What is Chronic Fatigue Syndrome (CFS)? Why Every Use Case of this Wastebasket diagnosis Needs to Go.
Chronic fatigue syndrome is a wastebasket diagnosis. There is no single definition and the term is used broadly on a vast group of patients who are difficult to diagnose.* Here is a list of all the ways CFS is used and why there are better alternatives in every situation.
1.) MECFS
2.) Misdiagnosed Chronic Fatigue
3.) Misdiagnosed Fibromyalgia
4.) Undiagnosed Autoimmune, Autoinflammatory, or infectious conditions
5.) Misdiagnosed Post Viral Fatigue Syndrome
6.) Badly Diagnosed Myalgic Encephalomyelitis
7.) A way to save money
8.) A way to dismiss patients
*Like throwing patients in the wastebasket at the end of a failed project
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1.) MECFS
The easiest explanation of what CFS is, is that it is just another name for the diagnosis MECFS where ME stands for Myalgic Encephalomyelitis. The distinguishing feature of this disease is Post Exertional Malaise and fatigue is only one or many extensive symptoms. Modern guidelines reconcile the fact that ME and CFS have been used to diagnose this condition by using the term MECFS. But if this is the case the term MECFS is a much more specific and clear term to use.
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2.) Misdiagnosed Chronic Fatigue
Why is MECFS more specific? Because many CFS diagnoses are given out incorrectly to any patient with unexplained (or sometimes even explained) chronic fatigue. CFS is a diagnosis used by doctors to tell patients "I can't fix your fatigue" often even when before finishing the basics of exclusionary diagnoses. In reality, the diagnoses of chronic fatigue or idiopathic fatigue should be used. While MECFS affects somewhere under 1 in 100 people (pre-covid) the symptom chronic fatigue affects over 1 in 10 or an order of magnitude more common. Recovery from chronic fatigue is much more common meaning misdiagnosing one as the other could drastically detach a patient's expectations from reality.
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3.) Misdiagnosed Fibromyalgia
Contrary to some beliefs current guidelines are clear that MECFS and Fibromyalgia are different conditions. But that doesn't stop many doctors from diagnosing Fibromyalgia patients with CFS. This is because like many autoimmune diseases fibro patients suffer from chronic fatigue. By the previous confusion, they are misdiagnosed. This is incredibly dangerous because the defining symptom of MECFS is PEM which is caused by exercise.
In contrast in studies where patients do not have PEM (note that MECFS and fibro are often comorbid) patients with fibro benefit greatly from stretching and controlled exercise. Therefore, diagnosing a patient who does not have MECFS with fibro can lead to worse outcomes for them. Should they be treated with exercise against guidelines, this perpetrates the myth that exercise can help MECFS.
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4.) Undiagnosed Autoimmune, Autoinflammatory, Infectious and Fatiguing conditions.
Just as fibro is often misdiagnosed as CFS due to causing chronic fatigue, so are any other conditions causing chronic fatigue. Here is an example list that is by no means exhaustive
-EDS
-Lupus
-Multiple Sclerosis
-Lyme
-Rheumatoid Arthritis
-Juvenile Arthritis
-Endometriosis
-Vasculitis
-Sjogrens
-Chronic Epstein Barr Virus
-Parasites and bacterial infections
-B12 and/or iron deficiency
-Depression
This long list and more is why you will often find alt-med or functional medicine practitioners who say that CFS "isn't real" and is always something else in disguise. So many of these conditions go undiagnosed that it is normal to discover one in a patient with idiopathic (unexplained) chronic fatigue. Note that these conditions can be comorbid with MECFS. But most often they simply cause chronic fatigue which is misdiagnosed as CFS. CFS is then used as an excuse to deny further (necessary) testing to diagnose or rule out these conditions.
