Diagnostic Criteria For Chronic Fatigue Syndrome

The Chronic Fatigue Syndrome Also Presents Problems In Definition And Measurement Is Associated With Even More Morbidity Than Chronic Fatigue Itself And Is Often

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Diagnostic Criteria For Me/cfs Using The National Academy Of Medicine Clinical Criteria

For a diagnosis of ME/CFS, the person must have the following three symptoms:

Diagnosis also requires at least one of the following two symptoms:

It is important to note that these are not the only symptoms of ME/CFS, just the minimum needed to meet the diagnostic criteria.

While diagnosis requires that a person has had symptoms continually for six months, early intervention with pacing and rest can help reduce symptoms, improve quality of life and reduce the risk of exacerbating the disease. Research suggests that patients who are able to pace their activity and not push themselves tend to do better in the long term. Pacing and rest can start even prior to an official diagnosis.

While there is currently no cure and no evidence-based treatments, it is important to find a doctor who is not only sympathetic to ME/CFS, but can work with you to help manage your symptoms.

Diagnostic Criteria For Chronic Fatigue Syndrome*

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Healthcare Cost Associated To Cfs

It is difficult to estimate the costs imposed by CFS on healthcare. There are few studies evaluating the use of healthcare resources by these patients .

Although many people suffering CFS continue to work despite of their illness for economic reasons and social prestige, this represents an annual global loss of productivity of approximately 6,900 million, or what is the same 15,200 per patient and year. These figures are comparable to the losses caused by other diseases, such as digestive system-related conditions or infectious and parasitic diseases , suggesting that the CFS can be included with other chronic processes among the highest healthcare and socioeconomic burdens.

Find A Chronic Fatigue Syndrome Healthcare Provider

The more you know about chronic fatigue syndrome , the better prepared youll be when trying to find a healthcare provider. Its a difficult process, and you may need to educate a few health-care professionals along the way. Be sure you know the list of symptoms and become familiar with the various ways ME/CFS is treated.

The crux of the problem is that no medical specialty has claimed ME/CFS, so finding a knowledgeable healthcare provider isnt as easy as with most illnesses. Even fibromyalgia, which is considered closely related to CFS, falls under the auspices of rheumatology. Chronic fatigue syndrome is not well understood, and many health-care providers have a hard time recognizing it. Some dont even believe it is an actual condition.

All this means that the burden of finding someone qualified to treat you falls squarely on your shoulders. However, you have a number of resources to use in your search.

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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
• Flu-like symptoms, including swollen lymph nodes , headaches, and joint pain
• Cognitive difficulties, including attention and memory problems

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.

Guidelines For Diagnosing Me/cfs

Guidelines from the National Institute for Health and Care Excellence say doctors should consider diagnosing ME/CFS if a patient has extreme tiredness that cannot be explained by other causes and the tiredness:

• started recently, has lasted a long time, or keeps coming back
• means you cannot do the things you used to do
• gets worse after activity or gentle exercise, such as a short walk

You must also have some of these symptoms:

• problems sleeping, such as insomnia
• muscle or joint pain
• fast or irregular heartbeats
• doing exercise or concentrating makes your symptoms worse

The GP should consult a specialist if they’re unsure about the diagnosis or if you have severe symptoms.

If a child or young person under 18 has symptoms of possible ME/CFS, they may be referred to a paediatrician.

As the symptoms of ME/CFS are similar to those of many common illnesses that usually get better on their own, a diagnosis of ME/CFS may be considered if you do not get better as quickly as expected.

The diagnosis should be confirmed by a doctor after other conditions have been ruled out, and if your symptoms have lasted at least 3 months.

Page last reviewed: 29 October 2021 Next review due: 29 October 2024

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Understanding History Of Case Definitions And Criteria

For healthcare providers, diagnosing ME/CFS can be complicated by a number of factors:

These factors have contributed to a low diagnosis rate and continued stigma and suffering caused by this illness.

