ANNA PRINSLOO
PHYSIOTHERAPY
Myalgic encephalomyelitis
Chronic fatigue syndrome
Long COVID
Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a fluctuating, long-term health condition. It is a complex, multisystem disease that affects many parts of the body, including the nervous and immune systems. The exact cause is unknown, but it is often triggered by an infection (most commonly viral). There are many similarities between ME/CFS and long COVID. There are no specific tests to diagnose ME/CFS, but diagnosis is based on a set of core symptoms lasting longer than 6 months, and is made after ruling out other conditions. These symptoms are:
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Post-Exertional Malaise (PEM): This is the hallmark feature of the condition. Symptoms get worse after exertion (physical, emotional or mental), even if that level of activity was within normal limits before the onset of ME/CFS. A "crash" from PEM can be delayed by hours or days and can last for days, weeks, or even longer.
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Profound Fatigue: Severe, persistent exhaustion that is not a result of excessive exertion and is not substantially relieved by rest or sleep.
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Unrefreshing Sleep: Sleep problems are common, and people often wake up not feeling rested.
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Cognitive Dysfunction (Brain Fog): Difficulties with thinking, memory, concentration, and finding the right words.
There is currently no known cure for the condition. However, there are management strategies that can improve quality of life, capacity to cope, and ability to function. There is a paucity of research about ME/CFS; however, the emerging research about long COVID may shed some light on ME/CFS. Many patients experience a fluctuating course with periods of relative remission and relapse. To date, most systematic reviews suggest that the percentage of adults who achieve a full recovery (a return to pre-illness levels of functioning and sustained normal health) is between 5% and 10%. A much larger percentage of people experience some degree of improvement in their symptoms and functioning over time. Unfortunately 25% of people with the condition may be housebound or bedbound. Estimates suggest that around 40% (with a wide range across studies, from 17% to 64%) of ME/CFS patients achieve substantial improvements despite not fully recovering.
ME/CFS - An energy crisis on a cellular level
Mitochondrial Dysfunction
The mitochondria, often called the 'powerhouses of the cell,' are responsible for producing Adenosine Triphosphate (ATP), the molecule that provides energy for all cellular functions. Studies suggest that people with ME/CFS have a reduced ability to produce ATP. The mitochondria cannot meet increased energy demands during physical or cognitive exertion. This cellular energy crisis results in fatigue and post-exertional malaise.
Metabolic Shifts and Inefficiency
Studies show distinct metabolic changes in ME/CFS patients, with abnormalities in numerous metabolic pathways. There is a systemic disruption in how the body processes and uses energy-related molecules.
Management and support
People with ME/CFS need to operate safely within their 'energy envelope' and avoid pushing themselves. Pacing is crucial to avoid a 'crash' due to post-exertional fatigue. Activities need to be broken up into small tasks with rest periods in between. The NICE guidelines for the management of ME/CFS have been updated and graded exercise therapy is NOT recommended. Appropriate pacing has a significant impact on the progression of the condition.
Unfortunately evidence is lacking for a definitive treatment protocol, however there are many promising areas of research to support people with ME/CFS. There is no 'one size fits all' approach, and it is important for practitioners to remember that the person living with ME/CFS is the expert in their own experience. Some people with the condition have found the following therapies helpful to manage symptoms:
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Support with pacing strategies
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Nervous system regulation strategies such as stress management techniques, body awareness and meditation
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Acupuncture, acupressure and laser acupuncture
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Breathing awareness and 'exercises'
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Bringing mindfulness to the body and how the body moves
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Massage and lymph drainage (gentle, pain-free)
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Red light therapy (supports mitochondrial function)
When receiving physiotherapy a patient with ME/CFS may need to be supported in various ways, such as:
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The option to do an online session (if attending a session in person is too tiring)
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Dimming the lights and closing the blinds in the practice room
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Avoiding excessive stimulation (sounds, lights, people, smells) when visiting the practice
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The option to cancel an appointment at late notice without being charged for the session (if the patient is not feeling well enough to attend)