World Chronic Fatigue Syndrome Day 2017: understanding diagnosis, causes and symptoms

Chronic Fatigue Syndrome causes persistent fatigue, which doesn't go away with rest or sleep.

World Chronic Fatigue Syndrome Day is observed on May 12. Chronic Fatigue Syndrome is a devastating disorder that causes extreme fatigue, but the persistent fatigue doesn t go away with rest or sleep. It is characterized by severe disabling fatigue and a combination of symptoms including self-reported impairment in short-term memory and concentration, sleep disturbance and musculoskeletal pain.

Chronic fatigue syndrome is it real?

Sometimes, it can be difficult to talk to your doctor about the symptoms and the suffering these are causing you. It may not be obvious to your doctor that you are ill, because outwardly you may appear to be healthy! Fortunately, now, it has been established that chronic fatigue syndrome is very real and a very debilitating condition. In my experience, CFS is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages, said Dr. Daniel Peterson at a Research and Clinical Conference, Fort Lauderdale, Florida. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. Feel tired while reading? Get yourself tested for Chronic Fatigue Syndrome

Similarly, during a lecture on Chronic Fatigue Syndrome at Stanford University on March 3, 2011, Dr. Jose Montoya, CFS researcher and clinician at Stanford University, said, Hopefully one day, my dream is that our medical community will produce a formal apology to the patients that not having believed them all these years they are facing a real illness.

It is now accepted that in CFS, the level of functional impairment is equivalent to that of multiple sclerosis, AIDS, kidney failure, chronic obstructive pulmonary disease, and a few other severe medical conditions.

So much so, the Institution of Medicine in the US came out with a new name for the syndrome Systemic Exertion Intolerance Disease (SEID), and the new definition requires four symptoms: [1]

- substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities

- post-exertional malaise

- unrefreshing sleep

- at least one of the two following symptoms: cognitive impairment or orthostatic intolerance (that is, developing symptoms, such as lightheadedness and dizziness, when standing which are relieved when reclining).

The diagnosis dilemma

The disturbing facet of this condition is that no diagnostic tests have been validated by scientists. Diagnosis can be made only after ruling out other medical and psychiatric causes of the fatigue. What baffles scientists even today is whether chronic fatigue syndrome or any subset of the syndrome is an individually separate and distinct entity, or is it a non-specific condition shared by many different entities. This can only be resolved, say scientists, if CFS can be convincingly distinguished from other illnesses, especially neuropsychiatric syndromes such as anxiety disorders and major depression, that can manifest severe fatigue and other psycho-somatic symptoms, much like as it is seen in CFS. [2]

Here is how to cope with chronic fatigue syndrome.

What causes chronic fatigue syndrome?

Scientists are yet to identify what causes chronic fatigue syndrome. Since no single cause could be attributed to the condition, they are playing with the idea that CFS has many causes.

Could infections such as Epstein-Barr virus infection or Rubella or HIV or herpes or Ross River virus cause the disorder? Or is it the mycoplasma that causes pneumonia, or maybe candida that causes yeast infection? However, researchers could not find an association between CFS and infection. According to the Centers for Disease Control and Prevention (CDC), some studies are indicating that CFS may be triggered by a variety of illnesses.

Similarly, physical and emotional stress, known to alter the release of cortisol and other central nervous system hormones, also seem to cause the onset CFS in many cases, and some people with CFS have low levels of cortisol. So, is it possible that stress is causing CFS? But again, studies indicated that though the cortisol levels were low in some people with CFS, the levels were still in the acceptable range of normal .

Studies have analyzed the possibility of allergies, very low blood pressure, and even nutritional deficiencies to be the trigger of CFS. However, none of these seemed to be convincing enough to be labelled as the cause.

Suicide risk

Unfortunately, many people with CFS think of suicide at one time or another. Although the mechanism by which this syndrome might increase suicide risk is not yet clear, a study published in the journal Lancet suggests it could be related to impairment of functioning and disruption to daily life. Further, the study also suggests that depression could be a risk factor for suicide in people with chronic fatigue syndrome, and identification and treatment of depression could therefore help. [3]

Dr David Bell, a pediatrician who has a number of notable studies on CFS believes sufferers are driven to suicide by loneliness and self-doubt, which is very much a component of the disease itself. Although they suffer this debilitating illness every day of their lives, the world including their family insist they look just fine and they could snap out of it if they really wanted to. This utterly false perception of the disease is so widespread that, eventually, most patients with CFS, especially those who become increasingly isolated, have periods when they begin to suspect: maybe I am just crazy , said Dr Bell.

On the other hand, there are people with CFS who are very positive and hopeful.

No matter how hopeless you feel, strive to find the one thing that makes you feel alive and pull yourself to the light at the end of the tunnel. There is hope. Trust me.

Tammy-Louise Wilkins (health and lifestyle blogger diagnosed with CFS)

Reference

1. Jason LA, Sunnquist M, Brown A, McManimen S, Furst J. Reflections on the Institute of Medicine s systemic exertion intolerance disease. Polskie Archiwum Medycyny Wewnetrznej. 2015;125(7-8):576-581.

2. Fukuda K. The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study. Annals of Internal Medicine. 1994;121(12):953. doi:10.7326/0003-4819-121-12-199412150-00009.

3. Kapur N, Webb R. Suicide risk in people with chronic fatigue syndrome. Lancet. 2016 Apr 16;387(10028):1596-7. doi: 10.1016/S0140-6736(16)00270-1. Epub 2016 Feb 10.