Post-viral fatigue syndrome is ranked among neurological disorders. This is because the disease usually starts after a viral infection. The syndrome is commonly referred to as Chronic Fatigue Syndrome (CFS).
Chronic fatigue syndrome (CFS) is also referred to as myalgic encephalomyelitis (ME). The name stems from the fact that in the 1950s England described a polio-like encephalomyelitis syndrome, but it was not caused by a polio virus. This syndrome is sometimes also called Ramsay’s disease.
The severity of symptoms in Post-Viral Fatigue patients ranges from mild to very severe. At worst, patients are bedridden. It has been suggested that this most severe form could be called ME because the symptoms resemble those described by Ramsay. Other forms could be called Chronic Fatigue Syndrome (CFS). In 2015, an extensive panel of experts at the American Institute of Medicine reviewed almost all the literature on the subject so far. In addition, they had extensive experience of treating patients with fatigue. Based on this, the name of the syndrome was proposed as SEID, Systemic Exertion Intolerance Disease. Many patients find this term to describe their illness quite well.
1.- Significant impairment of performance from previous levels, which makes it difficult to cope with work, study, social interaction and personal daily life. Symptoms have persisted for at least six months. Daytime fatigue is often intense. The onset of symptoms is definable and is not a life-long symptom. The symptoms are not explained by physical overload, and rest does not correct the symptoms.
A.- Deterioration of well-being following physical exertion
B.- low quality and non-refreshing night sleep.
2.- The patient must still have at least one of the following two objective findings:
A.- Cognitive impairment observed in neuropsychological studies
B.- Orthostatic intolerance in which standing up causes discomfort and the symptoms disappear when lying down; or postural orthostatic tachycardia, POTS, in which the heart rate rises abnormally when standing up. This causes dizziness, fainting, headaches, pain and weakness. (POTS stands for postural orthostatic tachycardia syndrome.)
3.- In addition, it must be ensured that fatigue is not due to any other organic or mental illness, nor is it explained by any other specific sleep disorder.
Examination of postural orthostatic tachycardia (POTS)
Orthostatic hypotension, which is a drop in blood pressure related to the upright position, is best revealed in the TILT table test.
In fact, in the TILT table test, even healthy individuals are more likely to get abnormal results than in the active standing test. In POTS, the heart rate is found to increase by more than 40 beats in children and 30 beats per minute in adults within ten minutes of standing up. Traditionally, the TILT test only takes about five minutes. However, this is not long enough for POTS diagnostics. Strong POTS often appears within minutes, but sometimes it takes 10-30 minutes to confirm the diagnosis. No significant changes in blood pressure are observed simultaneously.
During the standing test, discoloration of the hands and feet can be observed and the subject may also complain of stinging, chest tightness, dizziness, cold sweat, or fainting sensation. The test is often performed by two nurses and is discontinued if a marked deviation is found or if the patient’s condition begins to significantly deteriorate. When lying down, the person’s heart rate returns to normal within two minutes.
A typical genetic disorder that causes hypermobility is Ehlers-Danlos Syndrome (EDS). The majority of cases of hypermobility are benign (formerly categorized as type 3). The new EDS classification released in 2017 mentions HSD, or hypermobility spectrum disorder. The term “hEDS” is used when other symptoms of EDS are also associated with clear hypermobility. In this hEDS, the skin is abnormally stretchy and scar formation is also abnormal. Outside the mild edge of the spectrum are those people who have joint hypermobility (JH) without any other symptoms. With JH, skin elasticity is normal.
The so-called Beighton test is an essential part of the diagnostics of hypermobility
The test consists of five parts:
- Can you bend your little finger up at 90° to the back of your hand
- Can you bend your thumb back on the front of your forearm
- Can you bend your elbow backwards
- Can you bend your knee backwards
- Can you put your hands flat on the floor with your knees straight
Each is scored from zero to two, except for the last one, which is scored from zero to one. The maximum score is therefore nine. There’s hypermobility when a person below puberty gets at least six points, a young person or adult under 50 years of age gets at least five points, or an older person gets at least four points.
Hypermobility, HSD and hEDS
In a clinical trial, many POTS and CFS patients show soft, loose, velvety, thin skin, and joints are very flexible. This may be due to the underlying connective tissue disorder, which is referred to as hypermobility.
The occurrence of POTS, as well as the post-viral fatigue syndrome often associated with it, is more common when the joints are hypermobile. Studies suggest that hypermobility is associated with disruption of the venous circulation, whereby the blood compresses in the legs when standing up. This sometimes shows itself as a change in the color of the feet to a bluish-red color after standing for a long time.