What Is Myalgic Encephalomyelitis/chronic Fatigue Syndrome

Myalgic encephalomyelitis/chronic fatigue syndrome is a complex and disabling disease. It has been classified as a neurological disorder by the World Health Organization, though it affects many parts of the body, including the brain and muscles, digestive, immune and cardiac systems.

The term myalgic encephalomyelitis means pain in the muscles, and inflammation in the brain and spinal cord. Scientists are starting to understand some of the biological changes in the bodies of people with ME/CFS, although they have not yet found how to prevent, or cure it.

Research has found that ME/CFS is associated with problems involving:

• The bodys ability to produce energy at a cellular level
• Immune, neurological and hormonal systems
• Blood pressure and heart rate regulation
• Cognition how quickly information is processed

ME/CFS affects men, women and children of all ages, ethnicities, and socioeconomic backgrounds. 75-80% of people with the disease are female. It is estimated that up to 600,000 Victorians may be living with ME/CFS, and as many as 90% are undiagnosed.

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How Is Chronic Fatigue Syndrome Diagnosed Unfortunately The Only Way To Diagnose Cfs Is To Rule Out All Other Possible Causes Of Your Fatigue

Fatigue is one of the most poorly managed and confusing conditions in all of medicine. And part of the reason why is that no one has decided what fatigue really is.

For example, your doctor may have diagnosed you with:

• chronic fatigue syndrome ,
• systemic exertional intolerance disorder

Even the names for your fatigue are confusing!

Generally Accepted Criteria For Diagnosis

• Canadian consensus criteria . A diagnosis of moderate and severe forms of ME/CFS are accurately made using these criteria. Adults can be diagnosed at 6 months while pediatric cases are diagnosed at three months.
• International consensus criteria . These criteria will accurately diagnose myalgic encephalomyelitis . There is no requirement that the individual have symptoms for a specified period of time for diagnosis, as opposed to CCC, Fukuda, and SEID, which all require 6 months in adults.
• CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome 2017 diagnostic criteria – originally known as the Systemic exertion intolerance disease criteria ME/CFS is accurately diagnosed when the core symptoms are met. The Institute of Medicine report as a whole is a comprehensive review of the medical literature available at time of publication . Adults can be diagnosed at 6 months while pediatric cases are diagnosed at three months.

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Children Young People And Me/cfs

ME/CFS can affect people of all ages, including the very young. Young people with ME/CFS, especially children under the age of ten, might have trouble knowing or articulating that something is wrong. They may not realise that their loss of stamina, or other symptoms they are experiencing, are not normal. Alternatively, they may not have the words to describe what they are feeling.

For both younger children and teenagers, schooling can be affected but ME/CFS is not school refusal. While school refusal can often be accompanied by physical complaints , and these complaints may tend to disappear when the young person stays home, the pattern is different with ME/CFS. In a young person with ME/CFS, some symptoms never ease and symptom exacerbation is triggered by activity. In ME/CFS, symptoms are likely to be worse after school attendance, and can reduce with pacing and rest, which includes time away from school or during holidays.

Some young people with ME/CFS can continue to attend school, and others may be too unwell for regular classroom attendance. Parents, healthcare providers, schools and the child or teenager need to work together to come up with a plan for the young persons continued education. This plan needs to take into account the energy limits of ME/CFS. Being creative and flexible is key and might include things like fewer subjects or school from home.

Prevalence And Clinical Features

It is difficult to establish the prevalence of CFS, since it depends on the diagnostic criteria used and the study population. Initial research suggested a prevalence between 0.002% and 0.04%. . However, latest epidemiological studies in the USA and in the United Kingdom show prevalence rates ranging from 0.007% to 2.5% of the general population. These rates increase up to 0.5-2.5% when the population assessed includes individuals seen in primary care facilities instead of the global population. In the United Kingdom, according the Oxford criteria , the prevalence in the global population has been estimated in 0.6%. In Japan the prevalence has been found to be 1.5% in the general population. Thus, the prevalence in the general population appears to be much higher than previously indicated. Even with strict criteria for CFS, it is estimated that approximately 1% of the adult population experiences this condition. Interestingly, a large part of this group remains unrecognized by the general practitioner. A striking similarity in lifestyle pattern between SF, CF and CFS calls for further research.

