Symptoms And Signs Of Chronic Fatigue Syndrome
Before onset of CFS, most patients are highly functioning and successful.
Onset is usually abrupt, often following a psychologically or medically stressful event. Many patients report an initial viral-like illness with swollen lymph nodes, extreme fatigue, fever, and upper respiratory symptoms. The initial syndrome resolves but seems to trigger protracted severe fatigue, which interferes with daily activities and typically worsens with exertion but is alleviated poorly or not at all by rest. Patients often also have disturbances of sleep and cognition, such as memory problems, âfoggy thinking,â hypersomnolence, and a feeling of having had unrefreshing sleep. Important general characteristics are diffuse pains and sleep problems.
The physical examination is normal, with no objective signs of muscle weakness, arthritis, neuropathy, or organomegaly. However, some patients have low-grade fever, nonexudative pharyngitis, and/or palpable or tender lymph nodes.
Because patients typically appear healthy, friends, family, and even health care practitioners sometimes express skepticism about their condition, which can worsen the frustration and/or depression patients often feel about their poorly understood disorder.
Memory And Concentration Problems
Memory aids, like organizers and calendars, can help with memory problems. For people with ME/CFS who have concentration problems, some doctors have prescribed stimulant medications, like those typically used to treat Attention-Deficit / Hyperactivity Disorder . While stimulants might help improve concentration for some patients with ME/CFS, they might lead to the push-and-crash cycle and worsen symptoms. Push-and-crash cycles are when someone with ME/CFS is having a good day and tries to push to do more than they would normally attempt .
Box: What Do We Know About Chronic Fatigue
There isnt scientific definition of fatigue there isnt a physiological, biochemical understanding of what the pathophysiology of fatigue is, states Julia Newton, a consultant physician with an interest in fatigue at Newcastle upon Tyne Hospitals NHS Foundation Trust. It is a symptom that is described by patients, so its a word that can often be used to describe a whole range of different things.
There are quite a few things we need to understand about fatigue, stresses Anna Kuppuswamy, principal research fellow in clinical and movement neurosciences at University College London. We have acute fatigue and chronic fatigue, and they are completely different from each other thats never made clear.
Early fatigue is considered part of sickness behaviour inflammation-induced reduction of performance and activity, and a feeling of tiredness which accompanies it. Its supposed to be an effective mechanism to focus on recovery rather than just doing things. Like pain, fatigue is a message to our body that something is wrong.
But if you think about chronic fatigue, thats where it starts to get very murky its sort of a free for all, it could be anything. In chronic fatigue, the switch to turn this message off is not flicked.
Without a good endpoint, youre never going to get the investment you might need to get a drug to market
Julia Newton, consultant physician with an interest in fatigue, Newcastle upon Tyne Hospitals NHS Foundation Trust
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Nice Has Today Published Its Updated Guideline On The Diagnosis And Management Of Myalgic Encephalomyelitis /chronic Fatigue Syndrome
28 October 2021
It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men.
The guideline covers every aspect of ME/CFS in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review.
Paul Chrisp, director of the Centre for Guidelines at NICE, said:As well as bringing together the best available scientific evidence, weve also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart. NICE hopes that system partners and the ME/CFS community will work together to make sure these important recommendations are implemented.
Peter Barry, Consultant Clinical Advisor for NICE and chair of the guideline committee, said: This guideline will provide clear support for people living with ME/CFS, their families and carers, and for clinicians. It recognises that ME/CFS is a complex, chronic medical condition that can have a significant effect on peopleâs quality of life.
People with ME/CFS should receive individually tailored support focused on personal agreed goals and a range of approaches should be used depending on the patientâs preferences and priorities.
How Is Cfs Diagnosed
- There is no specific diagnostic test for CFS. A diagnosis of CFS first requires that other potential causes of fatigue be ruled out.
- Diagnostic criteria for CFS include chronic, unexplained fatigue for at least six months, which is of new onset, is not the result of ongoing exertion, is not substantially relieved by rest, and hinders occupational, social, or personal activities.
