NOTE: for a scientific overview of the theory, see the persistent burnout theory of CFS.
Chronic Fatigue Syndrome (CFS, also known as ME), is a severe, debilitating condition consisting of a number of different physical, physiological, neurological and psychiatric symptoms including:
Not all patients suffer from all of the symptoms, and there are many other symptoms that are also present in some patients. The only symptom that must be present for a diagnosis of CFS to be made is severe, disabling fatigue for a period of over six months. Other symptoms will occur in most cases, but are not required for a diagnosis under the Oxford criteria (although the CDC criteria does require at least four other symptoms out of a list to be present). There is no definitive test for CFS, so it is essentially an exclusion diagnosis that is reached when all other causes of illness have been ruled out.
Sometimes muscle pain is listed as a symptom, however this usually results in a diagnosis of fibromyalgia rather than CFS. The symptoms of fibromyalgia are very similar to CFS, the only difference being that with fibromyalgia there is widespread chronic muscle pain over almost the entire body rather than fatigue. There is, however, a broad overlap between CFS and fibromyalgia with many patients suffering from symptoms of both conditions, and it is possible that both CFS and fibromyalgia are caused by the same underlying illness mechanism.
There is also a spectrum in severity of symptoms, with many patients suffering from what could best be described as mild burnout, without being ill enough to be classified as having CFS. Many people suffer from symptoms such as being tired all the time, unexplained weight gain or susceptibility to infections. While some people would like to classify these patients as having a different (and less important) illness than CFS, this does not reduce the impact that these symptoms have on the lives of the people suffering from them.
In the UK CFS used to be known as myalgic encephalomyelitis (ME), as it was originally thought to be caused by inflammation of the brain and spinal cord due to a viral infection. Encephalomyelitis can occur after infection by a number of viruses and bacteria, such as measles, herpes simplex, human herpesvirus 6 (HHV-6) and Epstein-Barr virus. However it is now known that encephalomyelitis only occurs in a subset of ME patients, and is likely to be another symptom of the illness rather than a cause. For this reason the term ME has largely been abandoned in favour of CFS.
There is much debate about whether CFS is a "real illness", whether it is caused by a virus, and whether it is just psychological (or "all in the head"). Anyone who takes even the most cursory glance at the recent scientific evidence can clearly see that CFS is most definitely a real condition, and not purely a psychological illness. This evidence includes CAT scans of patients showing that they have highly shrunken adrenal glands, as well as various physiological abnormalities.
As for the symptoms of CFS, there is a wide overlap with a number of other conditions such as burnout, clinical depression, panic-anxiety disorder, irritable bowel syndrome and dysthymia. Dysthymia is a form of long-term depression lasting more than two years, which also includes symptoms such as poor appetite or overeating, insomnia or hypersomnia, low energy or fatigue, low self-esteem, poor concentration or indecisiveness, and feelings of hopelessness. Many CFS patients suffer from most or all of the symptoms of dysthymia, suggesting that there is a common underlying cause for both illnesses.
For further discussion on the psychiatric versus organic debate about the illnes, see:
Psychiatric vs Organic DebateThe symptoms of CFS seem to be the result of an imbalance in the hypothalamus, and the HPA axis in particular, but it is unlikely that there is any actual damage to the hypothalamus. Rather, it is likely to be an imbalance in the levels of CRH neurons and/or receptors in the hypothalamus or in the brain structures controlling these neurons, in the same way that major depression is an imbalance of serotonin and noradrenaline neurons and receptors. The changes that occur in the hypothalamus during CFS may be protection mechanisms that prevent the body from undertaking stressful activities that appear not to be beneficial.
With CFS, the initial trigger is usually a viral infection, environmental toxin or emotional stress, all of which are known to activate the HPA axis. Due to factors such as personality and mental attitude, this initial trigger then leads to a prolonged imbalance in HPA axis function in some patients, resulting in CFS. This is summarised below:
Although there is no direct conscious control over the hypothalamus or the HPA axis, there are many pathways from the cerebral cortex to the hypothalamus that could cause the disturbance in HPA axis function seen in CFS patients. Excitatory and inhibitory inputs to the paraventricular nucleus of the hypothalamus project from the suprachiasmatic nucleus, prefrontal cortex, amygdala and other areas of the brain, which then result in modulation of HPA axis activation. The most likely candidate for the HPA axis suppression seen in CFS is the prefrontal cortex, which, as we have already seen, is important in determining stress tolerance, and is also known to be activated when the placebo effect is occurring.