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5.) Misdiagnosed Post Viral Fatigue Syndrome (PVFS)
While PVFS is often a precursor to MECFS they are not the same. A patient with PVFS should only be diagnosed with MECFS if they meet the diagnostic criteria. But because CFS is so poorly defined and often understood simply as chronic fatigue PVFS patients may be diagnosed incorrectly with CFS. This is harmful as it causes them to believe they have a lifelong chronic illness when they may not. It also leads to incorrect expectations about the recovery of MECFS patients.
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6.) Poorly Diagnosed Myalgic Encephalomyelitis (ME)
The real kicker is this: even when a patient is correctly diagnosed with MECFS, this diagnosis is muddled and messed up. Because many doctors simply assume MECFS to mean any patient diagnosed with ME or CFS all of the past examples of misdiagnosed CFS are lumped in with MECFS. This makes trials almost impossible to run properly unless better criteria are used and make a diagnosis of MECFS far less helpful to doctors who do know what ME is.
Finally, the MECFS criteria in guidelines such as Mayo 2020 or NICE 2021 while requiring PEM and being better than the non-existent standards for CFS are still quite lacking compared to robust diagnostic criteria for ME like the ICC (see past post) or Fukuda Criteria. Therefore, even if a patient could be diagnosed with MECFS they should aim to be diagnosed with ME anyways.
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7.) A way to save money
In reality, this all started in 1988 following a series of outbreaks of ME. Up until this point, rigorous academic studies had been done on ME as a neurological disease which presented many similarities to MS.
However, scientists with suspicious ties to insurance companies (source: Hummingbird Foundation, OMF, MEpedia) coined a new term following these outbreaks called CFS with vague diagnosis criteria and insinuated the disease to be psychological. As you can see from the previous slides, every CFS diagnosis whether completely incorrect or misnamed ME stops people from receiving proper treatment and saves insurance and governments money.
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8.) A way to dismiss patients
The truth is ME is not a simple or easy disease. Whereas MS made major breakthroughs following the invention of MRI, there is still no simple readily available test for ME. While much of this does have to do with the lack of funding and breakthroughs are now being made such as perfusion MRI, blood tests, and eye-tracking the fact that may hypothesize ME to have massive intracellular effects makes it difficult to see and treat.
The fact that ME has numerous triggers and no single clear point of attack makes developing drugs challenging. Add to this the confusion and misdiagnosis within the patient population and it becomes even harder.
Society simply feels are more comfortable failing people with "chronic fatigue syndrome" than we would be failing people with "myalgic encephalomyelitis." The reality is we are failing both, and the usage of the term CFS is a massive tool in the pockets of those who seek to discredit, defund, and minimize the suffering of people with Myalgic Encephalomyelitis and all others lumped into the CFS label.
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Chronic Fatigue Syndrome is a label that is ready to die. Here is why CFS hurts everyone it labels and what we should be using instead.
In honor of hitting my first 1k followers, I finally wanted to take on the topic of CFS. I generally use MECFS in my posts and the reason for that is that I do not want to alienate or blame people with the CFS label. It is often the only diagnosis available to patients and this is even more true if you are female, POC or underresourced. I thank @katie_andm.e for her great post on CFS finally pushing me to address this.
The truth is even if patients using CFS is not their fault, the term Chronic Fatigue Syndrome hurts so many people and needs to be stopped. Obviously, people with Myalgic Encephalomyelitis are hurt when the pool of research on ME is littered with misdiagnosis. But so are all the people who are misdiagnosed. People with
-EDS
-Lupus
-RA
-Behcets
-MS
-Fibromyalgia
-Lyme
-ChronicEBV
Autoimmune disease, autoinflammatory disease, infectious diseases and so many more chronic fatigue sufferers are hurt when we brush all of these conditions into the CFS wastebasket.
Finally, for people with severe ME like myself, the erasure of ME as a disease is a huge everyday hurdle to having the over 60 symptoms and extreme functional disability we suffer with recognized.
CFS started as a weapon against ME patients and it has been a successful one. It's about time we fight back.
