How Is Me/cfs Treated
There is currently no FDA-approved treatment or drug for ME/CFS. As neither a cause nor cure for ME/CFS has been identified, treatment is directed at relieving symptoms. However, there are interventions and symptom-reduction strategies that you can use to significantly improve patients quality of life.
Learn more in our Patient Resources section.
Studies show that less than 9-16 percent of ME/CFS patients in the United States have been properly diagnosed. Diagnosing ME/CFS is a challenging process because there is still not one diagnostic test or biomarker thats conclusive. Getting a definitive diagnosis often takes months or even years.
Providing compassionate and effective care for patients with ME/CFS can be challenging, like many other multisystemic chronic conditions. Patients and their providers must be partners with open lines of communication in order to effectively manage this illness. For medical providers seeking to provide better care for ME/CFS patients, reference our educational materials at our Medical Provider Resources page.
What Is Chronic Fatigue Immune Dysfunction Syndrome
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Abnormal Metabolism Involving The Gaseous Signaling Molecules No And Hydrogen Sulfide
The major gaseous signaling molecules include NO, carbon monoxide, and hydrogen sulfide . They play key roles in the regulation of blood pressure, inflammation, and neurotransmission . Under physiological conditions, both NO and H2S have anti-inflammatory effects . However, both deficient and excess production of these gaseous signaling molecules can create brain pathology, immune dysfunction, and redox imbalance .
NO.
NOS2 is significantly up-regulated in patients with severe and critical COVID-19 . There is evidence of nitrosative stress and disordered NO metabolism in people with ME/CFS . Levels of NO are higher in ME/CFS patients, which can accelerate nitrosative stress . Citrulline, a product of arginine metabolism by NOS, also is increased in ME/CFS .
H2S.
Normal H2S metabolism protects against inflammation and redox imbalance . One of the modes by which H2S functions is by a posttranslational modification termed persulfidation or sulfhydration , which prevents irreversible oxidation of proteins . H2S metabolism is disrupted in Alzheimers disease, Parkinsons disease, and Huntingtons disease and also, during aging . H2S inhibits tau-phosphorylation, which may explain, in part, its role in protecting against Alzheimers disease .
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The Cdc Symptom Inventory
All participants in the DePaul sample completed the CDCâs Symptom Inventory , a self-report measure of the frequency and severity of 9 CFS-related symptoms over the past one month. A composite score of frequency and severity is obtained for each symptom. Additionally, participants are asked the duration in years of each symptom and whether or not they currently consider the symptom to be a part of their ill health and their past ill health. The measure evidences good internal consistency and good convergent validity .
Possible Causes Of Inflammation
Much of the ME/CFS research community takes inflammation as a given. In the alternative name myalgic encephalitis , which has been adopted by some researchers, encephalitis means inflammation of the brain and spinal cord.
Some researchers point to possible inflammatory triggers that don’t involve autoimmunity.
A 2012 study published in Psychiatry Research attempted to separate chronic fatigue, chronic fatigue syndrome, and myalgic encephalitis into different categories. Researchers found that ME patients had higher levels of two specialized immune proteins called cytokines, which promote inflammation. They’re called interleukin-1 and tumor necrosis factor-alpha. They also found elevated levels of neopterin, which is an indicator of pro-inflammatory immune activity.
More recently, studies have shown that inflammatory markers can accurately distinguish ME/CFS from depression or sickness behaviors.
A study published in Metabolic Brain Disease is just one of a growing body considering oxidative and nitrosative stress coupled with low antioxidant levels as a possible mechanism of ME/CFS, suggesting that these factors could point to an immuno-inflammatory pathology.
Other researchers have suggested that certain pathogens may, in predisposed people, trigger a chronic immune activation, which would create chronic inflammation and a cascade of problems. One of the main suspects in this scenario is the Epstein-Barr virus, which causes mononucleosis .
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Personal And Medical History
The health care provider will take a careful personal and family medical history, and perform a thorough physical examination and psychological assessment. The provider will ask questions such as:
- When did the fatigue first begin?
- Does anything make it worse or better?
- Is it better at certain times of the day?
- Does physical or mental activity make it worse?
- What are your other symptoms?
- Has anyone else in your family experienced similar symptoms?
- Is your personal and professional life stressful?
The provider may also ask about any changes in weight or recent illnesses. You should tell your provider about any drugs you are taking, including over-the-counter medications, and vitamin, herbal, or dietary supplements. You may be asked to keep a diary for several weeks to record your activities and symptoms.
What Are The Treatments For Chronic Fatigue Syndrome
There is no cure or approved treatment for CFS, but you may be able to treat or manage some of your symptoms. You, your family, and your health care provider should work together to decide on a plan. You should figure out which symptom causes the most problems and try to treat that first. For example, if sleep problems affect you the most, you might first try using good sleep habits. If those do not help, you may need to take medicines or see a sleep specialist.
Strategies such as learning new ways to manage activity can also be helpful. You need to make sure that you do not push and crash. This can happen when you feel better, do too much, and then get worse again.
Since the process of developing a treatment plan and attending to self-care can be hard if you have CFS, it is important to have support from family members and friends.
