Chronic fatigue syndrome/ME
Chronic fatigue syndrome is a condition which is also known by several other names including myalgic encephalomyelitis/encephalopathy (ME), chronic fatigue immune dysfunction syndrome (CFIDS) and post viral fatigue syndrome (PVFS).
Despite the various descriptions the most popular terms in use today are ME and CFS which are often used together as though they refer to the same condition, a move deemed controversial by many sufferers and medical experts.
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What is ME?
ME is a condition which may have an identifiable trigger such as a viral illness, which is accompanied by various neurological symptoms and signs. It is a multi-system disease, affecting not only the neurological system but also the immune, musculoskeletal, endocrine (hormonal) and cardiovascular systems. In contrast, CFS is more commonly diagnosed in the absence of a detectable trigger and is usually based solely on an individuals symptoms, focusing on ‘fatigue’. It is for these reasons that CFS is considered to be the least serious of the two conditions.
As mentioned above it has now become commonplace to use the term ME/CFS as opposed to one or the other. The birth of this combined term came about in the 1990s when there was no specific diagnostic test for ME. At this point in time post-exercise fatigue was considered to be among the conditions most prominent symptoms and thus individuals with ME started to be diagnosed with CFS.
Since then there has been much research and debate over the combined use of the terms and in recent years experts have raised concerns over whether the diagnosis of CFS is so broad that it covers too many different patient groups. Furthermore, ME has been officially classified as a disorder of the nervous system in the World Health Organisation's International Classification of Disease. CFS on the other hand has received only a small mention in more recent versions, prompting experts to recommend that ME be recognised as a separate subgroup of CFS.
In light of these developments there has been much effort from ME and CFS experts and charities to differentiate between the two conditions. However, whilst the debate continues the significant overlap in the symptoms and treatment approaches of the two conditions means that many patients and medical professionals refer to ME and CFS as the same condition and continue to use the blanket term of ME/CFS. For this reason we will continue to use this terminology throughout the remainder of this fact-sheet.
ME/CFS is officially recognised as a neurological disorder by the World Health Organisation, the Department for Work and Pensions and the Department of Health. Though symptoms of the condition will vary from person to person it is often characterised by exercise induced muscle fatigue, post-exertional malaise and cognitive dysfunction involving memory, attention span and information processing among other symptoms.
Unfortunately there is much confusion surrounding ME/CFS which not only stems from the issues raised in the above regarding debate over whether ME and CFS are the same, but also from inconsistencies in the terminology used to describe both similar and dissimilar conditions around the world. As it stands there is no internationally agreed definition of ME/CFS and it is the interchangeable usage of terms such as chronic fatigue, chronic fatigue syndrome, myalgic encephalomyelitis, myalgic encephalopathy, myalgic encephalitis, chronic fatigue immune dysfunction syndrome and post viral syndrome that is cause for confusion.
A prime example of this would be the use of the terms 'chronic fatigue' and 'chronic fatigue syndrome' as used in the term ME/CFS, which understandably are often used as if they refer to the same condition. However, 'chronic fatigue' and the 'chronic fatigue syndrome' included in the term ME/CFS are two completely different conditions which require very different treatment approaches.
Chronic fatigue means that you have had exhaustion or a lack of energy for six months or more, and generally (though not in all cases) it is a symptom of another condition such as infection, autoimmune disorders, muscle and nerve disease, depression, sleep disorders, stress or nutritional deficiencies.
Chronic fatigue syndrome or ME/CFS as it is otherwise known is a disabling fatigue which has gone on for longer than six months and is completely different to that of normal tiredness. Activity has a hugely reverberating effect on those with ME/CFS with the effects of physical, cognitive or emotional activity often delayed by hours or even days.
The condition can occur in any one of any age and though some individuals may be able to continue their lives in a relatively normal fashion with minimal side effects, others will experience severe disruptions to their lifestyle often having to give up work, education, social activities and some may even become housebound, bed-bound or wheelchair-bound.
Diagnosis and testing for ME
As though ME/CFS didn't already play host to enough controversy and confusion there is actually another minefield when it comes to diagnostic testing and diagnostic criteria.
In order to achieve the correct diagnosis of medical conditions as early as possible it is helpful if there is a standard clinical diagnosis/set of guidelines to assist medical professionals in their diagnoses. However, as it stands no general diagnostic test or guidelines have been agreed upon for the effective or consistent diagnosis of the condition.
