Is CFS real?
Yes, Chronic Fatigue Syndrome is real. But unfortunately because it is a syndrome and not a disease you may struggle to get the treatment you need.
Disease vs Syndrome
Chronic Fatigue is a syndrome, not a disease. And in the medical world, if you have a disease, you’ll probably receive much better medical care than if you have a syndrome.
This is because a disease has a specific, identified cause, whereas a syndrome describes a group or cluster of symptoms without a known cause.
That’s why it’s much more difficult for people suffering from syndromes to receive a clear diagnosis.
It is incredibly frustrating to not know the cause of your health issues. I’ve seen many patients who received a diagnosis of CFS or irritable bowel syndrome (IBS) by a specialist who then sent them on their way. As if the specialist’s job was to name your symptoms and nothing else.
However, you need to know that a syndrome is just as real as a disease. Chronic fatigue syndrome is real.
What makes chronic fatigue a syndrome?
Defining a syndrome isn’t straightforward. Perhaps that’s why there’s so much confusion. A syndrome is a collection of symptoms that happen at the same time.
Take chronic fatigue syndrome for example. CFS consists of a range of symptoms that includes:
- sleep disturbances,
- difficulties with concentration,
- muscle pain.
The collection of these symptoms make up the syndrome known as chronic fatigue.
This post explains how CFS is diagnosed.
A syndrome is NOT specific to any one disease and in some cases could even consist of multiple diseases. Your chronic fatigue could be a syndrome. Or, it could be a symptom of another disease. This is why it is so hard to figure out if your symptoms are part of a syndrome. 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, you will not receive the diagnosis for a syndrome until your doctor has eliminated all other possibilities.
Before diagnosing CFS, your doctor will need to ensure:
If all of these check out and you still have fatigue you will receive a CFS diagnosis.
This can be time-consuming and frustrating. Particularly if you receive a diagnosis for a syndrome that doesn’t have a known cause or cure. After all of that you may leave your doctor’s office with another prescription for an antidepressant… Even though your condition is real!
Syndromes don’t receive the kind of care that diseases do. Which comes in part by a lack of understanding.
Is chronic fatigue syndrome a disease?
No. Chronic Fatigue is a syndrome. Not a disease.
The difference between the two is a disease has a known cause. A syndrome does not.
A disease has a known cause. Syndromes do not. This is why your medical care for CFS is so lousy. Your doctor doesn’t know what’s causing your fatigue. When you don’t know the cause, it’s incredibly hard to treat an illness!
Chronic fatigue syndrome is real. Your doctor acknowledges that you suffer from fatigue. But what’s making you tired is the question they struggle to answer. And that’s why your treatment is ineffective.
Chronic fatigue syndrome is real, isn’t it?
I get it. This is frustrating. And confusing. But by educating yourself more on chronic fatigue, you’ll better position yourself to advocate for the care you need. Talking to your doctor can be a frustrating process. I hope to make it easier for you by the end of this post.
Here are a couple more examples to help make you an expert in differentiating diseases from syndromes.
Measles is a disease because it has a cause – the measles virus. Notice how the name of the disease (measles) consists of the name of the cause (measles virus).
Without the discovery of the measles virus, the symptoms we experience when we have the measles would be a syndrome. These symptoms include:
- runny nose,
- inflamed eyes,
- a flat red rash that spreads all over the body.
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. If all of these factors are present you will receive a measles diagnosis.
Because measles has a known cause, developing a treatment becomes easier. This is why we have the measles vaccine. The vaccine contains a weakened version of the measles virus which triggers the immune system to produce antibodies against it. If you receive the vaccine and are exposed to the measles virus, your body’s immune system will immediately recognize and destroy it so you will not get sick.
If the cause of the measles had never been discovered, your doctor would only be able to treat the symptoms. You would only be able to take antihistamines for your rash and inflamed eyes, and Tylenol to help lower your fever.
This would be a terrible way to treat the measles. But this is the only way to treat a syndrome. Take medication to improve a particular symptom. Keep adding medications until all the symptoms have been addressed.
As I’m sure you already know, this does not address the root cause. And the side effects associated with stacking medications is a mile long!
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. One in seven Canadians have IBS! (3)
IBS, like chronic fatigue syndrome, has no known cause. That’s why it is a syndrome and not a disease. Without a specific cause to look for, diagnosis can be difficult. Until recently, 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. (4)
These tests are done to determine if there is a disease that is causing IBS. For example, C. Difficile infections could cause similar symptoms to IBS. However, this would be diagnosed as a C. Difficile infection, not IBS, because there is a known cause of the symptoms. You will only receive an IBS diagnosis when all other diseases known to cause gut issues have been ruled out.
As IBS does not have a specific cause, it also does not have a cure. Instead, treatment can only try to manage the symptoms. Which is why you may get outrageous recommendations from your doctor like taking an antidepressant – they’re trying anything to treat your symptoms.
Fibromyalgia & chronic fatigue syndrome:
Fibromyalgia and CFS are similar to IBS in that the cause is unknown. These conditions have a common collection of symptoms that include:
- Widespread pain,
- sleep disruption,
- brain fog.
This collection of symptoms make up the definition of fibromyalgia and chronic fatigue syndrome. Like IBS, both fibromyalgia and CFS are classified as syndromes. Not diseases.
Fibromyalgia was originally diagnosed using an unreliable test known as the tender point diagnosis. If you had chronic pain present in at least 11 of 18 areas on the body then you had fibromyalgia. Fortunately, diagnosis is now more specific. 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
This last point is key. You doctor has to rule out all other disorders before you will receive a fibromyalgia or CFS diagnosis.
Once all other illnesses have been ruled out treatment can begin. But since no one knows the cause, fibromyalgia and CFS can only be treated with a range of medications to manage the symptoms.
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 you like 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. Chronic fatigue syndrome is real. You may not know why you have fatigue, but there is a reason.
If you want help uncovering the root cause of your fatigue, I recommend starting with the food you eat! Check out my new course designed to move you from fatigued to flourishing in only a few short months!
Now, I want to hear from you!
How has a diagnosis like fibromyalgia or chronic fatigue prevented you from receiving proper medical care?
Share your answers in the comments section below!
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