INTRODUCTION

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The aim of this workplace employment toolkit is to:

• to help colleagues identify and manage their own Long Covid or ME

• to inform managers about best practice on how to manage an employee working with these hidden/invisible conditions

We note that there are other disabilities/long term health conditions which can result in profound fatigue states such as: Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorder, Arthritis, Fibromyalgia, Multiple Sclerosis, Lyme Disease and Epilepsy. Long-term fatigue can occur post-operatively, as well. These types of fatigue are not covered in this toolkit which is specific to Long Covid and ME.

Two conditions with clear similarities

Long Covid and ME may not be the same medical condition and may prove, over time, not to have similar duration or outcomes. Both Long Covid and ME, however, share key aspects: 

• profound fatigue (plus ‘post-exertional malaise’ known as PEM in ME)

• cognitive symptoms such as brain fog and memory impairment

• chronic pain

• unrefreshing sleep.

In addition, both conditions: 

• are more common in women than in men

• are commonly accompanied by Postural Orthostatic Tachycardia Syndrome (POTS)

• benefit from pacing.

Both conditions affect more women than men which reflects the gender disparity common in many medical conditions, due to underlying physiology. For example, more men than women are seriously affected by acute Covid-19.

Long Covid and ME are both fluctuating, complex and hidden chronic illnesses/disabilities which can significantly impact the careers and life opportunities of those affected. Some people, particularly those most seriously affected are unable to remain in any kind of work; others can work if they move to less physically and mentally demanding roles or reduce their hours; others will need support to carry on in their current job.

Successful workplace management involves enabling access to workplace adjustments and mastering pacing. Building in micro breaks/rests to someone’s day helps manage the fluctuating fatigue, cognitive and other symptoms.  Sufferers will want to adjust their thinking, expectations and lifestyle which can help reduce the likelihood of their condition deteriorating. 

There is no known cure for ME and possibly no immediate cure for Long Covid either. A small proportion of people with managed ME have regained a sense of wellbeing, even if their underlying ME has not gone away. This is by no means true of all or even the majority of those with ME, even with concerted self-management. 

Mastering ‘pacing’ is crucial to the management of both these conditions to avoid sufferers getting much worse i.e. seriously disabled.

Impacts of Long Covid and ME

These are both life-changing, organic medical conditions. Whatever their underlying cause(s), Long Covid and ME are serious long-term disabilities resulting in a very restricted quality of life which can be more restricted, even in moderate states, than some forms of multiple sclerosis or types of cancer.  Some aspects of Long Covid, such as pulmonary fibrosis, may be progressive. Long Covid seems to share brain fog, chronic pain, memory and fatigue symptoms with ME but often involves challenging respiratory and other symptoms, such as anxiety, too.

Both conditions dramatically impact a person's ability to carry out everyday tasks and/or the speed and stamina with which they can carry them out.  Some find they are living at a pace of life similar to that of someone very elderly e.g. they are short of breath, have difficulty walking/standing and have memory and other cognitive difficulties.

Unfortunately, because ME is invisible, affects neurology/emotions and currently has no diagnostic test (though one may be developed, in future), it has been wrongly mislabelled as a form of ‘hysteria’ or ‘malingering’ in women, which it is not. There have been some very unhelpful and inaccurate labels wrongly attached to ME such as ‘Yuppie Flu’.  Some people have found that their medical professionals did not give them the support they needed, as recognised in the NICE report (October 2021) here.

The NICE report recognises that people with ME may have experienced stigmatisation by others (including family, friends, health professionals and teachers who did not understand their illness). This has a significant impact on their confidence. People with ME may have lost trust in health and social care services and be hesitant about engaging with less informed doctors. In these cases, a supportive, informed and accepting workplace can be highly therapeutic.

Shared learning

The symptoms and management techniques of Long Covid and ME are similar enough to share support groups until there is deeper understanding of Long Covid. In addition, those who have managed ME in the workplace have a lot of learning that they can share with those managing Long Covid in the workplace, particularly about ‘pacing’, with which a manager can actively support them. The ME Association now offers support both to those with ME and to those with Long Covid. 

Differences

Long Covid may involve lingering/legacy respiratory symptoms/damage. Cardiac and clotting and other symptoms may also be involved and associated conditions are listed below. ME does not have these added associated complex conditions but those with ME (and Long Covid) frequently have undiagnosed Postural Orthostatic Tachycardia Syndrome (POTs), or another undiagnosed underlying condition (or diagnosed co-morbidity).