Nor bring to see me cease to live
Some doctor full of phrase and fame
To shake his sapient head and give
The ill he cannot cure a name
Matthew Arnold (1822–1888)
Chronic fatigue syndrome affects the communication between the internal organs and the musculoskeletal components of the body. This organ of communication is known as the sympathetic nervous system, which may be likened to a transmission system in a power station.
In our homes and at work we use electricity for lighting, for cooking, refrigerating and freezing, for household electrical appliances, and for music centres, TVs and computers. The electrical energy required is produced by power stations and is monitored by controllers in a transmission station, which channels the amount of electricity through to us, the consumers.
If we were all suddenly to use substantially more electricity, simultaneously, the transmission station would allow more electricity to flow, signalling to the power stations to produce more energy. This occurs, for example, at ‘halftime’, during major international televised sporting events, when everybody turns on the kettle at the same time to make a cup of tea.
If something was wrong with the operator, or the equipment in the transmission station was faulty, the power required to cope with the increased demand would be insufficient. This would eventually lead to a power cut and blackout. Alternatively, if a situation arose when too much electricity passed into the household’s supply, an overload or power surge could damage the appliances in use at that time.
In the body, the muscles are the principal ‘electrical appliances’, utilising most of the energy produced. The power station of the body is the gastro-intestinal system together with the respiratory system, which consumes fuel in the form of food and utilises oxygen to produce the energy.
The sympathetic nervous system is the transmission station, which connects the visceral ‘power station’ of the body to the musculoskeletal ‘appliance’.
When we are active, the sympathetic nervous system stimulates an increase of energy production and a release of stored energy. If this is not accomplished, the result is that the muscles will not receive enough of the nutrients normally obtained from the blood, and the natural function of the muscles, nerves and joints will break down. There will be a power cut in our body and we will suffer fatigue.
This is precisely what occurs in patients suffering from CFS/ME. The body demands more energy, especially when under any form of stress, mental or physical. However, the mechanism normally operated to transform the stored energy into a usable form is not functioning, and thus the patient’s body simply stops working effectively.
CFS/ME is a profoundly debilitating disorder and requires as much rest as possible to reverse the process by minimising the amount of stress on the body. The power station analogy explains why some sufferers seem to display signs of too much sympathetic activity such as palpitations and excessive sweating as well as reduced sympathetic activity such as fatigue and low blood pressure. The fault with the ‘transmission station’ can lead to part of the body working in overdrive and another section of the sympathetic nervous system in a power cut scenario. Reducing the demand on the sympathetic nervous system helps the patient on to the road to a full recovery.
The disorder CFS/ME is known to many as ME, chronic fatigue syndrome or post-viral fatigue syndrome. In the United States it is now more commonly referred to as chronic fatigue and immune dysfunction syndrome (CFIDS).
Most diseases are classified according to the type of change that takes place in the cells of the body. Some diseases are categorised according to causative factors, e.g. a viral infection or a bacterial infection. The problem with Chronic Fatigue Syndrome (CFS/ME) is that it does not fit into any particular category.
CFS/ME is so diverse in its signs and symptoms that no specific disease classification fits the bill. Thus the term myalgic encephalomyelitis: myalgic refers to pain in muscles and encephalomyelitis relates to the possible effect on the brain and spinal cord. This term may suggest that there is inflammation of the central nervous tissue. However, with CFS/ME, inflammation of the spinal cord is not always present. Although some general practitioners, physicians, rheumatologists and immunologists recognise the category CFS/ME and realise that there is something wrong with the patient, they do not know what to diagnose or how to treat.
Most of my patients who suffer from CFS/ME have been to neurologists, undergone brain scans, X-rays, blood tests and many other exhaustive examinations, all of which have yielded inconclusive evidence. The usual advice given to sufferers is to rest until the body sorts itself out or they may be told to get on with life as best they can and try to forget about it.
Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME), as it has been known in the UK since an outbreak was identified by physician Dr Melvyn Ramsay in 1955 at London’s Royal Free hospital,1 is a clinically accepted condition now referred to in Great Britain as CFS/ME. As the suffix ‘itis’ means inflammation of some kind, some health professionals now use the term myalgic encephalomyelopathy, signifying a disease state within the spine but not necessarily accompanied by inflammation.
We know that CFS/ME is characterized by:
The name chronic fatigue syndrome, compared with alternative terms, best describes this illness. The use of the term ME (myalgic encephalomyelitis/myalgic encephalomyelopathy), which is not widely used except in the UK and Canada, can lead to confusion and may substantially undermine the progress that has been made by research to date. The joint term CFS/ME has been agreed upon by the UK’s independent working group in its report into the condition to the Chief Medical Officer, published on 11 January 2002,2 and I believe it to be the most suitable name at present.
