Myalgic Encephalitis Chronic Fatigue Syndrome

A Hypothetical Association Between Ebv And Me/cfs

As mentioned above, EBV infection has been identified as a risk factor in a subgroup of ME/CFS patients . There are studies showing a statistically significant elevation of anti-EBV-dUTPase antibodies , a defective EBV-specific B and T cell response , a high rate of active EBV infection , serologic evidence of EBV reactivation with elevated IgM antibodies against late VCA antigen , and a positive up-regulation of EBV-induced gene 2 mRNA in peripheral blood mononuclear cells from a subgroup of patients with ME/CFS. However, serological observations related to EBV were not always confirmed and, accordingly, the association between EBV infection and ME/CFS is not established . Furthermore, the presence of an active EBV infection in a subgroup of ME/CFS patients has been actively debated, because most studies revealed no increase in EBV viral load in ME/CFS patients. If a third state of virus, defined as abortive/lytic/leaky replication could explain the presence of certain EBV proteins with the potential capacity to contribute to the symptomatology of ME/CFS , is an hypothesis that remains unconfirmed.

Hpa Axis And Hormonal Imbalance

When suffering from ME/CFS, patients can experience dysregulation in the levels of hormones produced by the HPA axis . Indeed, despite the heterogeneity of symptoms affecting CFS patients, and the evidence of multifactorial pathogenesis, a hormonal imbalance has been demonstrated to have a direct link with some of the symptoms present in CFS, such as debilitating fatigue, difficulty with concentration, and disturbed sleep . In this respect, meta-analysis evidence supports the presence of hypocortisolism in CFS patients. Cortisol levels are fundamental to maintaining hormone homeostasis, and when altered they may cause metabolic, inflammatory, and memory alterations, although it is not sure if inflammation is a cause or consequence of a hormonal imbalance. Moreover, a loss of morning peak ACTH and decreased responsiveness to pharmacological challenge are also reported in CFS cases compared to controls . Several symptoms of CFS resemble those of hypothyroidism caused by lower thyroid hormone activity that may be due to underlying chronic inflammation. A case-control study demonstrated that chronic fatigue syndrome patients exhibited lower FreeT3 , TT3 , decreased peripheral conversion of T4 to T3, normal/high-normal TT4 level, and lower protein binding of thyroid hormones .

What Causes Chronic Fatigue Syndrome

The cause of chronic fatigue syndrome is not known. There are various theories but none has been proved. A popular theory is that a viral infection may trigger the condition. It is well known that tiredness is a symptom that can persist for a short time following certain viral infections. For example, infection with the glandular fever virus or the influenza virus can cause fatigue for several weeks after other symptoms have gone. However, most people recover within a few weeks from the tiredness that follows known viral infections.

Even if a viral infection is a trigger of CFS, it is not clear why symptoms persist when there is no evidence of persisting infection. Also, the symptoms of many people with CFS do not start with a viral infection.

Factors that are thought to contribute to some people developing CFS include:

• Inherited genetic susceptibility .
• Exhaustion and mental stress.
• A traumatic event such as bereavement, divorce or redundancy.

It is hoped that research will clarify the cause of CFS in the future.

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Depression Stress And Anxiety

Adjusting to a chronic, debilitating illness sometimes leads to other problems, including depression, stress, and anxiety. Many patients with ME/CFS develop depression during their illness. When present, depression or anxiety should be treated. Although treating depression or anxiety can be helpful, it is not a cure for ME/CFS.

Some people with ME/CFS might benefit from antidepressants and anti-anxiety medications. However, doctors should use caution in prescribing these medications. Some drugs used to treat depression have other effects that might worsen other ME/CFS symptoms and cause side effects. When healthcare providers are concerned about patients psychological condition, they may recommend seeing a mental health professional.

Some people with ME/CFS might benefit from trying techniques like deep breathing and muscle relaxation, massage, and movement therapies . These can reduce stress and anxiety, and promote a sense of well-being.

