Diagnosis Of Chronic Fatigue Syndrome
Laboratory evaluation to exclude non-CFS disorders
The diagnosis of CFS is made by the characteristic history combined with a normal physical examination and normal laboratory test results. Any abnormal physical findings or laboratory tests must be evaluated and alternative diagnoses that cause those findings and/or the patient’s symptoms excluded before the diagnosis of CFS can be made. The case definition is often useful but should be considered an epidemiologic and research tool and in some circumstances should not be strictly applied to individual patients.
In February 2015, the Institute of Medicine published an extensive review of this disease called Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. In this review, they proposed a new name, systemic exertion intolerance disease , and new diagnostic criteria that simplified the diagnosis and emphasized the most consistent features. In addition, the review clearly emphasized the validity of this debilitating disease.
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Chronic Fatigue Syndrome , also known as Myalgic Encephalomyelitis , is a debilitating and potentially disabling illnessFootnote 1-7 that affects over half a million Canadians Footnote * .Footnote 8 CFS/ME is not yet fully understood, but it is known to affect multiple systems of the body. Footnote 1-7
What Is The Treatment For Chronic Fatigue Syndrome
There is no known cure for chronic fatigue syndrome, although symptoms can be self-managed with support and advice. When CFS/ME is suspected, you should be given individual advice about managing your symptoms. This advice will include:
- Not to use more energy than you feel you have. Try to manage your daily activity and do not ‘push through’ your symptoms.
- Rest and convalesce as you need to. This might mean making changes to your daily routine, including work, school and other activities.
- Maintain a healthy balanced diet, with adequate fluid intake.
You should be referred to an CFS/ME specialist team to confirm your diagnosis and develop a care and support plan.
Children and young people with suspected CFS/ME should be referred to a paediatrician for further assessment and investigation before referral to a paediatric CFS specialist team to confirm the diagnosis and develop a care and support plan.
You should be referred to a physiotherapist or occupational therapist working in an CFS specialist team if you:
- Have difficulties caused by reduced physical activity or mobility.
- Feel ready to progress your physical activity beyond your current activities of daily living.
- Would like to incorporate a physical activity or exercise programme into managing your CFS/ME.
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Treatment Of Chronic Fatigue Syndrome
Acknowledgment of patient’s symptoms
Sometimes graded exercise, limited to avoid a setback
Drugs for depression, sleep, or pain if indicated
To provide effective care to patients with CFS, physicians must acknowledge and accept the validity of patients’ symptoms. Whatever the underlying cause, these patients are not malingerers but are suffering and strongly desire a return to their previous state of health. For successful management patients need to accept and accommodate their disability, focusing on what they can still do instead of lamenting what they cannot do.
If these measures are ineffective, hypnotic drugs and/or referral to a sleep specialist may be necessary. Patients with pain widespread tenderness of muscles, areas around tendon insertions… read more ) can be treated using a number of drugs such as pregabalin, duloxetine, amitriptyline, or gabapentin. Physical therapy is also often helpful. Treatment for orthostatic hypotension Treatment Orthostatic hypotension is an excessive fall in blood pressure when an upright position is assumed. The consensus definition is a drop of > 20 mm Hg systolic, 10 mm Hg diastolic… read more may also be helpful.
Unproven or disproven treatments, such as antivirals, immunosuppressants, elimination diets, and amalgam extractions, should be avoided.
Etiology Of Chronic Fatigue Syndrome
Etiology of CFS is unknown. No infectious, hormonal, immunologic, or psychiatric cause has been established. Among the many proposed infectious causes, Epstein-Barr virus, Lyme disease, candidiasis, and cytomegalovirus have been proven not to cause CFS. Similarly, there are no allergic markers and no immunosuppression.
Some people who have recovered from COVID-19 infection COVID-19 COVID-19 is an acute, sometimes severe, respiratory illness caused by a novel coronavirus SARS-CoV-2. COVID-19 was first reported in late 2019 in Wuhan, China and has since spread extensively… read more have become “long-haulers” with persistent symptoms. Some of these symptoms result from organ damage from the infection and/or treatment, and others may be from posttraumatic stress disorder Posttraumatic Stress Disorder Posttraumatic stress disorder is recurring, intrusive recollections of an overwhelming traumatic event recollections last > 1 month and begin within 6 months of the event. The pathophysiology… read more . In addition, in some patients COVID-19 seems to trigger typical CFS, but further study is needed to confirm this association and determine causality.
