BACKGROUND TO THESE CONDITIONS 

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These conditions share the symptom of profound fatigue with other fluctuating symptoms. The UK National Institute of Clinical Excellence's medical description of ME gives an insight into the complexities of these conditions:

'Myalgic encephalomyelitis (or encephalopathy) is a long-term condition that affects about 250,000 people in the UK. It can cause many different symptoms, which can be triggered or worsened by any kind of effort or activity. Symptoms include flu-like malaise, sleep difficulties, brain fog and a profound fatigue that is unlike normal tiredness. People may also experience chronic pain, headaches, nausea, digestive problems, and sensitivity to light, sound and other stimuli. Symptoms come and go and can change or worsen with little warning, causing distress and disrupting people’s lives. ME is different for everyone. It can range from a mild illness to a severely disabling one that leaves some people housebound or bedbound. Because it can look like many other illnesses, people often face uncertainty and delays in diagnosis. There are options that can help people manage their ME/CFS, but a therapy that helps one person may cause harm to another, so a carefully tailored plan and specialist advice is always needed'.

For the full NICE report (2021) see here.

Prevalence of Long Covid and ME

It is estimated by the ME Association that 250,000 (0.4%) of people have ME. It has been suggested that Long Covid is affecting <1.8m people (2.88%). Between 2%-3% of the workforce may have one of these conditions and staff with either illness which appear to be widespread across the workplace.  

Recent Office for National Statistics (ONS) data suggests that a proportion of those with Long Covid have managed to stay in work to this point but also a significant number are out of work. Being in work without reasonable adjustments with a fatiguing illness can be very stressful and they are available under the Equality Act (2010).  A key aim if this employment toolkit is to help that those with these conditions and their managers help put in place appropriate workplace adjustments since wider experience has demonstrated that adjustments can make all the difference to whether someone can stay in work, avoid getting worse and perform at their best.

The effect of working when chronically ill

Working with Long COVID or ME is challenging because refreshing leisure and holiday/social ‘down time’ which motivates and replenishes the energy reserves of others, needs to be used up for rest and recuperation, simply to carry on working. Those whose previous work pattern was relying on doing some overtime before they became ill will almost certainly have to discontinue this. It has been observed that workers with these conditions are ‘working hard 24/7 to stay in work’.  This leads to the (entirely subjective) perception among them that they are ‘diminished’ and ‘just getting by, but not living’.  They feel they will have a greatly reduced quality of life unless they improve.  Sufferers may feel they are missing out on socialising, finding a life partner, having or caring for children and travelling abroad. This is demoralising (in comparison with the lifestyle of others) but particularly hard for those who were previously very active, ambitious, fit and athletic and those who relied on physical strength for their career choice. 

The benefits of remaining in work

Even though there are complex challenges, remaining in the workplace can be beneficial and even therapeutic because:

• a quiet, interesting, supportive, ordered and predictable workplace and daily routine can be very therapeutic as a counterbalance to the unpredictable and fluctuating condition 

• fulltime work counters the very real threat of financial difficulties arising from the need to work part-time, or not work at all. Worrying about money creates anxiety which depletes the morale need to manage the condition 

• working can continue to boost self-esteem and provides ongoing direction, structure and purpose in a situation in which many ‘internal landmarks’ have changed

• working helps sufferers feel they still have a role.  They feel they are contributing to society, irrespective of their level of health.

• patient support groups/staff networks in and outside the workplace can be very uplifting and informative. These are ‘trusted spaces’ where non-judgmental people can openly share their anxieties and symptoms in person. They can provide friendship, respite, real empathy and cutting-edge (medical) information.

The possible triggers

• Long Covid can appear as a fatigue syndrome which seems to be triggered by the immune system’s response to the Covid-19 ‘spike’ protein and its symptoms may start a little later

• ME frequently presents as a post-viral fatigue syndrome triggered by (an apparently minor) infection such as a cold or during a period of high stress, or following a vaccination, a bout of Epstein Barr virus (glandular fever) or a course of antibiotics.

It is also considered that possible triggers may be one or more of the following:

• an underlying condition such as Postural Orthostatic Tachycardia Syndrome

• compromised immunity due to vitamin and mineral deficiencies, an unhealthy processed diet, earlier infections such as Epstein-Barr and toxins

• allergies and/or elevated levels of histamine

• an underlying genetic/atopic (allergic) predisposition

• acute or chronic stress (which is known to reduce immunity)

• immune challenges such as other infections and vaccinations/allergic reactions to vaccinations

• high viral load.

