What is chronic fatigue syndrome?
Chronic fatigue syndrome (CFS) is something many people may experience in their lives and not be accurately diagnosed with. It is a complex condition that is characterised by feeling extremely fatigued for more than 6 months without the explanation of an underlying medical disorder, although cognitive difficulties are often experienced along with fatigue. The fatigue experienced may increase with mental or physical activity, and will not improve with rest.
The condition is also referred to as ME (myalgic encephalomyelitis) and has recently been renamed SEID (systemic exertion intolerance disease) after this was proposed by the Institute of Medicine in 2015. The three different names for chronic fatigue (CFS, ME and SEID) share the main symptom of an individual being chronically fatigued and are often used as interchangeable terms. Chronic fatigue as a symptom may be caused by a number of underlying conditions, therefore making the disorder more difficult to explain and diagnose.
The cause of CFS is still unknown, however, there are a number of theories in circulation within the medical community. These theories range from psychological stress to viral infections. There are some experts who believe that the disorder may be the result of many factors which can trigger chronic fatigue syndrome.
There is no single way to diagnose chronic fatigue syndrome and if you’re suffering from persistent, extreme, unexplained fatigue you may require an assortment of tests in order for other health disorders with similar symptoms to be ruled out. Once this has been done, treatment will usually focus on the relief of the symptoms.
What are the symptoms of chronic fatigue syndrome?
There are eight official symptoms of chronic fatigue syndrome, these are as follows:
- Fatigue that is unexplained and persists for longer than 6 months
- Sore throat
- Notable cognitive difficulties including loss of concentration and short-term memory
- Enlarged lymph nodes in the armpits or neck
- Unrefreshing sleep
- Pain moving between joints resulting in redness or swelling
- Headaches of a previously unexperienced nature, with unique patterns and range of severity
- Extreme exhaustion that lasts for longer than 24 hours after mental or physical exercise
The symptoms of CFS will normally appear suddenly. However, some people may develop the symptoms over a number of weeks or even months or after suffering from an unrelated infection such as the Epstein-Barr virus (EBV), pneumonia or an upper respiratory tract infections) which induce unusual and prolonged fatigue even after they have resolved.
The symptoms often vary depending on the day and may appear periodically through cycles of remission and relapse. These cycles make it difficult for the symptoms to be effectively managed.There are a wide range of chronic fatigue syndrome symptoms and as previously mentioned, the core symptoms are further explained as follows:
There are a wide range of chronic fatigue syndrome symptoms and as previously mentioned, the core symptoms are further explained as follows:
- Suffering from extreme mental and/or physical fatigue for more than 6 months – This can be experienced constantly or in periods as it comes and goes. This type of fatigue is not alleviated with rest and interferes with work and/or any social activities.
- Feeling unwell and exhausted after physical exercise – This means that you feel very weak or ill or your symptoms of CFS are worsened by This fatigue can also be delayed after exercise and it may take up to 24 hours or more for you to feel better.
- Having issues with sleeping.
- Suffering from pain that is isolated or widespread across your body - The pain may either move or stay in one place and can consist of:
- Joint pain
- Muscle pain
- A sore throat
If you have chronic fatigue syndrome then you will suffer from two or more of the following symptoms:
- Cognitive issues that result in difficulties with language, memory and concertation
- Being extremely sensitive to noise, light and/or emotions
- Feeling confused, thinking slowly and/or being disorientated
- Suffering from issues with muscle coordination and weakness
Chronic fatigue can also result in the below list of symptoms (bear in mind that different people who have CFS may have a variety of different combinations of the below symptoms):
- Feeling lightheaded and dizzy with an unusually elevated heart rate and feeling out of breath when being physically active
- Urinating often
- IBS (irritable bowel syndrome)
- Low temperature with cold feet and hands, sweating or issues with cold or heat
- Feeling much worse when under stress
- Changes in appetite or weight
If you experience depression with CFS, then this can aggravate your symptoms. Depression associated with chronic fatigue syndrome is commonly seen in a number of people for many reasons, some of which include:
- Feeling tired all the time, experiencing difficulties in thinking and remembering things and having no energy to do the things a person once enjoyed can leave one feeling frustrated, lonely and depressed.
- Due to the complexity of CFS, the path to an accurate diagnosis is often a long, arduous and expensive one fraught with frustration and despair at not having an answer as to why one is feeling chronically exhausted.
