ME / CFS means that you are very tired or have a feeling of exhaustion that cannot be rested. You may also feel sick and have pain in the body. The symptoms of illness can be relieved by various methods. You can get treatment for symptoms such as sleep disorders, stomach upset and pain.
ME stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis is an inflammation of the brain and spinal cord. CFS stands for chronic fatigue syndrome, which means chronic fatigue syndrome.
Everyone can get ME / CFS, both children and adults, but what causes the disease is unclear. Many who get it have had one or more bacterial or viral infections and after that never recovered, even though the infection itself has healed. Studies have shown that only one in ten people with ME / CFS fully recover, but in many people there is some improvement over time.
Common symptoms of ME / CFS are
- fatigue that does not go over when you rest
- a feeling of illness that is triggered when you exert yourself and lasts for more than 24 hours
- problems with sleep
- sore throat
- swelling of the lymph nodes
- pain in the joints
- weakness of the muscles
- difficulties with concentration
- reduced tolerance to stress.
To be diagnosed with ME / CFS, your activity and functional ability should be less than half compared to before you became ill. The amount of symptoms you get depends on whether you have been diagnosed, treated and adjusted at an early or later stage of the disease.
What can I do for myself?
The course of the illness can be very varied with better and worse days. Regular habits are important and you should remember not to overwork the days you feel stronger. It is important that you continue to be active based on your circumstances and find a balance between rest and activity. This reduces the risk of further deterioration.
When should I seek care?
Contact a health care provider if you suspect you have ME / CFS. It is important that you find out if you have ME / CFS or any other illness that can be treated and possibly cured. You can seek care at any medical center or open specialist clinic you want throughout the country. You also have the opportunity to have a regular doctor’s contact at the health center.
Investigations and investigations
The ME / CFS diagnosis is a so-called exclusion diagnosis, which is based on the fact that you have a disease history and a symptom picture that meet the criteria for the disease. There are several treatable diseases that can cause similar symptoms and the doctor must be able to rule out other causes of the symptoms. Therefore, it is of great importance that you be carefully examined if you have symptoms like ME / CFS.
You have the right to understand
In order for you to be able to participate in your care and make decisions, it is important that you understand the information you receive from the healthcare staff. Ask questions if you don’t understand. You can also ask for information printed so that you can read it peacefully.
The health center can write a referral to a specialist clinic with experience in ME / CFS. There, a doctor can assess your symptoms and you can get support and help to deal with some of the problems that the disease causes.
It is not possible to exercise healthy from ME / CFS. It is also not possible to rest well. The trouble can be exacerbated by your efforts. Therefore, you should not overwork if you have been diagnosed with ME / CFS. It is important to find a level of activity that you can handle without feeling worse the day after. You can get help from a physiotherapist or occupational therapist to find a level that suits you.
Cognitive behavioral therapy
Getting ME / CFS means for most people a change in life. If you need support in that change, you can get cognitive behavioral therapy. In many cases, it is about trying to accept what has become different while continuing to strive for an improved quality of life.
Antidepressants can be used if you are depressed. However, many who have ME / CFS are sensitive to side effects, so it is extra important that you have a good dialogue with your doctor. If you have pain, it can be treated and relieved with painkillers. Sleep problems can be treated with drugs.
In order to improve the memory and concentration ability of patients with ME / CFS, some doctors have prescribed high doses of vitamin B12, especially in the form of syringes and possibly in combination with folic acid tablets. There are no scientific studies that have determined the effects of treatment.
What is ME / CFS?
ME / CFS is classified as a neurological disease according to the World Health Organization WHO. ME stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis is an inflammation of the brain and spinal cord. But there is no clear biological evidence that it is actually an inflammation of the nervous system. CFS stands for chronic fatigue syndrome, which means chronic fatigue syndrome.
The term ME / CFS was coined in the 1950s. It has its background in several epidemic outbreaks during the 20th century of a polio-like illness that caused severe fatigue, flu and muscle weakness.
The cause of ME / CFS is unknown, but in about three out of four cases there is a connection to having one or more infectious diseases of a simpler kind. For example, it can be colds, respiratory tract infections or flu. It is also common for patients with ME / CFS to have any of the following symptoms:
- Sensitive bowel, so-called IBS.
- Orthostatic intolerance, that is, difficulties in standing up.
- Increased sleep need.
- Depression due to physical illness.
Similarities to other diseases
There are similarities between ME / CFS and fatigue syndrome . The essential difference between them is that in fatigue syndrome, factors in the environment and severe stress must have existed for at least six months before becoming ill.
Also, the flu-like symptoms that are part of ME / CFS do not belong to the typical picture of fatigue syndrome. These include, for example, sore throat, swollen lymph nodes, muscle pain or weakness, fever, and an exacerbation of exertion that persists for more than 24 hours. In case of fatigue syndrome, you can also treat the symptoms with, for example, specific rehabilitation programs, medicines for depression and more. On the other hand, there is a risk of people suffering from fatigue syndrome and who have not recovered from illness in ME / CFS as the immune system’s ability to fight infections decreases due to stress. If you have become exhausted due to prolonged stress and are not recovered after treatment, you may, in consultation with your treating physician, consider the assessment of a specialist at ME / CFS.
There are other diseases with similar symptoms such as depression, anxiety syndrome, some rheumatic diseases and sleep apnea syndrome. There is the possibility of getting treatment for all those diseases.
Living with ME / CFS
After the illness, it is common to become depressed. It may be related to the fact that the disease limits the possibility of activities and social contacts. You may also find it difficult to do your job or go to school. It can also be difficult to cope with other things in everyday life. But you can still feel better by the treatment you can get for some of your problems, by adjusting your activity level and by gaining more knowledge about the disease. If you have underage children, they have the right to receive information and support.
Right to support and assistance
You have the right to get the help you need from healthcare and authorities. This can include, for example, assessment, support in the home and help to create the conditions for returning to work, schooling or other activities. You can talk to a curator, who can be an important support and help in contact with the authorities. Experience indicates that understanding the disease and adapting to environmental factors is important for being able to feel better and increase the quality of life. The availability of support varies between the county councils, so you may need to apply for a different county council than the one in which you reside.