Chronic fatigue syndrome may get a new name

Cases of chronic fatigue syndrome, or CFS, seem to be on the increase.

And now, a panel at the Institute of Medicine, an independent government advisory body in the US, has recommended renaming CFS systemic exertion intolerance disease (Seid), and designating it as a disease.

On 10 February, the 15-member expert panel released a report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining An Illness”, summarizing the scientific evidence it used to come up with the new definition. The panel not only recommended changing the name but also chose the word “disease” for CFS because, according to it, “it’s a stronger word”.

The report also offers a simplified four-point diagnostic criteria: profound fatigue lasting at least six months, total exhaustion after even minor physical or mental exertion, unrefreshing sleep and cognitive impairment (brain fog).

“Although there are no clear statistics available in India, I see a lot of people affected with the chronic fatigue syndrome, being tired all the time. But hardly anyone even considers doing something about the ‘tiredness’,” says Navneet Kaur, senior consultant, internal medicine, Nova Specialty Hospitals, New Delhi.

Demystifying fatigue

“You are likely to have CFS if suddenly you feel inexplicably tired and exhausted; this fatigue does not ease off even after a rest, the patient experiences pain in the muscles, joints or head, has a thumping heart (palpitations), loses concentration and faces short-term memory loss, even though there is no significant change in their lifestyle,” says Dr Kaur.

Often, this syndrome is marked by changes in weight, sore throat and intestinal distress (constipation or diarrhoea). “The symptoms vary from mild (you feel tired on some days), moderate (reduced mobility and disturbed sleep pattern), to severe (most daily tasks are affected and most of the time is spent in bed),” she adds.

The February report lists scientific evidence linking the syndrome to viruses such as Epstein-Barr, and also talks about studies which show that people with CFS might have weakened immune systems. “Some other types of herpes viruses, and most recently the retrovirus XMRV, have also been linked to CFS. Inherited genetic susceptibility (a trait, as yet unidentified, possibly increases the risk of CFS) and hormonal imbalance are two other probable contributing factors. Also, a traumatic event (like divorce or the death of a loved one), too much stress, or an emotional trauma might lead to it,” says Satish Koul, general physician, Columbia Asia Hospital, Gurgaon, Haryana.

In 2009, a study, published in the journal JAMA Psychiatry, established a link between childhood trauma and CFS risk. Lead researcher Christine Heim found that exposure to childhood trauma was associated with a three- to eight-fold increased risk of CFS, depending on the type of trauma—most often emotional and sexual abuse, or emotional neglect.

“It is difficult to diagnose this syndrome as there are no specific tests. Some criteria have to be checked, and individual assessments made. Other suspected diseases (like anaemia, thyroid, liver and kidney problem, etc.) need to be ruled out before finalizing the diagnosis,” says Dr Koul.

There is no cure for CFS, so treatment aims to reduce the symptoms through medication or cognitive behavioural therapy. “Graded exercise therapy (GET), a gradual, progressive increase in physical activity, and exercises like walking or swimming are often used as a treatment module. Most people recover with treatment, although the time it takes can vary from two years to many more years. Those who are diagnosed early (within two years of the beginning of the symptoms) respond better to treatment. So if you’ve been exhausted for months, can’t carry out your daily activities, and nothing you have tried makes you feel better, maybe it’s time to see a doctor,” says Dr Koul.

Natural energy boosters

Some lifestyle and food changes can help too. “A high-protein, moderate-carbohydrate diet and inclusion of antioxidants and good fats like omega 3 are the dietary recommendations,” says Neelanjana Singh, chief clinical nutritionist, PSRI Hospital, New Delhi.

She lists other steps that help: Consume probiotics regularly, for they help good bacteria (essential for better digestion and assimilation of nutrients) thrive in the intestines and are full of B vitamins, which are crucial for the energy transfer process (from the food to the cells). Go easy on sugar and refined foods as they suppress the immune system, increase inflammation, lead to a rapid rise in blood sugar, followed by a crash (hypoglycaemia), that causes fatigue, anxiety and cravings. Caffeine can create havoc as it is a diuretic and aggravates adrenal exhaustion, leading to low blood sugar, and amplifying anxiety, stress and fatigue-related symptoms.

According to Dr Kaur, an overworked adrenal gland (due to stress) leads to over-secretion of the fight-or-flight hormone adrenalin—and this leads to sluggishness. “What you need is a counter strategy. And meditation provides just that,” she says, adding that breaks from technology help too. “For a few times during the day, sign out of your email and power off your phone. Lunch-hour is a good opportunity to do this, or settle for a 1-hour distraction-free window when you get home. Keep electronic gadgets out of the bedroom. They keep your brain engaged.”

So make a rule: no TV watching or Net surfing for at least half an hour before going to sleep; these stimulate your mind and interfere with sleep. “It is better to read a bit or listen to some soothing music during bedtime,” says Dr Kaur.