in the workplace

Chronic fatigue syndrome can be a debilitating condition characterised by unremitting fatigue, joint pains and mood disturbance. Image: Shutterstock

It is estimated 250,000 people in the UK have been diagnosed with the debilitating condition chronic fatigue syndrome (CFS). Felissia Friday-Moore and Professor Anne Harriss assess the crucial role that occupational health can play in supporting someone with CFS to return to work.

Occupational health (OH) nurses are increasingly involved in the case management of employees referred for an OH opinion following periods of sickness absence. The aim of these consultations is to assess whether the employee is well enough to return to their role and to suggest modifications to the person’s job requirements or work equipment that might facilitate an effective return to work.

About the authors

Felissia Friday-Moore is a specialist occupational health nurse and Anne Harriss is emeritus professor in occupational health

This case study presents the management of an OH referral for Sally, (a pseudonym), a 39-year-old employee with a diagnosis of chronic fatigue syndrome (CFS). Although CFS will be used throughout this article it is worth noting the alternative term myalgic encephalomyelitis (ME) is used interchangeably by many clinicians. However, some researchers assert that ME and CFS are not the same condition, as there are subtle differences in their diagnostic criteria (White et al 2011).

In 2015 The Lancet noted that an estimated 250,000 people in the UK had been diagnosed with CFS. This debilitating condition significantly affects daily activities. It is characterised by enduring fatigue, unrelieved by periods of rest, and is associated with joint pains and mood disturbances.

Sufferers are generally critical of what they consider to be an undue focus on the psychological aspects of the condition, considering this to be stigmatising (Lancet, 2015). As the Centers for Disease Control and Prevention observes (2018), CFS should not be considered to be a psychological disorder but a biological illness, with numerous pathophysiological changes affecting multiple systems,

In light of the stigma often associated with a diagnosis of CFS, in what The Lancet (2015) described as a landmark report, the US Institute of Medicine (IOM) proposed redefining evidence-based diagnostic criteria and suggested an alternative term for this condition, mirroring the literature and more accurately reflecting the features of the condition.

The term suggested was systemic exertion intolerance disease (SEID) systemic as the condition affects many body systems; exertion intolerance reflecting that the central feature of the disorder is fatigue (even at rest); and disease indicating that the condition has pathological mechanisms.

The client

Sally (not her real name) had been employed for four years as a full-time manager. Her job role was administrative and, although psychologically challenging, it was not physically demanding. Her line manager referred her for an OH assessment following episodes of repeated short-term absences, with one further episode of long-term absence.

Initially, Sally’s short-term absences resulted from the stress associated with the unexpected terminal illness, then subsequent death, of her mother, which occurred within three months of her initial diagnosis. Although Sally had had no previous history of mental illness, her mother’s death precipitated an episode of depression, which resulted in a further episode of sickness absence.

Underpinning pathophysiology

The cause of CFS remains under debate; a range of factors has been suggested, including exposure to viruses, hormonal imbalance, stress and a weakened immune system (Sampson, 2019) and organophosphates (Kerr, 2015). It has been recognised for more than 20 years that viral illnesses including, but not restricted to, meningitis, hepatitis and herpes can trigger symptoms of CFS (Cleare and Wessely 1996; Hotopf et al 1996; Berelowitz et al 1995; Shepherd and Chaudhuri, 2017).

A possible bidirectional communication between the immune system and the brain and an association between low-level immune system activation and inflammatory processes is postulated by Shepherd and Chaudhuri 2017. In relation to those with CFS, their “sickness behaviour” reflects a normal response to infection. Their experience of fever, malaise, fatigue, muscle/joint pains and cognitive dysfunction become chronic symptoms.

Occupational health assessment of fitness to work

The role of the occupational health nurse (OHN) in managing this case consisted of supporting Sally and offering advice to her manager with regards to an effective approach to facilitate her return to work, particularly if it was necessary to put modifications in place (Chantry and Harriss 2017).

