M.E. -THE SYMPTOMS

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ME - The Symptoms

Myalgic Encephalomyelitis (ME) is the best-known illness manifesting chronic, profound fatigue.   ME is a chronic, fluctuating, neuro-immune condition that causes symptoms affecting many bodily systems, more commonly the nervous and immune systems.  

Prevalence and Background

ME affects an estimated 250,000 people in the UK, and around 17 million people worldwide. The leading symptom of this complex, long-term hidden condition is (often) delayed tiredness/weakness that affects people’s ability to carry out day to day activities. ME/CFS can affect anyone, including children and it is more common in women, often developing between the mid-20s and mid-40s.

Recent full medical recognition - partly due to Long Covid

ME has been a controversial and misunderstood illness for decades even though one of its alternative names was ‘Post Viral Syndrome’ (PVS). There have been controversial treatments deployed by doctors, particularly for the last twenty years, such as graded exercise (GET) and Cognitive Behavioural Therapy (CBT) which were already being recognised as ineffective for ME, in 2017.During 2020, a proportion of people who had contracted Covid-19 early in the pandemic, developed an ongoing fatiguing condition which shared many of the key symptoms ME. The medical establishment formally reassessed ME and understood that Long Covid and ME are both similar.  As a result, during 2021, the medical guidelines for ME were revised by The National Institute of Clinical Excellence (NICE). Republished in October 2021, they remove any recommendation for approaches to the treatment of ME as psychological, ending GET.  Therefore, full recognition of ME is related to the emergence of Long Covid and ME patients can share experience and guidance with those with Long Covid to some extent. 

It is useful for managers to be aware that:  

• many of those who developed ME before 2020 may have been seriously marginalised and experienced ‘gaslighting’ for many years. This misunderstanding has seriously affected their attitude to society/the medical profession and diminished their self-confidence; 

• some may still not know that the NICE guidelines have been rewritten and that ME is now a fully recognised physical condition, similar to Long Covid; 

• for those most severely ill, their situation has been, at times, desperate - as described in this graphic film ‘Voices from the Shadows’.  The most severely ill with ME are not working; but those who are working share many of the same symptoms described in the film, though mostly less acutely; 

• some people may have been disguising their ME for fear of its impact on their career, increasing their stress because workplace adjustments reduce stress;

• many employees may still be unaware that ME has had ‘protected status’ under the Equality Act since 2010.  Some will find it hard to see themselves as qualifying under the Act in the disability/chronic health condition category. 

In the light of the full recognition of ME, it is hoped that employees will feel that they can bring their ‘whole self’ to work and see the workplace as helpful, understanding and therapeutic. 

Symptoms

ME creates many of the same challenges as Long Covid in the workplace. The quality of the fatigue in both ME and Long Covid is not like ordinary, everyday tiredness. It is more like the profound fatigue and malaise experienced acute influenza that does not refresh with recovery or sleep (although quick rest helps to recharge some energy). The following are the criteria of ME diagnosis:

• debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion and is not significantly relieved by rest

• chronic pain

• post-exertional malaise after activity in which the worsening of symptoms:

  • is often delayed in onset by hours or days

  • is disproportionate to the activity

  • has a prolonged recovery time that may last hours, days, weeks or longer

• unrefreshing sleep or sleep disturbance (or both), which may include:

  • feeling exhausted, feeling flu-like and stiff on waking

  • broken or shallow sleep, altered sleep pattern or hypersomnia.

• cognitive difficulties (sometimes described as 'brain fog') e.g. some short term memory impairment, confusion, and difficulties with information processing and overload.

Fatigue

ME fatigue is usually accompanied by malaise which is a feeling of being ill at a cellular level (ill in ‘one’s DNA’).  The level of fatigue is not like tiredness but much more like the unpleasant, restless lack of energy in serious influenza. This malaise is part of Post Exertional Malaise (PEM - see below).   The fatigue may be accompanied with pain e.g. backache that never goes away.   Muscle fatigability, weakness and fasciculation is a key element of the fatigue.

Cognitive symptoms known as ‘brain fog’

• problems with concentration 

• problems with Information processing, mental fatigue from processing words/concepts

• memory issues such as being unsure about turning off the gas cooker and checking many times

• difficulty grasping the sense of rapid complex speech

• difficulty finding familiar words

• a momentary ‘memory gap’;  ‘blanking out’.

Neurological/immunological symptoms

These can include anything relating to immunity – ranging from reacting badly to some foods/chemicals leading to worsening of symptoms to anxiety/panic attacks/sore throat/ thrush/emotional lability/claustrophobia/dizziness and reactive depression. Sometimes people have a sense of not being their  ‘old self’ or being ‘cut off’ and seeing life as an observer, unable to interact with it.

Other ME symptoms may include

• orthostatic intolerance which may be a symptom of Postural Orthostatic Tachycardia Syndrome (POTS – see elsewhere on this website for details) 

• autonomic system and endocrine symptoms such as poor temperature regulation, intolerance of cold or heat

• immune symptoms such as tender lymph nodes, recurrent sore throats, fevers, or flu-like symptoms and new food or chemical sensitivities

• sensitivity to light, sound or vibration, taste, odours or touch

• gastrointestinal symptoms such as nausea, irritable bowel or abdominal pain

• poor coordination and ataxia (clumsiness)

• chronic pain

• anxiety and reactive depression.