CFS: THE SILENT DISEASE
“It’s feels like you’re in quicksand!”
The 1st time I discovered CFS (Chronic Fatigue Syndrome) was in an article in Men’s Health magazine in 1987. It described a recurring health problem my brother was having. His medical tests and examinations revealed no pathology. He’ll be bedridden for a few days. Once he’s up and going for a few days, he’ll be bedridden again for another week. It went on for a few months until he finally took a long vacation. Somehow, he recovered his health, and it remained a mystery to everyone.
I soon realized it was a phenomenon many company executives were facing in the 1980s, with no clear-cut diagnosis or pathological cause. His experience was mild in comparison in comparison to the others.
CFS is now known as ME/CFS: Myalgic Encephalomyelitis chronic fatigue syndrome. A severe neuroimmunological disease, with a non-traceable inflammation of the brain and the spinal cord. Not enough is known about it, although it is devastating and leads to a physical breakdown. It is a disabling chronic illness.
In 1969, it was included in the International Classification of Neurological Diseases by the World Health Organization (WHO). It is generally unknown by both the public and physicians, and those affected are usually thought to be depressed, or suffering from a mental disorder. In tropical climates, it is thought to be a mild form of malaria or typhoid fever. To have an idea of its general symptoms, it is comparable to patients who were infected with COVID-19 and still suffer from its aftereffects weeks and months later.
Close to 25 million are affected worldwide, afflicting women (75–85%) more than men. If there were a definitive diagnosis, the estimate would be much higher. So far, there is no cure for it. It attacks people of all ages, particularly those in adolescence to middle age.
Similar conditions overlap or coexist with CFR, such as Fibromyalgia, IBS (Irritable Bowel Syndrome), and sleep disorders — although Fibromyalgia is more painful.
It is considered a weakness in the immunity system because it often surfaces in healthy people. While others claim it is a psychosomatic illness because patients don’t appear ill until they crash.
Individuals are usually housebound, unable to attend school or go to work. The illness can persist for years transforming a patient’s body from bad to worse. Getting out of bed in the morning can be a lengthy and painful ordeal. More and more symptoms emerge over the years, causing infections in all parts of the body such as bronchitis, throat, and bowel infections, etc.
DIAGNOSIS
There exist no specific tests. Consequently, the progressive elimination of other possible causes leads to the ME/CFS diagnosis of permanent exhaustion and pain. PEMA (Post Exertion Malaise) is a Canadian diagnosis of the physical or mental condition of a patient leading to a crash or breakdown. The regular cardiovascular monitoring of the blood count and BP also anticipates the collapse.
CAUSES
The B-cells in the body are a type of white blood cell that produce antibodies to counter viruses and bacteria. They are part of the immune system and develop from the stem cells in the bone marrow. They provoke autoimmune diseases when they produce ineffective or predatory antibodies.
Possible causes are:
· A genetic link.
· Stress affecting the body chemistry.
· Infections that may begin with the flu.
· Immune system changes, or individual responses to stress or infection.
· Fluctuations in energy levels.
EBV- Epstein Barr Virus was formally called Human Gamma Herpesvirus 4. It is one of the nine known human herpesvirus types in the herpes family, and one of the most common in humans, with 90% of people catching it during early childhood. At this stage, it develops without obvious symptoms or consequences. It may eventually surface as ME/CFS in adolescents and young adults.
Infectious mononucleosis, also known as Glandular Fever, is an infection usually caused by the Epstein–Barr virus. Most people are infected by the virus as children when the disease produces few or no symptoms. Other names are Pfeiffer’s, Filatov’s, or Kissing disease.
In isolated cases, ME/CFR is an infection with a variety of pathogens and bacteria. Accidents and injuries may also trigger it. Viruses target the Mitochondria — the little power generators in the body that produce its universal energy source ATP (Adenosine Triphosphate) which supports many processes in living cells.
SYMPTOMS
Patients suffer from a lack of energy and cannot tolerate any exertion. The shortness of breath makes speaking arduous and interrupted. The pain is felt throughout the body down to the bones. They feel weak, and feverish, with aches in the muscles and joints. CFS reduces an active person to a totally apathetic person. They usually fear it may become a permanent condition leaving them lonely and isolated.
· Cognitive lapses in memory, concentration, or thinking skills.
· Extreme fatigue after physical or mental strain.
· Continuous fatigue with muscle or joint pain.
· Sleep exhaustion, or unrefreshed after prolonged sleeping.
· Dizziness that worsens with movement after lying down, sitting, or standing.
· High fever.
· Sore throat.
· Swollen lymph nodes.
Symptoms usually get worse when people exceed their energy limits, whether physically, mentally, or standing for long periods.
Most fully recover, while others suffer life-threatening complications such as:
· Respiratory diseases.
· Spleen damage.
· Low blood cell counts.
· Long-term conditions of ME/CFS.
· Withdrawal symptoms, resorting to solitude.
TREATMENT
There is no access to a target treatment, with no medication to battle the disease. Standard treatments only tackle the symptoms. The only drug therapies are to alleviate the pain, encourage sleep, or counter depression, such as Tricylics: Amitriptyline (Elavil), desipramine (Norpramin), and nortriptyline (Pamelor).
The following may assist:
· Setting reasonable limits in tandem with a patient’s energy level.
· Maintaining regular eating and sleeping habits.
· Eating a well-balanced diet with a focus on carbohydrates for energy, vegetables, and fruits rich in Vitamin C. Natural supplements may also help.
Patients recommend the benefits of alternative treatments, such as:
· Meditation.
· Acupuncture.
· Chinese herbs.
· Antimicrobials.
· High-dose probiotics.
· Enforcing boundaries.
· Daily relaxation and breathing exercises.
· Intermittent indoor exercises limited to their energy reserve.
(Floor-based strength exercises can counteract the de-conditioning of muscles that occurs when individuals go through prolonged periods without exercise).
CONCLUSION
Patients attempt to find the remedies that best work for them to make their lives less isolating and miserable, unable to make plans for “the day after” and their future.
There are a limited number of doctors working with this disease compared to the accruing number of annual patients. There is a lack of deep understanding by medical practitioners. The large pharmaceutical industries appear disinterested in investing in a cure because of the lack of government funding, and politicians consider such cases isolated. Very few scientists around the world are researching this disease, and if they do, it is through private funding. Health insurance companies refuse to take over private care, and medical costs because they do not yet recognize ME/CFS. Although the incidence of patients is much higher than MS and HIV patients.
Until there is capital-intensive research, it will take a decade or so to develop an accurate diagnosis to arrest the disease in its early stages. But how much longer will it take to develop a medication that will alleviate the accrued symptoms?
Millions of people have disappeared from public life due to discrimination and stigmatization. The average lifespan of an ME/CFS patient is only 55–56 years — around 25 years less than the average lifespan!
Sammy RNAJ
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