The challenges of going to work with ME and Long Covid are considerable because the workplace environment can make symptoms worse and can be a major stressor, due to range of challenges/barriers: 

• commuting depletes already weak muscles and stamina – and not being able to sit can lead to relapse. Due to the physical stress of travelling sufferers will use more of their leisure time for recovery

• carrying weights depletes energy rapidly and can cause serious relapses

• moving around, opening heavy doors and climbing steps causes fatigue and respiratory issues

• the brain working overtime to process more stimulus and information

• the stress of ‘keeping up an appearance’ and a professional persona, including dressing and appearing formal

• lack of somewhere to take a micro break and lie down in the office

• claustrophobia e.g. in confined spaces such as underground trains and lifts

• some people with ME find that they have symptoms similar to Irritable Bowel Syndrome (IBS) meaning they need to access a toilet at short notice.

A major challenge is that those with these conditions cannot, in advance, know the level of insight of either a new manager or a medical advisor. Managers who do not understand hidden disabilities/chronic health conditions can misinterpret them as manageable anxiety/psychiatric disorders/stress. Affected employees can develop major anxiety about being referred to medical advisers because they will not know if they are fully informed about these conditions and lack an updated knowledge e.g. knowledge of the latest NICE official guidelines on ME (2021).

One protection against this is the use of a Disability Passport before moving jobs to ensure that agreed adjustments in one role are reproduced in another.

There are also other perceived threats in the workplace such as:

• the stress caused by managers who may not fully understand that reasonable adjustments can include adjusted objectives, working from home (full-time) and flexible working hours

• difficulty in managing exertion which could lead to relapse and then managing the ‘delay’ effect between cognitive and physical exertion/stress resulting in fatigue < 72 hours later

• the challenge of being required to go on an ‘out of office’ visit

• no clear prognosis/outcome/timescale for improvement

• the stress of annual appraisals (and the misconceptions exposed through them)

• feeling that one’s performance is under-appreciated and not fairly assessed in relation to the non-disabled colleagues which is particularly demoralising in the light of the added personal effort of work

• feeling excluded from social activities either by low energy levels after work or lack of building access (e.g. team holding social events consistently in an inaccessible pub after work)

 Emotional stress

• stress from ‘keeping up a professional appearance’ and a ‘normal’ workplace persona, leading to the risk of overdoing one’s energy levels

• stress of asking for reasonable adjustments in a competitive work environment

·       the challenge of accessibility and mobility issues

·       anxiety about being trapped in a lift 

·       stress from others’ misinterpretation of one’s adjustments e.g. arriving later in the office having travelled off peak; working on a train remotely; not volunteering for external visits or applying for very physically demanding jobs or jobs that require someone to work long/late hours (and being perceived as not sufficiently ambitious); not mentally processing (or recalling) every piece of ephemeral information.

 Picking up other infections

 Added anxieties/challenges include

• the risk of catching another virus on top of Long Covid and ME which could make their chronic condition far worse or take them back to their condition at onset

• worries about how their dysfunctional immune system will cope with a bout of Covid, shingles, ‘flu or even a severe cold

• anxiety about what medical treatments for other infections a sufferer could cope with (if any) in view of potential allergic and immune reactions, particularly antibiotics

• anxiety about taking longer than others to recover from other illnesses, extending beyond normal workplace sick absence ‘trigger points’

• anxiety about practically coping with an infection, particularly for those living alone, due to the weakness caused by Long Covid or ME

Environmental challenges  in the workplace include

• poor ventilation (due to lower blood oxygen issues)

• high/low temperatures (those affected cope less with extremes of temperature which can be damaging for them)

• enervating humidity (on top of fatigue)

• visual distractions (stress exacerbates cognitive symptoms and tires the  brain)

• excessive noise (stress exacerbates cognitive symptoms and tires the brain)

• lighting in some areas (strong lighting rapidly tires the brain)

• lack of natural light (stress to brain of artificial lighting)

• lack of restful, therapeutic nature such as green plants. (Some people with mobility issues might find that they are less able to spend time in nature or that local green spaces are inaccessible to them)

• dietary challenges such as not being able to get helpful GF/suitable and healthy foods in a canteen.

Home working

The development of remote working during the Covid-19 pandemic was a positive development for many of those with chronic health conditions (which was positive, apart from its social isolation). It created more of a ‘level playing field’ for those facing the challenges of travel and office working and helped them to keep their added health costs affordable.

During the early stages of ME and Long Covid, fulltime home working adds real benefit in making pacing easier. More home working will probably make stabilisation/improvement/near recovery more likely. 

Nevertheless, managers cannot assume that someone affected will not want to come into the office (which can be therapeutic in terms of physical warmth, social contacts, food and quiet). Possibly, they would prefer to come in less often than others, and off peak, so they can sit on public transport and feel less stressed by the rush hour.  It is advisable to ask the employee what they would prefer to do.