Training For Health And Social Care Professionals

1.16.1.

Health and social care providers should ensure that all staff delivering care to people with ME/CFS receive training relevant to their role so they can provide care in line with this guideline. Training should include:

• helping them to understand what ME/CFS is and its diagnosis and management
• the experiences of people with ME/CFS.

Other supporting evidence and discussion can be found in evidence review A: information, education and support for people with ME/CFS and their families and carers and appendix 2: involving adults with severe ME/CFS.

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What Is The Outlook

The long-term outlook for chronic fatigue syndrome varies from person to person. Although some people recover or have a long period of remission, many will need to adapt to living with /CFS. The outlook is better in children and young people than in adults.

Chronic fatigue syndrome affects everyone differently and its impact varies widely. For some people symptoms still allow them to carry out some activities, whereas for others they cause severe impacts on different aspects of the lives of people with CFS and their families and carers, including activities of daily living, family life, social life, emotional well-being, work and education.

Box 5cognitive Behavioural Therapy

The committee wanted to highlight that cognitive behavioural therapy has sometimes been assumed to be a cure for ME/CFS. However, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the .

Full details of the evidence and the committees discussion are in evidence review G: non-pharmacological management of ME/CFS and appendix 2: involving adults with severe ME/CFS.

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What Is Chronic Fatigue Syndrome

Chronic fatigue syndrome , also referred to as myalgic encephalomyelitis , is a condition that causes marked long-term tiredness and other symptoms which are not caused by any other known medical condition.

• CFS stands for chronic fatigue syndrome. Chronic means persistent or long-term.
• MEstands formyalgic encephalomyelitis. Myalgic means muscle aches or pains. Encephalomyelitis means inflammation of the brain and spinal cord.

What Are The Symptoms Of Me/cfs

ME/CFS symptoms, which can often be made worse by standing upright, include:

• Post-exertional malaise , the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks
• Persistent fatigue for six months or more
• Non-restorative sleep/sleep disturbance
• Sensitivity to light, sound, odors, chemicals, foods, and medications

If you think you may have ME/CFS, take our quick online quiz.

Because these symptoms are shared with many other illnesses and because many of these conditions lack a diagnostic test or biomarker identifying which illnesses are present can be difficult. Some patients receive diagnoses for multiple conditions. Common conditions that occur along with ME/CFS include the following:

• Multiple chemical sensitivity disorder

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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.

Dysbiosis And Intestinal Permeability

Several papers have pointed out an alteration in the gut microbiome composition in CFS patients, and involvement of dysbiosis in disease pathogenesis has been hypothesized . In particular, a decrease in microbial diversity and a drop in Firmicutes number was found in CFS patients compared to controls . Moreover, other studies confirmed a reduction in Bacteroidetes/Firmicutes ratio and an increase in Enterobacteriaceae, thus providing evidence of a complete reorganization in intestinal microbiome composition and function . The use of microbiota alteration as a diagnostic biomarker has also been suggested, but disease overlap with other intestinal disorders may represent a disturbing factor during diagnosis and patient stratification . Although the gut microbiome is crucial in different disorders, the role of dysbiosis in CFS pathogenesis remains to be fully addressed, and its role in this disease is still up to debate . After 18S RNA sequencing in the stool of 49 ME/CFS patients and 39 healthy individuals, Mandrano et al. reported a nonsignificant difference in eukaryotic diversity . Therefore, more studies are needed to fully understand gut microbiome involvement in disease pathogenesis and progression.

Altogether, these data point out that intestinal microbiome involvement in disease pathogenesis and progression should be further analyzed, and that promising novel therapeutic tools targeting leaky gut and dysbiosis could potentially arise for CFS patients.