Dont try any new treatments without talking to your health care provider. Some treatments that are promoted as cures for CFS are unproven, often costly, and could be dangerous.
Centers for Disease Control and Prevention
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Symptoms Of Chronic Fatigue Syndrome
The main feature of ME/CFS is a type of exhaustion known as post-exertional malaise, crash or payback. This means having flu-like symptoms after exercise and not having enough energy for daily activities.
Research shows that people with ME/CFS have a different physiological response to activity or exercise from other people. This includes abnormal exhaustion after any form of exertion, and a worsening of other symptoms. The response may be delayed, perhaps after 24 hours. Depending on the amount and type of exercise, it may result in post-exertional malaise for a few days, or serious relapses lasting weeks, months or even years.
- problems with thinking, concentrating, memory loss, vision, clumsiness, muscle twitching or tingling
- disrupted sleep
- sore throat, tender lymph nodes and a flu-like feeling
- inability to cope with temperature changes.
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Autoimmunity: The System Misfires
Autoimmunity is when the immune system mistakenly identifies a part of your body as a foreign invader, like a virus it needs to get rid of. Your own body triggers its inflammatory process and sends specialized cells to destroy the target and begin the healing process.
Only with autoimmunity, the healing process creates more of whatever body part your immune system doesn’t like, so it continues to attack. And heal. And attack. And the process continues indefinitely.
Autoimmunity is a specific type of immune-system dysfunction, but it’s important to note that not all immune-system dysfunction is autoimmunity.
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Housebound Or Bedbound With Me/cfs
About 25% of people with ME/CFS are housebound or bedbound. Those who are housebound may be able to undertake minimal daily tasks for themselves, such as brushing teeth, cooking or using a computer for short periods of time, but they have to pace their activity and often use aids to help them . They are unable to leave the house, often because this requires more energy than they have available. When they do leave the house, they often need mobility aids such as a wheelchair or mobility scooter, or other assistance . Recovery from a trip out of the house can take days, or longer.
Some people are so severely unwell that they are bedbound some or all of the time. The most severely unwell may be unable to undertake even simple tasks, like eating or going to the toilet by themselves. They may require additional medical devices, such as feeding tubes, to help them get enough nutrition and fluids, and can be totally dependent on carers.
Recruitment And Clinical Evaluation
Power Calculation
We recruited 404 participants comprising 251 with ME/CFS , 46 cases of MS, and 107 healthy controls. Based on our own data on NK cell responses to cytokine stimulation in HCMV-infected healthy adults we estimated that the proposed sample size would provide at least 80% power to detect a 30% difference in NK cell responses between MS and severely affected cases and > 90% power to detect a 20% difference in NK cell response between cases and healthy controls .
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How Does Me/cfs Affect People
ME/CFS affects different people in different ways, some more severely than others. There are four levels of severity of ME/CFS, which give an indication of the level of disability ME/CFS can create:
- mild: 50% reduction in pre-illness activity
- moderate: mostly housebound
- severe: mostly bedridden
- very severe: totally bedridden and need help with basic activities including nutrition and hydration.
The severity of ME/CFS can vary over time. A person living with ME/CFS could be at one level of severity now, then their disease could either improve or deteriorate over time. For some patients, their disease can worsen significantly with no known cause. Other patients have a fluctuating illness where they have better and worse periods, which last for months or years. It is unclear why this happens.
For most people, ME/CFS is a lifelong disease. Full recovery is rare and estimated at less than 10%. For some people with ME/CFS, as time passes and their disease improves, they will find they can do more, but it is a slow and gradual process. However, this is not the case for everyone. Some people find their disease worsens over time, others may remain somewhat stable. With support and pacing, people can often improve their quality of life.
Viral And Other Infections
Post-viral fatigue syndrome or post-viral syndrome describes a type of chronic fatigue syndrome that occurs following a viral infection. A recent review found Epstein-Barr virus antibody activity to be higher in patients with CFS, and that a subset of patients with CFS were likely to have increased EBV activity compared to controls. Viral infection is a significant risk factor for CFS, with one study finding 22% of people with EBV experience fatigue six months later, and 9% having strictly defined CFS. A systematic review found that fatigue severity was the main predictor of prognosis in CFS, and did not identify psychological factors linked to prognosis.
Another review found that risk factors for developing CFS after mononucleosis, dengue fever, or Q-fever included longer bed-rest during the illness, poorer pre-illness physical fitness, attributing symptoms to physical illness, belief that a long recovery time is needed, as well as pre-infection distress and fatigue. The same review found biological factors such as CD4 and CD8 activation and liver inflammation are predictors of sub-acute fatigue but not CFS. However, these findings are not generally accepted due to the use of the Oxford criteria in selecting patients. The CDC does not recognize attribution of symptoms as a risk factor.
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How Is Myalgic Encephalomyelitis/chronic Fatigue Syndrome Treated
There is no cure for ME/CFS. Treatment goals include managing symptoms and returning you to a higher quality of life. Some people arenât able to regain the level of health and function they had before their diagnosis.
First, your doctor works with you to determine which symptoms cause the most difficulty. Together, you will address those symptoms immediately.
