The condition known as Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is a potentially debilitating illness characterised by fatigue, un-relieved by sleep, and an array of other symptoms from pain to cognitive difficulties. It has for some time been little understood but latest research, particularly in the area of psychoneuroimmunology, suggests that it is a maladaptive stress response which can be relieved with interventions which ‘retrain’ the relevant part of the brain.
There has been a history of recorded outbreaks – in Los Angeles in 1934 when it was called non-paralytic polio, Iceland in 1948-49, The Royal Free Hospital in London in 1955, when it became known respectively as Iceland Disease and Royal Free disease. In the nineteenth century it was known as neurasthenia and it is speculated that Florence Nightingale suffered from it and her birthday has been adopted as International CFS Awareness Day. Further back Sir Richard Manningham reported on what was called febricula, or little fever. Today it is still know by an array of names (see below). This article uses the term ME/CFS.
What are the Symptoms?
Only those who have experienced the condition can understand how it feels; to others it is baffling and confusing as the patient may at times appear healthy only to plunge into a debilitating fatigue moments later or may display a range of shifting symptoms. It may be little surprise then that the illness has for many years aroused controversy which has led to confusion about the most appropriate treatments or therapies.
For many fatigue is the overwhelming symptom but others are prominent: impaired concentration (often described as brain fog), muscle pain, persistent sore throat, poor temperature control, hypersensitivity to noise or light, digestive problems, disturbed sleep, low grade fever and weight loss or gain. Some or all may be present.
At Least a Quarter of a Million People
Estimates of the number of people affected by ME/CFS vary considerably but a figure of around 250,000 people in the UK is often quoted (17 million worldwide) an estimated 29% of whom are housebound, another 4% bedbound. Ages range from young children – 25,000 in the UK are under 18 years – to the elderly and more women than men are affected by a ratio of 3:1. The illness may resolve after a few months or persist for decades.
Mild, Moderate Or Severe
At its most severe the patient may be confined to bed unable to move, to speak, to feed, to tolerate any noise or light and requiring 24 hour care. As these severely affected patients are cared for at home, in a nursing home or occasionally in hospital the general public may be unaware of how debilitating the condition can be. There have also been a few documented cases of death. At the other end of the scale patients may be able to continue to work and appear to be functioning well but will need to spend all evenings and weekends resting and recovering.
Without a simple biological marker or test it can be hard to diagnose. Diagnosis relies on tests to eliminate other illnesses which present with similar symptoms and the fulfilment of a set of clinical criteria. These vary not only from country to country but also may vary between different institutions within a country. It is argued that the lack of agreed standardised diagnostic criteria reduces the value of treatment trials and hampers research progress.
Despite the World Health Organisation classifying ME/CFS as a neurological disorder (code WHO-ICD-10-G93.3) there remains unfortunate controversy surrounding the condition, stemming from the complexity and variability of the symptoms. Some is from frank disbelief on the part of some people that ME/CFS is a real and seriously disabling illness, and some from disagreement within the medical profession over its cause, and therefore its treatment. This has resulted in inappropriate advice and treatment regimens, refusal of state benefits, lack of funds for research, and much distress to patients.
The controversy extends to its name with overlapping usage of Myalgic Encephalomyelitis (ME), Myalgic Encephalopathy (ME), Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome(PVFS), Chronic Fatigue Immuno-deficiency Syndrome (CFIDS). Patient groups argue that the terms are not interchangeable and that Chronic Fatigue Syndrome is broad descriptive term while ‘true ME’ is a distinct subset, or indeed a completely unconnected condition. In addition there is Fibromyalgia (FM) , a related condition characterised by widespread pain, which has many features in common with ME/CFS.
Now largely recognised as a maladaptive stress response involving the hypothalamic-pituitary-adrenal axis (HPA), there have in the past been many theories and a few blind alleys in the hunt for a causal agent. While many – around two thirds – experience the onset of the condition after an infection, no specific infectious agent has be identified. Epstein Barr virus, which causes Glandular Fever, is often present and was at one time considered the culprit; other areas of investigation include Human Herpes Virus 6 and recently (October 2009) the retrovirus XMRV which has been in the news after research found that a high percentage of ME/CFS patients had antibodies to the virus present in their blood, although these findings have not been replicated in a UK study (January 2010).
Other triggers appear to include physical trauma like a car accident or surgery or excessive physical exertion as seen in some athletes, vaccinations, exposure to toxins, and adverse life events such as bereavement.
Recent studies suggest that in the face of such stressors ME/CFS patients have a genetic predisposition to develop the condition via an overly responsive area of the brain which stimulates the hypothalamus, the pituitary gland and the adrenal glands. This HPA dysfunction, also known as sympathetic dysfunction, forms the basis for some complementary treatments including those involving ‘brain training’, see below.