Further, hypermobility can also be associated with the looseness and flexibility of arterial walls, which prevents individuals from raising their blood pressure when standing upright, which requires a significant increase in heart rate in order not to lower blood pressure. Another theory is that hypermobility-related genes and POTS-related susceptibility genes would be located very close to each other and thus could often occur in the same person. However, no scientific evidence has yet been provided.
Factors that trigger symptoms of Chronic Fatigue Syndrome (CFS)
Chronic fatigue syndrome typically begins after an infectious disease. Possible triggers include, for example, the following microbes: streptococcus, Borrelia, mycoplasma, Chlamydia, enteroviruses, HHV6 (herpesvirus 6), Epstein-Barr virus (EBV), and influenza viruses.
The role of nutrition in the treatment of Chronic Fatigue Syndrome
Avoiding fast-absorbing carbohydrates and otherwise healthy nutrition improves brain function. Small meals should preferably be eaten several times, as supportive meals cause so-called dumping symptoms: nausea, palpitations, sweating, weakness, stomach upset and diarrhea.
After lunch, it is advisable to sleep a short nap of 20-30 minutes. Exercise within 30 to 60 minutes after a meal exacerbates postprandial hypotension and should be avoided. Drinking enough and getting enough salt is very important.
Severe symptoms may result in the patient not being able to stand properly or being able to walk only a short distance. At worst, a CFS patient is a bed patient and has additional problems. Lying in bed lowers the body’s salt levels and causes dehydration. Muscle inactivity, in turn, can lead to a prolonged loss of muscle strength and, at worst, muscle atrophy. This is a so-called deconditioning which should be prevented at all costs. The longer you stay in bed, the harder it is to get out of bed.
Fluid intake is very important. For an adult, this means drinking about two to three liters of fluid a day. Adequate salt intake helps maintain satisfactory blood pressure and suppress POTS symptoms. For best results, add salt to the food on your plate. According to Philip Fischer, food for CFS and POTS patients should be as salty as the taste buds allow. Since too much salt is not healthy for a healthy person, it is best to add salt only to the plate. Temporary severe dehydration and sodium deficiency intravenous saline infusion may be utilized. There is also one study published on this subject, with a positive result. However it was a short-term study, therefore, this treatment cannot be recommended for continuous use.
Intravenous administration of saline is not a curative treatment. In practice, it is therefore best to take salt by sprinkling plenty of salt on a plate. Sometimes you need to add so much salt that most healthy people find it too salty. In this context, it should be noted that, in general, excessive salt intake is harmful and is known to be one of the most potent risk factors for hypertension. So, as a general rule, salt should be used as little as possible, but POTS patients are the exception. The best way to ensure adequate tissue salt balance is to measure daily urine sodium secretion (dU-Na). During the study, the amount of urine excreted during the day is collected in a container for measuring the amount of sodium in the laboratory. The test is simple and cheap. Sodium should be between 150 and 220 millimoles of urine per day. According to the Mayo Clinic, the target level is 170 millimoles within 24 hours. If dU-Na is less than 150 millimoles, the use of salt is increased. At the same time, you should drink enough water. Depending on the individual and the amount of exercise, the daily amount of water consumed should be between two and three liters, as mentioned above.
The stimulant drugs used to treat narcolepsy and other hypersomnias can provide varying degrees of relief, but the key is to correct any deconditioning, that is, the collapse of general condition.
Immunomodulatory therapies for Chronic Fatigue Syndrome
Because the symptoms of Chronic Fatigue Syndrome typically begin after an infection and then continue for a long time, it has been speculated to be an autoimmune disease or a chronic inflammatory disease. On this basis, treatment with antibiotics and immunomodulatory therapies has also been used. Prior to antibiotic or antiviral therapy, there should be clear evidence of the microbe causing the symptoms. Treatment results have been mixed. In the United States, different centers seem to have different practices and no clear recommendation on the use of antibiotics can be made.
Similarly, according to current knowledge, there is no justification for immunomodulatory therapies unless significant amounts of autoimmune antibodies are detectable. Another problem is that the significance of all the different antibodies is not yet known. Every year, several new, previously unknown antibodies to a neurotransmitter or protein are discovered in the world. Treatment has been used with varying degrees of success with immunological treatments such as intravenous (ivig) or subcutaneous gamma globulin.
There is not yet such strong evidence of intravenous gamma globulin, that it could be recommended for general treatment of chronic fatigue syndrome. The positive effect of Ivig may be explained by the volume increase. Gammaglobulin also allows large amounts of fluid to accumulate in lymphoid tissue. This increase in fluid volume may take several weeks.