CFS mainly affects young adults from 20 to 40 years, although the symptoms also exist in childhood, adolescence and in the elderly . It has a 2-3 times higher prevalence in women than in men. No evidence exists showing that any socio-economic group is more affected than others .

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Clinical Descriptions Of Chronic Fatigue Syndrome

Clinical descriptions of chronic fatigue syndrome vary. Different groups have produced sets of diagnostic criteria that share many similarities. The biggest differences between criteria are whether post-exertional malaise is required, and the number of symptoms needed. Aspects of the condition are controversial, with disagreements over etiology, pathophysiology, treatment and naming between medical practitioners, researchers, patients and advocacy groups. Furthermore, diagnosing CFS can be difficult due to several factors, including lack of a standard test and non-specific symptoms. Subgroup analysis suggests that, depending on the applied definition, CFS may represent a variety of conditions rather than a single disease entity.

Cdc Criteria For Diagnosing Cfs

The current criteria for CFS is as follows:

Clinically evaluated, unexplained, persistent, or relapsing fatigue that is:

• Of new or definite onset
• Not a result of ongoing exertion
• Not alleviated by rest
• Results in a substantial reduction in previous levels of occupational, social, or personal activity

Four or more of the following symptoms that persist or recur during 6 or more consecutive months of illness & that do not predate the fatigue:

• Self-reported impairment of short-term memory or concentration
• Multi-joint pain without swelling or redness
• Headaches of a new type, pattern, or severity
• Unrefreshing and/or interrupted sleep
• Post-exertion malaise lasting more than 24 hours.

Exclusion Criteria:

• Active, unresolved or suspected disease that is likely to cause fatigue
• Psychotic, melancholic, or bipolar depression
• Psychotic disorders
• Alcohol or other substance misuse

Additional symptoms that are not listed with the official diagnostic CDC criteria:

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How Is Cfs Diagnosed

Before 2015, CFS was diagnosed by ruling out other health issues. Even now doctors will generally diagnose CFS only after your lab tests for other diseases/illnesses come back within the normal ranges.

In 2015, the Institute of Medicine redefined the the way CFS is diagnosed. At the same time, they re-named the disease. Today, CFS is known as systemic exertion intolerance disease . Not surprisingly, the name change has not caught on.

Along with changing the name, the Institute of Medicine also made it more difficult to be diagnosed.

The difference between CFS & SEID

The major differences between CFS and SEID are as follows:

• There needs to be a specific point in time where your fatigue began. It cannot have happened your whole life.
• Your fatigue cannot be associated with any exercise or fitness program.
• Your fatigue cannot be alleviated with rest.
• Unrefreshing sleep now needs to be associated with the fatigue.
• You need to experience either a decline in your cognitive abilities or intolerance to standing upright.

These new questions force doctors to run more tests on their patients to rule out other possible causes of fatigue. This makes a diagnosis of CFS more difficult. It also encourages doctors to investigate all possible causes of fatigue before diagnosing CFS. I believe this to be a very important development in the treatment and management of the illness.

First, I will ask you a series of questions based on the method of diagnosis from before 2015.

Caring For Someone With Me/cfs

Having a supportive community of family, friends, school, work, employers and health workers, who understand the potential seriousness of ME/CFS, can also help improve the quality of life of people living with ME/CFS.

Everyone involved in supporting someone with ME/CFS needs to understand Post Exertional Malaise, which is an abnormal, biological response to exercise or activity. This means the patient will not be able to do all of the activities they used to be able to do, and will benefit from practical and emotional support. People with ME/CFS will each have different needs and preferences, so it is important to talk with them about how best to provide support. This may include help with daily routines, family life, accessing healthcare and other personal priorities.

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