Unfortunately this has paved the way for numerous diagnostic criteria, all of which differ slightly in their interpretation of the illness. The various diagnostic criteria in use today each have their own school of thought regarding what triggers and perpetuates symptoms of ME/CFS, with some arguing 'physical' reasons and others favouring 'behavioural' and 'psychiatric' reasons.
It is for this reason combined with the fact that each set of criteria recommend different treatment options that medical experts and ME and CFS organisations are calling for a proper baseline for treatment. For now, research into causes and treatments will continue and a wide range of views and opinions of how people can be helped will remain.
Generally those who believe they may have ME/CFS will first have to undergo a series of tests to ensure that other possible conditions are ruled out. This may seem like a time consuming process but it is an essential step due to certain key ME/CFS symptoms being present in so many other conditions.
Below you will find details of the most common guidelines used for the diagnosis of ME/CFS (some of which were established for medical research). Please note, Counselling Directory do not endorse or favour any specific diagnostic criteria:
National Institute for Health and Care Excellence (NICE) guidelines
NICE define ME/CFS as a condition which commonly see's a previously active and healthy individual experience a complex range of symptoms including severe fatigue and malaise following mental or physical activity. The full effects of this exhaustion may only appear 24 to 48 hours after the previous activity.
The NICE guidelines state that the condition may be triggered by an infection, although in some cases there is no obvious causative factor and instead the individual may report a gradual decline in health over a period of months or years.
Guidelines (2007) from the National Institute for Health and Care Excellence (NICE) recommend that doctors consider diagnosing CFS if an individual has fatigue with all of the following:
- a clear starting point
- persistent and/or recurrent
- a substantial reduction in activity level
- unexplained by other conditions
- characterised by post-exertional malaise and/or fatigue (feeling worse after physical activity).
and one or more of the following symptoms:
- sore throat
- dizziness and/or nausea
- difficulty sleeping, or insomnia
- muscle and/or joint pain without inflammation
- painful lymph nodes that are not enlarged
- cognitive dysfunction, such as difficulty with thinking
- general malaise or flu-like symptoms
- physical or mental exertion that makes symptoms worse
- palpitations, without heart disease.
Not everyone will experience all of the key symptoms and there is also a whole host of 'minor' symptoms which are often not mentioned when patients describe their illness.
Recommendations from NICE with regards to the management of ME/CFS are aimed at maintaining a patient’s current emotional, physical and cognitive capacity and extending it where possible.
Different approaches will be used for different people and will be based on an individuals needs and the severity of their condition.
Some treatment options recommended by NICE include cognitive behavioural therapy or graded exercise therapy for individuals with mild or moderate ME/CFS. The decision to proceed with either treatment will be made jointly by the patient and professional.
The Oxford Criteria was developed by psychiatrists and is used for research purposes. The criteria identifies two key syndromes, chronic fatigue syndrome and post-infectious fatigue syndrome.
Severe and disabling fatigue which has continued for a minimum of six months is classified as the principle symptom in the former. Furthermore the fatigue has to have been present for over 50 per cent of the time. Other symptoms include that of myalgia, sleep disturbances and mood swings and the criteria states that patients with established medical conditions which are known to produce fatigue, and patients with a psychiatric diagnosis (schizophrenia, depressive illness, eating disorder) should be treated with caution as their current conditions could result in misdiagnosis.
The latter, post infectious syndrome (PIFS) is a sub category of CFS which is usually caused by a previous or current infection.
Those who oppose the Oxford criteria believe that it includes too broad a spectrum of individuals, including anyone who suffers from unexplained long term fatigue (which automatically includes those for whom psychological disorders are a contributing factor e.g. depression. Experts are concerned that this has resulted in emphasis being placed on the psychological aspects of the illness.
The Canadian Clinical Case Definition is a set of criteria which has been written by ME/CFS researchers from both the U.S. and Canada and is preferred by many patients and ME/CFS Charities. It is also the only criteria which has been developed for diagnostic rather than research purposes and states that the patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.
The criteria is also used for research purposes and makes it clear that in order to meet the diagnostic criteria a patients condition must worsen after exercise (not improve) and neurological, neurocognitive, dysautonomic and immune manifestations must be present. In laymans terms, patients must also exhibit symptoms other than fatigue to meet the criteria.
This criteria is much more specific than others in existence which means ME/CFS patients can be distinguished from depressed patients, fibromyalgia patients and other conditions which are often confused with ME/CFS.