It is important not to assume what would be best for a colleague but to explain that some people with Long Covid/ME find that coming into work less frequently, for shorter durations or off-peak can be helpful and that this is an option, if it feels right for them.

Major ‘bear trap’ 

Any suggestion or assumption, even unconsciously, that Long Covid and ME are ‘psychological’ or a mental health issue must be strenuously avoided, even if the person affected was under severe (emotional) stress when their condition developed.  It is likely that the causes of their condition are far more complex than stress.

There is no evidence that there is particular evidence of mental illness in those with these conditions, although at times, they may develop reactive depression, emotional lability (fragility) and anxiety which is partly as a direct reaction to their situation and partly as a symptom of their physical condition.  Those with these conditions would not recoil from being told they have a mental health condtion (if they did have one) but they will always recoil from asssumptions which are untrue ie. that their profound fatigue is 'all in the mind', or the cause is psychological. Even suggesting this is sufficient to end a constructive relationship with them.  

Effective treatments and outcomes

ME has been subject, in the past, to stigmatisation, discrimination, lack of support, misdiagnosis and even denial. This handling has negatively impacted the financial, emotional and relational outcomes of those with the condition and added excessive pressure on those who have additional caring responsibilities.  People with ME often have a sceptical attitude towards doctors and medicine and they may turn to private/alternative medicine and to more costly (GF) diets.  The only way to pay for all this is to stay in work. ME and Long Covid symptoms also intensify unhelpful patterns such as:

• staying indoors. reducing Vitamin D levels and muscle tone;

• reactive depression caused by anxiety and a sense of missing out;

• a diet of highly processed, convenience food;

• living a less healthy life than they want to.

With greater social understanding and acceptance, some of these negative outcomes could be lessened. Since the condition is individual, in everyone, each person needs to find a management regime which suits them and through careful experimentation test what helps them, personally. Appropriate self-management that can stabilise and possibly improve functioning over time/help prevent relapses may gradually lead to a greater sense of wellbeing. 

There are no recognised effective drug treatments for ME but some patients have reported improvements with avoidance techniques such as avoiding:

• highly processed foods (see NHS Eatwell Guide website)

• certain foods, like wheat, coffee, chemicals/additives, alcohol (people with ME often completely avoid these after keeping a diary of how they react) 

• certain behaviours - such as staying up too late, getting jet lag

• physical exertion - like playing energetic sports, running

• insistent noise and bright lighting  (due to photophobia)

• extremes of heat and cold

• strenuous hill-walking

• carrying heavy weights

• avoidance of mental over-stimulation

• avoidance of chemicals in the environment and in the home (and all vaccinations for going abroad)

• any emotional stress (and stressful people).

Many patients find the most effective regime in ME (and possibly also in Long Covid) involves:

• adhering to strict pacing  (see below)

• constructive planned rest

• not depleting one’s energy supply. Some find that daily exercise outside e.g. flat walking is beneficial and that Nordic walking poles help with walking and balance, particularly if going slightly uphill

• a healthy diet (see the NHS Eatwell Guide)

• avoidance of stressful people and situations (if these cannot be avoided, they should be time limited e.g. kept to half an hour at a time)

• some people over-reacting to medications and needing to ‘test’ them in reduced quantities

• some people finding that they need ‘non-adrenaline’ injections for dental work.

Complete recovery in ME (i.e. a return to ‘10/10’ on the severity scale set out on another page on this website) is rare and 95% of people with ME do not recover to ‘9/10’, though they may stabilise at a lower level. Possibly around 5% regain a sense of real wellbeing (for a range of reasons) so that they have no fatigue/malaise and disabling symptoms (‘9’ on the severity scale, below). Even if they regain 90-95% of their previous functioning, they will only maintain it if they continue to avoid certain things (while never entirely escaping from their underlying, managed ME). 

The prognosis for Long Covid is not yet known.  Effective management of Long Covid is likely to be similar and helpful, though it is too early for a prognosis regarding the long-term outcomes of Long Covid and whether those with Long Covid make a full or partial recovery, over time (or whether they just stabilise).  There has been a preliminary suggestion that antihistamines may be partially effective in some people with Long Covid, but this has not been confirmed by trials, as yet.  See here

Key barrier to improvement: mismanaging pacing

Pacing is a self-management technique that aims to balance energy and rest. Self-management is a broad description of a combination of knowledge, skills and strategies which people can use to reduce the impact of a health problem on their quality of life.  Pacing is not curative but can contribute to stabilisation of the condition, which potential improvement may gradually build on.