The fact that ivig does not help chronic fatigue syndrome as well as, for example, Guillain-Barre syndrome may be because ivig does not pass the blood brain threshold properly. Ivig therapies have shown good results mainly in peripheral nervous system disorders such as autoimmune-based rheumatic diseases, myasthenia gravis (ie myasthenia, neuromuscular disease, which is characterized by muscle fatigue and weakness), and neuropathies. On the other hand, ivig has also helped with limbic encephalitis, where the central nervous system (CNS) inflammatory process locates in the limbic structures of the brain and causes sensory distortions, and it has also been found in a few case reports to help with narcolepsy. The effectiveness of the treatment is better if it is given from the beginning.
High-quality scientific research is still needed to determine the benefits and drawbacks of Ivig treatment. Other immunomodulatory therapies have been, and are, being studied in the treatment of chronic fatigue syndrome. Research on this front continues to be brisk across the globe.
Start exercising slowly and build up gradually and other therapies
The best results compared to conventional treatment have been obtained in the PACE study, which received many contradictory reactions, with gradual increase in strain associated with cognitive-behavioral therapy. Cognitive-behavioral methods refer to therapies that investigate the effect of patient’s mental functioning patterns and resulting behavior on insomnia.
There were weaknesses in the study and, afterwards, the participants in the study also suggested that their experiences would be distorted. On the other hand, the gradual increase in muscle strength and aerobic exercise has also been found to be helpful in many other studies.
Exercise should be applied with extreme caution. In bed patient training begins by pedaling on the bed using minimal resistance on the wheel pedals. Exercise time and degree of exertion are gradually increased. In more difficult cases, getting upright is practiced for just a brief moment at a time. A heart rate monitor can be used to monitor the level of exertion.
Before each exercise, a person should drink plenty of water and also have adequate salt intake. In slightly milder cases, you can start getting up from bed or taking a few steps. In some cases, exercise and walking exercises should be started in the therapy pool. Fifteen minutes of walking may be too much at the beginning. A Chronic Fatigue Syndrome patient should not become excited about overloading himself or herself, as this usually results in only a decrease in well-being, the so-called “boom and bust”. If the treatment is carried out in conjunction with a competent physiotherapist, a satisfactory result may be achieved in about a year or two. Sometimes results are much faster.
In the United States, a multidisciplinary unit for autonomic nervous system disorders is operating with the Mayo Clinic. After an intensive treatment period of three weeks, up to 85% of patients return to school or work. Treatment consists of proper nutrition, sleep maintenance, psychophysiological physiotherapy and cognitive-behavioral therapy. Beta-blockers and, where appropriate, other medications to reduce symptoms are used as medication.
Immunomodulatory therapy is used if a significant amount of an antibody has been detected in the so-called Dysautonomia panel. Dysautonomia means that the functioning of the autonomic nervous system is impaired.
Low-dose naltrexone (LDN) has been somewhat studied in the treatment of some neurological disorders. Naltrexone is best known as an opioid receptor blocker used in doses of 50 to 100 milligrams to treat opioid and alcohol dependence. Thus, for low-dose naltrexone therapy, doses are more than ten times lower: individual doses used have varied between 1.5 and 4.5 milligrams. Usually the dose is taken in the evening as naltrexone may cause fatigue.
At low doses, naltrexone has been shown to have potential analgesic, mood-enhancing and also anti-inflammatory effects. LDN is generally well tolerated. However, due to potential interactions, the use of CNS analgesics should be avoided. In the United States, the FDA has not approved LDN for use in the treatment of any disease, nor has it been approved by the EMA in Europe.
Chronic Fatigue Syndrome and depression
Like long-term illnesses in general, chronic fatigue syndrome brings along comorbidities such as depression. Chronic fatigue syndrome can be classified as functional disorders of the autonomic nervous system, which are neurological disorders. So this is dysautonomia. Functional disease means that there is no apparent structural anatomical abnormality that could be corrected, for example, by a surgery. It is a disorder of the autonomic nervous system and can therefore be classified as an organic functional disorder.
In the Diagnostic and Statistical Manual of Mental Disorders (DSM 5) such patients are readily diagnosed as suffering from functional neurological symptoms or patients with dissociative conversion symptoms. Chronic fatigue syndrome is a functional neurological disorder in the same way as migraine, for example. The word “functional” should be compared to a software or smartphone programming error, not a hardware failure. Of the latter, the term “structural” is used in medicine. Unfortunately, so many patients as well as many healthcare professionals think that “functional” means “psychic or mental”.
Chronic fatigue syndrome is a functional organic disease. The associated psychiatric symptoms are secondary. In determining the origin of symptoms, it is important to map the functioning of the autonomic nervous system. In a true psychic conversion, the patient has no detectable organ dysfunction, but they are purely mental disorders. Yuval Noah Harari discusses this problem in his excellent book Homo Deus – A Short History of Tomorrow (2017). Is there a mind without a brain? If not, then why do we need it? If something happens without the brain, where does it happen? The most likely location of activity, or the mind, in the body is the brain. In a purely psychiatric conversion patient, there is no evidence of POTS or otherwise clear dysautonomia.
