Long Covid AND M.E. EMPLOYMENT TOOLKIT - SUMMARY FOR MANAGERS

What people say about this website: 

"Long Covid patients have a lot to learn from the chronic illness community. Thank you all for sharing your wisdom and knowledge about these long conditions and their successful management".(Qualified doctor with Long COVID)

"I caught Covid in autumn 2022 and struggled towards recovery through what felt like a long winter.  When a colleague sent  this Employment Toolkit to me,  I found it hugely supportive - its shared experiences, techniques and paths to understanding my symptoms, helpfully putting into context my own experience and normalising what was a really difficult time for me.  In particular, the case studies helped me think creatively with my manager on how I would work and cope with my symptoms". (Senior policy official with Long Covid)

"As someone who has been diagnosed with ME for five years, I've struggled to adapt and keep the balance that could enable to me to work sustainably, and possibly to recover. Instead of pacing, I have been in denial, ‘pushing through’ and masking the symptoms. I have found that there is a very poor level of understanding about ME in general which leads to employees either living in denial and pushing through (and paying the huge price for doing that) or having to stop working altogether. I know, firsthand, that much more must be done to support people with ME and Long Covid, who like me, with the right adjustments and understanding, can remain in work. This Employment Toolkit is an invaluable resource, written and researched by someone with long term personal experience of living and working with ME working with fifty others, a network of people suffering with Long Covid and ME.  I've found that this Toolkit sensitively captures the nuanced experiences of those living with these conditions and articulates them in a way that allows us to recognise the issues, find solutions and offers useful insights to those managers seeking to support us. It will provide a much-needed guide to managers and HR who are tasked with supporting people with ME and Long Covid more effectively".(Senior official with ME working fulltime)

"This Toolkit hit the nail on the head for how I’m feeling. I would also flag up that anxiety is a primary symptom in Long Covid alongside profound fatigue" (employee with Long COVID)

"Having understood, over many years, how to manage my ME in the workplace with help from workplace disability experts, I got to a place where I understand pacing, diet and health. It is such a long journey but I have largely recovered.  I never expected to share 'best pratice' guidance on the workplace with those now bravely battling Long Covid or ME, but it is a privilege to do so". (Member of the UK Chief Medical Officer's Working Group on ME, 2001)

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This employment toolkit was produced by members of a workplace 'Long Covid and ME staff network' working in a UK public sector organisation with extensive expertise in successfully managing staff with chronic health conditions. Building on medical advice (see NHS slides) from a qualified doctor working working in an NHS Long Covid Clinic and as experts at managing long term health conditions (either M.E or Long Covid) in the workplace, the group is sharing this practical guidance with wider employers and employees.  Wider information is drawn from sources such as the revised NICE M.E. Guidelines (2021), the ME Association, Action for ME.

Busy managers may find it helpful to read the short executive summary below. An affected employee can communicate further information or sections of the whole document and links, as appropriate.    

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Top TIps for Managers 

Following the Covid-19 pandemic, the number of employees with Long Covid, which has many similarities to ME, has significantly increased. The UK Office of National Statistics, UK (ONS) produced research during 2022 indicating that long term sick absence has increased in the UK by < 0.5million and that one contributing factor is the significant number of people no longer in employment due to having contracted Long Covid.  This research also suggests that some of those with Long Covid are joining/rejoining the workforce over time. Others with moderate Long Covid and Myalgic Encephalomyelitis (M.E.) remained in the workforce, even if they had to take short periods of sick absence. They may not be fully aware of how the Equality Act and mastering pacing can help support them Workplace adjustments can also make a transition back into the workplace viable. A key element in achieving success is an informed and sympathetic manager. 

An informed, understanding manager can make the difference between:

• a negative life outcome such as long-term disability, financial impoverishment and social marginalisation; and

• a positive life outcome such as long-term financial security, social participation and (partial or managed) recovery.

Employers have a heavy duty of care towards all disabled staff, including those with long term, complex and fluctuating conditions like Long Covid and ME. Remaining in work is the best option for those less severely affected by Long Covid and ME - if this remains viable. Viability may heavily depend on having an informed and sympathetic line manager.

Many people who have unavoidably developed Long Covid did so due to a global pandemic. ME was deeply misunderstood (and mistreated) for many decades. In fact, it was only due to the emergence of Long Covid that the medical profession has fully understood that ME is not a psychological condition.  It is now widely recognised that:

• ME and Long Covid are not psychological conditions

• Both conditions affect more women than men

• A significant proportion of the workforce of large and public sector organisations (potentially thousands of employees) are managing either Long Covid or ME while working, some with real difficulty e.g. without appropriate adjustments.

The aim of this toolkit is to help them continue in employment while managing these complex and challenging health conditions towards some sort of stabilisation or improvement, so that they do not get worse. The current level of medical understanding of both conditions is still patchy, even though both conditions are fully recognised by the UK health authorities and there are NHS clinics for both. It does not help that the symptoms of both, apart from fatigue and brain fog, are fluctuating, variable and individual in every case. Each case requires ‘individual listening’ by the manager to apply the most effective approaches.