- In some cases, depression occurs as ill-informed medical professionals, colleagues, friends or family members believe that the sufferer’s condition is “all in their head”, leaving them feeling isolated and as if no one truly understands what they are going through.
Chronic fatigue syndrome results in very similar symptoms that a number of other conditions share, particularly in the initial stage of the disorder. As a result, CFS is only diagnosed after a doctor has conducted a thorough examination and ruled out any other conditions with similar symptoms.
When to see a doctor
Fatigue is a common symptom in various illnesses, these include physiological disorders and infections. It is advised that you make an appointment to see your doctor if you suffer from excessive and persistent fatigue that hinders your everyday life.
What is the difference between chronic fatigue syndrome and feeling fatigued?
CFS is a complicated disorder and many people may have the condition for years and not be accurately diagnosed or treated. The difference between being really tired all the time and having chronic fatigue syndrome is that CFS sufferers experience persistent fatigue lasting for six months or in some cases, more. If your fatigue is resolved through a few nights of good sleep or having a relaxing day off of work, then you do not have chronic fatigue syndrome.
Can chronic fatigue syndrome be cured?
There is currently no cure for CFS due to the exact cause being unknown. However, there are a number of treatments that can aid in managing the symptoms.
What causes chronic fatigue syndrome?
The exact cause of chronic fatigue syndrome is still unknown, however, the syndrome may have some relation to infections that have an effect on your immune system. There are several viruses that have previously been studied as the possible causes of chronic fatigue syndrome, but there has been no direct link regarding a cause and effect relationship identified.
There is some evidence that suggests that the bacteria that cause lung infections such as pneumonia, known as Chlamydia pneumoniae, may be a possible cause of some cases of CFS. People who have this bacterium are likely to respond well to treatment consisting of antibiotics and may have their symptoms improved through the administration of antibiotic drugs like doxycycline. The link between CFS and Chlamydia pneumoniae is still debatable in medical circles. However, most agree that there are various infections that seem to lead to chronic fatigue that have no relation to each other.
Some factors that have been identified as possible causes of chronic fatigue syndrome include:
- Viral infections – Due to some cases of CFS developing after a person has had a virus, researchers have questioned whether some viruses are able to trigger chronic fatigue syndrome. Some of these viruses are:
- Human herpes virus 6
- Mouse (Murine) leukaemia virus
- Epstein-Barr virus (EBV)
There has not been any conclusive link found as yet.
- Hormonal imbalances – Those who suffer from chronic fatigue syndrome may also experience abnormal levels of hormones in the blood. These hormones are produced in the adrenal glands, pituitary glands or the hypothalamus. The consequence of irregular hormonal levels and their role in CFS is still uncertain.
- Immune system disorders – Those who have CFS tend to have a slightly weakened immune system, however, it is still unclear if the impairment is prominent enough for it to result in chronic fatigue syndrome.
What are the risk factors for chronic fatigue syndrome?
There are certain factors that may increase your chances of developing chronic fatigue syndrome. These include:
- Age – CFS affects people of all ages, however, it is most commonly seen in those who are between the ages of 40 and 60.
- Stress – Finding it difficult to manage stress and having added stress in your work or family life may contribute to the development of CFS.
- Gender – CFS is seen more in women than men. This could be due to women being more open to reporting their signs and symptoms to their doctor and not an actual indication of the syndrome affecting one gender more than the other.
What are the complications of chronic fatigue syndrome?
There are a few complications that may develop from chronic fatigue syndrome, these include:
- Lifestyle restrictions
- Increased amount of leave/sick days from work
- Social isolation
Having CFS can be a draining experience and cause you to not want to socialise as you may find it exhausting to do so. Your work capabilities will also be compromised as cognitive ability may be impaired along with a struggle to find the motivation to work.
Depression may develop as a result of CFS as feeling fatigued can result in a sadness or unwillingness to get up in the morning. The cycles of symptoms are also similar to those of depression with bouts of happiness on days where you feel good and sadness on the ones you don’t. The difference between the two conditions is that depression is a mental health condition and chronic fatigue syndrome is a physical disorder first and foremost. However, there is some overlap between the conditions. The conditions can occur simultaneously and it is also easy to misdiagnose one as the other as symptoms of fatigue can be mistaken for depression, and the same goes for feelings of emptiness and impaired cognitive ability associated with depression being diagnosed as chronic fatigue syndrome.
Bear in mind that although depression can be a complication of CFS as those who are chronically fatigued may become depressed, depression does not cause chronic fatigue syndrome, although it certainly can result in fatigue as a symptom.
