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What is Chronic Fatigue Syndrome (CFS) and Should I be Worried?

All these different names for the same illness show the history of confusion and lack of definitive diagnostic tools.

Whilst a distinction in definition can be made between ME and CFS and some people argue these are different illnesses or subgroups, in actual fact it is more of a difference of naming convention.  People in Europe and the UK more often using the term ME and people elsewhere more often use CFS.  Post Viral Fatigue Syndrome was born from the experience where people start to develop CFS after they experience a virus.

So many names for one condition!

What is Chronic Fatigue Syndrome (CFS)?

What is Myalgic Encephalomyelitis (ME)?

What is ME/CFS??

What is Post-Viral Fatigue Syndrome (PVFS)?

What is Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)?

What is Systemic Exertion Intolerance Disease (SEID)?

Chronic Fatigue Syndrome Symptoms

When people ask 'what is chronic fatigue syndrome', they often think the answer has solely to do with fatigue. However, whilst there is a core set of symptoms, the extended list of symptoms is large and varies between patients.

The core symptoms include:

  • profound fatigue not alleviated by rest;
  • cognitive impairment;
  • post-exertional malaise (PEM);
  • unrefreshing sleep;

But there can be many more symptoms of CFS, including immune dysfunction, pain, nervous and digestive system symptoms and sensitivities to stimulation and foods and medicines.

Post-exertional malaise (PEM) is a core symptom of the illness and can occur after either physical or mental activity.  However, such activity does not just create malaise, but usually triggers a significant worsening of symptoms.  This CFS symptom exacerbation (often referred to as a flare up or payback) after activity can last days, weeks or even months.

Severity of Chronic Fatigue Syndrome

Chronic Fatigue Syndrome is a serious and disabling illness that affects people to varying degrees.  The severity can fluctuate over time leaving people very ill and bed-bound at times, but being able to engage in some study or work when the illness is milder. However, even when people experience milder CFS, it usually impacts their ability to engage in leisure and social activities often leading to isolation.

Chronic Fatigue Syndrome is real

Having discussed the range and severity of CFS symptoms, it might seem strange to talk about whether ME/CFS is real or not.  However, with so many of the symptoms difficult to measure and based on patient reporting, the myth that the illness isn’t real can occur. Unfortunately, this is sometimes expressed by suggesting that patients are hypochondriacs, depressed or attention seekers making up their symptoms.

This is extremely distressing for a patient, given the genuine symptoms they are experiencing. People already find it difficult to deal with the illness and are often very vulnerable, so CFS advocacy and awareness play an important role in supporting people experiencing CFS.

Another reason why some people think the illness isn’t real, is that they view the symptoms as a collection of separate dysfunctions. However, once you understand the pathogenesis of the illness, you can see that the different dysfunctions are connected and not a random coincidence.

Not only have I had this illness myself, but I have interacted with thousands of people experiencing this illness and I can categorically assure you that any suggestion that CFS isn’t real is simply not true and not fair.

Dr. Deepti's Recommendations for CFS

The following supplements may help reduce symptoms of CFS. Supplements may not be appropriate for every patient, and some may have side effects and/or interact with other medications.

  • Omega-3 fatty acids, such as those found in fish oil may also help reduce fatigue. Studies show that people with CFS have lower ratios of omega-3 to omega-6 fatty acids. Omega-3 fatty acids may increase the risk of bleeding, especially if you also take blood thinners such as clopidogrel (Plavix), warfarin (Coumadin), or aspirin.
  • NADH, a naturally-occurring chemical involved in energy production in the body. One small study showed it might help reduce symptoms of CFS. But more research needs to be done.
  • DHEA, a hormone produced by the body that may improve energy levels. Your body uses DHEA to make testosterone and estrogen. It is truly a hormone rather than a supplement, and should never be taken without a doctor's prescription. DO NOT use DHEA if you have or are at risk for breast cancer, prostate cancer, or any other hormonally-influenced illness. DO NOT take DHEA if you are pregnant or breastfeeding. People with diabetes, high cholesterol, liver disease, or bipolar disorder should not take DHEA. DHEA interacts with many medications, including antidepressants and ant-anxiety medications.
  • Vitamin B12 has been shown to improve energy in people who are not getting enough B12. It is not clear whether it will help in cases of CFS. Oral supplements do not work as well as injections.
  • Beta-carotene to strengthen immune function. Some studies suggest that smokers should not take beta-carotene. Beta-carotene may interact with some drugs used to treat high cholesterol.
  • L-carnitine may support energy production in the cells. L-carnitine may alter blood pressure. Tell your doctor about any kidney issues you may have, or if you have a history of seizures. People who take thyroid hormone or blood thinners should ask their doctor before taking L-carnitine.
  • Vitamin D. Although vitamin D is not used specifically to treat CFS, not getting enough vitamin D may make symptoms worse. Vitamin D can be toxic in extremely high doses.

Prevalence of Chronic Fatigue Syndrome

The Institute of Medicine released a report in 2015 suggesting that ME/CFS affects 836,000 to 2.5 million people in America alone.  Global estimates vary drastically but can be in the order of 0.2% to 2.6% of the population.  Further, if you include Fibromyalgia to be on the same spectrum of illness with rates of 2-4%, the total proportion of the population that are experiencing the illness may be as high as 6.6%.  However, given the poor rates of diagnosis now and in the past, the percentage of people that have had or currently have the illness may be significantly higher.

Cause of Chronic Fatigue Syndrome

Chronic Fatigue Syndrome is caused by a large range of triggers including infections, toxic exposures, physical trauma or stress as well as psychological trauma or stress – this may be referred to as the etiology of Chronic Fatigue Syndrome.

It is generally understood and reported that researchers have not found the cause of CFS, meaning they have not found the root cause or root mechanism of the disease and that they don’t understand the disease process (ie. the pathogenesis of CFS). However, it may be more accurate to say that the cause of CFS is not widely understood or agreed upon.

The challenge for the medical community is that CFS affects multiple bodily systems and hence there can be multiple ways or disease processes that lead to the symptoms (the pathophysiology of CFS).

Chronic Fatigue Syndrome is also an illness with a large range of symptoms, many of which present in other diseases.  In addition, the vast majority of tests show either normal or somewhat abnormal function, as opposed to a definitive abnormality.   This reflects the fact that the body is in a deep state of dysfunction in CFS rather than a particular system/organ being “broken”. (such as in heart disease or Addison’s disease)

What is Chronic Fatigue Syndrome - Summary

Chronic Fatigue Syndrome is a neurological illness that affects every system of the body creating a large range of symptoms. It can occur at any age and can last a shorter time of six to twelve months or it can longer. Some people experience full remission and can have a flare up again later in life, however some people experience a full and lasting recovery.