- Two additional symptoms must also be present: unrefreshing sleep and post-exertional malaise .
- Impaired memory or concentration and/or worsening of symptoms on standing up or sitting upright is also necessary for a diagnosis of CFS.
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Mistake #1 You Dont Need To Take Supplements If You Eat A Healthy Diet
Soil depletion and other factors make it impossible to know if diet alone meets our nutrient needs. More importantly, perhaps, Dr. Craig asserts that the demands placed on the body by high levels of oxidative stress plus the immune system alterations and energy depletion found in ME/CFS suggests that supplementation is going to be needed.
The right diet is an important part of Dr. Craigs program, but a good diet is not enough
Finally, with no FDA approved drugs available, Dr. Craig proposes that a smart evidence-based use of supplements may be the best way ME/CFS patients have of improving their symptoms.
The research on the need for supplements in Chronic Fatigue Syndrome is sparse, but what is there suggests supplementation can help.
Several studies have found, for instance, low levels of B-vitamins in ME/CFS patients. A 1999 study found low blood levels of vitamins B-1 and B-6. A 2014 study found that giving ME/CFS patients a multivitamin/multimineral supplement for two months resulted in an increase in antioxidant status as well as significant reductions in fatigue, flu-like symptoms, sleep problems, autonomic nervous system symptoms, and headaches.
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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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 .
Can Complementary Or Alternative Medicine Help Manage The Symptoms Of Me/cfs
Some people say that complementary or alternative medicine has helped their ME/CFS symptoms. Keep in mind that many alternative treatments, dietary supplements, and herbal remedies claim to cure ME/CFS, but some might do more harm than good. Talk to your doctor before trying alternative therapies to be sure theyâre safe.
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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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Symptoms That Healthcare Providers Might Try To Address Are:
Post-exertional malaise
Post-exertional malaise is the worsening of symptoms after even minor physical, mental or emotional exertion. The symptoms typically get worse 12 to 48 hours after the activity and can last for days, weeks, or even longer.
PEM can be addressed by activity management, also called pacing. The goal of pacing is for children with ME/CFS to learn to balance rest and activity to avoid PEM flare-ups caused by exertion that they cannot tolerate. To do this, patients need to find their individual limits for mental and physical activity. Then they need to plan activity and rest to stay within these limits. Some patients and doctors refer to staying within these limits as staying within the energy envelope. The limits may be different for each patient. Keeping activity and symptom diaries may help patients find their personal limits, especially early on in the illness.
Patients with ME/CFS need to avoid push-and-crash cycles through carefully managing activity. Push-and-crash cycles are when someone with ME/CFS is having a good day and tries to push to do more than they would normally attempt . This can then lead to a crash .
Rehabilitation specialists or exercise physiologists who know ME/CFS may help patients with adjusting to life with ME/CFS. Patients who have learned to listen to their bodies might benefit from carefully increasing exercise to improve fitness and avoid deconditioning. However, exercise is not a cure for ME/CFS.
Pain
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Physiological Findings And Physical Therapy
As most physical therapy treatments are ultimately focused on exercise and movement, physical therapists need to review the aerobic and anaerobic respiratory cycles as they relate to ME/CFS patients.
Physical therapists must recognize that research indicates the aerobic metabolism system in those with ME/CFS is broken and according to Dr. Mark Van Ness of the University of the Pacific, Classic exercise training produces little improvement and may result in PEM. He also states, Aerobic conditioning does not appear to improve or repair broken aerobic metabolism.
‘”’Dialogues for ME/CFS” is made possible with a reward from the Wellcome Public Engagement Fund. Click https://www.dialogues-mecfs.co.uk/ for access to additional scientifically-based videos on ME/CFS.”’
Discussing Treatment Options With A Doctor
The medical community differs over the exact treatment courses for those living with CFS. Youll need to work closely with a healthcare team to determine which symptoms are impacting your quality of life the most.
You may start with treatment of these issues and progress to others in time. Many treatment options are available, ranging from over-the-counter drugs to alternative therapies.