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Who Is At Risk For Chronic Fatigue Syndrome
Because the cause of CFS is not known, its hard to know what might put someone at risk for getting the condition. However, certain factors are seen more often in people with CFS. These factors include:
- Gender. CFS happens up to 4 times more often in women than in men.
- Age. CFS commonly affects middle-aged people, but people of any age can get it.
What Are The Signs & Symptoms Of Chronic Fatigue Syndrome
There’s a long list of possible symptoms that someone with chronic fatigue syndrome can have. The most common ones include:
- severe fatigue, which can make it hard to get out of bed and do normal daily activities
- sleep problems, such as trouble falling or staying asleep, or not having a refreshing sleep
- symptoms getting worse after physical or mental effort
- symptoms or dizziness that get worse after standing up or sitting upright from a lying down position
- problems with concentration and memory
- headaches and stomachaches
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What Can I Do For Myself
There are some things that you can do for yourself to help you manage the condition and still live your own life. Small changes can build and make a difference to your energy and mobility. This is called self-management.
To help with this, you might try:
- Planning your time record what you do so that you can build a picture of what uses more energy and what activities you can ask others to do for you. This will help you choose what is important to you and plan your day to achieve this. It will also show you if there are patterns of symptoms and when they appear during your day
- Rest and relaxation this is very important for managing CFS/ME. You may need some support and advice on what that might mean for you in terms of your physical, mental and emotional activities for resting
- Getting support being open with people and asking for help when you need it before you are exhausted is a key approach to managing your condition. Talking about how you are feeling is important for long term health conditions because of the impact your symptoms have on the way you live your life. While you are adjusting to the diagnosis and the change in your life, it may be helpful to get outside support such as counselling or CBT. Talk to your GP about emotional support available to you.
‘huge Burden On Health System’
Tate says it is now incumbent on the Ministry of Health to fund post-viral illness support and research.
“I’m of course expressing a bias here, but these diseases are going to be a huge burden on the health system, on families, on the community. I think funding should be a given with the same priority as with Alzheimer’s disease. The number of people with Alzheimer’s probably about 50,000 now, only about twice as many as a ME, but there is a huge funding gulf.”
There is greater recognition of this internationally now with the emergence of Long Covid. The National Institutes of Health in the US has allocated $1.15 billion dollars towards Long Covid-19 research as the case numbers continue to rise in the United States and worldwide.
“It’s hoped that the ME/CFS community will be part of and benefit from that research,” Tate says.
A Department of Health spokesperson says it has commissioned a major piece of longitudinal research of people that had contracted Covid-19 in Aotearoa.
“Te Herenga Waka-Victoria University of Wellington has been awarded the contract for this research and is currently in the final stages of preparation, with participant recruitment likely to start soon.”
“We have also issued rehabilitation guidance for acute Covid-19 and are looking to update this to take into account Long Covid. We have completed a comprehensive literature review on the topic and are aiming to engage an expert advisory group to translate this into guidance.”
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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 .
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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Where Can I Get Support
Even in its mildest form, chronic fatigue can have a significant emotional and financial impact on your life. A lack of understanding and awareness about CFS/ME means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers.
People need wider support in order to continue to manage aspects of their life. Information on entitlements to welfare benefits, accessing health and social care and others sources of support for patients and carers are available from Action for M.E.
Action for M.E. has a number of booklets that may be useful for people living with CFS/ME, their families and their health professionals. They also offer resources and services for children and young people affected by chronic fatigue and their families.
What Are The Symptoms Of Chronic Fatigue
Different symptoms may be experienced by individuals with CFS based on their condition and severity. The most prevalent symptom is a severe weariness that interferes with regular activity.
To be diagnosed with CFS, you must have a considerably diminished capacity to do your typical daily activities due to exhaustion for at least six months.
The following syndromes are associated with chronic fatigue:
- You may feel clumsy, lose your memory, have a hard time thinking, or twitching muscles.
