Get Specialist Care When You Need It
Visit your doctor every few months to help track your symptoms and check for any need to change your treatment.
Get specialized care if you need it. For example:
- A rehabilitation specialist can help you treat pain and improve your ability to do your daily tasks.
- A pain management specialist can offer a number of pain treatments.
- There are some specialists who work with experimental treatments such as antiviral medicines.
Alteration In Hpa Axis
In light of genetic analysis, a study identified that a genetic variation in POMC and NR3C1 might contribute to the pathophysiology of subgroups of patients with ME/CFS . This finding is consistent with other reports of the association between the disease, and polymorphisms in NR3C1 . NR3C1 is a glucocorticoid receptor gene that is influential in regulating the HPA axis function and blood glucocorticoid levels that have been highly related to the neuroendocrine pathophysiology of the disease .
How Is Chronic Fatigue Syndrome Diagnosed
CFS diagnosis depends on two criteria:
A specific treatment for CFS has yet to be proven effective. Vitamin supplements and medicines have some benefit. Many treatments just relieve the symptoms of CFS.
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What Complications Are Associated With Myalgic Encephalomyelitis/chronic Fatigue Syndrome
For some people, the fatigue associated with ME/CFS makes activities of daily living very difficult or even impossible. Research shows that only half of all people diagnosed with ME/CFS work full-time or part-time jobs.
ME/CFS causes significant depression in many people living with the condition. If you experience depression, talk with your doctor â effective treatments are available.
Alternative And Complementary Medicine
Many alternative and complementary therapies have been promoted for ME/CFS. It is difficult to determine whether these therapies actually work, because the symptoms of ME/CFS vary so much from day-to-day. Anecdotal evidence suggests that acupuncture, massage, pilates, and yoga can help pain in some adults, but no published studies have assessed their benefit in young people.
The clinician should identify the use of herbal/natural remedies or supplements. The contents of complementary medicines are not regulated for dose or composition. Caution must be exercised regarding side effects because if used with prescribed medications, there can be interactions.
Unfortunately, in the hope of a cure, parents of young patients with ME/CFS often ask the young patient to try costly, non-established and speculative treatments but find little or no clinical improvement. Feedback from young people with ME/CFS indicated that 80% had tried up to 30 different alternative therapies. Only massage for pain relief and good dietary advice achieved some benefit in up to 30% of patients. A common comment from the patients was that they were glad when their parents stopped shopping around for a cure. . A review of alternative medicine studies in adults with ME/CFS revealed generally poor methodologies and limited evidence of any benefit .
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Cortisol Treatments For Patients With Cfs
Since the identification of endocrinological alterations in patients with ME/CFS, treatments with corticosteroids were assessed, most of them with positive effects in the symptomatology of the patients. Some studies that managed patients with ME/CFS with low doses of hydrocortisone showed favorable results in the reduction of symptoms, especially regarding a reduction in the fatigue levels in the short term .
Myalgic Encephalomyelitis/chronic Fatigue Syndrome: Essentials Of Diagnosis And Management
- Alison C. BestedAffiliations
- Lily ChuCorrespondenceCorrespondence: Address to Lily Chu, MD, MSHS, Independent Consultant, 16 Lorton Ave, Unit 4, Burlingame, CA 94010.
- Nancy G. KlimasAffiliationsInstitute for Neuro Immune Medicine, Dr Kiran C. Patel College of Osteopathic Medicine, Nova Southeastern University, Fort Lauderdale, FL
- Jose G. MontoyaAffiliationsDr Jack S. Remington Laboratory for Specialty Diagnostics, Palo Alto Medical Foundation Research Institute, Palo Alto, CA
- Irma R. ReyAffiliationsInstitute for Neuro Immune Medicine, Dr Kiran C. Patel College of Osteopathic Medicine, Nova Southeastern University, Fort Lauderdale, FL
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Differential Diagnosis Exclusionary Medical Conditions
Myalgic encephalomyelitis/chronic fatigue syndrome should not be diagnosed if the patient has an identifiable medical or primary psychiatric condition that could plausibly account for the presenting symptoms. If ME/CFS symptoms persist after adequate treatment of other confounding illnesses, a diagnosis of ME/CFS can be considered.