Counseling is helpful for many people with ME/CFS. This type of treatment helps people better tolerate symptoms by changing thoughts and behaviors. Your doctor may prescribe medications, like antidepressants or sleep aids, if your symptoms are especially severe. These medications can relieve symptoms like unrestful sleep for some people living with ME/CFS.
Before prescribing sleep aids, however, your doctor may provide suggestions for improving sleep without drugs. For instance, he or she might suggest that you visit a sleep specialist. Other tips include:
- Develop a regular bedtime routineâgo to bed and wake up at the same time each day.
- Do not nap for more than 30 minutes total during the day.
- Use your bed and bedroom only for sleeping and sex. Take out all electronics.
- Avoid eating large meals before you go to bed also avoid alcohol and caffeine.
- Do your exercising at least 4 hours before you go to sleep.
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Chronic Fatigue Syndrome: New Evidence Of Immune Role
Researchers recently investigated the immune systems role in chronic fatigue syndrome in unprecedented depth. The findings might help design future treatments.
Chronic fatigue syndrome , or myalgic encephalomyelitis , is a mysterious condition.
The main symptom of CFS is extreme and often unrelenting fatigue. Others include muscle and joint pain, sleep issues, and flu-like symptoms.
Researchers do not yet know what causes CFS. Suggestions include viral or bacterial infection, changes in the immune system, hormone imbalance, and mental health conditions.
Because of this, they have not yet been able to design a test that can diagnose CFS, and current treatments only relieve symptoms.
Over the years, interest in the role that the immune system might play in CFS has grown.
Often, people with CFS report that their symptoms began following an infection or other insult to the immune system. These reports are common, but once symptoms have appeared, it is impossible to assess how the body was behaving before they arrived.
Researchers from the Institute of Psychiatry, Psychology, and Neuroscience at Kings College London in the United Kingdom used an interesting model to delve deeper.
The researchers investigated people who were taking a treatment for hepatitis C called interferon-alpha. Interferon-alpha works by triggering the immune system in the same way that a significant infection would.
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How Is Cfs Diagnosed
CFS is a very challenging condition to diagnose.
According to the Institute of Medicine, as of 2015, CFS occurs in about 836,000 to 2.5 million Americans. Its estimated, however, that 84 to 91 percent have yet to receive a diagnosis.
There are no medical tests to screen for CFS. Its symptoms are similar to many other conditions. Many people with CFS dont look sick, so doctors may not recognize that they indeed have a health condition.
In order to receive a CFS diagnosis, your doctor will rule out other potential causes and review your medical history with you.
Theyll confirm that you at least have the core symptoms previously mentioned. Theyll also ask about the duration and severity of your unexplained fatigue.
Ruling out other potential causes of your fatigue is a key part of the diagnosis process. Some conditions with symptoms that resemble those of CFS include:
- sleep disorders
The side effects of certain drugs, such as antihistamines and alcohol, can mimic symptoms of CFS as well.
Because of the similarities between symptoms of CFS and many other conditions, its important to not self-diagnose. Talk to your doctor about your symptoms. They can work with you to get relief.
What Are The Symptoms Of Myalgic Encephalomyelitis/chronic Fatigue Syndrome
For many people, the symptoms of ME/CFS resemble other diseases, like influenza. Symptoms may come and go over time and may increase or decrease in severity. ME/CFS symptoms vary widely from person to person.
Many of the symptoms of ME/CFS make daily life difficult. These symptoms include:
- Severe fatigue lasting at least 6 months that does not improve with rest or sleep
- Difficulty sleeping
Less common symptoms of ME/CFS include:
- Problems with vision
- Irritable bowel, an intestinal condition causing painful bloating, gas, constipation and diarrhea
- Psychological issues, including mood swings, irritability and anxiety
- Tingling or numbness in the feet, hands or face
For many people, ME/CFS symptoms get worse following physical exercise or strenuous mental exertion. In some cases, orthostatic intolerance causes dizziness, weakness, and fainting.
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Are Chronic Fatigue Syndrome And Fibromyalgia Autoimmune Diseases
An Autoimmune Disorder of the Neuroendocrine SystemNeuroendocrine SystemEndocrine glands are ductless glands of the endocrine system that secrete their products, hormones, directly into the blood. The major glands of the endocrine system include the pineal gland, pituitary gland, pancreas, ovaries, testes, thyroid gland, parathyroid gland, hypothalamus and adrenal glands. https://en.wikipedia.org wiki Endocrine_gland View complete answer on southernpainclinic.com
The Medical Outcomes Study Short
All participants in both samples completed the SF-36 , a 36-item self-report measure of disability comprised of eight subscales: physical functioning, role physical, bodily pain, general health, role emotional, social functioning, vitality, and mental health. The composite score for each subscale ranges from 0â100 with higher scores indicating better functioning. This measure is frequently used in research to assess disability brought on by illness. Buchwald, Pearlman, Umali, Schmaling and Katon found that for a sample of individuals with CFS, the SF-36 had good internal reliability and convergent validity. It was also able to distinguish individuals with CFS and chronic fatigue from individuals with major depression, acute mononucleosis, and from healthy controls.
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