They experience genuine disease symptoms, yet they are often disbelieved by the environment and even the medical staff. As a result, patients with chronic fatigue syndrome tend to be very lonely in their suffering.
- Chronic fatigue syndrome is recognized by experts as a serious, long-term general medical disorder, probably caused by a defective immune system that responds inadequately to infection or stress.
- The US Centers for Disease Control and Prevention and the UK’s National Institute of Health and Care are developing completely new guidelines for people with CFS to help them function with the disease
- Correct diagnosis in an adult is already a serious challenge. Very young people also fall for CFS, who should be provided with comprehensive support at school
After struggling with post-concussion syndrome for over a month recently, I can’t imagine how people with the so-called Chronic Fatigue Syndrome can cope with exhaustion that seems to be endless. And especially how do those people who are wrongly told things like, “It all exists only in your head”, “Maybe you should go to a psychiatrist?” or “You’d have more energy if you just started practicing a little more.”
Although health care institutions have long sought to treat chronic fatigue syndrome as if it were a mental disorder, now experts recognize it as a serious, long-term general medical condition, possibly caused by a failing immune system inadequately responding to infection or stress. In many ways, chronic fatigue would resemble autoimmune diseases like rheumatoid arthritis without the obvious symptoms of tissue damage. In the medical literature, the chronic fatigue syndrome is sometimes referred to as the English acronym CFS (for chronic fatigue syndrome).
The traditional advice to “get out of it with exercise” was found not only ineffective but even counterproductive. Usually, exercise in CFS patients only makes matters worse, and even the mildest movement, such as brushing your teeth, can lead to debilitating exhaustion, the main symptom of the disease. Currently, both the U.S. Centers for Disease Control and Prevention and the British National Institute of Health and Care are developing completely new guidelines for people with CFS to help them function with an illness whose main symptoms are prolonged (six months or more) exhaustion that prevents normal life. joint pain and cognitive impairment.
Many patients have had to wait too long for this new approach to CFS. In turn, it is also possible to understand doctors who have so far found it difficult to assume that a health problem clearly unrelated to a physical abnormality would have a physical rather than a mental cause, especially in patients who, due to prolonged suffering, would also show symptoms of depression or anxiety. From the perspective of patients who have difficulty convincing those around them that they are experiencing serious somatic disease with real symptoms, the most important thing would be to get physicians to treat them with due respect and to prescribe evidence-based treatment that offers hope of recovery.
Skeptical healthcare professionals may change their minds upon learning about factors that often precede a CFS attack, and upon learning about the abnormalities we now know that chronic fatigue syndrome is often associated with. For example, one in ten patients meeting the medical CFS criteria report that they developed exhaustion following an infection with the Epstein-Barr virus, Ross River virus, or Coxiella burnetii, a bacterium that causes Q fever. CFS is often accompanied by a disruption of the immune system. including chronically elevated levels of cytokines, which affect the way the body responds to stress. In turn, the impaired function of NK cells (natural killer cells) reduces the body’s ability to fight infection, and abnormalities in the functioning of T cells translate into an inadequate immune response.
The axial symptoms of the chronic fatigue syndrome prove that there is no simulation in the patient. After all, no one with a pleasant life could pretend to be so weakened. As experts at the Centers for Disease Control put it, “People with CFS experience exhaustion that is very different from simply being tired. Exhaustion in chronic fatigue syndrome can be really severe; it does not pass by sleep or rest, and was not a problem for the individual until he became ill. ‘
What’s more, experts from the US agency explain, the symptoms of CFS usually worsen “after physical or mental activity that did not lead to exhaustion before.” Sometimes, even minimal effort can make the patient lose strength and require several days, weeks, or even longer time to recover. Such a trivial activity as shopping at a grocery store, participating in a school event, preparing a meal, or even taking a shower sometimes creates the need to go to bed.
Even after a good night’s sleep, patients do not feel rested, and their sleep is often abnormal: falling asleep or maintaining uninterrupted sleep is difficult. Patients often describe their brain functions as “blurry”: they experience problems with memory, quick thinking or paying attention to details. Some people with CFS experience a feeling of lightheadedness, dizziness, weakness, even leading to fainting when standing or sitting. Such symptoms are often accompanied by muscle or joint pain that is not associated with specific damage to them, headaches that have not occurred before, or intensification of the existing ones. Some patients also report soreness in the lymph nodes in the neck or armpits, frequent throat problems, chills, night sweats, allergies, and digestive disorders.
Estimates of the number of patients in the United States alone oscillate between less than a million and 2,5 million people. Such a broad scope would arise from different definitions of CFS. In addition, the US National Academy of Medicine in 2015 estimated that up to 90 percent would be undiagnosed. patients suffering from chronic exhaustion.
In order to make a precise diagnosis at all, the doctor should first review the medical history of the patient and his family, order him to perform somatic and mental health tests, blood and urine tests, and much more. The sick person should be asked about their earlier well-being and what the changes would involve: what makes the person feel better or worse now than before.
Correct diagnosis in an adult is already a serious challenge, not to mention a child or a teenager, whose school or out-of-school problems can be easily taken for a symptom of a neurological, psychosocial disorder, learning disabilities, and even blamed for mere laziness. Meanwhile, it is known that very young people also suffer from CFS, who should be provided with comprehensive support at school, adjusting the requirements to the current abilities of the child.
So far, no cure for chronic fatigue syndrome has been developed and we sensitize patients to mistrust their maintainers to the contrary. When it comes to treatment, the Centers for Disease Control recommend that you deal with the symptoms that are most bothersome for you. If these were problems with sleep, it would be necessary to mobilize the patient to observe regular bedtime and waking up times, limit naps during the day to 30 minutes and avoid all distractions (such as TV, computer, telephone or other electronics) in the bedroom.
If the pain in muscles and joints would be the most troublesome for the patient, it is worth referring him to a specialist in pain management, especially when commonly available painkillers are insufficient for the patient. For people experiencing problems with memory or concentration, medications used in patients with ADHD can help, as well as strategies for using calendars and planners, where you can note down the most important things.
To minimize fatigue, find it easier to carry out everyday activities, such as sitting while cooking dinner or showering, or breaking larger tasks into smaller pieces. Whenever possible, shop online and order food delivered to your door. Also, be careful not to take on too many responsibilities when you feel better and break down.