A study from Japan showed that patients suffering from CFS had lower than normal synthesis of glutamate in a number of areas in the brain, including the prefrontal cortex. Glutamate neurotransmitter transmission in the prefrontal cortex is important for HPA axis activation, and abnormalities in the synthesis and uptake of glutamate have been correlated with both fatigue and pain. It is possible, therefore, that an imbalance in the prefrontal cortex, in response to psychological factors, is what causes CFS to develop and persist after the initial triggering event.
See also Recovery from CFS/ME/Burnout
In terms of recovery, there is very little research to suggest what actually cures CFS, or that there are any effective cures at all. In most cases the illness simply goes away by itself after a period of time, which can be anywhere from a few months to over 10 years.
There is not much research on the exact percentage of patients who recover from CFS. The main problem is the definition of what recovery actually is. Many patients do recover somewhat, but most of them continue to have some symptoms.
One study gives a figure of 12% for total recovery, while others give figures of between 30% and 60% for improvement and 2% for complete resolution of symptoms. Anecdotal evidence suggests that the majority of patients do recover fully (although exactly what percentage is unclear).
Research shows that an important factor in recovery is the duration of symptoms, with patients who have had the illness for a shorter period of time being more likely to recover at some point in the future. A number of studies have shown that the chances of recovery are greatly reduced if the symptoms have persisted for longer than two years. Some patients recover within six months to a year, while others have had the illness for over 10 years with no sign of a resolution, although the severity of the illness tends to vary over time.
One study reports that 46% of CFS patients showed spontaneous improvement after a period of one year, even though no treatment was used during that one-year period. This study found that complete recovery only occurred when the symptoms had lasted for less than 15 months.
Other factors that have been shown to reduce the chances of recovery include older age, as well as current and lifetime history of dysthymia.
Recovery from CFS, when it does occur, is generally long-term and gradual. Currently the only treatments for CFS that have been proven to work are cognitive behavioural therapy (CBT), which addresses psychological attitudes to the illness, and graded exercise therapy, which aims to gradually increase physical activity. However, even these treatments do not help everyone who has CFS, and they tend to be not much better than simply doing nothing at all.
As already discussed, both anecdotal reports of people who have recovered as well as scientific studies show that mental attitude is a very important factor in recovery. Simply acknowledging the fact that psychological factors may play a role in the illness is usually enough to initiate recovery, whereas a negative outlook and an attitude that nothing can be done tends to result in prolonged illness.
There are regular reports of people recovering from CFS published in newspapers and health magazines. The reports of patients themselves are a valuable source of information about the illness, and give the best indication of exactly what factors are important in recovery.
The treatments generally fall into two categories: an alternative therapy which probably relies on the placebo effect, or a change in lifestyle. No matter what type of treatment or therapy is used, in all cases there is an increase in positive goals, motivation and attitude, and it is likely that it is this change which results in a recovery from CFS by normalising the functioning of the HPA axis and related systems. For more details on exactly how an increase in goals and movitation can result in physiological changes and a recovery from CFS, see the Persistent Burnout Theory.
It should be noted that I do not recommend or endorse any of the alternative therapies discussed in these reports. Such treatments are likely to be expensive and potentially dangerous, and many owe their benefit purely to the placebo effect.
It should also be noted that not all alternative treatments are purely placebo, just as some conventional drugs have been shown to be no better than placebo. For a further discussion see the placebo effcect page. However in the end, no alternative or conventional treatment will do anything other than provide temporary, palliative relief for some of the symptoms of CFS. Permanent recovery can only happen when the person changes their own life, whichever way they achieve it.
Alex Howard"At the age of sixteen years old Alex Howard was left virtually bed-bound and hardly able to walk by a severe chronic illness, which according to the medical profession there is no cure for. After two years of severe chronic illness and developing clinical depression and near suicide, Alex made a life-changing commitment: he would do everything he possibly could to transform himself and his surroundings.
Alex spent virtually every minute of the next five years searching in the fields of psychology, neuro-linguistic programming, life coaching, spirituality, hypnotherapy, personal development, nutrition, meditation and studies of consciousness, yoga and healing, and was eventually able to return himself to health and happiness, along with creating a whole new life for himself."