Fatigue is an early symptom in many medical conditions and can be present before the appearance of the diagnostic features of the underlying illness. Careful follow-up over time is needed in order to identify illnesses that might mimic ME/CFS in their early stages. The presence of post-exertional malaise and exacerbation of symptoms after increased cognitive or physical effort increases the likelihood that ME/CFS is the correct diagnosis. The more common conditions in the differential diagnosis are shown in Table 3. For a more comprehensive list of the less common disorders in the differential diagnosis, see Appendix B. If there is diagnostic uncertainty and referral is necessary, it should be preferably to a specialist familiar with ME/CFS.
Table 3. Common conditions in the differential diagnosis of ME/CFS.
A Criteria For Inclusion/exclusion Of Studies In The Review
The criteria for inclusion and exclusion of studies will be based on the Key Questions and are described in the previous PICOTS section.
Below are additional details on the scope of this project:
Study Designs: For all KQs we will include randomized controlled trials . For KQ 1a we will also include derivation, validation, and cohort studies. For KQ 1c and 2b we will also include cohort studies with comparators. For all KQs we will exclude uncontrolled observational studies, case control studies, case series, and case reports. Systematic reviews will be used as sources of evidence if they address a Key Question and are assessed as being at low risk of bias, according to the AMSTAR quality assessment tool.14,15 If systematic reviews are included, we will update findings by adding primary studies identified in our searches. If multiple systematic reviews are relevant and low risk of bias, we will focus on the findings from the most recent reviews and evaluate areas of consistency across the reviews.16
Non-English Language Studies: We will restrict to English language articles, but will review English language abstracts of non-English language articles to identify studies that would otherwise meet inclusion criteria, in order to assess for the likelihood of language bias.
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What Is Myalgic Encephalomyelitis/chronic Fatigue Syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome is persistent and crippling fatigue lasting 6 months or longer. People living with ME/CFS often experience other symptoms, like unrefreshing sleep and muscle aches. The condition is also sometimes called chronic fatigue syndrome.
Doctors do not know what causes ME/CFS, and there is no cure. You may be able to manage symptoms with cognitive-behavioral therapy, exercise, and medications, like antidepressants and sleep aids. The goal of treatment is to make symptoms as manageable as possible to increase your quality of life.
Information For Healthcare Providers
Myalgic encephalomyelitis/chronic fatigue syndrome is a complex, chronic, debilitating disease with systemic effects. ME/CFS is characterized by reduced ability to perform pre-illness activities that lasts for more than 6 months and is accompanied by profound fatigue, which is not improved by rest. A hallmark of ME/CFS is that symptoms can worsen after physical, mental, or emotional effort, a manifestation known as post-exertional malaise . Patients with ME/CFS also have unrefreshing sleep. Other common manifestations are orthostatic intolerance, cognitive impairment, and pain. As can be observed in people with other long-term chronic illnesses, secondary psychological symptoms such as depression and anxiety may also be present in some patients with ME/CFS.
ME/CFS educational resources to help healthcare providers with patient care, including assessment, managing ME/CFS symptoms and providing other supportive strategies to improve patients quality of life.
CDC has partnered with Medscape to offer four continuing medical education activities for healthcare providers. All courses can be accessed by either a desktop computer or a mobile device.
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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.
Forms Of Oi In Me/cfs
Orthostatic hypotension is defined by a sustained BP reduction of at least 20 mm Hg systolic or 10 mm Hg diastolic during the first 3 min after assuming an upright posture . This problem is rarely seen in children except at times of febrile illness, acute dehydration, hemorrhage, adrenal insufficiency, excessive histamine release, or as a response to certain medications.
