The healer of those that are broken in heart and the One Who binds up their sorrows
Book of Psalms CXLVII, verse 3
No one can be certain of the best possible treatment for CFS/ME until the cause is established and accepted. However, the one common feature of all the treatments for CFS/ME is the removal of stress-producing factors. We know that stress is damaging the body in some way or another, whether it is through too much yeast, too little magnesium or a viral infection (see below).
A build-up of stress in the body eventually reaches a point at which the slightest overload causes a complete collapse. This is similar to a child building a tower of dominoes, one on top of another. Sooner or later, one too many will cause the whole stack to become unbalanced and collapse.
The accumulation of any stress in the body can be due to many causes, but, by treating each individual stress factor separately, rather than the problem as a whole, the pressure on the body may be reduced but will not be totally alleviated.
Current therapies used to treat CFS/ME are based on differing opinions as to the cause of the disorder. I described these possible causes in Chapter 4, including:
One has to treat all the causative factors together in order to reverse the whole process and therefore in this chapter I will consider:
In the wild when animals are poisoned they naturally seek out waterholes. With CFS/ME one should drink around 2 litres of fluids such as mineral or filtered water every day. This helps with detoxification, but care should be taken not to drink too much. Simple sensible dietetic practices should be followed, such as avoiding foods with too many additives, artificial flavourings and colourings and rejecting junk food whenever possible.
Many CFS/ME patients suffer from food intolerances. Diets, including low carbohydrate, gluten-free and yeast-free, have all been proposed. However, nutritionists Morris and Stare of Harvard Medical School1 found that there is no clinical scientific evidence to substantiate claims about the efficacy of various dietary approaches in the treatment of CFS/ME.
Infection with the yeast Candida albicans has been cited as a cause of CFS/ME (see page 47) and can cause a chronic candidiasis hypersensitivity syndrome (CCHS). In 1989 Renfro and co-workers2 noted that the ‘yeast connection’ is frequently a self-diagnosed condition on the basis of having typical symptoms and a history of frequent yeast infections and multiple courses of antibiotics. Diets are available to eliminate the yeast Candida albicans by avoiding the foods on which Candida thrives, for example, sugar. Low sugar diets are recommended as a means of combating Candida overgrowth, as yeast requires sugar for metabolism. However, there is little scientific evidence that such regimes do control Candida overgrowth. In addition, these diets are nutritionally unbalanced and, if followed for longer than two to three months, could result in long-term nutritional deficiencies, which would impair a return to full health.
The usual dietetic advice that works best for most CFS/ME sufferers is that the patient should eat healthy, regular meals, and vary the types of food. Eating the same food types again and again may stimulate the continual release of particular enzymes and overload the body, thus a rotation diet should be followed with plenty of variety.3,4,5
The food should be balanced and contain a good mixture of carbohydrate, protein, essential fatty acids and fibre plus vitamins and minerals. Reducing the ingestion of sugar, yeast, dairy products and gluten usually helps, but, unless one is allergic to any of these, one should not completely eliminate them.
In the years that I have been treating CFS/ME, some of the weakest, most emaciated and immobile patients I have seen are those that have been following strict avoidance diets, often for many years. They usually start by being slightly intolerant of certain foods and within some months of avoiding those may become completely intolerant of many. As time goes on, more allergies seem to develop with the body’s immune system going into ‘free fall’ mode and the patient rapidly descending into a form of total allergic syndrome where almost every food, perfume, or deodorant causes adverse reactions.6 My advice is that in the early stages if any food sensitivity has been discovered do not abstain totally for more than a month and, occasionally, eat a little of that substance.
These are widely recommended in the treatment of CFS/ME, but there is no evidence that mega doses of vitamins and minerals will relieve any of the CFS/ME symptoms. However, the antioxidant action of vitamin C has been shown to improve the body’s immune response. With patients taking no more than 500 mg per day there have been no reported toxic side-effects. Similarly, the vitamin B group is known to improve the health of the nervous system. Functional deficiencies of the B vitamins pyridoxine, riboflavin and thiamine have been shown to occur in CFS/ME7 and patients may therefore be advised to take one full and complete vitamin B-complex pill per day, provided that no complications are reported.
Some doctors specialising in CFS/ME give high doses of vitamin C and folic acid intravenously. I prescribe a 500 mg daily oral supplement of vitamin C and one complete vitamin B-complex pill to increase the patients’ resistance to overall infection and improve the functioning of the nervous system.
