Is chronic fatigue syndrome a legitimate diagnosis?
Or, is it a sign that your doctor has stopped investigating your case?
Diseases and syndromes are two commonly used medical terms with similar meanings. Chronic fatigue syndrome and irritable bowel syndrome are two of the more common syndromes present today. Unfortunately, diseases are often taken more seriously than syndromes. Even though the difference between a syndrome and a disease is almost arbitrary (especially from your perspective as a patient).
Both syndromes and diseases are capable of causing suffering and reduced quality of life. Both syndromes and diseases necessitate a medical investigation, treatment, and possibly lifestyle changes. However, those with syndromes can face a more difficult journey through the medical system to reach a clear diagnosis. This is because a disease has a specific, identified cause, the term ‘syndrome’ describes a group of symptoms without a known cause.
Sometimes, this lack of cause can result in the conclusion of medical care. I’ve seen many patients who received a diagnosis of chronic fatigue syndrome or irritable bowel syndrome by a specialist who then sent them on their way. As though the specialist’s job was to name your symptoms and nothing else.
If you get diagnosed with chronic fatigue syndrome (or any other syndrome), that does not mean that what you’re experiencing is in your head. Syndromes are no less real than diseases.
What exactly is a syndrome?
Defining a syndrome is straightforward: it’s a collection or set of signs and symptoms that are correlated with each other but do not have a known cause. (1) Take chronic fatigue syndrome for example; CFS consists of a range of symptoms that includes fatigue, malaise, headaches, sleep disturbances, difficulties with concentration and muscle pain. (2) The collection of these symptoms make up the syndrome known as chronic fatigue.
A syndrome is NOT specific to any one disease and in some cases could even consist of multiple diseases. Chronic fatigue could be a syndrome unto itself. Or, it could be a symptom of another disease process. This is why determining if your collection of symptoms is indicative of a syndrome is so difficult. Add to this the fact that many symptoms can be so wide-ranging that some medical professionals will brush off these complaints as imagined or “all in your head“.
More often than not it is through an extended process of elimination involving a wide range of medical testing that the patient is finally diagnosed with a syndrome. Syndromes tend to be a diagnosis given out of exclusion. For example, chronic fatigue syndrome is often given after all other lab tests that could cause fatigue come back within normal ranges. Your thyroid is healthy. Your iron levels are healthy. You have good amounts of vitamin B12. But you’re still fatigued! Your doctors are unsure why you feel tired all the time (all your lab values look normal) so you are given the diagnosis of CFS.
This can be time-consuming and frustrating. Particularly if, at the end of the process, you are told your symptoms indicate a syndrome for which there is no known cause or cure. Imagine going through years of medical testing to finally receive a diagnosis of chronic fatigue syndrome – a condition for which there is no known treatment. Your medical care ends after being diagnosed. There is no treatment. Except for many a prescription for antidepressants.
What exactly is a disease?
The official definition of a disease is as follows: A disease is a particular abnormal condition, a disorder of a structure or function, that affects part or all of an organism. (3)
To be clear, the term ‘disease’ broadly refers to any condition that impairs the normal function of your body. The difference between a ‘syndrome’ and a ‘disease’ is that the cause of the illness must be known in order for it to be classified as a disease. Disease has a known cause. Syndromes hace an unknown cause.
Diseases vs syndromes
I will next use a few examples below to help you clarify the difference between a disease and a syndrome.
Measles is classified as a disease because its direct cause has been determined – it is caused by the measles virus. Notice how the name of the disease (measles) consists of the name of the cause (measles virus).
Had the measles virus not been discovered, the symptoms that we know indicate measles would instead be classified as a syndrome. These symptoms include:
- runny nose,
- inflamed eyes,
- a flat red rash that spreads all over the body.
As measles has a known cause, it can be diagnosed more easily. Your doctor can recognize the characteristic rash, look for a small, bluish-white spot on a red background on the inside lining of your cheek, and run a blood test that would definitively indicate that the measles virus is present.