A more common pediatric variant, termed initial orthostatic hypotension , is characterized by a transient drop in BP immediately after standing, but resolving within 60 s. Its recognition requires a continuous beat-to-beat BP measurement device. The diagnosis is missed by standard, automated sphygmomanometer measurements . Although this is not usually a condition that requires clinical treatment, chronic orthostatic symptoms in those with IOH have been reported , suggesting that they can develop other orthostatic abnormalities on more prolonged monitoring.
Postural Tachycardia Syndrome
Postural tachycardia syndrome is increasingly being recognized as the most common form of OI in pediatric ME/CFS. As is the case for pediatric ME/CFS, postural tachycardia syndrome is more common in females than males, is more common after the onset of puberty, and often follows an apparent infectious illness .
Neurally Mediated Hypotension
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Myalgic Encephalomyelitis/chronic Fatigue Syndrome Diagnosis And Management In Young People: A Primer
- 1Division of General Pediatrics and Adolescent Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, United States
- 2Independent Researcher, Palm Coast, FL, United States
- 3Pharmacology and Physiology, New Jersey Medical School, Newark, NJ, United States
- 4Yale Child Study Center, Harvard Medical School, University of Connecticut School of Medicine, Newton Highlands, MA, United States
- 5Division of Pediatric Gastroenterology, Hepatology and Nutrition, New York Medical College, Valhalla, NY, United States
- 6Drexel University College of Medicine, Philadelphia, PA, United States
- 7Paediatrician, Durham, United Kingdom
- 8Division of Pediatric Cardiology, New York Medical College, Valhalla, NY, United States
- 9Primary Care/Chronic Fatigue Syndrome Clinic, Howick Health and Medical, Auckland, New Zealand
- 10Department of General Medicine, Royal Childrens Hospital, Murdoch Childrens Research Institute, Melbourne, VIC, Australia
Home Remedies And Lifestyle Changes
Making some lifestyle changes may help reduce your symptoms.
Limiting or eliminating your caffeine intake can help you sleep better and ease your insomnia. You should limit or avoid nicotine and alcohol too.
Try to avoid napping during the day if its hurting your ability to sleep at night.
Create a sleep routine. Go to bed at the same time every night and aim to wake up around the same time every day.
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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Myalgic encephalomyelitis / chronic fatigue syndrome is a long-term illness that affects many body systems. People with this illness are not able to do their usual activities. Sometimes, they may be confined to bed. The condition can also be called systemic exertional intolerance disease .
One common symptom is severe fatigue. It does not get better with rest and is not directly caused by other medical problems. Other symptoms can include problems with thinking and concentrating, pain, and dizziness.
Cells From Patients With Fatigue Show Significantly Lower Nad+/nadh Ratio Levels
Oxaloacetate increases the NAD+/NADH ratio in animal models which would push this ratio in ME/CFS patients towards normalization. When oxaloacetate enters the cell, it can react to the metabolite malate in the cytoplasm via the action of the ubiquitous enzyme malate dehydrogenase. As part of this reaction, NADH is turned into NAD+, boosting the NAD+/NADH ratio. Krebs measured the change in the NAD+/NADH ratio with supplemental oxaloacetate as a 900% increase within 2 min .
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Impact Of Me/cfs Symptoms On Learning
Several prominent ME/CFS symptoms affect the students ability to learn. Cognitive problems are evident in most students even if they are less severely affected. Students experience mental confusion, forgetfulness, difficulty concentrating, a short attention span and a slowing of mental processing speed. Working memory can be significantly reduced and there is often increased distractibility, which can be exacerbated by noise in the classroom . IQ scores might be lower than the scores of healthy peers . Cognitive problems can sometimes mimic attention deficit disorder without hyperactivity. For those with more severe illness, cognitive problems are very limiting. Generally, if students are homebound, the most that they can manage are one or two essential or core subjects. Although not easy and requiring a real commitment, completing school work can give the student a real sense of achievement, which is important. The homebound student usually needs regular help from someone such as a Visiting/Homebound Teacher.
Students with ME/CFS are often unable to handle simple math calculations. They might be able to complete the steps to solve a complex problem correctly, but can make simple addition, subtraction, or multiplication mistakes. Teachers should be aware of this problem when grading tests .