This treatment is based on the belief that a magnesium deficiency is a primary cause of the disorder. Magnesium deficiency is associated with disorders of neuromuscular and psychiatric functioning. This deficiency results in an inability to cope with viral infections8. In 1991 a randomised controlled trial was conducted9 that showed that 20 CFS/ME patients had significantly lower red blood cell magnesium levels compared with healthy controls. The administration of magnesium together with vitamin B12 has helped the energy and improved many symptoms of CFS/ME patients.10
Sodium deficiency can produce similar signs and symptoms to CFS/ME and is associated with low blood pressure. A form of low blood pressure that occurs as one stands up after sitting or lying (neurally mediated hypotension) frequently occurs in CFS/ME. However, the increase in salt intake that is occasionally advised may lead to severe, if not fatal, consequences for the many CFS/ME patients who suffer from high blood pressure.
Central to the basis of the Perrin Technique is that in CFS/ME the hypothalmus is overactive leading to an overloaded autonomic system. Nerves transmit their signal via chemicals known as neurotransmitters. Too much of one of the main neurotransmitters, acetylcholine, breaks down into acetate and choline. Thus when originally formulating my theory in 1989 I hypothesised that one day scientists would discover too much choline in the body.
An increase of choline has indeed been found in the brain of CFS/ME sufferers by Professor Basant Puri of Hammersmith Hospital and Imperial College, London,11who has also discovered a deficiency in fatty acids which are important for the healthy maintenance of brain cell walls. This can be remedied by the intake of eicosapentaenoic acid (EPA), a constituent of certain fish oil supplements, which combines with the choline to heal the cell membranes and restore normal function of the brain. (This is fully explained in Professor Puri’s book Chronic Fatigue Syndrome – a natural way to treat M.E. See further reading.)
The absence of the ultimate curative drug for CFS/ME has led to alternative approaches. In the late 1980s in Great Britain, one of the most popular hypotheses was that there is too much of the yeast Candida in the body as mentioned earlier in the chapter (pages 44–45). This causes many harmful effects,12, with recommended treatment usually by oral antifungals nystatin and ketoconazole, together with strict diets that prevent the forming of further Candida by excluding many foods.1
The use of antifungal agents in some patients has resulted in hepatitis1,13 with many patients showing no improvements in CFS/ME symptoms. I have seen many patients who have had extensive tests that reveal no abnormal levels of Candida in their body, although they definitely suffer from CFS/ME.
The alternative term for CFS/ME in the USA is Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), an acknowledgement that dysfunction of the immune system is a major feature of the disease. Many immune modulatory treatments are expensive, not freely available, produce unpleasant side effects and yet yield inconclusive results (see Chapter 4).
Some psychologists believe that patients with CFS/ME ‘perceive’ greater fatigue during exercise as a result of the interaction of psychological distress, physical de-conditioning and/or sleep disturbance. They believe that the patient’s fear of making their symptoms worse may lead to their reducing their activity and that the resultant physical de-conditioning can spiral into chronic disability, which leads to adverse psychological effects. Graded activity is the process of gently increasing in activity to counterbalance physical deconditioning. Patients are expected to follow the prescribed exercises, irrespective of any worsening in the symptoms and to fight against their ‘perceived’ fatigue.
The idea of graded exercise seems quite unsuitable to those patients who are struggling just to achieve basic activity at work or home. There is a ceiling, above which activity is counterproductive in many cases. Friedberg and Jason14 advise exercise on an individual patient-by-patient basis, while many clinicians do not recommend it at all. However, significant improvement in functional capacity was noted in a year-long study in 199715 involving a graded exercise regime. Unfortunately, nearly half of the patients studied were taking antidepressants throughout the trial, which, in my view, undermines the validity of the study because as exercise has been shown to help in clinical depression it is likely that some of the patients who improved with exercise had been suffering from the latter rather than CFS/ME.
I believe that the reason why graded exercise has been shown to help in some cases is that, when the underlying disorder (CFS/ME) has receded, a patient who has been ill perhaps for many years may still be severely lacking in stamina. Exercise will improve the stamina, not the CFS/ME. It is important to understand the difference, as, if the graded activity is implemented too early in the patient’s period of recovery, the illness will be exacerbated.
Exercise often helps fatigue associated with an overall lack of fitness and with depression, but excessive activity always exacerbates fatigue in patients with CFS/ME. In fact, too much physical activity can trigger a relapse in someone who is on the road to recovery. The simple question every practitioner needs to ask when initially examining a possible CFS/ME patient is, ‘Does exertion ever improve the symptoms or does it aggravate the condition’. If the latter is true, even if at the time of exertion the patient feels good, it is possibly CFS/ME.
If the patient feels occasionally improved following exercise, there could be an element of clinical depression. However, the patient may be suffering from both conditions at one time.
A positive approach is important in fighting any disorder, but the horrible irony of CFS/ME is that it usually affects people who are determined, positive characters who would usually beat most illnesses with will power alone. It is no secret that a strong will power has been shown to help combat all types of diseases, even some potentially fatal conditions such as cancer. The power of the mind appears to be a vital tool in overcoming pathology, probably by improving the immune system. However, the neurological pathway that is involved in this phenomenon is the sympathetic nervous system, the very system that breaks down in CFS/ME. Thus the more patients try to beat the illness by pushing themselves, the worse the symptoms may become. I usually recommend half the activity that the patient feels than s/he can cope with: if you feel able to walk 1 km, walk only 0.5 km. This is known as ‘pacing’.