A commonly seen pattern in those who have chronic fatigue syndrome is the person will suddenly feel ill and flu-like and experience similar symptoms to the flu that do not go away on their own. These infections (either viral or bacterial) may suppress the master gland in the body known as the hypothalamus. The hypothalamus has the role of controlling other glands which include the testes, ovaries, adrenals and thyroid.
If the hypothalamus is suppressed this will result in a subtle yet debilitating decline in the strength and functioning of all of these glands and the hormones they produce. This can trigger a sleep dysfunction.
If the hypothalamus gland is suppressed, this can cause a disruption in your sleep patterns due to the body confusing its day and night cycles. Due to this, those who suffer from CFS may have issues with staying in a deep stage of sleep and therefore battle to feel recharged when they wake up.
Poor sleep can result in immunosuppression, this can cause some secondary bowel conditions and infections. Bowel infections that have been seen in those with CFS may lead to a decline in a number of nutrients absorbed, thus leading to chronic mineral and vitamin deficiencies, which in turn can increase feelings of fatigue.
The hypothalamus, located in the brain, is responsible for governing a number of functions such as thirst, hunger, mood, sleep, sex drive and some physiologic functions. When you understand these functions, it becomes clear that the suppression of hypothalamus function can lead to a number of complications associated with chronic fatigue syndrome.
How is chronic fatigue syndrome diagnosed?
CFS does not have one single test that will allow for the diagnosis thereof to be confirmed. Due to the symptoms of chronic fatigue syndrome mimicking those of a number of other health conditions, patience is often required whilst waiting for your diagnosis.
It is likely that your doctor will first rule out any other diseases and conditions before he or she can diagnose you with CFS. These conditions may include:
- Sleep Disorders – Sleep disorders can cause chronic fatigue as a symptom. Your doctor may conduct an overnight sleep study known as a polysomnogram (PSG). This will record your brain activity, blood pressure, heart rate, eye movements, body movements and oxygen levels. Some disorders that may disturb your sleep are insomnia, sleep apnoea and restless leg syndrome.
- Mental health problems – Anxiety, depression, schizophrenia and bipolar disorder are some conditions that have chronic fatigue as a symptom. A psychologist or psychiatrist is able to determine whether you may have any of these underlying conditions as the cause of your chronic fatigue. The issue with diagnosis comes in due to chronic fatigue syndrome being able to cause conditions such as depression, therefore adding a complication to the diagnostic process.
- Medical issues – There are a number of medical problems that may result in chronic fatigue as a symptom. These include diabetes, anaemia and hypothyroidism (this is an underactive thyroid). There are lab and blood tests available that can detect any abnormalities in the blood that may be causing certain medical conditions.
Your doctor may perform the following tests in order to diagnose chronic fatigue syndrome:
- There are several conditions that can cause chronic fatigue, therefore tests need to be conducted to exclude these conditions. These tests include:
- Adrenal tests
- Liver function tests
- Thyroid tests
If you have chronic fatigue syndrome, these results will be normal.
- Blood tests will also need to be conducted to help diagnose CFS. Lab tests done on those with CFS have consistently shown that there is an erythrocyte sedimentation rate (ESR) that indicates there is no presence of inflammation, meaning that the ESR is at the extremely low end of a normal reading. An erythrocyte sedimentation rate measures the rate at which the red blood cells settle or sediment over a specific period of time, typically one hour. If the ESR results are elevated or in the range of high to normal, then a diagnosis of CFS is unlikely. Your doctor will also be able to detect other conditions from the blood tests, if these are found then CFS will be ruled out.
- Your doctor may also order tests known as antibody tests that will aid in determining whether there have been any previous infections such as pneumonia, Epstein-Barr virus (EBV) or Lyme disease that have caused your chronic fatigue.
Your doctor may perform the following imaging studies in order to diagnose chronic fatigue syndrome:
- Imaging tests such as an MRI (magnetic resonance imaging) - this is a type of scan that makes use of magnetic fields as well as radio waves that will create detailed visuals of the inside of your body, the MRI scanner consists of a large tube that contains very powerful magnets, you will lie down inside of this tube for the scan. A CT (computed tomography) scan may also be conducted, this is a type of X-ray. These screening tests will allow for your doctor to rule out any other conditions or disorders of your CNS (central nervous system). If you have CFS the results of the tests will be normal.