The aim of the assessment was to ascertain whether Sally was able to undertake her job demand without risking a further deterioration to her health. Further considerations included how to achieve the best possible job person fit (Smedley et al, 2013) and how to facilitate a return to work whereby she was able to undertake her job requirements without compromising her health.

Sally had been absent from work for over six months when the management referral was received. Her continuing absence was still covered by a fit note from her GP and she consented to a management referral.

In keeping with the key performance indicators for the OH service, a face-to-face appointment was arranged and she was seen within 10 days of the receipt of the referral.

Although there is a growing trend for conducting telephone consultations, as these can potentially enhance access to the OH service for clients who are absent from work, it was felt that Sally would benefit from a face-to-face appointment (Rodway, 2014).

Sally gave written consent for the consultation and requested a copy of the report before it was sent to the referring manager and indicated she wished to discuss it with her GP. The OHN welcomed this, considering that it would promote collaborative working with the primary care team.

Engel’s (1977) biopsychosocial approach underpinned the OH assessment and focused on the physical, sociological, psychological and intellectual aspects of Sally’s health status.

It was undertaken in the light of the four elements proposed by Murugiah et al (2002): personal attributes, legal aspects, work characteristics and work environment.

Appropriate adjustments that could be made to facilitate her returning to work were integral to the consultation. Her current and past health status was recorded to ascertain Sally’s functional ability (Smith and Harriss, 2016).

Socially, Sally was married with an eight-year old son. She disclosed that she did not smoke, or drink and her diet was slowly improving from what it had been in the previous three months. Sally enjoyed financial security with no financial stressors.

She disclosed experiencing significant tiredness and malaise, compromising her ability to undertake activities of normal living and she struggled to concentrate for long periods. This presented concerns for Sally on her return to work, as she stated that she often needed to take naps throughout the day; despite having slept through the night she did not generally wake refreshed.

Watson (2010) refers to a range of clinical flags that are useful when undertaking a clinical OH assessment. Of particular relevance to the management of Sally’s case are the red flags associated with the intense fatigue she experienced and which were central to the diagnosis of CFS.

Yellow flags relate to thoughts, feeling and behaviours. Sally did not disclose any work-related stresses over her period of sickness absence. She expressed feeling well-supported by her manager during this period and particularly so with regards to her bereavement.

Sally mentioned noticing a relationship between stressors and an exacerbation of her symptoms, particularly those of fatigue. This could become a significant hurdle to developing an effective and successful return to work strategy.

Sally indicated that she had stopped going to the gym. According to Mellin and Harriss (2010), those with CFS may have concerns regarding their physical abilities and consequently cease leisure activities because of the fear that pushing themselves too hard may delay recuperation.

Since Sally had experienced recent depression, an assessment of her psychological wellbeing was undertaken using the Hospital Anxiety and Depression Scale (HADS) (Brooks et al, 2011). Sally scored six for depression and nine for anxiety, suggesting a borderline case for anxiety. There were no significant clinical flags that might influence Sally’s attitude to an effective return to work; she stated she enjoyed her job (blue flag) and welcomed the support her manager afforded her (pink flag).

Treatment options

Symptom control is an important element of the management of this condition. Mellin and Harriss (2010) highlight the importance of proactive approaches to assessing fitness to work, recommending early interventions before any disabling aspects of CFS become established.

NHS Plus (2006) notes that many CFS sufferers show little interest in physical activity due to the exhaustion they experience. Although they prefer to rest in an attempt to control their symptoms, activity avoidance may result in physical deconditioning and further disability (NHS Plus, 2006).

Guidance from the National Institute for Health and Care Excellence (NICE) (2007) highlights that treatment and care should take account of patients’ individual needs and preferences. It emphasises the importance of good communication between healthcare professionals and people with CFS

There remains no clearly identified evidence-based treatment pathway for CFS (NHS Plus, 2006). However, cognitive behavioural therapy (CBT) (Malouff et al 2008) and graded exercise therapy, a structured exercise programme, including swimming and walking that raises the heart rate, have been strategies recommended to manage some of the symptoms of CFS (Edmonds et al, 2004; NHS, 2019).