- Sleep disruption
- Aches and pains in the muscles, joints, or head
- Dizziness, pallor, or a dip in blood pressure
- Exertion or standing can result in palpitations, an increased heart rate, or shortness of breath.
- Whenever you exert yourself or stand up, you may experience palpitations, heartbeats, or shortness of breath.
- Nausea, bloating, constipation, and diarrhea are examples of gastrointestinal alterations.
- Urinary issues
- Sore throat, swollen lymph nodes, and flu-like symptoms
- Significant weight change
- inability to adjust to temperature changes
The symptoms of a person will change over short periods, even from hour to hour.
CFS symptoms vary with each individual and with the severity of the disorder. The most prevalent symptom is a severe weariness that interferes with regular activity. CFS is diagnosed when you cannot do your usual daily activities due to exhaustion for at least six months. You cant cure CFC by taking bed rest.
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Treatment Plans For Me/cfs
There’s no single way of managing ME/CFS that works for everyone, but there are a number of treatment options.
The National Institute for Health and Care Excellence says you should be offered a treatment plan tailored to your symptoms.
Your doctor should discuss all of the options with you, and explain the benefits and risks of any treatment.
They should work with you to develop a treatment plan that suits you and takes into account your circumstances and preferences.
You may need advice about making lifestyle changes, specialist treatments, or a combination of both.
If your symptoms are severe, your doctor should ask a specialist for advice.
Your treatment plan should be reviewed regularly.
How Is Me/cfs Treated
There is no cure for ME/CFS, but there is still a lot your doctor can do to help you relieve symptoms and improve quality of life.
Any commercially available product or treatment promoted as a cure for ME/CFS should be treated with caution.
Current treatments have 2 key aspects:
- Pacing and rest: pacing is a strategy designed to help people with ME/CFS live within their energy envelope this is the amount of energy they can safely use without triggering PEM. It breaks down activity into short bursts, interspersed with rest, and aims to leave some energy in the tank at the end of the day. For more information about pacing, see the Emerge Australia fact sheet.
- Stepwise symptom management: this involves ranking symptoms and exploring ways to reduce symptoms, starting with the most problematic.
Your doctor may also suggest working with other healthcare professionals such as a psychologist, occupational therapist or a physiotherapist.
You may want to talk to your doctor about how to manage work or school commitments while you are sick and when you feel you might be ready to return.
It may also help if you:
- keep a diary to see whether certain activities or levels of exercise tend to trigger PEM
- relax as much as possible
- try to go to bed at the same time each night and limit daytime napping
- avoid caffeine, alcohol, nicotine and anything else that could affect your sleep
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How Is Cfs Treated
You wont be able to do anything about it by lying in bed all day. Each person has unique symptoms, so they may need multiple types of treatment to manage the disease.
Consult your healthcare providers to determine the best course of treatment for you. They can discuss the therapys potential benefits and drawbacks to cure you.
What Are The Symptoms Of Me/cfs
The most common symptom is ongoing, unexplained overwhelming tiredness or fatigue which worsens after exercise or mental effort. This is known as post-exertional malaise . The level of activity that triggers PEM will vary from person to person and can depend on how severe their condition is. PEM is sometimes delayed and can last for a few days. A more serious relapse can last for weeks or months.
A common misconception is that people with ME/CFS have ‘chronic fatigue and are just very tired. Persistent and profound fatigue is just one symptom of ME/CFS.
Other symptoms may include:
Some people may experience only mild symptoms, but others may develop more severe symptoms.
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Other Lifestyle Changes To Manage Me/cfs
Other ways to manage ME/CFS include:
- equipment â some people may need a blue badge for parking, a wheelchair, a stairlift, or other adaptations for their home
- changes in your place of work or study â when you’re ready and well enough to return to work or studies, your doctor should be able to advise you on changes that could ease your return
There’s limited or no evidence to recommend:
- resting completely â there’s no evidence this helps
- complementary medicine â there is not enough evidence that it’s helpful for ME/CFS
You should not take up vigorous unsupervised exercise such as going to the gym or for a run as this may make your symptoms worse.