Similar functional organic mental disorders, including migraine and irritable bowel syndrome. Chronic fatigue syndrome has shown good therapeutic results with modern cognitive psychotherapy, which for example, are used to reprogram the brain limbic system using, for example, using the DNRS method. Patients with migraine, functional bowel disease and many other organic conditions can also benefit from psychotherapy. This does not mean that it is a psychiatric symptom.
Almost all diseases can also be affected through psychic channels. Many patients assume that providing psychotherapy as a treatment means that they are considered “mentally ill” or that their symptoms are considered “purely mental.” As a result, some patients refuse to receive psychiatric treatment, or their negative attitude undermines the positive effects of treatment. Unfortunately, we have often come across situations where patients have been purely psychiatric and may have been treated for years, mainly with traditional, dynamic psychotherapeutic methods that are beginning to be obsolete.
Newer methods include cognitive behavioral therapy and solution-oriented methods.
The latest third wave of cognitive behavioral therapy is ACT, or Acceptance and Commitment Therapy. Also, modern eye movement and desensitization reprocessing (EMDR), with the help of a modern, expert psychotherapist, has been successful in functional neurological disorders.
Whatever method is used, it is important that the therapist is an expert with appropriate training. Instead of believing directly in everything you read on the internet, you can ask your own attending physician and nurse for advice on expert methods and therapists. Of course, this requires that your own doctor and nurse are familiar with functional illnesses and know the principles of these new methods.
Regardless of the type of therapy, it is important that the treatment and rehabilitation is carried out in cooperation with the attending physician. In all of these therapies, it is important to understand that the cause of the symptoms is brain-derived and that these new methods have often yielded good results. Rather than looking for an explanation of the symptoms in the past, we seek to understand and solve the problem. Constructive collaboration is needed between the patient, the attending physician, the consulting physicians, the nurse, the psychologist and the physiotherapist.
The patient must understand that this is not just a mental illness and that he is not to blame for the symptoms. Nor is he alone. This is a “bug” or “virus” in the software, not a hardware failure. Young people in particular are well aware of the difference between software and hardware. The software will work when the bug is fixed. It is repaired by programming, not by replacing parts or using different solutions, let alone a knife and a hammer.
Often, a hacker who programmed a computer virus cannot be identified. It makes more sense for a computer user to fix a bug instead of trying to find a virus writer and distributor in the world. It will not help you to repair the bug or rebuild your computer.
Importance of a quick diagnosis of Chronic fatigue syndrome
As with narcolepsy, the correct diagnosis should be made as soon as possible. When abnormal fatigue and exhaustion begin after an infectious disease and when symptoms of fatigue persist for well over a month, the issue should be taken seriously. If there is a suspicion of post-infection fatigue syndrome, appropriate examinations should be performed. If the suspicion of chronic fatigue is confirmed, it is important to recommend that experts who are well-versed in the modern diagnosis and treatment of chronic fatigue syndrome should be consulted.
Sufficient sleep and autonomic nervous system examinations are part of the basic exam before definitive diagnosis is made. Psychiatric illnesses must also be taken into account. Careful and comprehensive interviews with the patient and those close to him or her are extremely important, not forgetting neurological examinations.
Interpretation of neurological tests requires experience. Functional neurological symptoms are sometimes very strange, such as various movement disorders, seizure pain, weakness, and so on, even if all neurological tests and examinations are perfectly normal. This easily leads to the notion that this is not a real illness, which can lead to the wrong track. Normal results of tests and studies exclude structural disorders, but do not exclude functional disorders.
Adequate antibody testing should also be performed in case of suspected autoimmune disease. However, they are not included in basic research. Many patients have tested themselves in various laboratories using, for example, ELISPOT assays. These methods are very sensitive but also very inaccurate. Many people who are completely healthy also get different results from these tests. False positive results can lead to incorrect treatments. At the same time, important time is lost because access to the right diagnosis and treatments can be delayed for years.
Symptoms of Chronic Fatigue Syndrome should not be underestimated
The best treatment is prevention. Once the functional symptoms have started, proper examinations should be carried out immediately. Symptoms should not be underestimated. In some cases, the doctor has stated to the patient that he only imagines the symptoms and that he can walk if he so wishes.
Medicine does not understand all symptoms and all diseases, and there are no absolute truths. Many of the illnesses previously considered psychiatric have subsequently turned out to be organic. One of the best examples is gastritis and duodenal involvement. Back in the 1970s, they were treated with sedatives, and psychotherapy was often also recommended for patients. One of the treatments may have been vagal nerve dissection. It was not until the 1990s that treatment began to change completely after it was discovered that the symptoms were often caused by a Helicobacter pylori infection.