Kerr (2015) is critical of the scientific basis on which these treatments are offered, although they are supported by the NHS (2019). Kerr (2015) highlights that CBT helps only a fraction of patients and graded exercise therapy (GET) has been shown to exacerbate the symptoms of patients with CFS/ME.

Such symptom exacerbation is logical: post-exertional malaise is a significant symptom of CFS/ME and Kerr advises against the use of GET for CFS/ME patients, referring to the recent name-change of Systemic Exercise Intolerance Disease (SEID) recommended by the Institute of Medicine in the US. This reinforces that exercise therapy should not be used for CFS/ME.

Where GET is utilised, after ascertaining the exercise level, the person with CFS can comfortably achieve, the intensity and time spent exercising is gradually increased.

Integral to this approach is the client and therapist setting achievable, but possibly stretching, goal such as walking, gardening or undertaking household chores.

Achieving these goals may take significant period of times; for some this equates to weeks or months for others this may extend to years. Although the use of GET could be considered to be contentious, Sally hoped it might help her.

As there was a delay in accessing GET, Sally decided to participate in the aqua aerobics sessions available at her local gym. She was offered, and accepted a referral for CBT which she found helpful.

Legal considerations

The fatigue associated with Sally’s condition affected her ability to undertake normal activities. Her employer had a duty of care to ensure her health, safety and welfare at work under the Health and Safety at Work etc. Act (1974).

Kloss (2010) states that, once an employer is aware of the employee disability, the employer has a higher duty of care even where a risk is minor. Although ultimately a legal decision, the OH nurse remained cognisant that the Equality Act (2010) might apply, and this had a bearing on the recommendations included within her response to the management referral.

Return to work strategy

At the initial consultation, Sally explained that her GP had recently issued a fit note covering a further four weeks of absence, but anticipated that after this period she would be well enough to return to work.

Modified duties may be required as recommended by an OH professional. It was discussed with Sally that being in “good” employment was protective of health, and her return into work was important (Marmot, 2010) but should be appropriately planned.

Her recommended return-to-work plan incorporated a phased return over a 12-week period with follow-up consultations when required. Her manager maintained telephone contact with Sally every two weeks until her return to work. The rationale of this strategy was to help her feel part of the team with the aim of promoting a successful to work strategy.

A further OH appointment was arranged for two days prior to the date of her planned return to work. Sally had three further CBT sessions planned. Facilitating attendance at these further sessions was incorporated into the return-to-work strategy. This attendance was agreed by her manager demonstrating their commitment to making reasonable adjustment.

At this appointment, a phased return-to-work plan was discussed. The potential for fatigue associated with her commute to work was discussed and Sally’s manager agreed for her to work from home for the first month to build up her ability to manage the commute.

It was proposed that, in order to build up her resilience, Sally should begin by working two to three hours each working day for the first two weeks, gradually increasing and with the expectation that she should be able to fulfil her normal working hours within three months.

The management referral specifically asked whether Sally would be covered by the provisions of the Equality Act 2010. The OH response indicated that whether this Act would apply is a legal rather than a medical decision. However, it was likely to apply because of the limitation on activities of daily living and with a likelihood of lasting longer than twelve months.

Sally was highly motivated to recover, disclosing that she had joined her local gym and had completed one session of aqua aerobics. She enjoyed this increase in activity but felt exhausted at the end of each session.

She welcomed that her manager had agreed she could work from home for up to two days each week, should she feel this would address her fatigue. An early OH referral ensured Sally’s successful return to her normal full-time contractual hours, although she was considering reducing her contracted hours to allow her to better manage her symptoms.

Conclusions

Addressing any barriers to an effective return to work coupled with effective communication between the manager, employee and OHN facilitated Sally’s return to work. The support she received from her manager was noteworthy; he had kept in touch with her throughout her absence, undertook a return-to-work “welcome back” conversation and was willing to support the recommended modifications.

Upon discharge from the OH department, Sally’s return to work was uneventful. She was enjoying aqua aerobics and had completed a total of six sessions of CBT with good outcome. Unfortunately, she had been unable to access GET sessions.

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