CFS, according to Dr Keiji Fukuda and his colleagues3 at the Centre of Disease Control, Atlanta, USA, in 1994, is defined by the presence of the following:
In addition, the concurrent occurrence of four or more of the following signs and symptoms must exist, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue:
Another frequently used set of diagnostic criteria developed by Dr Michael Sharpe and colleagues in 1991 and used in the UK is the Oxford criteria,4 which is similar to that of the Centre of Disease Control’s definition (stated above) but differs in the number of signs and symptoms needed to confirm the diagnosis and, most significantly, will still diagnose CFS/ME in patients who are known to suffer from minor psychiatric disorders such as depression and anxiety states.
In 2003 Dr Bruce M. Carruthers and his Canadian colleagues published a new working case definition of CFS/ME.5 It was the first set of criteria for the diagnosis of CFS/ME rather than the less specific term CFS. This clinical case definition, which is gradually being accepted around the world, states that in order to be diagnosed with CFS/ME the patient:
Historically many terms have been given to CFS/ME type disorders and some of these may be different names for the same disorder. As early as 1871 Union Army doctor Dr J. M. Da Costa described a fatigue disorder that affected about three hundred soldiers during the American Civil War.6 The soldiers had all been in active service for some while.
The signs and symptoms listed were as follows:
Dr Da Costa noted that when the soldiers’ signs and symptoms had eased, and after they had returned to duty, their performance on the battlefield was of a low standard and that they were unable to keep up with their healthy comrades. Dr Da Costa suggested that the cause of the problem was due to physical over-exertion and physical stress of the body, leading to an ‘irritation of the heart’. He proposed that the condition was sustained due to an imbalance in the nerve supply to the heart, which includes sympathetic nerves. It became known as Da Costa’s Syndrome, also called Irritable Heart Disease. Clinical scientist and cardiologist Sir Thomas Lewis (1881–1945), the pioneer of the electrocardiograph, wrote a paper in 1920 noting similar cases during the First World War, which he labelled ‘Effort Syndrome’, also known as Neurocirculatory Asthenia. Lewis concluded that an infection was at the root of the problem.7
Since Lewis, a number of physicians, neurologists, cardiologists and others have searched for the cause, constantly redefining this mysterious disorder. An outbreak was identified by physician Dr Melvyn Ramsay in 1955 at London’s Royal Free Hospital.1 After many doctors, nurses and patients were struck by a mysterious virus, there was one group that did not recover but continued to suffer with lethargy and a range of signs and symptoms now known to be associated with CFS/ME. The group you would expect to be most severely affected by a virus would obviously be the patients, but the sufferers of what came to be called myalgic encephalomyelitis or Royal Free disease were mostly nurses. In the 1950s nurses often had to lift heavy loads and were in a very demanding job, physically as well as mentally, placing significant strain on the spine. This is true of many CFS/ME sufferers, which, as will be explained later in the book, is no coincidence.
Eminent psychiatrists have pointed to a possible psychological source of the disease.8 From the label Yuppie Flu of the 1980s to the dismissive attitudes of some practitioners, many patients feel isolated and depressed as a result of ignorance. The inability of most of the health care profession to legitimise this illness has been shown to aggravate psychiatric morbidity in sufferers. Sufferers have been labelled as unmotivated and school or work-phobic, although many of my patients are well motivated, high achieving type ‘A’ personalities.9
Research findings continue to lay the blame for CFS/ME on the patient’s inability to cope with daily problems, fear of physical activity,10 or altered perception of illness11 or worse, on parental attitude such as maternal overprotection in childhood.12 It remains a condition that attracts controversy since many of the signs and symptoms are non-specific and are common to many other illnesses, including psychiatric disorders. Depression, which is a common feature of the disease, has been viewed as a sickness behaviour seen in many chronic illnesses. CFS/ME continues to be an enigma that confounds medical research. Apart from the strain of suffering from a severely debilitating illness, much emotional stress emerges from the refusal of others to accept the validity of the illness, leading to strained relationships at home, work and school and with members of the social services and medical profession.
CFS/ME sufferers tend to be highly motivated individuals who were very active before the illness struck them down. They find it highly depressing being inactive. The depressed feelings and attitude of CFS/ME patients are commonly mistaken for clinical depression. Clinically depressed patients feel better when involved in increased activity, which unfortunately aggravates the symptoms of CFS/ME. CFS/ME patients feel miserable, not due to a psychiatric disorder, but from profound frustration.
The UK’s government’s independent working group’s report into chronic fatigue syndrome/myalgic encephalomyelitis in January 20022 estimated that a general practice with 10,000 patients was likely to have between thirty and forty CFS/ME sufferers. The prognosis for this complex disorder is recognised as very variable. The economic impact on individuals in the form of informal care and lost employment can be devastating. Statistical analysis carried out in 2003 by the Survey and Statistical Research Centre at the UK’s Sheffield Hallam University revealed that CFS/ME annually costs the UK government around £3.5 billion in benefit payments, caring and loss of taxation.13
The rest of the world does not fare any better. An American study in 2004, by Cynthia Bierl and colleagues at the National Center for Infectious Diseases in Atlanta, found that 2.2 million American adults between the ages of 18 and 69 years suffer from CFS-like illness.14 On a global scale the impact of CFS/ME on society in both human and economic terms is of great magnitude.
