Do you have a question about ME/CFS? (Also, check out our podcast and YouTube videos for information.)
What is ME/CVS?
ME/CFS is a chronic and debilitating illness characterized by persistent symptoms such as muscle pain, overstimulation, concentration problems, exacerbation of symptoms after activity, and fatigue. The post-exertional malaise (PEM) is characteristic of ME/CFS. The fatigue is described as a feeling of “flu without flu” and a battery that is drained and no longer recharges.
Is ME/CFS a new problem?
ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is not a new problem. It has been recognized for over 30 years, and much research has been conducted on it. The understanding of ME/CFS has evolved, and in recent decades, there has been increased recognition of the severity of the condition. The research has been accelerated with the emergence of Long COVID.
How common is ME/CFS?
An estimated 40,000 to 60,000 people have ME/CFS in the Netherlands. They did not recover after an infection or other cause.
Is a diagnosis possible?
Yes, a diagnosis of ME/CFS is possible, although it can sometimes be challenging due to the complexity of the condition and the lack of specific diagnostic tests. There is no single test that can definitively confirm ME/CFS.
Diagnosing ME/CFS typically requires a thorough evaluation of symptoms, medical history, and exclusion of other possible causes of fatigue and similar symptoms. Expert groups have developed various diagnostic criteria, such as the Fukuda criteria, the Canadian Consensus Criteria (CCC), and the ME-ICC (International Consensus Criteria for ME).
A diagnosis of ME/CFS usually also requires excluding other possible causes, such as thyroid problems, infections, autoimmune diseases, and other medical conditions that can cause similar symptoms. This may involve conducting blood tests and other relevant medical tests.
Which criteria are used for the diagnosis of ME/CFS?
The main criteria used for the diagnosis of MEA/CFS are:
- The Fukuda criteria
- The Canadian Consensus Criteria
- The International Consensus Criteria
- The SEID criteria
- The Oxford criteria
Is the severity of the problem measurable?
You can score how often a complaint occurs and how bothersome or limiting it is experienced. There still needs to be a laboratory test for the diagnosis. There are also tests available to measure the severity of the symptoms.
How is the severity of fatigue in ME/CFS measured with questionnaires?
Several questionnaires are used to measure fatigue and its consequences. Here are some commonly used questionnaires:
- The Multidimensional Fatigue Inventory (MFI): This questionnaire measures various dimensions of fatigue, including general tiredness, physical exhaustion, mental fatigue, and post-exertional fatigue.
- The Fatigue Severity Scale (FSS): This scale measures the severity of fatigue and its impact on daily functioning. It consists of questions related to the impact of fatigue on different aspects of life.
- The Brief Fatigue Inventory (BFI): This short questionnaire measures the degree of fatigue and its impact on functioning. It includes questions about the severity of fatigue, the extent to which fatigue interferes with daily activities, and the duration of fatigue over a certain period.
- The Fatigue Assessment Instrument (FAI): This questionnaire assesses the severity and impact of fatigue on daily functioning. It also measures specific symptoms and the influence of fatigue on physical and psychosocial functioning.
- The Chalder Fatigue Questionnaire is still widely used in psychological research.
- The CIS (Checklist Individual Strength) was developed in Nijmegen.
How is the severity of orthostatic intolerance in ME/CFS measured using questionnaires?
There are questionnaires available to measure orthostatic intolerance. Orthostatic intolerance refers to dizziness, fainting, and palpitations that occur upon changing position, such as lying down to standing up. These symptoms can result from autonomic dysfunction or low blood pressure.
Here are some commonly used questionnaires for measuring orthostatic intolerance:
- Orthostatic Grading Scale (OGS): This questionnaire asks about the frequency and severity of symptoms upon changing position. It includes questions about dizziness, fainting, and palpitations.
- Composite Autonomic Symptom Scale (COMPASS): This questionnaire assesses various symptoms of autonomic dysfunction, including orthostatic intolerance. It measures the severity of symptoms and their impact on daily functioning.
- Orthostatic Hypotension Questionnaire (OHQ): This questionnaire measures orthostatic intolerance and its impact on quality of life. It includes questions about dizziness, fainting, visual disturbances, and fatigue.
