Welsh singer Marina Diamandis has been diagnosed with chronic fatigue syndrome. Here are its causes, symptoms, treatment
Welsh singer Marina Diamandis says she's been diagnosed with chronic fatigue syndrome. Here are causes, symptoms, treatment of CFS or Myalgic Encephalomyelitis
Welsh singer and songwriter Marina Diamandis says she's been diagnosed with chronic fatigue syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), which is a complex and debilitating neurological disorder that affects millions of people worldwide. It is characterised by profound fatigue that is not alleviated by rest and is often worsened by physical or mental activity.
Taking to her social media handle, Marina posted, “I have a health/ life update I want to share with you all. After 7 years of health issues, I recently got diagnosed with Chronic Fatigue Syndrome/ ME. I’ve had symptoms like deep fatigue, numbness, tingling, low appetite, brain fog, rashes, insomnia and a feeling of being ‘poisoned’ for so long it’s been hard to remember what healthy feels like. My baseline energy has been at 50 - 60% for a long time. Aside from a few periods of remission, the last 7 years have consisted of relying on adrenaline and will power to push me through each day (sic).”
She added, “Recovery started 2 months ago after an unusually bad flare up that involved shooting pains and burning sensations all over my hands, legs and back. After seeing countless doctors, I started working with a functional medicine practitioner to find the root cause of the symptoms. After a lot of reading, I now understand that these symptoms are a result of a hypersensitive nervous system, developed in response to chronic stress. My body has felt stuck in “fight or flight” mode and there were many warning signs it gave me before the worst symptoms set in (sic).”
Marina concluded the post and wrote, “Regardless of the trigger, the key to healing seems to lie in retraining the nervous system to regulate itself again. The happy news is… (!) I am feeling better today than I have in a long time. My energy levels are around 65 - 70% most days and the dips I have are shorter. Healing is demanding a lot of my energy and attention right now, but the better I feel, the sooner I can get back to my creative life again. I worked for the first time in a while yesterday and it felt so good. I am very grateful for the lessons this experience has given me and I KNOW it’s going to change my life for the better! I feel like I have been given the opportunity to rebuild my life from scratch, exactly how I want it to be. I’ve also cultivated a deeper empathy for the millions of people who live silently with chronic illness… It’s hard to maintain optimism when the world feels like it’s moving on without you, but hope always exists. Answers always exist. The body wants to heal — and what I’ve learned is that you have to work with it, not against it (sic).”
Causes and symptoms:
Individuals with ME/CFS often experience a range of symptoms, including cognitive impairment, muscle and joint pain, sleep disturbances, headaches and gastrointestinal problems. In an interview with HT Lifestyle, Dr J Harikishan, Senior General Physician at Kamineni Hospitals in Hyderabad, shared, “Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is a debilitating condition that affects millions of people worldwide. It is characterised by persistent and profound fatigue, along with a range of other symptoms such as cognitive difficulties, muscle and joint pain, headaches and unrefreshing sleep. Despite its impact on daily activities, it is often misunderstood and stigmatised.”
He revealed, “The exact cause is unknown, but it is believed to involve a combination of factors including infections, immune dysfunction, hormonal imbalances, and genetic predisposition. Contrary to misconceptions, it is a legitimate medical condition and not a result of laziness or psychological issues. Diagnosing ME or CFS is challenging due to the absence of specific tests. Doctors rely on clinical history, symptom presentation, and ruling out other medical conditions. Seeking medical attention is crucial if persistent fatigue and related symptoms significantly affect quality of life.”
Dr Guruprasad H, Senior Consultant Neurologist at Manipal Hospital in Bangalore's Yeshwanthpur, highlighted, “Chronic Fatigue Syndrome also called Myalgia Encephalomyelitis (ME) is a disorder where patients complain of unexplained extreme fatigue along with some cognitive dysfunction in the form of poor concentration, memory and difficulty in executing routine activities. They also complain of orthostatic symptoms like giddiness, blurring of vision on standing, and fatigue on exertion. Usually, their sleep is disturbed and they do not feel fresh in the morning after a night’s sleep.”