Support And Coping Skills
The young person with ME/CFS needs to learn to adapt to the reality of the illness, and integrate it into a meaningful life despite sometimes severe physical limitations. Above all, the young patient needs to develop a sense of achievement in her/his life, however, small.
All aspects of the young persons life might need to be addressed. She/he might need to deal not only with physical and cognitive limitations, but also with misunderstanding of the illness, fear, grief, anger, guilt and isolation. Sometimes having ME/CFS can result in abnormal illness behavior, such as denial of the reality of the illness.
A patients needs early in the illness might differ from her/his needs in later years, as health improvement is being achieved. Young patients should be encouraged to verbalize their fears and needs. Only the young person her/himself knows how she/he really feels. For instance, many young people fear getting behind their peers academically, never being able to catch up, and consequently losing friends. There should be opportunity to talk things through with a trusted professional who understands the illness. Although the parents can be present, the discussion should be primarily with the patient, so that she/he is also involved in decision making and feels part of the team approach. Teenagers usually need an opportunity for discussion without a parent present.
Our experience suggests that the following elements of basic supportive therapy can be helpful:
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Coenzyme Q10 Plus Nadh And Mitochondrial Dysfunction
Coenzyme Q10 and NADH are common antioxidant supplements that have been used for several decades as dietary supplements for general maintenanceof health. The benefits of their administration have been extensively evaluated in several conditions . However, several studies have shown that there is a mitochondrial dysfunction, which reduces the ATP production, as an immediate effect primary or secondary to symptoms in most CFS/ME patients .
In the UK, Myhill et al. highlighted the power and usefulness of the ATP profile test as a diagnostic tool for differentiating between patients who have CFS/ME and other symptoms as a result of energy wastage due to stress and psychological factors and those who have insufficient energy due to cellular respiration dysfunction. The biochemical tests should be performed in CFS/ME patients before and after appropriate interventions, and possibly in other disabling fatigue conditions as well .
Relatively few pharmacological or other therapies for CFS/ME have been tested in large RCTs. Overall, a report commissioned by the AHRQ based on a systematic review for a US NIH Pathways to Prevention Workshop concluded that no available pharmacotherapy is of proven benefit in CFS/ME. Table 1 summarizes the current drug therapeutic strategies for CFS/ME.
A Life Altering Disease
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a complex multi-system disease with many symptoms that may change over time and differ from patient to patient. The most common symptoms of ME/CFS are post-exertional malaise , unrefreshing sleep, profound fatigue, cognitive impairment, orthostatic intolerance, and pain.The cause of ME/CFS is currently unknown, but a combination of genetic and environmental factors appear to be relevant. There are no specific diagnostic tests or FDA approved treatments available.
ME/CFS is a multi-system disease
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Treat The Worst First
Start by listing your worst symptomsthe ones that make it hardest to get through the day. With your doctor, focus first on treating those symptoms. Decide whether a specialist might be helpful for any of them.
The most common ME/CFS symptoms can also be the most treatable.
Symptoms worse after activity
Learning how to manage your activity can help you be as active as possible without causing your symptoms to get worse. This includes:
- Estimating how much energy you have on a given day. This is sometimes called your “energy envelope.” You spend only that much energy, and not more.
- Estimating how much energy an activity takes and how long you can do that activity. You stop when you reach that time, and then take a break.
- Not pushing yourself to get more done on days you feel well.
- Adapting activities to make them easier. One example is sitting down while doing the dishes.
Good sleep habits can help improve the quality of your sleep. If you also try medicine for sleep, it’s best to start on a low dose. Certain antidepressants help with sleep, mood, and chronic pain, so your doctor may suggest trying one.
Feeling dizzy or weak while sitting or standing
Your doctor may have you wear pressure stockings, put your legs up while sitting, or increase your salt intake. Your doctor may also suggest medicines like fludrocortisone or midodrine.
Depression, anxiety, and distress