What tests are conducted?
We use the Stroop color-word test to assess the severity of brain fog. For orthostatic intolerance, we measure using the NASA 10-minute leaning test. For assessing physical limitations, we use the handgrip test. Together, these questionnaires and tests provide an overview of the many issues related to ME/CFS and the severity of limitations.
What does the handgrip test measure?
We use the handgrip test instead of the strenuous bicycle test. This modified test measures the energy production of your body. The test can also be repeated, for example, using a substance to measure if there is a blockade of output.
What does the Stroop color-word test measure?
In neuropsychological research, we often find a delay. Patients with post-viral syndromes use different parts of the brain less efficiently, which makes them slower. We have means to improve it, so we need objective measurements. The Stroop test can be done at home during a video or phone call, saving a trip to Amsterdam and a test when you are tired from traveling.
Why the NASA leaning test instead of a tilt-table test?
Both tests provide the same information. You lie down for 10 minutes and stand for 10 minutes. The difference between leaning against a tilt table or a wall is unimportant. Sometimes we only ask for a few extra cushions if standing is impossible. Both tests measure blood pressure and heart rate every minute. Additional or different measurements keep the approach the same.
Do you conduct scientific research?
JYes, the center conducts scientific research. Patients are asked for consent to use their data for research anonymously. The center is researching the relationship between tilt-table measurements and symptoms due to orthostatic intolerance in collaboration with the group of Prof Leonard Jason from DePaul University in Chicago. At the center, we document everything we do for patients and analyze this data to understand ME/CFS better.
Can i donate blood if i have ME/CFS?
It is not advisable. Multiple studies have shown that the blood of ME/CFS patients contains substances that harm, among other things, metabolism. This can have an adverse effect on the recipient’s condition. Additionally, the blood volume of ME/CFS patients is often significantly lower than that of healthy individuals, which can cause unpleasant reactions after donation.
Am I contagious if I have ME/CFS?
No more than anyone else. A transmissible disease has never been found in ME/CFS patients.
Do I (temporarily) need to refrain from having children if I have ME/CFS?
It is something to consider. Women are more likely to develop ME/CFS than men, indicating a genetic factor. It relates to women’s immune systems reacting more intensely and becoming overwhelmed earlier after an infection, which may explain its higher occurrence in families.
Delaying having children in the hope that the condition will resolve is not necessarily advisable. The likelihood of spontaneous remission is low, and having children at an older age is possible but does not make the condition lighter. However, treatment options are expanding.
Caring for children during the early years requires much energy. It is essential to have support from your partner or a network of adults willing to help in case of illness or absence, as this can provide peace of mind.
As children grow older, you may find participating in physically demanding activities like playing football challenging. Parents may feel burdened by this, but it’s worth considering whether children place significant importance on it. They may enjoy playing with friends just as much. A parent who waits at home with a cup of tea might be more important to them.
Does exercise help?
Exercise is beneficial when you are healthy and have insufficient fitness. Through training, your fitness level can improve. However, exercise does not lead to recovery for individuals with conditions like tuberculosis, rheumatism, or ME/CFS because the underlying causes are different. Exercising does not cure illness; it requires treatment. However, static exercises can help improve strength.
Does psychotherapy help?
Psychotherapy has been attempted but never proven to cure ME/CFS. ME/CFS is not a psychosomatic illness; people do not recover unknowingly. However, we know that the suffering caused by ME/CFS and other post-infection syndromes is significant due to a lack of understanding, hopelessness, and support. Psychotherapy can assist individuals in coping with a body that no longer functions properly.
Do treatments and medications help?
They do not cure the condition. Currently, no treatment eliminates the underlying cause of post-infection syndrome. Some patients have reported temporary improvements, but robust research is still lacking. We must exercise caution with treatments whose long-term effects are unknown. In the past we began using L-carnitine around the turn of the century, but we now have a list of possibilities.
While not all treatments are available in outpatient clinics, nearly all other options are accessible.
Is there a treatment plan?