Together with the graded exercise programmes given out to most CFS/ME sufferers in UK hospital clinics comes advice about pacing.16 As I have already noted, avoiding exercise due to a belief that it will exacerbate symptoms has been held responsible for maintaining symptoms in CFS/ME patients. However, significant improvement has been shown when patients are advised to avoid too much activity and carry out only 50 per cent of their perceived capabilities. In the early 1990s, when most of the medical fraternity were advocating exercise, exercise, exercise for CFS/ME, when patients who could hardly walk were advised to get fitter, I was telling all CFS/ME sufferers to stop and pace themselves, doing just half of whatever they felt they were capable of, whether it was walking, talking or watching TV. My Half Rule remains a major influence on the patient’s overall improvement with my treatment. If the patient overdoes things during the course of treatment they may never fully recover; indeed, their health may worsen. Some patients tell me they find it difficult to gauge what half is. Often they have realised that they are doing too much after the particular activity and it is too late.
The best way of following the Half Rule is by thinking double. If you walk 0.5 km, ask yourself ‘Can I honestly walk 1 km with no problem?’ If the answer is no, 0.5 km is too much. If 1 km receives an emphatic yes with no worsening of the symptoms, 0.5 km is fine. If you are uncertain, even 0.5 km may be too much and you should reduce the distance. The same applies to any activity, for example, having a conversation: if half an hour is too much, engage in only ten-minute chats at one time. If a two-hour film is too long, use a video recorder in order to watch half-hour sections at a time, provided that you feel you could watch an hour without adverse effects. This prevents you from overstressing your sympathetic nervous system and, although it is difficult to implement, I have found this to be the golden rule that may be the difference between helping some patients and completely curing them.
The effectiveness of cognitive behavioural therapy (CBT) in the treatment of CFS/ME has been comprehensively reviewed.17–20 It has been shown to be more effective when delivered by properly trained clinicians in specialised clinics.17 CBT is based on the belief that psychological factors are maintaining CFS/ME in all patients. Such factors may include faulty beliefs, ineffective coping behaviour and negative mood states.19 Distorted thought patterns may lead to anxiety and depression.18
My view is that the depression and anxiety often seen in CFS/ME sufferers are secondary to the underlying physical symptoms of CFS/ME. Depression and anxiety create a heightened sense of frustration and guilt in the patient who in any case feels him/herself to be a heavy burden on family and friends. Those people, including health care providers, who do not acknowledge the existence of CFS/ME, may exacerbate this frustration. However, CBT may help the patient to deal with secondary feelings of guilt and worthlessness.
In a 1996 randomised study20 on CFS/ME patients diagnosed using the Oxford criteria (see Chapter 2), the group receiving CBT were functionally improved, but many reported continuing fatigue. However, in a separate study reported four years later, patients in the CBT group demonstrated significant improvements in physical functioning and substantial reductions in fatigue.21 Some patients in the latter21 study had a current psychiatric diagnosis and others were receiving additional antidepressant therapy. It is probable that CFS/ME patients who have difficulty in coping with their illness will benefit from CBT. In common with other chronic illnesses, positive coping strategies and lifestyle management approaches may reduce the depression and anxiety levels, but there is little evidence that CBT has a significant effect on other symptoms of the illness. It is worth noting that while many of the patients helped by CBT in the 199620 study were also suffering from a diagnosed psychiatric illness, in another study on CBT where the CFS/ME patients were diagnosed using a different Australian system of criteria, which excluded psychiatric diagnosis, few differences were noted between the CBT treatment group and the controls who did not receive the CBT.22
Treatment of the musculoskeletal disorder, fibromyalga, involves the use of antidepressants together with anti-inflammatory drugs.23 This treatment has been clinically shown to help the muscular pain in that condition. The soreness in fibromyalga resembles the pain in some CFS/ME cases and, accordingly, similar treatment has been advocated.23,24
Low doses of antidepressants have been shown to improve the sleep patterns of some patients.25 However, some older antidepressants are habit-forming and may result in significant physical and psychological side effects, while certain foods have to be avoided while taking these older antidepressants as they can cause harmful reactions. There are fewer such problems with today’s antidepressants. However, if you are prescribed medication that aggravates your symptoms, you should return to your doctor to discuss the option of an alternative antidepressant. This is the same for all pharmaceutical approaches to treatment, including herbal remedies. In other words, if a drug reduces one or more of the symptoms with no major side effect, it may prove helpful in the battle against CFS/ME. However, if the reaction to the medicine outweighs the overall benefit or if it worsens the symptoms, you should immediately consult your GP or specialist in order to review the alternatives.