Treatments fall roughly into two categories, those which are intended to help the patient manage the illness so that it can be lived with, and those which address the dysfunctional stress response with the aim of restoring normal functioning. First we may look at complementary approaches:
(1) Complementary Treatments
Of the many complementary therapies on offer some address specific symptoms while others are more holistic and to address the stress response by treating the whole mind-body with the aim of recovery. They include:
This recent approach – a type of brain training – involves the patient taking a short intensive course and learning a set of techniques to recover their health. Based on the theory that, in a patient with a genetic susceptibility, a specific part of the brain has suffered some sort of trauma and become over-sensitised, the training is designed to intervene in the resulting loop of stress response/endocrine dysfunction/immune system dysfunction/increased stress….and so on (the ‘sustained arousal’ of the HPA axis seen in ME/CFS).
By using methods derived from Neurolinguistic Programming, hypnotherapy and Mindfulness – the evidence-based approach increasingly finding favour with the NHS – the programmes utilize the brains natural capacity to change and grow – known as neuroplasticity – and teach methods to reconfigure neural networks. This regularises the stress response and eliminates symptoms, including those caused by opportunistic viral or bacterial infections. The aim of the training is full recovery and results may be rapid or build over weeks.
Latest research in psychoneuroimmunology – the way that our endocrine, immune and nervous systems and our minds all interact – provides a theoretical framework for the training.
Like Cognitive Behaviour Therapy (CBT, see below), the recovery courses are also effective for patients with recognised organic conditions and the fact that they have good results with ME/CFS patients does not imply that the condition is a psychological one, merely that it has, like all illnesses, a psychological component and relief can be achieved through an intervention that includes working with the mind.
According to the ME Association there is little research that supports its effectiveness in ME/CFS. However some people do experience some improvement (and a few experience adverse reactions). One trial involving electro-acupuncture for patients with the related condition fibromyalgia (characterised by widespread pain) reported encouraging results.
Herbalism, Chinese or Western
Like drugs, herbs can have unwanted side effects and it is important to find a qualified practitioner. Some people report benefit. Always consult a qualified herbalist.
What we eat is clearly of great importance to our healthy functioning and a good diet is essential for anyone recovering from illness, and indeed, to prevent it. A number of ME/CFS patients experience food intolerances and Irritable Bowel Syndrome and find that dietary changes help their digestion. Some dietary regimens may be radical and difficult to follow, particularly for someone with limited energy and/or funds. There has been much talk about an overgrowth of Candida Albicans in the digestive tract but this is controversial with no scientific evidence to support it.
Along with diet go nutritional supplements. There is a whole wealth of vitamins, minerals, digestive enzymes, concentrated “green foods”, protein and amino acid supplements and food stuffs that are recommended by complementary practitioners, nutritionists and/or dieticians. The digestive difficulties that some patients experience may mean that they are failing to metabolise their food sufficiently, resulting in deficiencies. Some have found supplementation helpful and Dr.Jacob Teitelbaum a respected US clinician, recommends good quality supplementation if deficiencies have been identified.
This, although controversial, may be available on the NHS as some homeopaths are also doctors. By treating ‘like with like’, homeopathy gives minute doses of substances which would normally produce similar symptoms. One UK trial found greater improvement in the subjects taking a remedy than those in the placebo group.; others have been inconclusive.
A number of treatments derived from practices like Shiatsu, Reflexology, Tai Chi, Qi Jung, Cranial Sacral Osteopathy, Pilates and Yoga are widely available. Some patients have found them too robust while others have benefited. It is theorised that the reduction in stress which results from such work favourably affects the Hypothalamus in the brain and the Pituitary and Adrenal glands (the HPA axis), known to be dysregulated in the condition.
The co-enzyme NADH (trade name Enada) has been reported to have improved the symptoms of subjects in a small double-blind randomised trial at Georgetown University in America. Classified as a food supplement, NADH is a form of vitamin B3 and present in every cell.
(2) NHS Treatments
The NHS largely adopts the approach of offering interventions for the management of symptoms rather than for their elimination. The focus is on pacing, that is the careful monitoring and control of all physical and mental exertion in order to avoid the boom and bust – a period of ability followed by a, usually much longer, period of incapacitating fatigue – and so conserve energy. The Expert Patient Programmes available on the NHS show patients how to manage and live with their illnesses.
Other treatments available from GPs include magnesium injections, vitamin B12 injections and antidepressants. The latter are prescribed as much to regulate sleep or reduce pain as to raise mood. Patient groups insist that ME/CFS/PVF is not the same as, nor a version of, depression but has different clinical features and different bio-markers as evident in, for example, MRI brain scans and endocrine activity.
The patient may be offered a course of Cognitive Behavioural Therapy (CBT). This is a psychological approach that can help patients to cope with illness and its use does not necessarily suggest that ME/CFS/PVF is a psychological condition; CBT is used to help patients with a range of illnesses including, for example, cancer. Although it is the preferred treatment of many GPs it is not always popular with patient groups: according to Action for ME‘s members’ survey some find it helpful, others find that it exacerbates symptoms. It is crucial that it is carried out by professionals with a thorough understanding of the illness.
Graded Exercise Therapy, where the patient gradually – very gradually – builds exercise tolerance, is equally not very well received by patient groups which report that while 45% benefit, 33% worsen. Dropout rates in studies have been high.
There have been trials of antivirals like valganciclovir which have shown some success when administered to patients with antibodies present.