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Genetic Predisposition To Ebv Infection

The diversity of human leukocyte antigen molecules results from selective pressure during co-evolution with pathogens . A characteristic of HLA diversity is the long-term persistence of allelic lineages, which causes trans-species polymorphisms to be shared among closely related species . In humans, there are 13 allelic lineages of DRB1 and, according to the phylogenetic relationship between the different DRB genes of primates described by Bontrop et al, the DRB1*04, *03 and *02 lineages are the oldest, with the DRB1*04 lineage being the most ancestral . Since EBV is the only human-adapted member of the genus Lymphocryptovirus, transferred to a hominid ancestor , it could be hypothesized that immune evasion mechanisms of the EBV have more effectively evolved among older allelic lineages of DRB1. Such an hypothesis could help explaining why individuals with haplotypes DR2-DQ6, DR3-DQ2 or DR4-DQ8 are less resistant to EBV infection and are at greater risk of developing EBV-related disorders .

Severity Of Chronic Fatigue Syndrome Symptoms

Symptoms vary widely in severity and people may have some symptoms more severely than others. However, the following definitions are provided by NICE to provide a guide to the level of impact of symptoms on everyday functioning:

Features of mild chronic fatigue syndromeThese include:

• You are able to care for yourself and do some light domestic tasks but may have difficulties with mobility.
• You are usually still able to work or attend education, but to do this you have probably stopped all leisure and social pursuits.
• You often have reduced hours, take days off and use the weekend to cope with the rest of the week.

Features of moderate chronic fatigue syndromeThese include:

• You have reduced mobility and are restricted in all activities of daily living.
• However you may have peaks and troughs in your level of symptoms and ability to do activities.
• You have usually stopped work or education, and need rest periods, often resting in the afternoon for one or two hours.
• Your sleep at night is generally of poor quality and disturbed.

Features of severe chronic fatigue syndromeThese include:

Features of very severe chronic fatigue syndromeThese include:

• You are in bed all day and dependent on care.
• You need help with personal hygiene and eating, and are very sensitive to sensory stimuli.
• Some people with very severe CSF/ME may not be able to swallow and may need to be tube fed.

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Principles Of Care For People With Me/cfs

Awareness of ME/CFS and its impact

1.1.1.

Be aware that ME/CFS:

• is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated
• affects everyone differently and its impact varies widely for some people symptoms still allow them to carry out some activities, whereas for others they cause substantial incapacity
• is a fluctuating condition in which a persons symptoms can change unpredictably in nature and severity over a day, week or longer
• can affect different aspects of the lives of both people with ME/CFS and their families and , including activities of daily living, family life, social life, emotional wellbeing, work and education.

1.1.2.

Recognise that people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by people who do not understand their illness. Take into account:

• the impact this may have on a child, young person or adult with ME/CFS
• that people with ME/CFS may have lost trust in health and social care services and be hesitant about involving them.

Approach to delivering care

For a short explanation of why the committee made these recommendations and how they might affect practice, see the .

Full details of the evidence and the committees discussion are in:

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.”’

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Where Can I Get Support

ME/CFS can have a significant emotional and financial impact on your life. A lack of understanding and awareness about ME/CFS means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers.

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. They also offer resources and services for children and young people affected by ME/CFS and their families.

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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Who Develops Chronic Fatigue Syndrome

Chronic fatigue syndrome can affect anyone. It is estimated that CFS affects an average of between one and five people in every 1,000 in the UK. The true figure may be higher because some people with ME/CFSare not diagnosed.

It is about three times as common in women as in men. The most common age for it to develop sometime between the early twenties to mid-forties. In children the most common age for it to develop is 13-15 years but it can develop at an earlier age.

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 the novel coronavirus SARS-CoV-2. Prevention is by vaccination, infection control precautions 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.

Various minor immunologic abnormalities have been reported. These abnormalities include low levels of IgG, abnormal IgG, decreased lymphocytic proliferation, low interferon-gamma levels in response to mitogens, poor cytotoxicity of natural killer cells, circulating autoantibodies and immune complexes, and many other immunologic findings. However, none provide adequate sensitivity and specificity for defining CFS. They do, however, underscore the physiologic legitimacy of CFS.

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