Bringing her expertise to the same, Dr Manira Dhasmana, Associate Consultant, Dept. of Internal Medicine at Max Healthcare in Dehradun, said, “Chronic fatigue syndrome is a disorder, which causes unexplained and persistent fatigue. Due to a very general nature of symptoms, it becomes very hard to diagnose CFS. While percent fatigue is the hallmark of CFS, other symptoms like unrefreshing sleep, post exertion malaise and concentration problems are among the other common symptoms. Patients with CFS are usually frustrated or depressed because they feel that others do not take their symptoms seriously. Although CFS can occur in people of all ages, it more often begins in young and middle-aged adults than in children or older adults. CFS is diagnosed about twice as often in females as in males.”
Dr Sujit Kumar, Senior Consultant Neurologist and Epileptologist at Apollo Hospitals in Bangalore's Seshadripuram, echoed, “Chronic Fatigue Syndrome, also called Myalgic Encephalomyelitis, is a multi-system disease commonly characterised by severe fatigue, cognitive dysfunction, sleep problems, autonomic dysfunction, and post-exertional malaise, severely impairing activities of daily living. CFS is a biological condition, not a psychological disorder. The exact pathogenesis remains to be fully understood. The etiology is not fully clear. Various factors such as infections due to Human Herpes Virus 6, Parvo Virus and alterations in the immune system have been implicated.”
He added, “Studies have found that the prevalence is significantly higher between 40 and 70 years of age. Women suffer from it more often than men do. Severe fatigue usually starts with a flu like illness. Post exertional fatigue is very common. Other features like headache, insomnia, muscle and joint pains are common. Autonomic features like nausea, vomiting, night sweats and giddiness are common. Some psychiatric features like panic attacks anxiety are also seen. Some cognitive features like slow mental processing, lack of concentration and memory lapse can be seen too.”
Diagnosis:
Dr Guruprasad H suggested, “If the symptoms persist for 6 months and other diagnoses of hypothyroidism, depression, multiple sclerosis, OSA, restless leg syndrome are ruled out with appropriate investigations. This is considered as a post-viral illness and many viruses like Enterovirus, Herpes Virus (HHV-6), HIV, Coxsackie, CMV can result in the disorder.”
Dr Sujit Kumar listed:
1. Fatigue - A noticeable decrease or impairment in a patient's ability to engage in activities they would have enjoyed before the onset of the illness.
2. Post-exertional Malaise - Patients experience worsening symptoms and function after exposure to physical or cognitive stressors, which they previously well tolerated.
3. Unrefreshing Sleep - Patients feel tired after a night's sleep.
He said, “These are three criteria required for diagnosis. These should be present for 6 months and more than 50 percent of the patients’ time. Cognitive impairment and drop in blood pressure are the additional criteria. Several medicines like antidepressants, steroids, immunoglobulins and non-pharmacological therapy such as cognitive behavioural therapy have been tried. Prognosis for recovery is guarded and takes a long time. It has a severe impact on the quality of life.”
Treatment:
According to Dr J Harikishan, “Treatment focuses on symptom management and overall well-being. A multidisciplinary approach involving healthcare providers from various specialties may be necessary, including cognitive behavioral therapy, graded exercise therapy and medication for specific symptoms. Support from family, friends, and the community is vital. Raising awareness about ME or CFS helps reduce stigma, increase understanding and improve access to support and resources for affected individuals.”
Dr Guruprasad H said, “Recently Chronic Fatigue Syndrome came into discussion during the Covid pandemic as a part of ‘Long Covid’ or ‘Post Covid Syndrome’. Chronic fatigue syndrome is managed with a combination of medications, behavioral therapy, counseling the patients about work-life balance, sleep hygiene, physical exercises, relaxation techniques, balanced diet and nutritional supplements.”