"Karen", from an article published in issue 27 of "Healthy Way" magazine:"Karen was diagnosed with ME and for three years it was particularly severe, which left her feeling totally exhausted physically and mentally. Karen was so ill that for two years she was largely confined to bed. However, since having Kinesiology sessions, she has made a good recovery".
The article goes on to say that she is now able to go out of the house on a daily basis, whereas previously she had been confined to bed. She used to feel totally exhausted after walking 5 minutes, but can now walk for 1.5 hours. Her head used to feel "fuzzy", and she had difficulty concentrating, but now she can focus much better.
Karen says that during her Kinesiology sessions it became apparent that she had multiple sensitivities to everyday things such as dust, wheat, etc., and that she had high levels of mercury in her system. She also thinks that she was sensitive to electromagnetic radiation from household appliances.
Kate Lock, from an article published in the Times Saturday MagazineTwo years ago Kate Lock, an author, suffered from intense fatigue, and didn't have the energy to take her daughter to school. She was so tired that she slept all afternoon. She had a succession of illnesses, and her glands were swollen for months. She also had a "fuzzy" brain, and couldn't write more than a paragraph. Her other symptoms included digestive problems, bloating, depression and PMS. This was the latest in a cycle of health problems that had begun in her twenties.
After learning about candida, Kate thought that her health problems might be due to candida infection. After starting an anti-candida diet, Kate noticed a significant improvement in her health within one or two weeks. After being on the diet for six months she felt that she was 70% better, and her symptoms such as thrush, migraines, PMT, joint pains, fatigue and concentration problems had all disappeared.
Anna Selby, from an article published in the Times Saturday Magazine:Anna began to have the symptoms of ME when she was in science college at 16. Her symptoms included weight gain, low energy levels (she was sleeping most of the day and going to college for an hour a day), and intense sweating. One day she came out in a rash, and her symptoms became so severe that she was confined to bed for eight months.
Eventually her family found a doctor who knew about ME, and he suggested that she should go somewhere that meant a lot to her. The family decided to go on holiday to Cardigan Bay, where she had seen her first dolphin when she was four years old.
The article discusses how Anna began to recover from ME, and how she went back to see the dolphins when she had a relapse. She has now fully recovered, and works for the Biscay Dolphin Research Program. The article talks about the therapeutic effects of dolphins, and about cases of people being cured from anorexia, depression and other illnesses through contact with them.
Clare Kerr, from an article published in the Sunday Times:Clare's symptoms began when she was 17, after a bout of glandular fever. After spending three months recovering from the illness, she was glad to get back to school. As she had been away for so long, she had to catch up on the previous term's work, which meant staying up late to write essays and not getting much sleep.
Six weeks into the term, one morning she woke up and could barely move. The article doesn't give much detail about her symptoms, but they included severe exhaustion, tunnel vision, pounding headache and auditory hypersensitivity. Her doctor didn't believe in post-viral fatigue, and eventually she was taken to St Bart's hospital where she was referred to a psychiatrist. She didn't understand what was happening, as she was sure that there was nothing wrong with her mentally.
For the next five years she tried a number of alternative therapies, but nothing seemed to work. Eventually she was referred to the Breakspear hospital, which has a history of treating patients with ME using various alternative therapies.
She was diagnosed with a number of vitamin and mineral deficiencies, and was told she had allergies to a number of foods and chemicals. She was also told that her EBV infection (causing the glandular fever) was due to her having a low immune response.
She has now changed her diet in order to avoid the foods that she is "allergic" to, and also takes a number of vitamin and mineral supplements to correct the supposed deficiencies. She also practises yoga and meditation, doesn't smoke or drink, and generally tries to have a healthy lifestyle. Since starting this regime, her health has improved immensely. The article doesn't give too much detail, but the impression given is that her health is now pretty much normal, and she can now live a normal life.
Other reports of patients who have recovered from CFS:
A detailed description of one patient's recovery from CFS.There is a tendency for both patients and doctors to concentrate on treating the symptoms of CFS rather than trying to cure the illness itself. Many patients take various herbs and supplements in order to cure their symptoms. In most cases these supplements have been shown to have no effect whatsoever, and at best they only give a mild improvement.
