A woman from Bengaluru has filed a petition in the Delhi High Court to stop her Noida-based friend, who has been suffering from Chronic Fatigue Syndrome since 2014, from travelling to Europe to undergo a physician-assisted euthanasia.
The petition stated that his condition has deteriorated over the past eight years, making him “completely bed-bound and just able to walk a few steps inside home”.
Also known as myalgic encephalomyelitis (ME/CFS), Chronic Fatigue Syndrome, is a serious and debilitating disease that affects the nervous system, the immune system and the body’s production of energy, according to the US Centres for Disease Control and Prevention (CDC).
Experts have suggested that the term can trivialize the severity of the illness. In a 2015 report, the US Institute of Medicine proposed the term systemic exertion intolerance disease (SEID).
Its causes are still unknown. However, the potential triggers would include viral or bacterial infection, hormonal imbalances and genetic predispositions. There is no specific test for the disease, and doctors have to rely on medical examinations, blood and urine tests.
ME/CFS can affect anyone, from children to adults of all ages. According to the CDC, it’s more common in women and people between 40 and 60 years old.
The biggest telltale symptom is a significantly lowered ability to do activities that were performed before the illness. This is accompanied by at least 6 months (or longer) of debilitating fatigue that is more severe than everyday feelings of tiredness. This fatigue is not relieved by sleep or rest and exercising usually makes the symptoms worse, according to the UK’s National Health Services (NHS).
Other symptoms include trouble sleeping, difficulty in thinking, memory retention and concentration, dizziness/lightheadedness, headaches, muscle pain, joint ache, flu-like symptoms, tender lymph nodes and digestive issues.
According to the New York state health department, the most recognizable symptom is post-exertional malaise (PEM). Patients often describe it as a “crash” in physical/mental energy following even minor activities like grocery shopping or brushing teeth.
As of yet, there is no specific cure or approved treatment. Instead, doctors recommend ways to deal with the symptoms of the disease.
To manage PEM, patients are recommended ‘pacing,’in which patients learn to balance rest and activity to prevent crashes caused by exertion.
The CDC earlier recommended cognitive behaviour therapy (CBT) and graded exercise therapy (GET), which uses physical activity as a treatment for ME/CFS. After concerns over their effectiveness and possibility of harm, the CDC stopped recommending these treatments, according to the New York state health department.