Although many relatively small research projects have been carried out, financed mainly by private charitable trusts, pharmaceutical firms, the main sponsors of medical research, have tended to shy away from financing any major studies investigating CFS/ME. As demonstrated from present socio-economic research, there is clearly no evidence to justify this lack of interest compared with the research funding for other global diseases such as AIDS.15
Some breakthroughs have been made which may mean objective clinical tests may become available to assess the severity of CFS/ME – such as a test called the head-up tilt test, using the haemodynamic instability score, which measures the change of flow and pressure of blood when the patient is placed on a tilt table, turning them upside down and then upright. In CFS/ME patients blood pressure takes longer to increase when changing from horizontal to upright and thus many feel initially faint. This phenomenon, known as neuro-mediated hypotension, is I believe due to disturbed sympathetic nerve activity, which then fails to monitor changes of position and make the correct adjustment in the cardiovascular system.16 Yet still no universally accepted investigative tests for this condition have been validated in scientific studies. From the diagnostic viewpoint, there has been little movement in classifying the disease in over a decade, although the recent Canadian initiative to standardise the diagnostic criteria may help.5
The symptoms of CFS/ME typically become apparent following a common viral infection, although many other causative factors have been suggested:
Important research26 is investigating common viral gene expressions found in CFS/ME, which will help with earlier diagnosis, and perhaps some patients identified with the viral signature will soon have a treatment to help rid their body of the offending microbe. However, in many cases there appears to be no apparent cause triggering the condition.27 Diagnosis of CFS/ME can be made only after all other medical and psychiatric causes of chronic fatiguing illnesses have been excluded.
Red blood cell structure has been studied in various diseases and findings have shown that the most common aberrant shape of a red blood cell in CFS/ME patients is a flattened disc with up to 80% of cells having this abnormal shape.28,29 This alteration may lead to loss of fluidity and flexibility of the cell wall resulting in reduced access of these cells to the deep capillary beds, thus reducing oxygen supply to tissues and exacerbating any fatigue. Decreased concentrations of essential fatty acids in red cell membranes of CFS/ME patients were thought to be causing the malformation of the red blood cells. In fact, research at London’s Hammersmith Hospital in 2003 by Professor Basant Puri has revealed a deficiency in fatty acids in CFS/ME sufferers, which are important for the healthy maintenance of all cell membranes.30 Puri and his colleagues discovered that a combination of an omega-3 fatty acid, eicosapentaenoic acid (EPA), together with unprocessed and unrefined virgin evening primrose oil, was the best combination to restore health. In the body EPA naturally converts to another fatty acid, docosahexaenoic acid (DHA). DHA then combines with the brain chemical choline to form a bond that strengthens and even repairs damaged brain cell walls. However, Puri has discovered that if DHA is taken as a supplement, as in many fish oil preparations, it inhibits some of the healthy effects of EPA, such as its antiviral property. Thus any omega-3 supplement should contain only EPA and no DHA.
A considerable body of evidence now indicates that the central nervous system is profoundly involved in the process leading to CFS/ME. Many research studies are now focusing on the high levels of toxicity found in CFS/ME patients, caused by organic solvents and heavy metals – such as mercury – which affect nerve transmission.31–34
Age: 18 years
Occupation: school student
Marital status: single
For three months before the start of my treatment, Miss F had been spending all day in bed. She had fallen ill suddenly in early spring, during the build-up to her Advanced Level exams. She was a grade A student who was expected to achieve just reward for the hard work and effort she had put into many years of study. Instead, she could hardly move out of her bedroom. She could not concentrate or read any book, never mind the school textbooks. Besides severe fatigue, she suffered from pain in the shoulders, arms and legs, headaches and dizziness.
She had already been diagnosed as suffering from ME by a specialist following a battery of exhaustive blood tests at her GP’s practice and hospital. He had advised her to live as restful and healthy an existence as possible, and the disease would eventually burn itself out.
Her mother and father heard about the results that I was achieving with CFS/ME cases, and brought her to me for a consultation. She was virtually carried in by her parents who seemed to be desperate and looked as though they had little hope in an osteopath being able to help. Clearly her condition was very serious. On examination her spine had a badly developed curvature in the mid thoracic region, exacerbated by years of study bent over books and computers, with the upper section quite flattened. She had all the specific tender points with much lymphatic congestion in her chest and neck. Her cranial rhythm was very sluggish and hardly palpable.
Once I had examined her, I found the mechanical problems common to all my CFS/ME patients. Miss F’s parents were surprised by my enthusiasm in treating their daughter, and that I was so positive that I could help her.
With an intensive course of treatment of weekly sessions over the next few months involving articulation and soft tissue massage to improve the spinal mechanics and lymph drainage and reduce muscular tone the same girl, by the end of the summer, had not only restarted her A-level course work but gained three As in her exams. She then went on to study English at university for three more years and gained a first class honours degree. After a successful career as a PA for a leading actress and film director, she is now happily married with a young baby and, most important, perfectly healthy.
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