Hypnosis has been tested in a pilot study26 on CFS/ME patients who reported that hypnosis helped in muscle pain management both at rest and after exertion with a slight improvement in quality of life, but there was no increase in cognitive ability.
Two complex problems beset the diagnosis and treatment of CFS/ME. The first is that two conditions – or more – can exist at any one time in one patient. It is sometimes difficult, for example, to distinguish between depression and CFS/ME, particularly in those cases of CFS/ME in which depression is an additional feature. The second problem is that because there is no accepted means of diagnosis, by tests such as blood or urine analysis, most doctors diagnose CFS/ME by exclusion. In other words, the patient will be diagnosed as suffering from CFS/ME only when all other possible diagnoses have been excluded (see Chapter 6). In my view, this is a hazardous method of diagnosing any disease. Can you imagine if a doctor were to tell a patient, “Well, after all the tests, we cannot find anything else wrong with you, so it must be cancer”. Yet thousands of people around the world are being told that they have CFS/ME, using the exclusion method of diagnosis.
Some medical experts on CFS/ME have touched upon the neurological effects of the disease, and how the immune system and the body’s hormones are affected. However, the treatment recommended by these specialists is to improve the hormonal and chemical balance by dietary means and, if necessary, by psychiatric drugs or psychotherapy. These treatments do help in many cases, but I believe that these experts are missing a crucial point: in my view, they are treating the symptoms rather than the root cause of the disease.
The neurological system that controls the hormonal and chemical balance of the body is the autonomic nervous system and the system that is the main factor in drainage of poisons from the body is the lymphatic system. If these two systems were working correctly, the body would cope with extra stresses and strains after being detoxified or desensitised. Only then might psychotherapy help, and a healthy hypoallergenic diet might bring about a permanent improvement in patients with CFS/ME.
Sadly, in many people with CFS/ME there is little or no recovery, despite many and varied dietary and chemical approaches to treatment.
The key is to find a complete and lasting cure that helps the body cope with extra stress, rather than temporarily reducing the symptoms. This concept is in keeping with modern medicine’s approach to the management of other types of disease. For example, the use of vaccinations to increase the body’s antibodies, and thus resist certain types of infections.
If one regards any stress factor as the infection, the obvious course of action is to increase the body’s defence in staving off the infection. The fortification of the body is controlled by the autonomic nervous system, particularly the sympathetic nerves. This elaborate web of nerve tissue stems from the middle section of the spine, and spreads throughout the body (see Chapter 3). As already stated in Chapter 3, American neurophysiologist, Dr Irvin M. Korr, made a lifetime study of the autonomic nerves,27–33 and how mechanical stimulation of this system has a major effect on the body as a whole. My treatment programme and my theory as to the cause of CFS/ME, which is described in detail in later chapters, is influenced greatly by the work of this scientist who was a luminary of osteopathic philosophy.
Many sportsmen and women – such as Mr E, described at the start of Chapter 1 – exert more strain upon their dorsal (upper) spine in the pursuit of their sport than the average individual. Golf, yachting, cycling, tennis and weight-lifting are just a few different types of sports that put extra stress on the upper back. In some individuals this could lead to irritation of the sympathetic nervous system, resulting in the development of CFS/ME.
Since the early 1990s people suffering from this debilitating disorder have arrived at my practices in the North-west and South-east of England, desperate for help and a sympathetic ear. At first I thought it unlikely that I would be able to help, but, as more patients came, I began to notice a familiar pattern. There were common postural and mechanical factors shared by the patients. These similarities, consequently, led to the establishment of my manual system of diagnosis and treatment for this disease.
Age: 19 years
Occupation: Law student
Marital status: Single
Originally I knew Mr J socially. We saw each other at a party where he told me that he had been forced to take time off from college due to ill health.
He explained that he had initially suffered from a viral infection six months earlier. Since then, he had felt very lethargic, complaining of aches in all his limbs and palpitations. His symptoms were aggravated by exertion. His doctor had diagnosed ME and he enquired whether I had heard of it.
I told him of my research and the fact that I was writing a book about the subject. A few days later, the young man was lying on my treatment table, hoping for me to perform miracles. He had been convinced nobody could help him and that he just had to rest at home until he felt well enough to return to his studies. I knew that my methods had worked on others, and was genuinely convinced that I could treat him successfully.
His dorsal spine was restricted and his posture was typical of a student who bent over his books at home, and slouched in a lecture hall during the day.
After nine treatment sessions over four months Mr J returned to college, almost back to normal, and his symptoms of CFS/ME had abated. Through a chance meeting at a party he was able to return to healthy, active life. Now he is a successful city lawyer with a large family and he has been symptom-free for over ten years.
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