The revised NICE Guidelines (2021) suggest that pacing is a self-management strategy led by the person themselves with support from a healthcare professional in an ME or Long Covid specialist health team. Also:

• pacing includes all types of activity (cognitive, physical, emotional and social) and takes into account overall level of activity

• pacing helps people learn to use a portion of their available energy while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits

• pacing requires recognising that each person has a different and fluctuating energy limit and they are experts in judging their own limits (children and young people in particular may find it hard to judge their limits and can easily overreach them)

• pacing uses a flexible, tailored approach so that activity is never automatically increased but is maintained or adjusted (upwards after a period of stability or downwards, when symptoms are worse)

• pacing is a long-term approach – it can take week or sometimes even years to reach stability or to increase tolerance and activity. 

Basically, effective pacing helps prevent patients getting worse and may contribute to stabilisation and, in some cases improvement, over time.

A key barrier to stabilisation or some improvement in these conditions is a challenging internal battle between the weakened body versus the mind. The mind in these conditions seems to seek to reject, robustly, coming to terms with the chronic illness and it is common for people with these conditions to be perceived as having ‘difficulty coming to terms with it’.  The brain like the body is also subject to fatigue and gets frustrated with the limited energy that the body can supply. When the brain demands more than the body can safely deliver, this too can result in overdoing exertion and lead to (permanent) relapse. Balancing mental and physical drive with rest and the body’s need for recovery is the key to management. It is surprising that the mind does not adjust more easily, in view of the real danger of overdoing it. This is partly explained by the complex and constantly fluctuating levels of energy supply. Some experienced patients come to understand that the brain normally treats the healthy body as its ‘servant’ whereas, in these conditions, the body must be treated as a valued, equal and respected ‘partner’.

There are other ‘barriers to pacing’ such as:

• caring responsibilities and other obligations which might mean that it is very difficult to reduce levels of activity to a ‘safe’ level for someone ME or Long Covid.

Pacing can involve significant lifestyle changes at odds with a person’s previous lifestyle habits.  A person may have previously been able to regularly work overtime, exercise frequently or spend all evening socialising.  Changing routine is hard and some people cannot cope with (the fear of) missing out. Pacing also involves reducing activities. There are unhelpful assumptions that resting is being seen as ‘lazy’ which makes it harder to prioritise rest.  In addition:

• the nature of Post Exertional Malaise (PEM) which results in delayed fatigue can mean that it is only after a person has exceeded their energy limit that they realise they have done so.  Stopping in the middle of an activity can be very difficult, for a range of reasons.

• everyone is different in how they react to developing a chronic fatigue condition, but some people find harder than others to adjust e.g. very physically active, adventurous and athletic types of people and they may need support from an outsider to remind them to pace.

For more guidance on pacing see here and our web page with slides

The complexity of the condition is so mentally challenging that some people easily overdo things, finding it difficult to judge how much they can risk doing and for how long.  Coping with this challenge + work + a careful diet + the office environment and the other normal demands of life with such limited energy, requires a huge hidden effort/smarter living which is difficult because in ME and Long Covid patients finds information-processing much harder. Performing this level of conscious self-management when they do not feel well is draining, yet disciplining mental and physical activity so that it is in harmony with lower energy supply is crucial to prevent relapses. The golden rule of ‘pacing’ is:

“Only do 70% of what you think you can do”.

Patients are often driven by the feeling of ‘missing out’ on experiences, holidays and relationships and they may overdo physical effort e.g. in a 'one-off' act of running, playing a game of squash or tennis, climbing a mountain even after they feel much better. As a result of one misjudgement, they can relapse to an early stage of the condition or suddenly become worse, losing muscle function with permanent reduced mobility.  (For information on useful mobility aids such a mobility scooter, small wheelchairs and sticks, see the Annexes).

Some people with ME hide their condition at work and try to ‘soldier on’ as they did before without making appropriate adjustments and without pacing. They may do this to prevent others wrongly assuming that they are not conscientious (ambition does not disappear when people become ill). Others will only see them when they are active and not when they are resting or suffering from PEM.  Families too can make mistakes of interpretation and due to their investment and aspiration, sufferers may pretend to be ‘normal’ even at home, while also feeling bewildered by the lack of insight into their condition among relatives (and doctors). It is hard to realise how completely invisible these conditions are, including to loved ones and doctors, as well as to managers and colleagues.   Colleagues can help by treating their colleague’s disability as a normal part of working life.

There are also some time-management rules which are helpful for pacing:

• “Do, defer, delegate and drop…”

• “Build in rest before and after high-energy and stressful activities….”

• “Adapt the activity…”

Some people find it helpful to keep a diary, or schedule forward activities using mobile phone calendar alerts (which help memory, too).  Heart rate monitoring can be done using a smart watch or chest strap.