- Another form of a screening test is known as a positron emission tomography and/or a single-photon emission computed tomography. This test allows for any areas of the brain in the temporal/frontoparietal region with decreased blood flow to be detected. If there is a decreased amount of blood flow in this area, this will explain any cognitive issues experienced due to chronic fatigue syndrome.
As previously mentioned, in order for the diagnostic criteria for CFS to be met, you will need to have experienced inexplicable, persistent fatigue for at least six months or longer. Along with this, you will need to meet a minimum of four of the below symptoms (these have been previously mentioned in symptoms section):
- A sore throat
- Cognitive issues (battling with concentration and memory)
- Muscle pain that is unexplained
- Inflamed lymph nodes in the armpits or neck
- Joint and muscle pain moving from one area to another with no visible redness or swelling
- Unrefreshing sleep
- Extreme exhaustion that lasts for longer than a period of 24 hours after mental or physical exercise
- Headaches with different patterns and severity to those you’ve previously encountered
Chronic fatigue often accompanies several different medical disorders and is therefore not always an isolated symptom. In cases such as these, doctors have stated that a more appropriate term for the condition may be that of chronic multifactorial fatigue.
How is chronic fatigue syndrome treated?
It is generally advised that if you suffer from chronic fatigue syndrome, you should take it easy and try to pace yourself as much as possible. This means that you should attempt to avoid any emotional stress or excessive physical activity.
It is vital to remember that the goal for treating CFS is to avoid any pain or fatigue from progressing. It is advised that you implement a daily routine that can be easily managed and followed in order to avoid the progression of symptoms or a relapse. Any exercise that you perform should be done under supervision from a PT (physical therapist) or doctor. It is also best to avoid complete rest (i.e. some exercise should still be undertaken) as stopping all physical activity can make you feel more fatigued. Therefore, you should try to maintain some physical activity that is conducted at a steady and comfortable pace. If you wish to increase your physical activity, then you should do so at a gradual rate. Decreased amounts of caffeine and alcohol may also help you to sleep better. Social isolation should also be minimised as being around people and taking your mind off your condition may help to improve your overall mood.
Your treatment plan will be dependent on the symptoms experienced. Being diagnosed early, following a treatment plan, taking medications and controlling certain symptoms are all factors that will aid in your recovery. CFS can last for a number of months and even years, yet some people, through treatment and pacing themselves will recover completely and successfully return to the pace of their normal life. However, other less fortunate cases may have their symptoms aggravated due to lack of treatment and knowledge.
The treatment plans for chronic fatigue syndrome
There are a number of different treatment options for CFS, it is likely that your doctor will choose one tailored to you in order for your personal symptoms to be managed.
Your doctor will first discuss the options and explain what the side effects and benefits of these are. From this, a personalised plan is likely to be developed for you. Should your symptoms be more severe, then your doctor may also refer you to a specialist such as a psychologist to help you manage mental health issues such as stress, anxiety and depression associated with CFS. Your doctor will regularly review your treatment plan and your recovery, making adjustments where necessary for the best results.
Specialist treatments for CFS
The following are the different specialist treatments available for those with CFS:
CBT (cognitive behavioural therapy)
This is a type of vocal (talking) treatment designed to aid in managing the way that you behave and think. This technique may aid in the following ways:
- Helping you to accept your condition for what it is
- Allowing you to feel that you have control of your own symptoms
- Challenging the emotions that may be preventing your symptoms from improving
- Gaining a thorough understanding of the cause and effect relationship between your behaviour and your condition
The CBT therapist is likely to have some experience in dealing with those who have CFS and will offer the treatment on a personal basis.
The usage of CBT as a psychological method of treatment does not mean that chronic fatigue syndrome is a mental condition or “all in your head”, rather cognitive behavioural therapy is part of a broader scope of treatment for several long-term disorders.
GET (graded exercise therapy)
This treatment technique is conducted through an exercise programme that is structured to gradually increase the amount of time you perform physical activity. GET typically involves raising your heart rate through walking or swimming and the programme is tailored to your personal physical capabilities.
GET will be conducted by a specialist who has hopefully had some experience with CFS patients, and is normally done on a personal, one-on-one basis.
Once finding out what your capabilities are, the length and intensity of the exercise will be increased gradually. You will also set goals to reach with your trainer. These goals may take a number of weeks or even years to achieve, but it is vital to try to reach these as this will help with the improvement of your condition.
This technique ties in with GET and will involve you setting your own personal goals in daily life and recording your rest periods and current activity in a diary. You will then gradually increase these over time, bearing in mind that you should not over exert yourself as this may result in your symptoms progressing, but you should rather perform physical exercise and activities in a way that is manageable and without any adverse after effects.