Below is a summary of the Canadian Criteria:
- Fatigue - Physical and mental which substantially reduces activity levels.
- Post exertional malaise - Feeling dreadful after physical, cognitive or emotional activity with a slow recovery period which is usually longer than 24 hours. The full effect of activity on symptoms is often delayed.
- Sleep disturbance & pain - (A small number of patients don't have these symptoms).
- Neurological/cognitive difficulties – Problems with memory/concentration and perceptual/sensory disturbances.
- At least one symptom from two of the following:
- Autonomic manifestations e.g. orthostatic intolerance, nausea.
- Neuroendocrine manifestations e.g. loss of thermostatic stability, marked weight change.
- Immune manifestations e.g. recurrent flu-like symptoms, new sensitivities to food/medication/chemicals.
- The illness persists for at least six months and usually has a distinct onset.
Other diagnostic criteria
- The London Criteria
- Royal College of General Practitioners (RCGP) Guidelines
- The Fukuda Criteria
Treatment and management options
There is no cure for ME/CFS so instead treatment is aimed at managing symptoms and helping the sufferer to adapt to daily life.
Research into the prognosis of ME/CFS has indicated that only a very small number of sufferers will ever return to normal levels of health with many patients experiencing significant disruptions to their long term health.
Below you will find a range of treatment options which are aimed at both managing and reducing symptoms:
Some ME/CFS sufferers have reported that some complementary therapies have helped to provide respite from some symptoms. Acupuncture, homeopathy and relaxation therapy are a few which are particularly favoured. Patient surveys have also found meditation to be amongst the most helpful.
Counselling for patients and carers
Aside from the physical side effects of ME/CFS the condition also has a profound impact on emotional and psychological health. Those for whom the condition is moderate or severe may find they either lose or have to relinquish jobs, plans for the future, financial security, hobbies, relationships and any spontaneity they once had.
By the same token, anyone caring for a friend or relative with the condition may also have to make similar sacrifices, often leading to the development of feelings such as isolation and depression.
Both ME/CFS patients and their carers will have to make huge adjustments and coping with all of these changes will pose huge challenges for both parties. Below are just a few of the issues a counsellor may be able to help patients and carers overcome:
- Guilt and self-blame – Many individuals blame themselves for having ME/CFS or not recovering from it and feel guilty that others in their lives have to make sacrifices to care for them.
- Feelings of powerlessness – The inability to now carry out tasks which used to be possible can lead to a great deal of frustration.
- Pressure to increase activity – Feeling pressured to increase physical activity faster then the body allows can cause frustration, disappointment and can worsen the condition.
- Wanting to rewind the clock – Understandably ME/CFS sufferers wish to return to their previous level of mobility but this type of drastic recovery can't be guaranteed and is often unrealistic. Sufferers that dwell on who they used to be may develop feelings of self-blame, believing they could have done more to prevent the condition and it is these thoughts which prevent them from moving forward.
- Frustration – There is a common misconception that those with ME/CFS don't have the inclination to carry out activities. In actual fact it is the opposite for most patients, many of whom want to undertake activities but are prevented from doing so because of their symptoms.
- Fear - It is not uncommon for patients to fear the prospect of their condition remaining unimproved. In addition, a carer may also have similar fears to the person they are caring for. Worries about employment, financial insecurity, social life and relationships are completely natural but carers often mask these thoughts for fear of appearing selfish.
Counselling may also be a useful resource for children and young people with ME/CFS, on whom the condition can have a devastating effect in terms of schooling and emotional development. Educational inclusion via part-time or home schooling may need to be considered as must social inclusion to facilitate personal development.
Both ME/CFS patients and their carers will need a great deal of emotional support at times and this is something which counselling is able to offer. There are a variety of counselling forms and techniques and your practitioner will discuss with you which is most appropriate for your personal circumstances before embarking on a journey of achievable emotional steps forward.
Cognitive behavioural therapy (CBT)
Cognitive behavioural therapy is a branch of counselling which is based upon the idea that the way in which we think can influence and fuel certain health problems.
The aim of CBT is to help change the way a person feels about their situation and help them accept the diagnosis through changing what are considered to be any harmful or negative thoughts and behaviours.
The aim of CBT is not to cure the condition but to improve symptoms, day to day functions, emotional well-being and coping strategies.
As mentioned throughout this fact-sheet, though certain psychiatric schools of thought do accept that there may be a physical trigger to ME/CFS, they attribute the continuation of symptoms as behavioural, believing the body recovers but the symptoms continue. It is for this reason that CBT began to be suggested as an avenue of treatment, due to to it's ability to address 'negative thought patterns'.