CFS researchers sometimes give patients treatments to boost the TH1 anti-viral branch of the immune system that is deficient in many CFS patients. This treatment, while it may help in combating any viral infections, has not been shown to actually cure CFS itself.
When hormone tests are performed on CFS patients by some doctors, there is a tendency to treat the illness by replacing deficient hormones, such as testosterone, growth hormone or the thyroid hormones. Again, this only cures some of the symptoms and does not provide a cure for CFS.
Many CFS patients use sleeping pills to cure insomnia, but in many cases this simply leads to a dependence on the medication and only offers a partial or temporary cure for the actual insomnia. This is also the case for treatments for other symptoms of CFS, such as depression, anxiety and tachycardia. In some cases the patient ends up taking a large number of different drugs, and may end up feeling just as bad or worse than if they were taking nothing!
Studies have shown that providing cortisol replacement therapy in CFS patients gives a small improvement in symptoms, but again does not cure the illness. The problem with cortisol replacement is that it tends to suppress the HPA axis responsiveness of the patient, resulting in adrenal insufficiency after the treatment has ceased. In addition, as it only replaces one hormone it is not surprising that it does not cure all of the symptoms. Restoring HPA axis function artificially would require CRH pulses to be injected directly into the hypothalamus. This would then activate the immune system, ANS and all of the other hormones that rely on HPA axis activation.
The existing CFS treatments really just seem to be skirting about the main issue of trying to restore the normal circadian rhythm of HPA axis activation. What is likely to be more effective is to develop a treatment which combines certain aspects of existing treatments such as CBT and graded exercise, and which also attempts to make patients aware of the steps that they can take in order to cure themselves.
CBT, although useful, is based on the misguided notion that patients' negative beliefs about their illness serve to perpetuate the illness, due to some sort of neurosis. While CBT does work in a small number of cases, it is likely that it is due to something along the lines of the placebo effect, and not for the reasons given by the practitioners. If their theory of CFS was correct then CBT should be able to cure all patients. Many CFS patients will not have anything to do with CBT because it implies that they are subconsciously prolonging their illness.
The treatments that tend to work best for curing CFS can be divided into three categories: psychological, changes in lifestyle and the placebo effect. All three types of treatment ultimately work in the same way, with the psychology of the patient determining the effectiveness of any particular treatment. In many cases it is probably the act of doing the treatment that results in recovery, rather than any actual benefit from the treatment itself. Purely psychological treatments, such as CBT and counselling, tend not be very effective, as they tend to focus on areas such as emotional problems which are not necessarily a significant factor in many cases. In the lifestyle category, many patients find that getting a new job or changing their career to something that they really enjoy results in curing their CFS symptoms. In terms of the placebo effect, many dubious alternative therapies that rely on it for their effectiveness have resulted in people completely recovering from CFS. Treatments that have worked include anti-candida diets, kinesiology, food intolerance diets, as well as many others. It should be pointed out that these were not patients who had mild symptoms; many of these people were bed-ridden and had highly debilitating physical and mental symptoms, all of which were completely cured by apparently trivial treatments.
Perhaps the most beneficial way of treating CFS would be a combination of psychological/lifestyle and pharmacological treatments. Initially, the patient could be treated with drugs to help cure symptoms such as adrenal insufficiency, depression, anxiety and insomnia. This would provide a temporary cure for some of the symptoms, which would then allow the patient to work on the long-term recovery process. Factors that are likely to be important in this healing process might include:
What is important is to make changes in mental attitude and/or lifestyle that break the vicious circle of HPA axis suppression leading to illness, which then leads to further suppression of the HPA axis.
Patient support groups are not always useful for CFS patients. In many cases these groups foster the myth that recovery is not possible, which may in itself be detrimental to the chances of recovery.
In summary, the only real way to treat CFS is to get to the heart of the illness and treat the underlying factors that cause the various mental, physical, endocrine and immune system symptoms associated with the illness. Concentrating on just one single group of symptoms will only bring partial relief, and will simply serve to prolong the illness. Recovery is not instant, and may take many months or even years due to long-term changes that have occurred in the HPA axis and associated areas which may take a long time to reverse. However, recovery is possible in all cases, even for the most severely disabled patients, and in many cases this can be achieved by a relatively simple change in lifestyle.
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