Because measles has a known cause a vaccine has been developed to prevent it. This vaccine contains a weakened version of the virus which triggers the immune system to produce antibodies against it. If you’re is exposed to the measles virus at a later date, your body’s immune system would immediately recognize and destroy it without the virus taking hold.
Had the cause not been discovered, the medical profession would only be able to treat the symptoms. Measles is a highly contagious virus with a high risk of dangerous side effects and was responsible for the deaths of 6,000 people a year before 1954 when the virus was isolated.
Irritable Bowel Syndrome:
Irritable Bowel Syndrome (IBS) is a chronic condition that commonly causes:
- abdominal pain,
It affects approximately 10-15% of people worldwide. Canada has one of the highest rates of irritable bowel syndrome in the world with an estimated number of five million Canadians currently suffering. That’s one in seven Canadians affected with IBS. (4)
IBS, like chronic fatigue syndrome, has no known cause. Therefore we cannot categorize it as a disease. Without a specific cause to look for, diagnosis can be difficult. In the past, a diagnosis could only be made by testing for and excluding other disorders. The newer approach relies less on extensive testing and more on defined patterns of signs and symptoms.
However, some testing is still necessary and can include:
- Blood tests,
- Stool tests,
- Sigmoidoscopy or colonoscopy;
- Psychological tests. (5)
The above tests are done to determine if there is a disease process sustaining IBS. For example, Clostridium Dificile infections could cause a similar array of symptoms as IBS. However, this would be diagnosed as a Clostridium Dificile infection, not IBS, because there is a known cause of the symptom(s).
As there has not been a specific cause identified there is no known cure for IBS. Instead, treatment is aimed at managing the symptoms. You can read more about IBS in another blog post we’ve written here.
Fibromyalgia & chronic fatigue syndrome:
Fibromyalgia and CFS are similar to irritable bowel syndrome in that the cause is unknown. Fibromyalgia/CFS has a common collection of symptoms that include:
- Widespread pain,
- sleep disruption,
- brain fog.
This collection of symptoms make up the definition of fibromyalgia and or chronic fatigue syndrome. Like IBS, fibromyalgia is classified as a syndrome and not a disease.
Fibromyalgia was originally diagnosed using an unstable test known as the tender point diagnosis – determining if you had chronic pain present in at least 11 of 18 areas on the body. Fortunately, the diagnostic method has been refined. Physicians now use the following criteria:
- This is, of course, is the primary concern. The new diagnostic criteria state that pain must be present for at least three months without reprieve. (6)
- There must also be no physical abnormality of the tissue where the pain is experienced.(7) This means that when the area of pain is palpated, there should not be a lump of tissue or ropey muscle fibers.
- The pain can vary in location and intensity. (8)
- Associated symptoms
- Waking unrefreshed (nonrestorative sleep)
- Brain fog and/or poor memory (cognitive dysfunctions)
- The above symptoms last at least three months at a similar level (9)
- Most importantly, no other health problem that would explain the pain and other symptoms (10).
This last point is key – all other disorders must be ruled out for a definitive diagnosis of fibromyalgia/chronic fatigue syndrome. For more information on fibromyalgia, including diagnosing it and its relation to genetics, check out another blog post we’ve written here.
Once all other illnesses have been ruled out and a diagnosis of fibromyalgia and/or chronic fatigue is given, treatment can begin. But since we don’t know the cause, fibromyalgia can only be treated with a range of medications to manage the symptoms. At Flourish Clinic we provide other options for symptom management. More information can be found in the blog posts we’ve written on fibromyalgia and chronic fatigue.
These are only two examples of syndromes. There are many other syndromes, all of which have symptoms that are just as capable of negatively affecting those afflicted as a disease. They are only classified as ‘syndromes’ because there has not been an identifiable cause, not because they are any less serious.
Syndromes are not psychological disorders. Chronic fatigue is not in your head. The cause of your fatigue may not yet have been identified. But there is a reason why you suffer from fatigue. I wrote a series of posts the explains the real cause of chronic fatigue syndrome. Check them out for detailed info on what’s really going on with CFS.
Now, I want to hear from you!
How did you receive a diagnosis of chronic fatigue syndrome?
What treatments were recommended to you?
Also published on Medium.