Yes, indeed. We follow a standardized protocol. ME/CFS involves changes in a complex and interconnected network within the body. Altering one aspect through medication can have unforeseen consequences in other network parts. Each network reacts differently. Therefore, we have developed a treatment plan based on scientific research and our 30 years of experience. Our interventions aim to improve the disrupted processes in the body and restore balance to a better level. Together with you, we gradually build a supportive and improving treatment approach. We have found that the treatment plan works better when we achieve stable improvement rather than intervening halfway with a medication like LDN, which blocks information from the immune system but does not treat the underlying cause. We continuously strive to expand our knowledge of ME/CFS to provide the best possible care to our patients.
Improve ME/CFS patients through treatment?
It is essential to understand that ME/CFS is a complex and often challenging condition that does not progress the same way for everyone. Therefore, the effects of treatments and therapies can vary from person to person.
The treatments and therapies we offer, including a combination of interventions, medications, guidance, and the formation of a multidisciplinary team in the region, help reduce the symptoms of ME/CFS. Approximately 80% of the patients we treat experience an improvement in symptoms. However, it is essential to emphasize that we cannot provide a 100% guarantee of success because the condition can vary in each patient. We work hard to support and help our patients improve their quality of life, and we are always willing to explore possibilities for further improvement. Even minor improvements can lead to a better quality of life.
What are the criteria for diagnosing ME/CFS in children?
The criteria for diagnosing ME/CFS in children are similar to those for adults, but some adjustments consider children’s specific characteristics. The most commonly used criteria are:
- Persistent fatigue: The child must experience persistent or recurring fatigue lasting longer than three months, not due to exertion or other medical causes.
- Functional limitations: The fatigue must result in significant limitations in the child’s daily functioning, such as school attendance, social activities, or everyday tasks.
- Additional symptoms: In addition to fatigue, children with ME/CFS must experience at least two of the following symptoms:
– Problems with memory or concentration
– Sore throat
– Muscle or joint pain
– Headaches
– Sleep disturbances - Exclusion of other medical conditions: It is essential to rule out other possible causes of the symptoms, such as thyroid disorders, infections, or psychiatric conditions.
It is also important to note that diagnosing ME/CFS in children can be more challenging than in adults due to the different ways children express symptoms and the overlap of symptoms with other conditions. Therefore, a careful evaluation by an experienced pediatrician or pediatrician specializing in ME/CFS is essential for an accurate diagnosis.
What can we, as parents, do?
Children with ME/CFS often have special needs and may require extra care and support. Here are some tips for creating a safe environment for children with ME/CFS:
- Create a calm and low-stimulus environment: Children with ME/CFS may be sensitive to bright lights, noise, and strong smells. Ensure a peaceful and quiet environment at home by avoiding bright lights, using soft lighting, and minimizing noise sources.
- Please provide for a good sleep environment: good sleep is essential for children with ME/CFS. Create a comfortable and quiet sleep environment. Consider using blackout curtains, white noise, or relaxing music to help with sleep.
- Use energy-saving tools: Children with ME/CFS may struggle with daily activities due to fatigue and limited energy. Use tools such as supportive chairs and stools for easy reach, and consider a wheelchair or walker if necessary.
- Limit physical exertion: It is essential to limit physical exertion to avoid overexertion. Please encourage your child to take regular rest breaks and allow them the freedom to do activities at their own pace.
- Support social interaction: Social interaction is essential for children but can also be tiring for children with ME/CFS. Provide opportunities for social contact with friends and family but consider your child’s energy levels. This may mean making playdates shorter or scheduling more rest periods.
- Please communicate with the school: Keep in touch with your child’s school and discuss your child’s needs and limitations related to ME/CFS. Work with the school to make accommodations, such as flexible hours, extra rest breaks, or modified activities.
It is also advisable to consult with a pediatric ME/CFS specialist for specific adjustments and guidelines for your child. They can provide tailored advice based on your child’s needs and symptoms.
Are you having issues with the school?
This is a common concern.
The school may need to understand the limitations fully, and the compulsory education officer, and potentially child protective services, may be informed of a problem. This sometimes leads to accusations against parents, suggesting they are obstructing them. A proper diagnostic evaluation of the child, including objective measurement of limitations and communication with the school, is necessary. Information about post-exertional malaise should be included.”