Myalgic Encephalomyelitis / Chronic Fatigue Syndrome - An Overview and Options for Management

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According to the Public Health Agency of Canada, as of 2010, the diagnosis of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) applied to roughly 1.4% of the Canadian population aged 12 and over. ^[1] Unfortunately, because it is often poorly understood by the medical system, it also likely goes undiagnosed in many patients. ME/CFS is characterized as a condition which causes profound fatigue which is classically worse with exertion of any kind (physical or emotional) and presents with a large number of systemic symptoms. ^[2]

Diagnostic Criteria

ME/CFS is currently a diagnosis of exclusion, which means that the many other conditions which also might explain the pervasive fatigue must be ruled out prior to diagnosis. Unfortunately, there is not yet a consensus about the best way to diagnose the condition amongst health-care providers. One example of criteria available is the current Canadian Consensus Criteria (CCC). ^[2] According to these criteria, the patient must demonstrate the following:

1. Fatigue which is profound and inhibits regular function (patients tend to exhibit reduced functioning of more than 50% and can sometimes be housebound or bedridden depending on severity).
2. Postexertion fatigue and malaise which occur after both physical and cognitive effort, leading to crash patterns of behaviour. This is in direct contrast to conditions like depression which tend to improve with exertion.
3. Sleep dysfunction where the patient demonstrates unrefreshing or interrupted sleep patterns which can be visible on sleep study.
4. Chronic migratory pain in both muscles and joints which ranges in severity.
5. Cognitive changes and dysfunction, which is often described as brain fog but may include issues with word retrieval, focus, and concentration.
6. At least one symptom from two of three of the following categories: a) Autonomic nervous system dysfunction symptoms (e.g. an inability to properly regulate blood pressure, heart rate, sexual function, and/or digestion); b) Neuroendocrine dysfunction symptoms (e.g. changes in temperature regulation, lack of stress tolerance); c) Immune dysfunction symptoms (e.g. symptoms of infection like sore throat, swollen lymph nodes, flu-like feelings).
7. Illness is chronic: Present at least 6 months in adults and 3 months in children.
8. Another condition cannot otherwise explain the fatigue.

Lab Testing

When considering a diagnosis of ME/CFS, extensive bloodwork is required for proper evaluation of a patient’s case. Unfortunately, no test currently available is diagnostic for the condition.^[2] Lab testing is used instead to rule out other conditions, to ensure that other comorbid conditions are managed well, or to optimize the patient’s condition overall. Some of the more relevant and necessary tests which are typically run include tests to rule out anemias, immune pathologies, inflammation, nutrient-status changes (iron, B12, folate, vitamin D3 deficiencies), infectious causes (e.g. HIV, EBV, Lyme), liver and kidney pathologies, changes to hormone production (adrenal, thyroid, and sex hormones), and other rheumatological conditions. Though this lab work is extensive, it often comes back normal despite the severity of patient symptoms.^[2] This can be incredibly frustrating in the therapeutic process for both patient and practitioner, and can often lead to the incorrect assumption that symptoms are related to mood conditions such as depression.

Possible Etiologies and Contributing Factors

Unfortunately, there is still much the medical community doesn’t understand about the root cause of ME/CFS. At this point, the primary explanation is that most ME/CFS patients have a history of biologic infection (chronic viral, bacterial, fungal, or parasitic infections) which has induced several changes in body function and physiology. Oftentimes, patients can link their condition back to a set of initial illness symptoms from which they never properly recovered.^[2]

These infectious triggers may induce changes to immune regulation overall. In the first three years after onset of ME/CFS, it has been demonstrated that patients also have detectable changes in immune mediators such as cytokine and chemokine concentrations when compared to average populations. These changes reverse and are no longer detectable after this three-year period, which may account for poor treatment outcomes after this point.^[3] Other changes include: 1) lower natural killer (NK) cell function, leading to poorer immune function overall; 2) a shift towards antibody-mediated immunity, which may contribute to the high levels of allergy and sensitivity in these patients; and 3) overactive RNase pathways, which may lead to leaky cellular mitochondrial membranes and changes to energy production. ^[2]

Patients with ME/CFS have also been shown to have low mitochondrial function, leading to lower-than-normal energy production. A study published in 2016 demonstrated that patients with ME/CFS had consistent changes in biochemical metabolomic profiles, and that these changes showed that patients with ME/CFS were actually in a hypometabolic state similar to a “Dauer” or hibernation state when compared to average populations.^[4] This would also contribute strongly to the debilitating fatigue in this patient population.

Therapeutic Interventions

Most importantly, care provided for patients with ME/CFS should be individualized. The following treatments have been categorized by their mechanism of action.