Potentially, managers have a therapeutic role in these conditions in explaining invisible/hidden disabilities.   They can share with employees  that invisible or ‘hidden’ health conditions are fully recognised in the UK Equality Act (2010) and how these two health conditions are treated the same, under the law, as all other recognised and visible/invisible/hidden disabilities and chronic health conditions. An informed manager can also explain how those with Long Covid and ME fall into the legally ‘protected category’ and what that protection means.

Managers can help those affected by understanding ‘pacing’ a key management/recovery skill which is difficult for sufferers themselves to grasp and master. Pacing is the art of managing energy expenditure in line with energy supply to avoid drawing all the energy supply. The golden rule of pacing is ‘Only do 70% of what you think you can do’ leaving some energy for the body to rest, repair and recuperate.  Mini-breaks during the day and ‘constructive rest’ are key elements of pacing and can be built into objectives. Working from home contributes to pacing.

Staff with these conditions may be paying for private alternative treatments and more costly diets. To afford the cost of private treatments, heating and good quality food, they must try to stay in employment. To achieve this, they can be over-conscientious to the point that they override the need to ‘pace’ themselves.  Some of those affected, due to their illness, may find that their condition can impact on their sense of self-esteem and self-worth as they adjust (or find it hard to adjust to being chronically ill).

A good manager and/or a mentor can help to restore an employee’s self-confidence and help rebuild their sense of self-worth. In ME, at least some employees have a faulty internal self-assessment process (which is a neurological/sensory symptom of the illness). They may feel they are not performing adequately but, in reality, their performance appears to colleagues as satisfactory, or excelling.  A good manager can help rebuild the employee’s damaged self-confidence by giving them accurate, objective feedback to help correct their faulty internal viewpoint. A manager can also reassure those affected that the quality of their outputs is not diminished, even if those outputs take slightly longer to deliver and share that this element of their health condition can be managed using reasonable adjustments.

As an objective observer, an informed manager can also help an employee judge, from hour to hour, or day to day, whether they are overdrawing on their energy supply and risking a relapse.   It is not uncommon for those who make even one mistake in overexerting themselves to develop (more) severe ME or Long Covid. This can mean they are unable to leave their home unaided, or even their bed. They may be unable to perform everyday tasks and have restricted mobility. For a description of the categories of severity in ME (from the National Institute of Clinical Excellence’s revised Guidance on ME (Oct 2021) see here.  For an insight into how serious ME can become, see this short film about severe ME: Voices from the Shadows

A leading symptom of Long Covid is profound fatigue (which is shared by ME).  However, anxiety (and/or depression) is also common in Long Covid (but not in ME). This is closely related to a) the physiological changes and b) the uncertainty of having a new fluctuating illness of unknown duration. The anxiety will probably be triggered by the illness, but it may also overlay existing anxiety for which there are helpful interventions such as breathing exercises, grounding, avoidance of stress, music and getting out into nature.

A manager who fully understands the added effort expended by affected employees in being mobile appearing professional and in sustaining thought, concentration and information-processing can be very effective.  Employees may also be following a time consuming, specialist diet (and reading food labels carefully). So they are doing ‘a job and a half’ in terms of costly effort.

‘Post Exertional Malaise’ (PEM) is a feeling of being very weak, ill and internally disrupted, as in severe influenza, which many of those affected live with invisibly, hour by hour. PEM is more frequently reported in ME, even though fatigue is the main symptom of Long Covid too (often also connected to respiratory issues).  At times, someone’s energy levels may be lower than someone retired or someone in their eighties, but they feel under huge pressure to appear ‘normal’. An informed manager can openly recognise the effort of ‘appearing normal’. 

As a result, some of those affected may feel that their quality of life, while working full-time, is much reduced. Some may feel that (enforced) fulltime working is preventing them improving or stabilising. Part-time office attendance/home working, temporary part-time working and/or an adjusted job description may help solve this problem, if it is financially viable.  Anxiety about finances is not helpful for those with these conditions and they can find themselves ‘trapped’ between the need to keep going and the need to pay bills, particularly energy and food bills now subject to inflation.

A manager can signal affected staff to helpful resources such as workplace assessments, workplace adjustments, adjusted objectives and counselling services.  Working from home as a flexible adjustment is particularly helpful because the energy deficit is influenced by muscles and carrying weights. Hence mental energy is depleted by the effort of travelling to an office which is more profitable and efficiently utilised in stabilising the condition by working from home.

Since other staff are managing a (hidden/invisible) long term health conditions, line managers can play a part in normalising discussions about disabilities, chronic health conditions and reasonable adjustments. This will help to create a positive working environment by making every aspect of the workplace inclusive. 

For example, an engaged manager could a) actively share information about events on long term health conditions b) book events only at venues which are accessible and c) take into considerfation the impact of attending outside events on those affected e.g. offering them an overnight hotel.