The most effective treatment for CFS is the one thats catered to you and your specific symptoms. A doctor may suggest a variety of treatments depending on what youre experiencing and what your treatment goals are.
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Approach A: Treatments With Peripheral Hormones
The use of peripheral hormonesnotably glucocorticoids and other adrenal hormones, growth hormone , insulin-like growth hormone-1 , thyroid hormones, and a combination of these hormoneshave been trialed to improve outcomes in prolonged critical illness as well as in ME/CFS and fibromyalgia with varied successes as described below.
Treatments With Glucocorticoids and Other Adrenal Hormones
In Prolonged Critical Illness
Administration of large daily doses of hydrocortisone in patients during critical illness is quite common, particularly in sepsis or when cortisol levels are deemed low relative to the severity of the illness. The aim is to treat critical illness-related corticosteroid insufficiency which is thought to lead to an exaggerated proinflammatory response with increased tissue injury and organ dysfunction . Some researchers, however, have recently argued that such high doses of hydrocortisone may be counterproductive because they drive the inhibitory feedback loop inherent to endocrine axes, resulting in further central suppression of the axes . Moreover, large hydrocortisone doses heighten catabolic effects , especially if administered for too long .
In ME/CFS
Treatments With GH and IGF-1
In Prolonged Critical Illness
In ME/CFS
Treatments With Thyroid Hormones
In Prolonged Critical Illness
In ME/CFS
Treatments With Peripheral Hormone Combinations
In Prolonged Critical Illness
In ME/CFS
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.
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Addressing Oxidative And Nitrosative Stress
In Prolonged Critical Illness
There have been a few trials to restore oxidative balance during critical illness, often with the aim of improving thyroid hormone function . In one case, researchers found that treating patients of acute myocardial infarction with n-acetyl-cysteine a precursor to the antioxidant glutathione could virtually eliminate the decrease in serum T3 levels and prevent the increase in serum rT3 which are characteristic of NTIS . They propose that supplementation with NAC relieves the competition for GSH between the thyroid hormone deiodinase and antioxidant enzymes, which would otherwise negatively affect thyroid hormone conversion and enable O& NS. Likewise, controlled experiments showed that administration of sodium selenite on human cells reduces cytokine-induced oxidative stress , and supplementation with selenium is associated with modest normalization of thyroid hormones during critical illness . Thus, in-vivo supplementation might similarly relieve competition for selenium required in the production of both thyroid hormone deiodinase and antioxidant enzymes.
In ME/CFS
Finally, akin to critical illness, it has been suggested to incorporate the upregulation of HSP into future treatments for ME/CFS . Studies have shown that ME/CFS is also characterized by impaired HSP production whichcombined with O& NS and low-grade inflammationcould explain muscle dysfunction and exercise intolerance .
Assessment And Treatment Of Me/cfs Patients:
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Naturopathic Treatment For Chronic Fatigue Syndrome And Fibromyalgia
*Last updated February 2021 by Eric Chan
A large proportion of my naturopathic patients present with some form of fatigue and fibromyalgia type pain. In many cases, the fatigue may be a symptom of a coexisting condition. For example, fatigue is one of the many symptoms of diseases such as rheumatoid arthritis, anemia, hypothyroidism, congestive heart failure, and so forth. In fact, fatigue can be a symptom of many disease processes. This is why a conventional workup, including history, examination, and when necessary, laboratory investigation, is necessary to rule out other disease processes that may contribute to fatigue.
In these cases, the fatigue is secondary, and will likely improve when treatment for the primary condition has been successful.
But what about the patient, where fatigue persists and no conventional cause or diagnosis can be found?
The numbers are actually quite staggering, as the CDC states that up to 4 million Americans suffer from the disease that has been labelled chronic fatigue syndrome. When specific types of pain and sensitivity are present, then the diagnosis is chronic fatigue syndrome and fibromyalgia. Diagnosis can be a challenge because there are no consistent lab biomarkers that are specific for CFS that are readily available to test, patients do not look sick, as mentioned above, fatigue is common to many other illnesses, and finally, chronic fatigue syndrome and fibromyalgia can tend to relapse and remit.
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