Unfortunately some CBT treatment is solely aimed at convincing the patient into thinking they are only ill because they believe themselves to be ill, when actually ME/CFS is neurological in nature. It is for this reason that in recent years much debate has surrounded CBT and its efficacy, with some sufferers having been sectioned under Mental Health legislation for refusing to undertake the therapy and an increasing number of medical trials finding it to be ineffective or detrimental to some patients.
However, with that said it has been found to improve the lives of some sufferers and thus the NHS continue to recommend it as a treatment.
Mindfulness-based cognitive therapy (MBCT)
This relatively new therapy takes key elements of cognitive therapy described above and combines it with mindfulness practice. Mindfulness was originally a Buddhist meditation technique that has now evolved and made its way into the world of modern psychology.
The theory behind mindfulness is that our anxieties tend to lie either in the past or in the future. Mindfulness helps people focus on what is happening in the present moment in a bid to reduce stress and lower anxiety. The technique has so far proved effective with those suffering from anxiety and depression, and is now being applied to other areas of concern.
In regards to ME/CFS, mindfulness-based cognitive therapy may be able to help relieve associated stress, depression and insomnia. While recovery rates using the therapy are yet to be established, studies have shown that it can be an effective treatment for those with ME/CFS.
Graded exercise therapy (GET)
This is a structured exercise programme that gradually increases the amount of exercise and the intensity of it. The recommended level of exercise will be dependent on your symptoms and the severity of your condition and should ideally be supervised by a medical professionals such as a physiotherapist. Though GET can be effective in some milder cases of ME/CFS, others have actually found GET to be detrimental to their condition.
Painful symptoms such as muscle pain and headaches may prompt a GP to prescribe painkillers, though this is not an ideal solution and painkillers should not be taken over a prolonged period of time. Depression and other mental health concerns may occur as a result of the significant effects that ME/CFS has on a persons life, and medication may be prescribed for this. Medication may also be prescribed to combat sleep disturbance and in addition some patients find Melatonin taken before bedtime to be of help.
Pacing is a management strategy which research has found to be a gentle and effective way of managing symptoms in most cases of ME/CFS. The process involves planning out the day ahead so that rest, activities and needs are balanced, keeping the patient as active as possible whilst avoiding relapses from over-exertion. The idea is that doing this will help patients to avoid what is known as the 'boom bust' cycle, which essentially means a patient may do too much on a good day (the boom), but will then suffer the next day when the full effects of the physical activity come into play (bust).
The idea of pacing is not to set goals and targets but to make very limited energy go further. In order to achieve this a good first step is to establish a level of activity which can be sustained without worsening the patients condition.
The demands of individual activities should also be taken into account, with certain tasks such as household jobs using more physical and sensory energy and talking on the phone using more cognitive and emotional energy. Regardless of whether or not a patient is feeling as though they could do more, regular periods of rest should still be taken in small and frequent chunks.
The ultimate aim of pacing is to establish a routine which can be maintained over a longer period of time. When this can be maintained without worsening symptoms it may be possible to gradually begin introducing other activities but only as long as they remain within the limitations of their condition and do not exacerbate their symptoms and trigger a relapse from which pre-relapse levels of activity can not be attained.
Pacing alone is not considered to be a form of therapy or treatment type and is simply an effective way of ensuring energy is managed in the best way possible. Ideally pacing should be used as part of a programme which may include a combination of medical care, emotional support, cognitive behaviour therapy (CBT) and counselling.
Support groups can be beneficial to those living with ME/CFS. They provide a place to talk to other sufferers who completely understand each other’s problems, and share ideas of how to cope with the illness. Support groups can also help with practical issues, such as getting financial help if the individual is unable to work.
Encephalitis - Inflammation and irritation of the brain.
Encephalomyelitis - The general term for inflammation of the spinal cord and brain.
Encephalopathy - Disorder or disease of the brain. Today the term is usually used to refer to a syndrome of the brain caused by many different illnesses as opposed to a single disease.
Dysautonomic - Disease or malfunction of the autonomic nervous system.
Myalgia - Pain in a muscle or in multiple muscles.
Post exertional malaise - A long period of exhaustion following physical exertion.
What our experts say
- Chronic Fatigue - towards an understanding
Veronica Grigore, BABCP (Accred), Member of BPS, division of Clinical Psychology26th September, 2014
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