Limiting Energy Loss
Since patients with ME/CFS tend to experience extreme stress intolerance, the largest focus of care long-term involves working toward pacing strategies and proper stress management. This can often be emotionally difficult, because the individual must acknowledge their current energy limitations. To help with evaluation of one’s current energy expenditure, one tool which is available is the activity log.^[5] On an activity log, the patient records their current activities, rest periods, sleep, and Functional Capacity Scale (FCS) score after engaging in activity. With this record, patients can assess their current behaviours and rest patterns better and are able to start to develop new pacing patterns if necessary. Once the patient begins to better understand their own energy limitations and work within them, they are better able to retain energy stores overall.

Improving Nutrient Absorption
Generally, patients with ME/CFS experience a certain degree of digestive disturbance. Conditions such as irritable bowel syndrome (IBS) are commonly diagnosed.^[2] Changes in gut motility, bacterial flora, and bowel health have direct impacts on absorption of nutrients required for proper energy production. Additionally, because of severe fatigue, dietary choices often change. Due to the need for preparation, clean up, and effort, patients can struggle to consume enough calories and nutrients. Diets tend to shift toward meals which require less preparation, such as prepackaged meals, or may shift away from eating at all. Due to shifts in the immune system, patients can also develop new food sensitivities. In care, helping patients avoid dietary sensitivities through modified elimination diets of foods such as dairy products, eggs, grains, corn, soy products, caffeine, and sugars dependent on individual needs can be helpful. It is also important to encourage adequate intake of nutrients overall by increasing caloric intake and encouraging regular eating patterns. For those who have multiple dietary allergies/sensitivities, rotational diets can also be a useful tool which can be adopted.

Energy Production Support
Supplementation to help in supporting cellular/mitochondrial energy production is another way in which symptoms can be improved for patients with ME/CFS. Some examples of nutrients which may help support these processes and encourage energy production include coenzyme Q10 (CoQ10),^[6] d-ribose,^[7] l-carnitine,[8][9] and B-vitamin complexes.

Encouraging Healthy Sleep
Since sleep is often nonrestorative in this patient population, encouraging deep sleep is incredibly important to help with recovery and proper cognition. Therapies to help in encouraging proper sleep patterns may include substances like melatonin,^[10][11] lavender,^[12] and valerian.^[13] Some caution needs to be utilized with these substances, as they can be sedating and may worsen symptoms of fatigue if introduced at too high a dose.

Pain Management
Pain is often best managed with physical therapies such as cupping or acupuncture, as these physical modalities do not have interactions with other medications or supplements. Research appears positive but is not yet conclusive about the benefits of acupuncture in patients with ME/CFS.^[14] D Ribose, discussed prior for increasing energy production, has also been shown in a preliminary study to be helpful for pain management.^[7]

Managing Mood and Expectations
One of the most important things in managing care with patients with ME/CFS is prevention of reactive depression because of illness. Ensuring healthy support systems and reducing isolation is a priority in care. Though not a cure for the condition, cognitive behavioural therapy is one form of psychotherapy available which has been shown to help with modifying negative thought patterns and may help patients cope better with the life-changing impacts of ME/CFS. ^[2]

Important Considerations for Therapeutic Management

First and foremost, because of the unfortunate stigma associated with the diagnosis of ME/CFS as being a purely psychosomatic condition, it is important to remember that symptoms are the result of real physiologic changes. Practitioners should validate the patient’s experience and symptoms, and this can be a very important step in moving forward in care and in forming a therapeutic rapport.

Secondly, because of the cognitive changes and fatigue that occur because of this condition, any changes in daily regimens need to be stepwise and slow. Often, interventions which might be applied in one step in the general population need to be applied in smaller units for patients with ME/CFS to prevent changes from becoming overwhelming. One example of this might be making dietary changes meal by meal (i.e. first changing breakfast, then lunch, then dinner) or using precut frozen vegetables instead of fresh vegetables. Nutritional changes need to be considered in the context of how much work they entail (including things like chopping time for fresh fruits and vegetables, and cleaning afterwards). All changes regarding physical activity should also be done in small steps, and not increased or changed drastically. Working with a practitioner to develop these steps can be invaluable.

Finally, patients diagnosed with ME/CFS have a tendency to be sensitive to prescribed substances (whether pharmaceutical or nutraceutical).^[2] These patients may have a higher tendency towards experiencing adverse drug effects. When introducing a new substance or changing doses, changes should be made in small increments and systematically. Any form of drug interaction should be avoided. Often, the initial dose of any therapy may be a fraction of a typical starting dose and should be increased gradually.

Conclusions

Due to the multifactorial nature of ME/CFS, it is incredibly important to treat each case as individual. Ensuring proper evaluation and diagnosis is vital for improving symptoms, because it helps to guide treatment going forward. Though the condition is complex, significant improvements in quality of life are possible with consistent and patient-guided changes.