Currently, there is no specific drug or medication for the treatment of chronic fatigue syndrome, but there are a number of medications available to aid in the improvement and relief of symptoms.
OTC (over-the-counter) pain relievers may help in easing headaches and any joint and muscle pain you suffer from. Your doctor may also prescribe some stronger medications, although these should only be used short-term.
Antidepressants and sleeping tablets are often prescribed to those who suffer from depression as a result of chronic fatigue syndrome. These often aid in improving sleeping issues and relieving pain. Some of these include:
- Amitriptyline – This is a low-dose antidepressant drug and also aids in easing muscle pain
- Sertraline (Zoloft) and Bupropion (Wellbutrin) – These are used to treat any issues regarding sleep or pain and can also aid in the improvement of psychological issues.
Supplements and diet
These lifestyle changes should be an additional form of treatment to medications and the aforementioned techniques.
Supplements and diet may play a vital role in the improvement of your symptoms. A number of doctors will suggest that you stick to a balanced and healthy diet. You may be referred to a dietitian who will be able to design a meal plan for you that ensures you are getting the nutrients and energy you need from the food you eat.
Supplements also have several benefits, some of these include:
- Vitamin C – Aids in boosting the immune system
- Vitamin B12 – Prevents anaemia and keeps your body’s blood and nerve cells healthy
- Coenzyme Q10 – Promotes energy and cell growth
- Magnesium – Aids in keeping your blood pressure normal, increases energy and calms anxiety and nerves, as well as offering a number of other health benefits
Rest, relaxation and sleep
If you suffer from chronic fatigue syndrome you may battle to:
- Fall asleep and fall into a deep sleep
- Wake up feeling refreshed
- Get enough sleep as you feel as though you still need more
- Sleep during the night as you may sleep more during the day
Your doctor may be able to help you in establishing a healthy sleeping pattern. You may find that you need to sleep during the day, if this is the case, and it is possible for you to do so, then your doctor is likely to suggest that you have naps that are no longer that 30 minutes so that you are still able to get a good night’s sleep.
There are also a number of breathing and relaxation techniques such as meditation and deep breathing that may be able to help you to feel refreshed during the day as opposed to having a nap.
Other lifestyle changes to help manage CFS
Some people who have severe CFS may need to have a special badge to enable them to park their car in the disabled parking area as walking far distances is extremely difficult for them to do. They may even need a stairlift to be fitted in their homes, and in the most severe cases, a wheelchair will need to be implemented.
Counselling and support groups
There are some community support groups for those who suffer from CFS, however, not every patient will find these to be useful and a number of people do not get their symptoms diagnosed or recognise this as a real condition. It is vital to see chronic fatigue syndrome as a very real and, in some cases, severe condition that can have a vast and complicated impact on one’s life.
Relapses or setbacks of CFS
Relapses are a common experience if you suffer from CFS, this is when your symptoms feel significantly worse for a period of time. The condition will usually follow cycles or patterns of remission and relapses. Relapses are often the result of several factors such as unplanned mental or physical activity or infection. In some cases, there is no clear or specific cause. Your specialist or doctor can help you to manage these relapses by:
- Prescribing any medication necessary to help alleviate symptoms
- Teaching you breathing and relaxation techniques
- Including more rest periods in your activities
- Encouraging you to be positive regarding the outlook and recovery of your condition
What is the follow-up care?
Your doctor and/or specialist is likely to ensure that you schedule regular check-ins and follow-up appointments so that he or she can ensure your condition is improving and modify your treatment if need be.
Can chronic fatigue syndrome be prevented?
CFS is unable to be cured or prevented as those who have it seem to continue to live with the condition through the appropriate treatment and managing the symptoms and some people may even undergo a complete recovery. Symptoms will generally worsen through too much physical or mental activity, periods of stress and lack of sleep. Although, treatment can noticeably improve and relieve the symptoms of CFS.
What is the outlook for CFS?
The number of people who recover from CFS completely is still unknown. Although primary evidence indicates that majority of patients will recover from the illness within five years from the start of the first symptoms.
Most people will have their symptoms relieved and managed through treatment although they may still suffer from bouts of relapse and remission in future.
CFS has only recently been recognised as a real medical condition and there is still a large amount of research needing to be conducted on the disorder. As such, treatment should be conducted by a patient, empathetic medical professional who understands your condition and is willing to work with you on an ongoing basis.